tag:blogger.com,1999:blog-71253549344084720492024-03-14T13:49:12.336-05:00KatyDid CancerA blog about being a young breast cancer survivor. Musings on life, chemo, being bald, taking care of small kids and trying to work through treatment.Unknownnoreply@blogger.comBlogger326125tag:blogger.com,1999:blog-7125354934408472049.post-20020458616594893832023-03-15T18:48:00.000-05:002023-03-15T18:48:30.010-05:00What We Could<p> <span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">I was sitting in the salon chair, hair wet, chatting. I thought I saw something outside, and I did a double take. Did I just see that? No, it couldn’t be. Then a woman who had gone to get cokes for the rest of the staff came running in.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;"> </span><i style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">Holy shit, there’s a woman out there who is totally naked. Not a strip of clothes on. It’s cold outside! She’s not right, something’s not right. </i><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">My stylist ran outside, joined by another woman from the shop. Three of us stayed inside, watching at the window. The women outside tried to talk to her, tried to cover her up with scarves, a coat, a salon cape. She kept walking back and forth. She was completely shaved, her entire body was clean. This was not a “street” person. She had wandered at least a few blocks like that. Where did she come from, we all asked each other. Then one of us said it:</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;"> </span><i style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">Who dropped her off there? Do you think there are other women where she came from?</i></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">Trafficking. Gang rape. Something horrific had happened to her.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">The women didn’t want to call police, not knowing what would happen to her. I knew if nothing happened soon, we would have no choice. We could not handle this. She almost got violent with the women trying to help. She told them “I’ve seen evil.” When the police did finally arrive, it was female officers—someone must have tipped them off that sending men would be a mistake. She tried to hug one officer. Oh no, we shouted, you can’t touch a cop! But being naked, she clearly had no weapons on her body. An ambulance arrived to take her away. It was the best case scenario.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">The women from the salon came back inside. They were all crying.<i> I’ve seen a lot of shit here before but I’ve never seen anything like that. She looked comatose, or like she was having a s</i><i>eiz</i><i>ure, but was still conscious. Where did she come from. Who did that to her.</i><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">And all the time, not a single man—not one, well, ok, one, offered to help. But he was black and she was white and the women told him <i>no that’s ok we’ve got it </i>and he left, relieved. A white man asked if “they needed his help.” My stylist well, it’s looked at him in disgust and said<i> it’s n</i><i>ot like we’ve got a PLAN. Do you have a plan?</i>And he walked away. Every other man who passed either did nothing, or catcalled. Took pictures! Took videos! Shouted lewd things to her. Laughed in her face. Honked their horns.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">They fucking took videos and pictures. I’m sure they posted them somewhere with their jokes. They let 3 women do everything.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">What unbearable weakness.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">And then I came home, to learn about something horrible that happened at my daughter’s high school, that involved boys mocking a gang rape survivor who was speaking to the school, both in person and on social media. The same boys who either are or are friends with other boys who have been accused of rape by girls at the school. Athletes. Assholes. You know the type. Nothing happens to them, none of them get punished. Shit, none of them even get kicked off the team. I remember that so, so well. IT continues. This time, the students, the girls, had had enough. They staged a huge protest. Hundreds of kids walked out. Some of the rapists and enablers joined the fray. Looks good on paper, I guess. Maybe the girlfriends give them points for showing up. But what else has happened? What consequences? How many boys will continue to do nothing in the face of unspeakable crimes, only to become men who do the same? Too many. So many.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">It really never has been that no one believes us. It’s that no one gives a shit. Society teaches you how little you matter, and even if you don’t believe it, it makes it hard to like other people. Men especially.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">Because they laugh, take videos, keep their heads down, mock you, threaten you, do nothing.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">My stylist said one of the other women asked her, don’t you have a client? When she was outside and she immediately said, oh, she’s fine, she’s a mom, she wants me out here. That’s right, I told her, the three of you or the three of us, someone had to go to her and someone had to hold down the fort. You better not have been worried about me.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">That naked woman disappeared into the anonymity of this city, just like where she came from, and likely where she’s going. But we tried. And an ambulance came.<br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;"><br /></p><p style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px; line-height: 17px; margin-bottom: 0in;">We did what we could.<br /></p><br class="Apple-interchange-newline" style="-webkit-text-size-adjust: auto;" />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-25690649833190427392021-05-09T20:50:00.003-05:002021-05-09T21:13:23.485-05:0015th Mother's Day<p>I've been a mother for 15 years. But I had only been a mother for 4 years when I started writing this. And only for 7 years when I started writing this all over again. Back when I began writing this blog, I did it for a few reasons: to make it easier to talk about what was happening, and as a way to leave a long love letter to my kids if I were to die before they were old enough to remember me.</p><p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh898Yr5sYTkIS91quXjEPhwBT86htuLm_sT8dXw-k68t94kwMwOE9vhyphenhyphen8E1Y3ksuQ-kVO30QAJdKaI5ETMUdZGWAtPQdw4uNG-4oedCPBo1-NXQyF97T8uatvyDRDwHaxbkYHyZ1HQsaY/s640/me11.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="454" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh898Yr5sYTkIS91quXjEPhwBT86htuLm_sT8dXw-k68t94kwMwOE9vhyphenhyphen8E1Y3ksuQ-kVO30QAJdKaI5ETMUdZGWAtPQdw4uNG-4oedCPBo1-NXQyF97T8uatvyDRDwHaxbkYHyZ1HQsaY/s320/me11.jpeg" width="320" /></a></div><br /><p></p><p>They have never read this blog nor expressed any interest in reading it. My daughter has articulated that she doesn't want to read about herself when she was younger. Behind that, I hear that she has no reason to need to read about ME when I was younger--when I was 34, or when I was 38 reminiscing about being 16, or anything else in between. She is too focused on being frustrated with me for the mother I am now, which is exactly what I said I wanted on day one of writing this--I wanted to live long enough for my kids to be pissed off at me for something other than dying.</p><p> </p><p>And here we are. Lenny is about to start learning how to drive. She's the size I was when I graduated from high school. Augie's getting braces. His voice hasn't changed, but everything else has.</p><p> </p><p>So much has happened, but the main thing, the thing that was most often left unsaid, hasn't happened, not yet.</p><p> </p><p>Years ago, when Augie was 4 and I was going through my second cancer, he let us know in a roundabout way that he thought I had cancer because I had him. He thought only women got cancer, because only women had babies. He might have been right about what caused my cancer--we will never know that, but pregnancy could have induced it. That's the reason I was told never to get pregnant again. On Mother's Day, I will always remember how I wanted to have a third child until a fertility specialist told me: "I guess you need to think about this: If things don't go well, do you want to leave your husband with two children or three to raise on his own?"</p><p> </p><p>It wasn't a fair question. But it was the right one.</p><p> </p><p>That second child had to be reassured that what happened to me was not his fault. And that even if it was, it was worth it. I told him that. I cried, in my fast, absent fashion, about the burden he had been carrying in his four year old bones. I have lived for 11 years past learning I had an aggressive form of cancer, and so have my kids. That knowledge is in the background of our family all the time, every day, like being redheads and yelling too much.</p><p> </p><p>I worry about what it has done to them.</p><p> </p><p>I try not to. I try to just focus on our lives, their growing up. I listen to my son talk to one of his baseball teammates about a game they used to play at camp, his camp, he explained, that isn't like other ones. It's a camp for kids who have a parent who had cancer. Oh, one of your parents had cancer?</p><p> </p><p>"Yeah my mom had breast cancer, twice. Once I was like 5. The other time, I think that happened before I was even born."</p><p> </p><p>And then they went off to warm up.</p><p> </p><p>These burdens we carry. What is it we wish for them? That they don't carry them too. That something amazing might happen along the way.</p><p> </p><p>That the burden would be so far in the background, they wouldn't even remember. And of course, no one remembers something that happened when they were 11 months old. But who could have guessed that it was possible that they wouldn't remember the stories either, that the guilt over being the "cause" would just be erased and transposed onto that other time, before they even existed.</p><p> </p><p>Who could have guessed? Someday, it would just be an offhand comment in the dugout in a conversation about playing mafia with college boys.</p><p> </p><p>On my best days, I think maybe I did teach them that. There was this thing that happened. Damn, it's dusty out here. Grab your bat. Let's go.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_0mGKYuBPqVIEIaDAv2XW7HAv-8oZoIdGHBU-trhmVz36GfrcnDL82rC8Pe6oAWIs8GlgRLRnHNxQofsfJN0s96jDk3dj8MnuV3hhVsnhWNeuiM_7VZ679YxugK6r8OQD2gyvt2GEDVE/s640/Augie+HR.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_0mGKYuBPqVIEIaDAv2XW7HAv-8oZoIdGHBU-trhmVz36GfrcnDL82rC8Pe6oAWIs8GlgRLRnHNxQofsfJN0s96jDk3dj8MnuV3hhVsnhWNeuiM_7VZ679YxugK6r8OQD2gyvt2GEDVE/s320/Augie+HR.jpeg" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7125354934408472049.post-42058618719887823032021-03-02T20:07:00.004-06:002021-03-03T09:28:55.411-06:00Bourne<p>I haven't written here in a year, and prior to that it was another year. I can't
count the days the way I used to for these blogpost titles. I'm not sure the
days mean anything or that time is relevant for anyone in the same way after a
year of quarantine. A year that most people thought would be two weeks, that us trauma
informed people assumed would be 4-5 months. Even we underestimated. I have been
wanting to write but unable to do so. I feel out of thoughts, out of touch,
outside of myself. And so I asked facebook friends for writing prompts. I got a
bunch of suggestions, several of which inspired me to write what I am going to
write now, which will be some kind of mishmash of </p><p> </p><p><i> genocide and pop culture </i></p><p><i> </i></p><p><i>how has the pandemic changed things for your family</i></p><p><i> </i></p><p><i>why does the question why fire people up </i></p><p><i> </i></p><p>And I'm going to do this by talking about something obvious: The movie Bourne Identity.</p><p><i> </i><br /></p><p>People who read this blog might remember that my kids go (or went, before covid took this lifeline away from them) to Camp Kesem, a camp for kids of cancer survivors. At Kesem, you take on a new identity. You have a name that you only use there, and no one calls you by your given name. My kids names are--wait, no, I'm not going to tell you that. You aren't in the club. As a parent, I was asked to give myself a Kesem name in the past, and I was stumped, so Gabe named me: Bourne.</p><p><br /></p><p>Why? (Doesn't that question rankle). He said it was for the scene in the movie when the assassins are targeting each other and the dying one looks at Bourne and says "Look at what they make you give." To my husband, somehow, that was me. Look at what they make you give! We are married because I took it as it was intended, as a compliment. We couldn't be married if both things weren't true.<br /></p><p><br /></p><p>But Bourne Identity is something else to me. I didn't even realize what until effective therapy over the last few years. As someone who multiple therapists have said DEFINITELY has complex PTSD, like the kind caused by so many different types of trauma including multiple different types of physical trauma which changed my brain chemistry, I never until recently understood my own life, hobbies and preferences for what they were. Ask Gabe and he will tell you that for as long as we've known each other, when I am really anxious, have too much insomnia, am agitated or too angry, there is one surefire way for me to calm down: I watch Bourne Identity.</p><p><br /></p><p>It puts me to sleep like a soothing lullaby. After 25 minutes I feel right with the world. I can sense the physical change in my body.</p><p><br /></p><p>Why?</p><p><br /></p><p>There's that question again. It does rankle. For years I thought, ok I'm just weird, does it matter? While Gabe is sick of seeing the first 30 minutes of Bourne for the 200th time, he's used to it, we figured it out, stop asking me! Why does it matter why? Why did I want to watch an Arnold Schwarzenegger movie with my ex-boyfriend the day after I had a gun at my head during a robbery on the green line? Why did I call him and not my current boyfriend, who was robbed right along with me?</p><p><br /></p><p>Because he didn't know me well and he might've asked me why, and I knew my ex would not. <br /></p><p><br /></p><p>So why? What is it about the movie? There are others that can suffice in a pinch: The first hunger games (the only one that works that has a woman lead). The Fugitive. The first 20 minutes of Casino Royale. But nothing like Bourne.</p><p><br /></p><p>I love to watch him leave.</p><p><br /></p><p>I love to watch him escape over and over. I love how he never even runs. He just walks away. I love that he does real things that you would need to do to get out of his absurd situations. He rips a map off a wall. He steals a guy's phone. He blows up his own car. He asks how the car handles before he drives like a maniac, not because he won't do it anyway, but so he knows what to expect. I love how he does everything alone. How he knows no one is coming. No one is going to save him. The system isn't going to work. No one is getting punished unless he does it himself. And so, his escape plans work. He escapes and keeps escaping and it soothes me like normal people's chamomile.</p><p><br /></p><p>And therapist one had told me "it's hard for you because you lack the illusions most of us use to get through daily life. The illusions that it will be ok. That people make the right choices. That we won't die."</p><p><br /></p><p>And therapist two told me "of course you love that movie. you need to regulate yourself by matching what you see with how you feel inside. you were hyper-vigilant for so many years that watching something or experiencing something calm made you MORE anxious. Seeing violence and chaos and then someone walking away from it is soothing to you, that makes sense."</p><p><br /></p><p>Which brings me to "genocide and pop culture." Why, you ask? And isn't that the question. If you read this blog, you know that I have a whole library of genocide studies. And that is not an exaggeration. You might recall that when I was in the hospital with a heart problem from chemo, a friend sent me a book about reconciliation policies in Rwanda...to help me feel better. That I used to read books about the Armenian genocide or Pol Pot's regime...on the beach. My library goes way beyond genocide and slavery though, as I love to read about acute disasters also--the Peshtigo fire that killed 2,000,the AIDS crisis, the triangle shirtwaist factory fire that killed all the workers inside, the children's blizzard where kids died walking home from school in Nebraska because the temperature dropped so severely they literally froze to death in their tracks.</p><p><br /></p><p>I'm morbid, you're thinking. I'm depressing. I'm a glutton for punishment.</p><p><br /></p><p>No, no, no. It's the trauma-informed life talking. It's the book version of Bourne.</p><p><br /></p><p>I read about these things because they happened, because they're real. Because in so many cases, in almost all cases, no one came, no one helped, even when we rewrite history to pretend they did, what really happened is people suffered and died and a few lucky people made it out. It HELPS me to understand that there is nothing UNIQUE about the ways people are terrible, the ways people deny suffering and take the side of evil over and over, not even because they agree with it, but because they are lazy or disinterested or distracted or because they think someone else is coming to fix it. When I read about disasters I get fascinated by the dumb-luck nature of how people survive. It is always a combination of someone realizing "we are going to die here, this is real, no one is coming" and becoming singularly focused on surviving AT THE SAME TIME that they have some crazy kind of luck. It is never just one. It is always both. I also love to recognize that the good things that happen in societies almost always happen as a result of complete moral failures that led to disaster and mass death. I mean, we have building codes because people died without them. We have a set of internationally recognized human rights because most societies, especially this one, would happily function without them, causing endless suffering and death. Most of the time, no one comes when you need them to--but later? Later they feel bad, and they do stuff. It helps me to see how that works, and to think--how could this be different? What if someone did the thing that needed to be done...now? What if we didn't wait?<br /></p><p><br /></p><p>It helps me to read these things because I always want to be the one to say that trauma is real. That people don't get over it. That the bad guys don't get punished. That people could make decisions that would make the outcome better...but so often, they don't. That they will blame people for saying the things I just said. That it could happen anywhere. At any time. In any society. That suffering isn't just real but is COMMON. That not all trauma is the same. But it is trauma. That many people are more afraid of trauma and people who have experienced it than they are of anything else. That people will separate themselves from people who talk about the "negative stuff." As long as I read it and I know it and I recognize it I will not be one of those people who I have been hurt by so many times--who dismiss or trivialize it.</p><p><br /></p><p>And, sometimes, or many times, it helps. In real life. In situations that aren't comparable. It helps to be the first to say "this is fucked up and won't get better and no one is coming." Because it helps me make decisions, to not get paralyzed. Enter COVID, and quarantine. And all the conversations and all the decisions, all the people telling me Katy, why are you doing this now? Just wait. It will get better. This school closure is temporary. (Gabe and I knew when it happened the kids would never go back last year. Two weeks? Society is lying to you, friends.) My own husband got mad at me several times for pessimism and decision making he thought was rash...until he thanked me profusely months later. People told me my daughter was fine, she's a great kid! Of course she's a great kid! That didn't mean she was fine. Why do people think you can't be resilient and depressed, a trooper who isn't fine? I could see it. Early. I wasn't interested in telling her she was resilient or dismissing her issues or saying it was a phase or she'd get over it or that she needed to learn a lesson or maybe failing would be a good slap in the face. NO ONE WAS COMING. No one but me. After all the trauma I've been through, after all the things that had happened by the time I was her age, after an adolescence where I never felt young, a childhood where I was so often not a kid, I can't tell you how much it HELPS to finally hear her say things about what is going on with her, even when she is screaming in my face about it. That is how I know that doing all the things I did, no matter how much people rolled their eyes at me like I was some helicopter parent of a special little snowflake (ah, empathy, that ghost), it worked. Name it! Say it.<br /></p><p><br /></p><p>Admit it's happening. Ignore all the people who will tell you your hard time isn't hard enough, even as they've been hanging out with their extended families and podding with their BFFs inside while you can't do that, your mom is the cancer mom, who wants to be the one putting her at risk? And you can't have the illusions, you know both that people die from things they shouldn't die from AND that when you're at risk of dying you have to live your life. The pandemic doesn't mean life stops. Life doesn't stop for cancer either, or war. It doesn't mean that "little things" don't matter. They DO matter. All the time. When I had an aggressive form of cancer, there was no "all that matters is surviving." I still had to do all the things. I still couldn't stand tripping over my husband's big ass shoes. Life was big and it was small. It was impossible and it was easy. I had to change everything on a dime, but that's what you do. I had already done that so many times, it came naturally.<br /></p><p> </p><p>Throughout history, people have gotten through trauma in one way and one way only: by DOING something, with other people. Isolation has never healed. And when it is JUST you, no one ALLOWS you to isolate. When I was the only one at risk of dying from germs, the world cared not one bit. Smile, Katy! Keep doing all the things! I said once that cancer changed everything about my life while I remained the same exact person doing the same exact things. How do you walk around as if the world could kill you at any moment? Well, you take some precautions. And then you walk around. You might have trouble talking to people though. You might never really tell them how you feel, what happened to you, how it is. You might expect them to dismiss you if you say you aren't FINE. You might expect them to think you are a bitch who COMPLAINS. So you retreat and do your thing. <br /></p><p><br /></p><p>You don't just walk. You rip the map off the wall first. <br /></p><p><br /></p><p>You meet someone, or at least two someones really, who won't pity you. Who won't ask you to change your response to all the traumas. Who will just not drink around you, for instance, because he figured out early on you hated him when he was drunk and so instead of asking you to FIX yourself, instead of asking WHY you don't like drunk men, he just, you know, stopped drinking. Forever. Without saying anything. Who will just ask ok you still can't sleep? working out didn't work, sex didn't work, bourbon didn't work? God fine, ok, I know what will work.<br /></p><p><br /></p><p>Does it matter why it works? Well, actually, it does. That is the nature of why. It matters. But not in that moment. WHY doesn't always matter WHEN. In that moment what matters is that someone was there, someone acknowledged, someone didn't tell you to get over it or that you were damaged or that that was the wrong way to cope.</p><p><br /></p><p>He just queued up Bourne Identity to lull you to sleep.<br /></p>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7125354934408472049.post-40447044941052280242020-03-22T21:06:00.000-05:002020-03-22T21:18:02.313-05:00PandemicI haven't written here in more than a year. There are a lot of reasons for that. Maybe as I resurrect this blog to write about this pandemic we are hopefully living through, I will begin to tell you why. But in the meantime, I am no longer numbering the days of my post titles, and I am no longer writing about cancer, to the extent that I was ever writing about cancer. Suffice it to say I am over six years out from my second cancer diagnosis. It is almost ten years now since I was first diagnosed. I have lived a lot longer than some, and have a more diminished life expectancy than many.
<br />
<br />So it goes.<br />
<br />
I am resurrecting this blog in order to document some of what life is like under this worldwide pandemic of COVID-19. I live in a suburb of Chicago. My town was the first in Illinois to declare a shelter in place order, effective two days ago. The entire state of Illinois followed suit the next day. A week prior to the order, our kids' school district shut down, and my husband was ordered to work from home indefinitely. As for me? Well, my timing has never been great. I quit my job right before all of this happened, and I did that without lining up another. It is a long story that I won't tell here, but I was extremely happy with my decision. However, my last day was two weeks before our shelter in place order. The world looks as if it is going to spiral into a great depression, and quitting a job now seems like...well, I was going to say like a terrible mistake, but I don't mean that. It was the right decision at the time. I live in America, in Trump's America, and none of us knew, because our government refused to tell us, exactly how bad this would be. I believed this pandemic would reach us back when I heard about it, in January, but I did not know, nor could I know, that our federal government would do nothing at all to contain it.<br />
<br />
And so here we are, seemingly on the precipice of this great change, this time that demarcates "before" and "after." And this feels like these massive changes feel, every single time, as I have been saying they feel.
<br />
<br />
It is terrifying. It is boring. It is absurd. It is mundane. It is life-altering. It is Sunday. It's just life, a new version.<br />
<br />
If life were different, my family would be in Mexico right now, enjoying spring break. If life were different, my two kids would be able to enjoy everything that graduating from their respective schools would entail: my daughter's first dance; her likely success in finally making state in track (she made state all three years in cross country in middle school); going to Six Flags with her class; wearing a cap and gown and walking across the stage at the high school. She would be finally learning how to talk to boys, planning her first high school class this summer, running with her team every day. And my son, who would be graduating from grade school, would be able to play Young Simbaa in the Lion King, the White Rabbit in Alice in Wonderland, Jack in his school musical's version of nursery rhymes; perform with the Chicago Symphony Orchestra with his choir, continue with travel basketball and soccer, hone in on his switch hitting skills in baseball, go on a school field trip to an overnight camp, and take a cruise on the Chicago river with his class after graduation. They would both be able to look forward to their favorite week of the year, Camp Kesem, the camp for kids with a parent who has had cancer.<br />
<br />
But none of this is going to happen. And that is what is hitting me hardest about how this has affected my family. I also mourn what I would be doing right now, in my precious time off, that I have never had in 23 years of working, through cancer and all the rest of it: I would be attending all of their events, games, meets, performances, with no work schedule in my way. I would be getting, after all of these years...a break. But it wasn't meant to be. I am sad for them and the normal childhood things that they will miss, because I know that the little things are the things that matter and make up our lives.<br />
<br />
I am not anxious, or scared, or worried, really at all. That is not because I do not believe this pandemic will be catastrophic, both in terms of lives lost and in economic terms. It is not because I believe that I will not catch the virus, or that I will definitely survive it if I do. It is not because I do not believe my family and friends will get sick. I am living in a firm version of reality, but I know this--there is little to nothing I can do about any of it. Yes, I can follow the rules. I can stay away from people and keep my family away from people. But in no universe do I believe that means we will be immune to this. As I said for years, for my whole life really, you can do everything right, and end up in the crap end of the statistics anyway. I did with cancer. There was an absolutely tiny chance of me getting TNBC at my age, with my total lack of risk factors. But I did. And then I did--again. My chance of recurrence was about 3-5% after my first cancer, and I was in the 3-5 three years later. After my second, it went up to 15-20%, and here I am six years later, somehow doing just fine. If 40-80% of us are getting this, well...as I said, here we are.<br />
<br />
I am good in a crisis, comfortable in a situation when the world spins upside down. I know how to be a stabilizing force in a sea of confusion. I find myself curious about how everyone is so upset and anxious. I lived my entire life in a constant state of hypervigilance, and felt most myself when I had something massive to fight or at least focus on. Two and a half years of trauma-based therapy and anti-depressants have enabled me to see how normal people live--how people actually just sit on a couch, without getting ready to flee, how people don't feel rage all the exhausting time, how people can live without constantly trying to distract themselves from the reality of their lives. And yet...I have not LOST those tools. I can still use them all, I just don't HAVE to use them to get through a normal Tuesday. I have them all now. I know how to do this--except for one thing.<br />
<br />
I am used to "this" being me, not everyone around me. I am not used to all of society having to learn how to cope.<br />
<br />
I know how to be isolated, in my mind, for sure, but also in reality. I spent three months at 9 years old confined to one room of my house, unable to walk, needing help to move so I wouldn't get bedsores, being carried onto the portable commode in our living room so I could use the bathroom. I missed half of fourth grade because no law guaranteed me an education in 1984. I didn't see friends, and there was no technology to keep me connected to anyone. I was on bedrest for the last month of my first pregnancy, living alone, with a husband who worked hours away and a directive not to drive. I became heavily socially isolated by cancer, lost a lot of friends who had trouble dealing with it, especially the second time around (I also became less tolerant of people's discomfort, and isolated myself at times).
<br />
<br />I am an introvert who has become an absolute master of introversion in the last several years. I am a person who has managed to have high-profile, remote jobs that enabled me to work from home full time or nearly full time, for the last seven years. No amount of being alone in my home could faze me (though everyone else being here too? That's different). A childhood and adolescence filled with various and complex traumas--acute and ongoing--taught me to live a different life in my head than I lived out in society. I learned how to live with the possibility and reality of worst-case scenarios. I learned not to worry.-, not exactly. I became like the Russian spy in that movie with Tom Hanks, Bridge of Spies. When he is asked if he is afraid to die, if he is afraid of prison, if he is worried, he responds each time: <br />
<br />
Would it help?<br />
<br />
No, it wouldn't. And so here we are. Life will likely never be the same. I don't know what it will be like; no one does. But there was a before, and now there is an after. Will my kids ever go to school, play sports, attend dances, go to the movies with friends? I have no idea. Will any of us office workers ever actually work in an office again? Will public transit continue to exist? Will we go from being upper middle class to being poor? Who knows. We have, Gabe and I, been there before and we could do it again, but our kids have not, and I hope that doesn't happen. Will any of us die? I hate saying this, I do, I do, but I do not know. I know this.<br />
<br />
We cannot control that outcome.<br />
<br />
I mourn the little things, and the big ones, the known and the unknown. But only briefly. I am busy. My kids are very resilient and understanding. This notion that young people do not understand the gravity of our situation or feel immortal simply doesn't apply to my kids. They did not question the decision weeks ago to cancel our trip to Cancun. They have learned to zoom and skype and facetime with friends. They have learned to play poker, and to bet, because that is what we came up with as far as useful things to teach them during shelter at home. They like each other, they even seem to like us. We have a brand new puppy, something I never thought would happen (a story for another post), and he is keeping us entertained.
<br />
<br />
I don't know what the point of this meandering post is, except to say that I am documenting being at the beginning of a massive shift in the world, and I feel fine. I am not in denial, my family is not in denial. I cannot speak for how they feel, I have never attempted to speak for anyone but myself. But I feel calm, and ready. Prepared? No. There is no way to adequately prepare for something that has never happened, so I do not dwell on trying.<br />
<br />
We are living through a pandemic--hopefully. It's officially spring but it's snowing. My daughter turned 14--14! two weeks ago. I have a dog. My son sang a solo in a<a href="https://www.youtube.com/watch?v=uKuYXNLGlOc"> commercial </a>that aired in times square on New Year's Eve. I am writing this while my family plays Yahtzee downstairs. It's Sunday but the days all run together. It's 9 pm, but that doesn't mean much anymore. I am 44 years old and a stay at home mom for the first time in my life. I hope that changes soon. I hope a lot of things change soon. But who knows?
<br />
<br />
Who knows?
<br />
<br />
I have time on my hands, so I will come here and talk it out. I hope you do the same--document this moment in time. In the best case scenario, all of this will seem dramatic and unnecessary. And in the worst case?<br />
<br />
I didn't spend a lifetime curating a personal library of human disaster for nothing. Someone has to tell the story.
Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-7125354934408472049.post-85878473391335806162019-01-09T20:11:00.001-06:002019-01-09T20:40:03.969-06:00Day 3,039: Deep Breaths
I can’t take them anymore, most of the time. This has been building for years. I can’t do some of my best things anymore at all, like spinning. If I spin, I spend the next two hours completely breathless, wheezing, coughing. If I take a walk in the cold, I can't breathe all the way in. It's terrifying. My favorites are my enemies, now.<br />
<br />
One thing I have learned in therapy is that I am a good gauge of many things—decidedly not including my own physical pain and suffering. I just adapt and move on, without seeing the change as a problem. It isn’t denial. It’s a broken adversity switch.<br />
<br />
There’s a lot of backstory here, but I’m not going to tell it, not today. I will tell you some things that are true, as I promised when I last wrote here, six months ago. <a href="https://katydidcancer.blogspot.com/2018/07/day-2858-true-story.html">I’ll tell a true story. </a>I’ll tell a story that conveys something more than nothing.<br />
<br />
Here goes.<br />
<br />
It isn’t the obvious thing to go to the doctor when you can’t breathe. Not when not being able to breathe means you might be dying, albeit slowly. No, really, this is true. If the reason you can’t breathe might be that your breast cancer has metastasized to your lungs, in which case your cancer would be incurable and deadly 100% of the time, making that appointment isn’t obvious. Why not?<br />
<br />
Because it wouldn’t matter. Because it wouldn’t change anything. Because sometimes knowing something puts you in the final when you’d rather be stuck losing the playoffs for a while.
<br />
<br />
Because you, and you, and you too—you can all go get a chest x-ray, a CT scan, an MRI. I can’t. Of course, I can. But it’s different for me. For me, it’s to find out if I’m going to die or not. Imminently. Slowly, painfully, but at the same time too quickly and not horrendously enough to want it to happen just to get it over with, not at 43.<br />
<br />
Sometimes, you wait. Because it’s your son’s birthday. Then your husband’s, then, somehow, yours. Then, it’s Halloween. Then, it’s Thanksgiving, then Christmas. Because of vacations, or things to look forward to—none of these are the times you want to learn there won’t be much more of this. It’s never the right time to learn you’re going to die.<br />
<br />
So you wait. And then, you pick up the phone before you can stop yourself, just because you have a break in your work day, and call your primary care doctor—not your oncologist. Before you can stop her, the receptionist makes an appointment for you—for two hours from now. For today! And you can’t wait because you opened Pandora’s box. You go, you talk to the doctor, she is new to you and sympathetic and you almost feel sorry for her when you ask her if she knows about your cancer and she says, not quite awkwardly, “yes, yes I know.” You tell her, “well someone like me—I want to find out if other things help before I do the chest xray.” Your argument is understood, and rejected. Within another 30 minutes you are getting the scan. <br />
<br />
This is not how you expected to spend your Tuesday.<br />
<br />
But it’s done, and there’s nothing to do but wait. They should rename cancer “The Waiting.” You don’t even try to work. You eat sushi. You overhear young men talking about their muscles, their gym time, and you find yourself enraged at them, so insufferable and so obvious in their insufferability. You hear the word “pecs” and you turn all the way around and glare.<br />
<br />
You tell a few people. They say the same things. “I can’t imagine.” “How do you do this? “How do you feel?”<br />
<br />
You want to be honest, but it’s hard.<br />
<br />
You don’t feel anything. It’s been years, years before cancer even, since you felt the things that other people feel.<br />
<br />
You are anxious, but how different is it than the hypervigilance, the constant desire to escape, the tweaking you have felt for decades?<br />
<br />
You aren’t in denial. You are actually in the opposite of that—deep within hyper awareness.<br />
<br />
And you have an important decision to make.
<br />
<br />
How do you spend what might be the last hours that you have in your life before you learn that you’re going to die?<br />
<br />
Well, I already told you. It was a Tuesday. There was sushi. And annoyance. There was me, telling my husband he had to make dinner, telling a friend I wouldn’t be good company, looking at my kids and thinking how young they are and how much I’d like to see them grow up.<br />
<br />
I didn’t feel rage or sadness or grief. I don’t feel those things, not so well, not anymore.<br />
<br />
There was the twinge of acknowledgment that tomorrow, now today, would be the five year anniversary of the last chemo. Five years post treatment is supposed to mean something. They call it a milestone.<br />
<br />
Three years was one too, and it was after that that cancer came back. Statistics and odds are just that—no one ever said you had to be on the right side of either of them.<br />
<br />
There’s this: there’s no reason this wouldn’t happen to you. There’s no reason this happens. This isn’t about reasons. If I had to give this blog a tagline it would be:<br />
<br />
“Life isn’t about what you deserve.”<br />
<br />
So, how do you do it? The only way you can. You make other people do things your way. You tell the doctor no, she cannot give the results via the online portal. You tell her to call you, no matter what. She touches your shoulder, something you would never do. She says “OK. I can imagine you want these results ASAP.”<br />
<br />
That night, she calls and leaves you a voicemail. And an email. And she says “I didn’t want you to spend all night worrying. Your chest xray was normal.” You thank her and she writes “I can’t imagine.” You don’t tell her why she needed to call you, because she knows some of it but maybe not the rest. If they only call when it’s bad news, you know it’s bad the minute the phone rings. If bad news means imminent death, and you tell them to call you regardless, there are a few seconds there where the game isn’t over yet. You need those seconds. You deserve them, even if this isn’t about that.<br />
<br />
She can imagine, and she doesn’t want to, and you don’t blame her.<br />
<br />
While you’re waiting for the xray your husband does what he does and texts you random articles to distract you. You don’t read them. You tell him that. He then asks something you aren’t expecting. He says he can’t believe it’s going to be that news, Bourne. But what if it was, or if it wasn’t, what’s on your bucket list? Should we just be doing that stuff anyway, regardless? And you tell him the truth.<br />
<br />
Your bucket list is not to die, not yet.<br />
<br />
That’s a true story.<br />
<br />
<b>Bucket List<br />
By Katy Jacob <br />
<br /></b>
a turtle caught near the lake house<br />
that was someone else’s lake house all the time<br />
except for a week each August in the early eighties<br />
and kept in a bucket until Chicago <br />
didn’t even survive the night,<br />
drowned in its own vomit,<br />
the Jimi Hendrix of turtles<br />
before you even named it,<br />
is the only thing you ever think of<br />
when someone says “bucket list”<br />
and they mean what would you do<br />
if you could do everything differently<br />
and of all the possibilities<br />
you think only of the turtle climbing out<br />
of the bucket in defiance<br />
and living for a few days in the grass<br />
or at least dying with a lot more dignity<br />
you think if you’re being honest<br />
the only thing on the list<br />
is a cold-blooded escape<br />
from a place that you <br />
were never supposed to get out of alive<br />
even if it housed you<br />
with the best of all intentions
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7125354934408472049.post-67226597813297711712018-07-12T16:57:00.001-05:002018-07-12T16:57:54.937-05:00Day 2,858: A True StoryToday as I sit here writing for the first time in six months, I wonder if I remember how to do this.<br />
<br />
And I realize that I do, but that I am not going to do this the way I did it before. That is probably as good a thing to write about as any, after all this time.<br />
<br />
I have been meaning to write for so long, but I have had no real desire to do so. Today seems important, though.<br />
<br />
Five years ago today, I was diagnosed with a rare and aggressive form of breast cancer--for the second time. I had survived past the crucial three year mark with no evidence of disease, albeit barely. I was re-diagnosed 3 years and 2 months after my first diagnosis.
<br />
<br />
You could go back and read what I wrote at that time. For the first few months of my new cancer, this blog took on a life of its own for me. I have never been well known, but in comparison, it seemed that so many people were reading it. And yet...well, that is what I will write about today.
<br />
<br />
Five years is significant. Five years in the world of triple negative breast cancer is a milestone. Five years is a cause for celebration. Five years is a Thursday. Five years is a busy day at work. Five years is my kids watching Netflix while I write this. Five years is it's too hot to cook. There is no way to explain to friends, family, or strangers what five years of life you didn't expect to get is like, or what it is like to not expect it, or how it has changed you, or why it matters or doesn't matter.<br />
<br />
Or is there?<br />
<br />
In the blog post before last, I wrote about my depression. Or, at least, I used my depression as an artistic vehicle to tell the story I wanted to tell. I am reading a book right now that I am truly in love with, called the Girl Who Smiled Beads by Clemantine Wamariya. It is the story of a girl who survived the Rwandan genocide at age six, became a refugee in seven different countries in seven years, eventually landed in the Chicago area and went to Yale. But it also is not that story at all, because that sentence tells you nothing. It is so well-told, so real in her rendering of how she actually experienced the events that turned her life into a cruel, mundane, beautiful absurdity. It is a story I relate to, when she describes her coping mechanisms, and that I feel guilty for relating to, though not really, because guilt is an emotion I lost somewhere along the way. In this wonderful book, the author says:<br />
<br />
<i>I told a true story. I told a story that conveyed nothing.</i>
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<br />
And that--that is what I did, in some ways, for almost 8 years when writing this blog. I told true stories. I never said anything here that wasn't true, real, and based on my own experiences. And yet. What did I say about myself? What did I say about my family, my disease, what did anyone learn? I used my experiences to make the points I wanted to make--about society, about illness, about death, about injustice and the false meritocracy. I wrote words that moved people and inspired them and helped them even, most importantly, in the case of women with cancer who were aided by this blog. I wrote words that created a space between my actual life as I was living it and the part I was willing to share.<br />
<br />
I told a true story. And in some ways, I told you nothing.<br />
<br />
I wrote about my depression when I wrote about my daughter running. I sort of explained how medication brought me to a point of being able to do something useful about the 30+ years of PTSD or whatever you want to call it that I have learned to function with, that I have used to my own benefit. It was only when it became unmanageable to need to escape all the time--when I had a third cancer scare that turned into nothing, and I had prepared myself for a fight that didn't come, and then I had no idea what to do--that I needed intervention. It is one thing to have a fight and flight response when it helps you, even when you are fighting and fleeing your own body. It is another thing when you are sitting in your cute house in a bucolic neighborhood with your charming family and stable job and husband who adores you and that instinct is in hyperdrive. What is there to fight? To flee? That is how you find yourself refusing to eat, crying uselessly on the couch, wanting to get a divorce, quit your job, and move out of state all at the same time--just to escape.<br />
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I wrote about that, but not really. I don't really know if it's worth writing about--maybe it is. One thing that is worth relating is a conversation I had with the psychiatrist who helped me figure out my dosage. I have a therapist, my gynecologist got me the prescription--but I needed an expert to help dose me. So I met with this woman. She needed to know something about me. She asked me some questions. We didn't have much time. I figured I should give her the major highlights, leaving out almost everything that I thought was relevant. And so I told her about just the physical trials related to accidents or disease. I said <i>well. I had faced death five times by the time I was 40, twice by the time I was 10. I sometimes wonder if I have a chip missing because it is hard for me to feel certain things. It is easy for me to feel empathy and hard for me to feel sympathy, for example. I don't know if it matters that I am like this. It is hard for me to feel that some things matter, including me.</i><br />
<br />
And this quiet British woman earned her title and her salary by breaking something down for me after the long pause that followed my introduction.<br />
<br />
<i>Well, I wouldn't expect you to be different. It is like when people survive wars and are then expected to focus on regular things, or when people experience intense pain and cannot sympathize over a paper cut. You do not have a chip missing. You just are not living with the same illusions that protect most people from feeling as you do.</i> <br />
<br />
What illusions? She began:<br />
<br />
<i>The illusion that life is fair, that you are in control, that you won't die. You know these things are false, and you know them every day. Many people still have the safety of those illusions.</i><br />
<br />
And in my mind I continued: <i>the illusion that someone will save you, that you are important, that anyone isn't important, that suffering isn't real, that people get what they deserve, that things will be all right.</i><br />
<br />
If this sounds depressing, understand this: it isn't, at least to me. This is not pessimism. This is an understanding of how suffering is the reality that ties people together, and that suffering is unique, personal, constant, global, and uninteresting. The statement of illusion is a soundbite describing this blog, and why I wrote it--and why I stopped.
<br />
<br />
I stopped writing because I no longer wanted to write a true story, but one that revealed nothing. And yet, I could not imagine that anyone would want to read a true story that revealed anything real about me. I also did not want to give up the right, the gift that I have, to craft my true story to read as I want it to read without allowing anyone reading it to get inside me--inside my body, my brain, my memories, my stories. I have always written words that allow me to keep my experiences, memories, and sense of self as mine. You cannot read my words and tell me my story isn't true, because I do not give you enough rope to hang me with. You cannot read my words and tell me that you believe my words but think they are irrelevant, because I crafted them to make it clear that I am not asking your permission for relevance. <br />
<br />
I am expert at this--and for good reason. The closer I got to telling a true story that revealed something of me, the more it alientated people from me. I would write something raw and I would get messages: <i>Katy, you sound angry. Katy, I hope you get back to being yourself. Katy, I stopped reading because you got away from sounding like a fighter.</i><br />
<br />
And I wrote anyway, because I was writing for an audience of two. I was writing a memoir and a life lessons manual for my children. This had the added benefit of the fact that neither of them, to this day, has ever read a word of this blog. So I was writing for an intimate audience whom I expected to read this once I was dead.<br />
<br />
Obviously, if I stop doing that, this will be different.<br />
<br />
And I am going to try.<br />
<br />
Because I am still here--8 years later, 5 years later. This country is now a living and breathing example of all of the illusions that none of us can afford to live under anymore. And if life is to be absurd, and unjust, and out of control, and if we are all to suffer but not to equal extents and if we are all adrift but some with anchors and some without, why not write a true story, one that conveys something?<br />
<br />
This is my explanation. That is what I am going to do. It might be self-indulgent. I don't care. The self is what we have left, and what we never had. It's worth writing about, especially when its existence in the corporeal world continues to take me by surprise.<br />
<br />
I'm going to try to start writing a true story--about me. If nothing else, it will be a new escape. Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7125354934408472049.post-16270952524443250442018-01-13T12:09:00.000-06:002018-01-13T12:09:26.569-06:00Day 2,678: Standing UpI haven’t written in a long time. There are a lot of reasons for that. The main one is that I finally realized I was in the throes of a crushing depression, and I needed specific intervention. The light went on when I realized I had finally managed to lose a few of the 10 pounds I had wanted to lose—because I was too apathetic to eat. I found myself crying, an alien scenario for me. I didn’t want to do anything or see anyone; I wanted to flee, to get a divorce, quit my job, move. My anxiousness and restlessness were at fever pitch. I knew I did not just need therapy. And so, I, the person who hates taking medication more than anything, asked to go on antidepressants. I asked my gynecologist. If you read this blog, you won’t find that odd. Within five days of taking 10 mg of Lexapro, I was baking a cake. I felt like a totally different person. Three months in, and the difference is astounding. The fatigue, loss of libido and even the possibility that this drug is destroying my liver (since I was on liver-killing anticonvulsants my entire childhood and I took liver-altering chemo as well) have not stopped me from thinking the drug in some ways has saved me.<br />
<br />
In a sense, Lexapro made it possible for me to help myself in other ways. At the same time, I started going to a trauma-based therapy practice—the first time I have ever found therapy to be useful. This was after I read an article about trauma-based therapy and saw that I had not one or two but at least five different categories of things that qualified me. I also decided to stop drinking, and I never even drank much. I did all of these three things at the same time. And I came to realize that I had been living under a continuous haze of PTSD, not since cancer—for probably at least 30 years. Do not think I am being dramatic or seeking sympathy. I have learned that coping mechanisms are just that—they can be extremely positive. I have learned a lot of things about myself now that the chemicals have released me from decades of constant agitation, anger and furiously-driven purpose. I have been able to sit back a little, and reflect.<br />
<br />
I will write more about all of that in another post. Today, however, I want to talk about something else. And I haven’t written in a long time, so it will be a long one.<br />
<br />
The last week has been filled with the same public insanity and inanity that has become our common culture. The person who is representing our country to the world berated an entire continent and two unrelated countries, all of which are populated by mostly black and brown people, as shitholes, while opining about Norwegians helping him fulfill his Aryan race fantasy. At the same time, the #metoo movement collided with the equal pay movement in an absurd situation in which one male actor made $1.5 million while the leading female actor in the movie made $1,000 for a reshoot that had to take place because one of the other actors was a pedophile and sexual predator. The male actor waited for all of his coworkers to make a deal to get the project completed, threatened to refuse to “authorize” the use of the replacement actor who could wipe the floor with him from an acting perspective, and then negotiated his deal. That guy also, incidentally, has a past history of violent hate crimes against black and Asian Americans.<br />
<br />
Welcome to America.<br />
<br />
I have been involved in multiple social media discussions about both of these issues. Until reading a recent piece in the Washington Post, I could not exactly put my finger on what bothered me so much about the confluence of these two events. One has a much greater global impact, obviously. They seem completely unrelated. So what did I see in these events that brought out some of the old anger that had driven me my whole life, until I got this short reprieve?<br />
<br />
It is the way we reward terrible behavior—not the way we forgive it, or look past it, but the way we reward it. <br />
<br />
We really only do this with white men, as a rule, but it is that which infuriates me. I have listened to so many (usually men) tell me that an actor who uses others’ generosity to get something for himself is just a good businessman, that his manipulation of others’ goodwill is nothing but a pointer to how weak and ineffective and stupid the people (women, often) on the other side must be. We have to hear our political leaders defend the indefensible by saying everyone talks that way, which is not only not true, but even if it were, is not something to find admirable. An actor, I should understand, is not working for a charity project, or a nonprofit organization (and always the sneer that I hear, and have always heard, including in my professional life, when people say “charity” and “nonprofit”). People need to make money, Katy. And, apparently, people who are mediocre need to make 1,000 times more money than every single one of their co-workers, or they need to become president—not because they deserve it, but because their lack of deserving it and asking for it anyway somehow MAKES THEM DESERVING.<br />
<br />
We did not elect an unrepentant racist and white nationalist to our highest office by accident. We did not put a serial sexual predator, a noxious misogynist, a toxic xenophobic, in the Oval Office because we as a society looked the other way. People ADMIRE those traits about the current president. The worse he reveals himself to us, the more there is a subset of society—or maybe a bigger part of it than that—that is thinking, this guy is so bad, it must mean he’s better than the rest of us, because he’s getting away with it.<br />
<br />
He profited off of the foreclosure crisis and discriminated against minority buyers—he’s a shrewd businessman trying to get his! This other guy asked for a pardon of his detestable hate crimes so his restaurant business could be more profitable—you can’t hold that against him! Their total lack of concern for other people or how their actions impact those in close proximity to them cannot be—gasp—used to form negative attitudes towards them or think they are terrible people. Of course not! We can only use past incidences of rich white men being terrible as a way to slyly laugh about them and denigrate their accusers and detractors.<br />
<br />
It is not only not acceptable to formulate negative opinions of (certain) people who have done selfish and destructive things—we seem to have a masochistic need to reward these people/often men. We promote them. We elect them. We defend them, when they don’t deserve it. We see a man treating people horribly in the office and decide, well, he must have some leadership skills! We put narcissists in charge of the courts, brutes in charge of companies, corrupt sycophants in charge of large school systems, psychopaths in high offices. <br />
<br />
And even that is not enough. We have to--to justify this--denigrate people who object. People who work together or forgo salary in a collaborative moment in response to a terrible situation are idiots, weak, losers, they have no idea what they’re doing and they make terrible decisions. People who decry the depravity and sophomoric language of an abusive and racist blowhard are lazy, out of touch, liars, and in denial about their true feelings.<br />
<br />
What is required of detractors, apparently, is forgiveness—we must forgive all of these men their sins, no matter how destructive, violent, abusive, selfish, or impotent their actions are, we must forgive. In fact, the worse the behavior, the more we should praise them, because look how far they’ve come! They’ve made a lot of money, gained a lot of influence, they are laughing all the way to the bank! Well, of course they are—because we are driving their Uber to the bank for them and thanking them for the privilege when they stiff us as they flee the car. We are rewarding them for being terrible. And you know what? We should stop.<br />
<br />
There is no situation in which you are successful, or happy, or healthy, that should bar you from thinking about other people and, yes, even putting them above yourself. There is no situation in which you are unlucky or suffering in which you should get a pass for using that bad situation to make things worse for other people. And there is no world that I want to be a part of where charity and compassion are four letter words and greed and egomania are blessings.<br />
<br />
I’m sure, like many things I’ve written here, this seems like a long diatribe of seemingly unrelated words that I’m using to denounce perceived injustice. And that’s probably true. One thing I have learned about myself from therapy is that it is, actually, difficult for me to feel certain things; this includes the fact that it is difficult for me to feel that my problems matter. I have written for years about cancer without really writing about it, I’ve used this forum as a way to write about social injustice issues that matter to me. I have used my experience to illustrate my points because that is actually how I view my own experiences—as objective examples that are useful to make a broader point. You might have noticed that in all of these words, there is not a lot about how I FEEL, but a hell of a lot about what I THINK. Such is the nature of the person I have become.<br />
<br />
And why the preceding paragraph? Well, because I am going to do what I do. I’m going to use a personal story as an example of why we should not reward selfish behavior.<br />
<br />
As a kid, as you all know, I had epilepsy. To make a long story short, when I was 8, a doctor whom I now believe was somewhat of a sadist, kept me in the hospital for a week doing tests on me like a guinea pig because he would not admit that my body was having a toxic reaction to my toxic medication. That whole story is for another day. Today, for the first time, I can say something about one of the most traumatic things that happened to me due to my chronic medical condition as a child. I am convinced that children with such conditions learn early to disassociate themselves from their bodies (and not, necessarily, in a bad way—again, that is for another post) because they are forced to relinquish control of their bodies to adults and agree to do absurd and painful things. In this instance, my neurologist decided he needed to give me a barium enema, to try to diagnose an abdominal condition that he most likely knew did not exist.<br />
<br />
I was 8.<br />
<br />
If you aren’t aware of what this procedure is, it is a large amount of barium inserted into your rectum. I might have weighed 40 pounds when I was 8. To get the procedure, I was put into a communal room with others who were having barium enemas, separated only by hospital curtains. Two adult women were before me. I sat there, patiently, listening to them screaming from the pain of the procedure. They both just screamed and wailed. I knew that what they were experiencing was coming for me, with no way to prepare myself for the pain, and the disadvantage of being a quarter of their size.<br />
<br />
Then, it was my turn. The pain was so, so unbearable. It took my breath away.<br />
<br />
And I did not utter a sound. I did not even cry, except perhaps silently.<br />
<br />
I told my therapist this story, because I thought it represented something about the way I have handled things in my life—for better or worse. But then she asked me a question that took me by surprise. She asked me how it made me feel. How what made me feel? How the women screaming made me feel. I could tell, when I answered and saw the look on her face, that she had expected me to say “it terrified me, it made it so much worse.”<br />
<br />
Instead I said: it made me so fucking angry. I could not believe they could be that selfish. How could they scream like that, knowing other people , including a child, were about to have the same procedure? How could they be so focused on themselves? I decided right then and there I would never be like them, that I would never be that person.<br />
<br />
I am not here to say whether or not my reaction was the right one, or a healthy or normal one. I don’t know and it doesn’t matter. I do know this. Decades later, when I was getting chemo for my second cancer, and a woman who had refused to get a port even though she hated needles was screaming bloody murder about their IV attempts and causing a huge scene, I remembered being 8 years old. I got up from my chemo chair with the needle still in my arm and wheeled my IV stand over to a nurse. I told her to get that woman the hell out of the communal chemo area. Give her her own room. Make her family of 7 leave (most people were there with no one or one other person). I was furious. I said, I have done this 15 times. But other women here have never done this. They are already terrified. She has no right to be here, getting special attention from four nurses, while other women are silently enduring her screams, imagining how awful chemo will be.<br />
<br />
She has no right.<br />
<br />
And she didn’t. and he didn’t, and he doesn’t, and he doesn’t. We must stop rewarding people for being self-absorbed and injurious to other people. We must start rewarding people for being thoughtful and empathetic, for thinking of others first. And if we, as a society, cannot do that, then we, as individuals, had better get up out of the goddamn chair and say something.
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-37809528002157931732017-10-09T21:54:00.000-05:002017-10-09T22:34:11.477-05:00Day 2,582: RunThis post, which comes after the longest hiatus I've taken since starting this blog seven and a half years ago, is written in the style of
<br />
<br />
Things I said and did (followed by)
<br />
<br />
<i>Thoughts that went through my head</i>
<br />
<br />
I signed you up for cross country, because you love to run and you're good at it without half trying. I encouraged you to go to the optional practices over the summer. I got you contacts, so you wouldn't have to run in the rain with glasses, though it didn't rain, not once in two months. I even managed to become part of a carpool.
<br />
<br />
<i>This way you can start off knowing people, which should help, with you being so shy.</i>
<br />
<br />
At the first meet I was so frustrated. "Why is she running so slow? Look, she's just laughing and jogging along!" I felt myself getting antsy and angry, but I didn't show it. I said you did great, and that I hoped you had fun.
<i>
<br />
<br />
What is my problem, why do I care? I don't, I don't care if it takes her 20 minutes to run one mile, but I care that it doesn't, and that she's slowing herself down. It makes me angry, but not at her, at life. It makes me sad. Everything these days makes me sad. What a strange feeling, to be sad all the time, after a lifetime of never being sad. It's easier to be angry. I know what to do with anger, but not with this constant feeling of emptiness. I care because she's interested in running and I'm not interested in anything anymore. I can tell how much she loves it and how much she looks forward to it and I try to think of things I look forward to, and I can't. I used to, even in the hardest times, look forward to things: working out, having sex, eating breakfast, writing, talking to people. When did everything become such a burden?</i>
<br />
<br />
I emailed the coach after the second meet. I felt like a helicopter parent, but I did it anyway. I told the coach I thought you should pace to someone faster than you. I said if you paced with someone slower, you would slow down so as not to leave the person behind. I told her you would never say anything, that you would always do what she asked. I said that if you had someone faster to pace against, you would see that as a competition with yourself, and you would push through in a way you would not if you were told to compete against someone else. I told her I knew nothing of running, but that I knew you.
<br />
<br />
<i>
I can't even physically run. I haven't been able to run without excruciating pain since my car accident in 1984. Coach, you weren't even born then. And it's not a matter of her doing something I can't do and living vicariously through her. So many of the things she's good at are things I can't do at all. Running, sewing, knitting, the goddamn sudoku. I love that, I feel no wistfulness or regret or envy. We all need to be ourselves. </i>
<br />
<br />
I watched your time plummet every week. You were put on "varsity" at the beginning, even with over 17 minutes for two miles. Then, right away, after I emailed the coach, we saw you get 15 minutes. 14:25. 13:40. 13:17 qualified you not only for sectionals but as the second fastest girl on the team. After every race, I marveled at how you didn't seem tired, even when it was 95 degrees. You just ignored everyone right afterwards, got some water, took a breath for a minute, and then...you were fine. Like you hadn't just raced at all. Once you got under 14 minutes, you turned to me and said, "I guess I've found my sport."
<br />
<br />
<i>
I don't give a shit if you are fast. I give a shit that you are fast and you acted like you weren't.</i>
<br />
<br />
"So what changed? What's your strategy now?" I listened to you tell me that you liked to hold back. You said you liked to catch up to people, to see how many people you could pass. <br />
<br />
<i>This is your thing, this is your survival. I know how to get out of a place, any place, no matter what. Your brother knows how to scream and rage. You know how to do this. Remember the survival game in the woods? I asked how you stayed "alive" so long. You said that you stayed with a pack of boys at the very beginning so you could get out. Then, you ran as fast as you could and hid in the woods, using your smallness to hide as you looked for the fake food and water. You told me that you figured no one could see you. And if they did, well, then they'd have to catch you. How did I raise my kids to understand survival so clearly? Or hell, how else could I have raised you, being me?<br />
<br />
</i>
I asked if you had used the strategy that I and the coach had suggested, to pick someone faster to try to catch, and you said you had, but that person kept changing, because you started beating the girls you didn't think you could beat. You said it helped to know the person you were trying to catch.
<br />
<br />
<i>It helps because if you get past her, you will be happy for yourself. If you don't, you will be happy for her.</i>
<br />
<br />
I fought with you because you were so impossible for the few days before sectionals. I tried to stop myself from being annoyed with your attitude, but I couldn't.
<br />
<br />
<i>I'm frazzled and anxious all the time, I feel like my heart is beating out of my chest. The smallest thing sets me off. I want to get a divorce or quit my job or move or all three but I know enough to know I don't want to do those things, because I know I need help, that all of this has caught up with me, not just cancer but all of it, I know that now, that it's not "just" chronic PTSD over the last seven years but probably the last 30, for too many reasons to name. And I'm sorry that I don't have the patience, but I've never had patience so that's not what I'm really sorry about. I'm sorry about all of the rest of it. But you still can't talk to me like that.</i>
<br />
<br />
I told you to just go out there and have fun, and I meant it. I said it was so exciting to make it to sectionals as a sixth grader. Just run as fast as you can and don't worry about it, I said.
<br />
<br />
<i>
Why am I nervous?</i>
<br />
<br />
I didn't run the course to see you at different points in the race, like your dad and brother and many of the other fans. I watched the start and stayed at the finish. I saw your teammate coming in second, and cheered loudly for her. And then I saw another red jersey in the middle distance. Oh my God, I said. That's Lenny.
<br />
<br />
<i>
Holy shit. That's Lenny.</i>
<br />
<br />
After, we learned that you came in ninth, at 13:04, and as soon as your next teammate crossed the finish line, she found you and said, you did it Lenny, you made state! Congratulations! And she tried to hug you, as did the other girls, and you kind of half hugged in return. An 8th grade boy told you not once or twice, but three different times, great job Lenny, great job making it to state! I said, holy shit. She's going to state.
<br />
<br />
<i>Isn't it awkward when people hug you? I know, I know just how that is. I know you don't know what to say but damn it, at least say thank you. Good, you said thank you. How many times has that boy tried to talk to you? Not just today, but all season? How much more could you be exactly like me and not like me at all?</i>
<br />
<br />
But before that, before I thought all of that, I said, Oh My God. That's Lenny.
<br />
<br />
<i>Here she comes. I can only think of one thing to say.</i>
<br />
<br />
RUN!
<br />
<br />
<i>Run.</i><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMVryFgClEA49ceVWfJXT5KinFokAdXq0V5dnzvuHAh4LdH6LlKpSzDESz7pKblLhR5QK4V0Ol6Yra2UTfP0hB99eCasQmyq5IC2_3HVN7KLuIIQhX56iuQHUeQq_rCiWU1MbP2fyloF8/s1600/run.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMVryFgClEA49ceVWfJXT5KinFokAdXq0V5dnzvuHAh4LdH6LlKpSzDESz7pKblLhR5QK4V0Ol6Yra2UTfP0hB99eCasQmyq5IC2_3HVN7KLuIIQhX56iuQHUeQq_rCiWU1MbP2fyloF8/s320/run.jpg" width="240" height="320" data-original-width="720" data-original-height="960" /></a>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7125354934408472049.post-33837219342796622042017-08-22T20:39:00.000-05:002017-08-22T21:53:13.158-05:00Day 2,534: KatyDid42<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOR7V4rLziEehxC2HxSLpbDOGfWU0CzsE5vuMUMN77csJ6TFs_O-HsWHZIUGXnfdHpRVTCI_vQzcDPwPnZd9sAYECX2dLWH0VyEFY1Y0izmlMJ24PLZM-0vGoVWCMQfs6S3IJXRkofRsw/s1600/bwbday.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOR7V4rLziEehxC2HxSLpbDOGfWU0CzsE5vuMUMN77csJ6TFs_O-HsWHZIUGXnfdHpRVTCI_vQzcDPwPnZd9sAYECX2dLWH0VyEFY1Y0izmlMJ24PLZM-0vGoVWCMQfs6S3IJXRkofRsw/s320/bwbday.JPG" width="240" height="320" data-original-width="480" data-original-height="640" /></a>
<br />
<br />
Today is my 42nd birthday. That is at least seven birthdays more than I was really expecting, 32 more than I thought I'd get as a kid. I've written a lot about birthdays, but less about other things that matter. For instance, I never wrote here, after my last post, to tell everyone who reads this blog that I don't have cancer for a third time. My suspicious mass was benign. I told my people, I celebrated, I drank, I felt such relief it isn't even worth describing, I eventually told my kids about it, and I didn't write it here because I was busy and I don't come here like I used to when coming here helped save me. And so, I don't have that much to say about 42, except I'm here, and I wasn't expecting to be, and it's as boring and miraculous as weather.<br /><br />
I didn't know what to say, so I wrote this instead. Here's to 42. And to 35, the age I was when I ate these grapes, right after I had dedicated so much time to cheating death. And here's to all the ages we reach when we're lucky enough to reach them. I wish you as many as you can get.<br /><br />
<b>
If I Could Go Back I Would<br />
By Katy Jacob<br /><br /></b>
Still not share the grapes with my children;<br />
they were perfect and we were older and had less time.<br />
Choose, all over again, a bowl that I knew would keep them colder<br />
at the back of the refrigerator I would <br />
pick out again if I was re-doing my kitchen<br />
in the first home I would share with someone else.<br />
Insist, impatiently, always impatiently,<br />
that they go to bed early and then wait for the quiet<br />
so we could sneak away to eat grapes<br />
like we were learning to undress each other<br />
or drinking sweet schnapps straight from the bottle<br />
before we knew better.<br />
Wait for the crunch but still find it surprised me.<br />
Let him feed me, for once, one hand in my mouth,<br />
the other on my head of new, downy hair.<br />
Stand up, because finding a seat would take too long.<br />
Not feel guilty when I looked in on small chests rising<br />
in a peaceful dreamstate of not knowing what they’d missed.<br />
Refuse to buy green grapes for three years<br />
because I knew they would disappoint.<br />
Choose the guy who said <i>I guess grapes aren’t really poetic</i> <br />
after he read a poem I wrote about a nectarine <br />
I’d eaten before I knew him. <br />
Write the poem anyway, half out of spite.<br />
Tell myself I had moments to spare, people I’d meet again,<br />
years to search the world’s wide reaches for grapes<br />
even if I didn’t, I wouldn’t, and it would be impossible.<br />
Do it again, just the same, all of it, but I wouldn't. <br />
Who am I kidding?<br />
Once was enough.
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7125354934408472049.post-50253577645059464532017-07-12T13:54:00.003-05:002017-07-12T13:54:44.816-05:00Day 2,493: Counting TimeAlmost 2,500 days ago, I began writing this.<br /><br />
Four years ago today, I received my second cancer diagnosis.<br /><br />
Two days ago, I found out after a series of tests that I need a biopsy of a painful lump in the exact same location as my previous two cancers. I have to wait until a week from today for the biopsy, which might as well be a year. It could be scar tissue, or fat necrosis, or cancer. A round of mammograms and ultrasounds did not help the radiologists determine which it might be, so off I go. If the biopsy is inconclusive, I will go for an MRI. They have already prepared me for that.<br /><br />
About three weeks ago, I found the lump myself, like I did both times previously. I went on vacation right after discovering it, like I did last time. I don't regret that.<br /><br />
For four years I have had no breast tissue at all on the left side. If you aren't familiar with breast cancer on an intimate level, you might not know what this means. It means I have nothing--no tissue save skin and muscle and a saline implant that is half the size of my other breast, since it exists only to hold up my clothes and I asked for it to be that way, so I could be most comfortable. How could a cancer recur here? Well, hell if I know. If that's what it is, I most likely wouldn't be considered a "local" recurrence. It would have to be in my chest wall, on my rib, or something.<br /><br />
For seven years, I have written that this life is not about what we deserve. It is not a contest. As Augie parroted back to me a year ago: you don't have to win. And as I would add, winning and losing isn't the right construct.<br /><br />
For as long as I can remember, I have been acutely aware of my body and its fragility as a carrier of my self. I've never taken credit for my good luck with my body and I've never taken blame for my bad luck with it.<br /><br />
For seven years, I have gone about my business to the best of my ability in the shadow of this terrible disease. It doesn't appear to want to leave me alone. I've done everything I could do and many things it seemed like I couldn't do but did anyway. I've tried. It's difficult to explain how simultaneously impossible and easy it is to live your life in a normal fashion with a loaded and cocked gun perpetually at your head. I used to care about trying to explain it, but I don't anymore. I am sure I am a worse friend than I used to be, a more contrary and pigheaded and angry person than I've always been, if that is possible, I'm sure I should have cared about things over the last seven years I could not or chose not to care about. I'm sure I could have been better, if I had been different. But I am not, and I've done my best, and I will continue to do my best.<br /><br />
For three days now I have been anxious and nervous but not worried, not exactly. That's a different type of emotion, like guilt or regret. You feel it if you think there's something to be done, something you could do differently to change the outcome. I don't feel that, even if many people think I should.<br /><br />
About a month ago, Gabe and I watched the film "Bridge of Spies." I loved the Soviet spy character. He knew he might die in a firing squad or be disappeared. He was asked repeatedly if he was worried. He responded: "Would it help?"<br /><br />
For almost 42 years I have been alive. For almost 13 years I have been married. I have been a mother for over 11 years, which means my children have grown exponentially in the past 7 years we were not promised to have together. I have worked continuously for at least 25 years.<br /><br />
Time is so short, and also so long. While I go about my daily life with my family and friends and work, that is what I tell myself.<br /><br />
Wish me luck.
Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-7125354934408472049.post-58907056163717104802017-05-30T13:46:00.000-05:002017-05-30T13:46:15.827-05:00Day 2,450: This is Eight
<br /><br />
I'm a day late in posting my birthday blog for my son. But I think I can be forgiven--we were enjoying a beautiful weekend away, and I just didn't have time yesterday to finish this. So here it is.
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEdnG6AF7OVZX4EPWsssFpg33IlAC46Xkcs8TubTmh0Ookw4IIcVx5bwFEsm4OkXIF0Hq-hPkZJOQOpyeTUmewoxLVJ0iP0G-oz24F8iBZWUF9NjV8IkTWqebyKcf2_-7OdqJjiSh8wc8/s1600/kiss.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEdnG6AF7OVZX4EPWsssFpg33IlAC46Xkcs8TubTmh0Ookw4IIcVx5bwFEsm4OkXIF0Hq-hPkZJOQOpyeTUmewoxLVJ0iP0G-oz24F8iBZWUF9NjV8IkTWqebyKcf2_-7OdqJjiSh8wc8/s320/kiss.jpg" width="320" height="213" data-original-width="720" data-original-height="480" /></a><br /><br />Dear Augie:<br /><br />
Today, you are eight. We are up at the lake in the north woods for your birthday. The last time we were up north for your birthday, it was the first birthday you had ever had. I made you a cake, and it was the only chocolate cake you ever ate because you don’t like cake and you don’t like chocolate (except for Portillos’). Other than that, I don’t remember much. I had just learned three weeks earlier that I might not see more of your birthdays. You had to stop nursing overnight, you were the only one I cried around, and your life changed before it had really started. I’d like to think that isn’t true, but it is.
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4L6j4ZRyWU5BECqWaKeRQjgGUnnd7dBpYoFYa5H111mBt8ZQxQlBjFN9t1gYrI_M9kskhHel8QLX_1YvxGk9x9oI2O7FHbmhMA025GSG6y_HnhHuUpLmYETjlF2jqEQFf11ujoF0FN2U/s1600/cake.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4L6j4ZRyWU5BECqWaKeRQjgGUnnd7dBpYoFYa5H111mBt8ZQxQlBjFN9t1gYrI_M9kskhHel8QLX_1YvxGk9x9oI2O7FHbmhMA025GSG6y_HnhHuUpLmYETjlF2jqEQFf11ujoF0FN2U/s320/cake.jpg" width="320" height="213" data-original-width="720" data-original-height="480" /></a><br /><br />
I have writers block every time I try to write about you. It’s hard to know what to say. I have said that I never used the word “exuberant” until I met you, and that’s the truth—both that you are absolutely exuberant, and that I’ve had the privilege to meet you, again and again. That’s what we do, we meet our kids, every step of the way as they become themselves.<br /><br />
All of the time, it’s a surprise. I’m surprised when we almost hit a deer and the first thing you say is “Isaac Newton’s first law: an object in motion remains in motion.” I’m surprised when you say you don’t believe in God but you believe in reincarnation because you think people deserve a second chance. I’m surprised and saddened at how you see death around every corner, and yet relieved that your sense of death’s reality might stop you from being self-destructive. It’s surprising the thought you put into things. This year, you decided you had to have a small birthday party, in part because you don’t like feeling overwhelmed but also because you didn’t want anyone to feel left out. <br /><br />
I usually write such long posts, but as I said—I get writers block with you. Maybe it goes back to that symbiotic relationship where my potential death brought you to life. Or maybe it’s because we are so much alike, in so many ways that aren’t immediately obvious.
And so I could say so many things to you, but I won’t. I will just say this. I want you to grow up and grow old and change, because that is what people do, when they are lucky. But because you are only eight, and you might not remember what you were like back then, I am hoping for you that you do not change these important things about yourself:<br /><br />
Stay empathetic;<br /><br />
Keep giving your guy friends huge bear hugs every time you say goodbye; <br /><br />
Always look up to your sister;<br /><br />
Stay the loudest cheerleader on every team;<br /><br />
Keep singing, and dancing, especially when you’re not supposed to;<br /><br />
Continue to read books like they’re drugs;<br /><br />
Don’t forget how short this all is, and how fragile, because I know you already know.<br /><br />
And as I did with your sister on her birthday, I will give you the last word. For your poetry lesson in your class this year, I asked you all to write, among other things, a poem describing an everyday thing. Many kids wrote about their dogs, their siblings, or their toys, and I enjoyed them all. You wrote this:<br /> <br />
<b>Poetry<br />
By Augie Sterritt</b>
<br /><br />
Poetry is different<br />
than any other writing<br />
because it can be short, long<br />
or just in that spot where<br />
you think it’s perfect<br /><br />
And that’s what I really wish for you—stay right there, in that spot. You’re already there. Happy birthday, Augie.<br /><br />
I Love you.<br /><br />
--mom
<br /><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7125354934408472049.post-87580385467306838212017-05-22T22:00:00.002-05:002017-05-22T22:00:54.569-05:00Day 2,442: CystIt’s hard to describe. I no longer find myself inexplicably more angry and impatient for two weeks before my annual mammogram. The anxiety lasts for maybe a day before and it isn’t terrible; after all, my right breast has never showed any problems. I am not BRCA positive and I have no greater chance of getting breast cancer in my right breast than most “normal” women. Now that the breast that went wrong is gone, it’s statistically extremely unlikely…<br /><br />
Wait. What the hell am I doing? Am I explaining myself to you? And who are you, and why do you need an explanation? Why am I being defensive? Why do people with terrible illnesses have to explain themselves to people without them? The truth is that I know 3,000 times more about breast cancer than the average person and not by choice and yet here I am, explaining, justifying. I hate this, when I do this. And yet…<br /><br />
Can you blame me? After being profiled in the Huffington Post several years ago for having a lumpectomy, I read comments from readers who decided I was “vain” (even though that surgery was medically advantageous for me since it included radiation) and, even… that I “didn’t really love my children.” You read that right. I never wrote about that here, did I? But yes, a man—of course, a man—who knew nothing of medicine or cancer and less of me, said that I did not love my children because I didn’t have a mastectomy. Let that sink in for a moment. Another commenter implied that I deserved to die, since I cared more about my looks than my life. That person apparently believes you need breasts to survive—since no human being has ever died from breast cancer local to the breast, and metastatic breast cancer gives not one shit whether you had a lumpectomy or mastectomy in the first place. But every single one of those commenters believed that from reading a few lines on the internet, they knew more than people with breast cancer, and the people who have dedicated their lives to studying and fighting the disease, and that they were in a place to pass judgment. And we feel that judgment clearly, those of us who might die young through no fault of our own. And we attempt to educate, to explain. And it’s bullshit.<br /><br />
So cut me some slack. And let me try this again.<br /><br />
It’s hard to describe. <br /><br />The nightmares are intense, movie-like, and seemingly unrelated. They only last a night. You can’t sleep in, because you can’t really sleep. You go about the morning, unloading the dishwasher, making breakfasts and lunch. You have taken the day off and your husband is coming with you for the mammogram. He always comes with you. This time you end up almost wishing he wouldn’t. You fight in the car, he is wholly unable to comfort or distract you and you resent him for not trying. He claims to be quiet because he’s tired and concentrating on driving and you find these petty complaints enraging. You think he is making this horribly anxious day be about him, and you aren’t entirely wrong, and it’s one of those taboo things people who have had cancer rarely discuss—when the people they love disappoint. It’s real though, and it’s hard.<br /><br />
Once you are finally in the mammography suite, you realize, as you always do, that he can’t come with you anyway. You go inside and are ushered through various people checking you in and then you are separated by multiple waiting rooms. So why does he come? You know the answer, which is that the very first time you ever walked in this room is the time your life changed. You never got to have a normal mammogram as a woman without breast cancer. You don’t know what that’s like, to have this be a routine test. So he comes with you, if for no other reason than someone has to drive home if you need to fall apart.<br /><br />
You are still in the diagnostic camp, though they scan you like it’s screening: just two pictures, nice and easy. You go back to the waiting room. And then, you are called back in, for another picture because “we just saw some tissue there and need another angle.” You ask for clarification and they don’t give it to you and you know they aren’t supposed to tell you anything. The mammography technicians are supposed to be gods of the poker face, all sympathy and no information. That aspect of the job must be much tougher than contorting breasts into metal machines.<br /><br />
You have one more picture taken and go back to wait. And then, a different woman comes for you. She says, “I will take you back to this area and then we will get your ultrasound going, ok?”
You stop right in the middle of the hall.<br /><br /><br /><br />
What ultrasound?<br /><br />
<i>Oh my God, she says. They didn’t tell you? I am so sorry-- they are supposed to tell you. They saw some tissue on the mammogram and this is just to clear it up. Oh God, someone should have told you</i>.<br /><br />
You cannot even speak. You know why women get ultrasounds. It is to confirm the breast cancer everyone knows is already there. You have had two of these before, and saw four tumors, three the first time, one the second, round and clear as day on those ultrasounds. But those times—you had at least felt the lumps yourself. You knew something was there. This is totally out of the blue.<br /><br />
OK, you say.<br /><br />
God help anyone who is in the room when all you can say is “OK.”<br /><br />
You follow her. She is nervous and talking too much. You feel sorry for her, and realize if you lived with her or loved her, you would hate her just a little bit right now. It is in her being a stranger that her awkwardness reads like empathy. It is because she doesn’t know you that she cannot say “well this is some bullshit” or “Jesus Christ I can’t believe they didn’t warn you” or just “what the fuck.” She is just doing her job and she sees thousands of women like you. Or so you think, until she doesn’t stop talking. And you wonder what the look in your eyes looks like to her. She seems afraid of you, and you aren’t even talking. Maybe that’s it. Maybe it’s your silence that throws her off.<br /><br />
She describes the procedure to you. You tell her: “I know. I’ve had two of these before, when I was diagnosed with breast cancer twice before.” She changes tactics and tells you about the gel and where to position your arm. You contort yourself so that even though the computer screen is above and behind you, you can see it. You watch her and she watches you watching. She stops talking. After a while the circle comes into view, perfect in its roundness. You see her type “4 cm.” You think that’s impossible, that is huge, all three of your tumors together weren’t that large.<br /><br />
It’s hard to describe what you think about. First, you begin to think about not seeing your kids grow up, but it’s too hard, so you stop. You think about how you will tell your boss, since you just started your job. You wonder if you will have to quit. In the next breath you think “I will have to delete facebook.” You honestly cannot imagine sharing with anyone if this is the third time. Your instinct is to never speak to anyone again. You think about how skinny and fit you used to be and how you are all right now but not in your best shape and yet well, I guess none of that matters now and it never did. You think about the fact that if you have cancer again someone will say it’s because you didn’t have a scientifically unwarranted mastectomy. Someone will say it’s because you gained 10 pounds. Someone will say it’s because you couldn’t not drink whisky sometimes in this political environment. Or, more likely, no one will say this to you, but they will think it. Others will think how unbearable it is for someone to have cancer again and again and they will leave. You are not being cynical. It’s the truth. The cynicism comes in with not wanting to talk to anyone. You think about how you will get through the day because thinking beyond that is impossible.<br /><br />
You think about circles and clocks. She measures your breast and writes down the “time” of the circle. She gives you a towel to wipe off the gel and nervously asks you if you need another. You know that she knows you don’t need one, and you vascillate between feelings of annoyance and tenderness towards her nervousness. You begin to put your clothes back on and you know that your silence, or maybe just the look of silence in your eyes, is killing this young woman just a little bit. She says that she will get the doctor, the radiologist, and it will be just a minute. You nod at her, silent. She reaches for the doorknob and says, quickly and nervously, “it doesn’t always mean anything. They just have to make sure, I wouldn’t assume it’s anything.”<br /><br />
You look at her, curiously. You think, huh. Well, actually, the only times I’ve done this, it’s meant…something. And we all knew what. You smile, and it’s the worst thing you could have done, you can see it in her eyes.<br /><br />
The door closes. You think about crying. And by that I mean you think about it, intellectually. You remember crying. All the time after your first diagnosis, making you feel like someone else. In the changing room after you found out the second time—you cried then fast and furious. You haven’t cried for more than a moment in years and years. You wonder if your husband is crying, because you told him about the ultrasound. <br /><br />
In the time it takes you to contemplate the nature of tears, the door opens. A radiologist you haven’t seen before is standing there: a tall, handsome white guy with perfect hair and one of those big, charming, toothy smiles. “Hello!” he booms, looking straight into your eyes. “You have a cyst, there’s absolutely nothing to worry about, everything is fine! My name is Dr. X.” And he takes your hand to shake it and then holds it with both of his. You can’t help but wonder if he learned all of this in medical school or charm school or what. You get mad at yourself for wondering. You say “I’ve had breast cancer twice and the only times I’ve had ultrasounds was to confirm my cancer. So when you called me back here, I assumed the worst. And I saw what she was looking at—it was a circle.” You realize you have momentarily broken the strength of his poker face and you feel somewhat guilty as he is genuine and caring and that is why he told you right away. “I like to tell people the good news before I even tell them my name,” he had said. You wonder again how he learned that, and half hope it was from some woman screaming in his face when he did things the other way around. You reiterate: “I saw it on the screen.” He recovers well, and just pulls up the images on the computer without even trying to convince you otherwise. He shows you the mass. “You see, it is completely black inside. Breast cancer is gray, or shadowy, or white. This has absolutely nothing but fluid inside of it—NOTHING. We aren’t even worried about this at all. See, here, you are coming back in a year for a screening mammogram!” He sounds excited and shows you the piece of paper releasing you as if it’s an award. He is so earnest, and attentive. You feel a little sorry for him too.<br /><br />And then, as you are leaving, the technician pauses at the door: “it’s just that we can’t say anything. We have to wait for the doctor.” She looks at you imploringly, and leaves.<br /><br />
You understand her now. She knew you were fine, and could not tell you. She knew how scared you were and that she had the information to give to you to alleviate that fear and she could not give it to you. And you realize: This is what she does for a living, every day. Every day she stands inside people’s fear and suffering and bears witness to it. She sticks to her part, and it is hard for her. It is hard for the doctor too. But, most of all, this is hard for you. It’s ok to admit that, and to claim it: This is hard for you, most of all.<br /><br />
You head over to the oncologist and he agrees to see you 90 minutes early which is unheard of, but you realize he has the results of what just happened. Your blood pressure is high, through the roof for you, and the nurse just laughs and doesn’t seem concerned at all. Your doctor comes in, this man you have been dancing with for seven years, and does the same cursory exam and asks the same questions and tells you the same things: “you look great. Come see me in six months. Enjoy your summer.” When you ask him about the cyst, he tells you it’s common, you are just starting your period this month, it’s nothing to worry about. You look at him and he at you and he says something to you that you know he doesn’t say to everyone: “They are very conservative. You wouldn’t be in my office if it was anything.” You know these are the same words another technician told you years ago: “If they were worried, you’d be on the (biopsy) table right now.” They have never messed around in this place. Unfortunately, they have never been wrong. You ask him if there’s anything else you should do, knowing he will say no, and he says “Medically…you’re fine. You look great,” and he walks out the door.<br /><br />
<i>Medically, you’re fine.</i><br /><br />
That’s it, you realize. That’s his way of empathizing. His stone face and monosyllabic voice and total unconcern with any of your problems save CANCER, all of that masks the fact that he, too, does this every day. He watches women fear and suffer and die. He has to tell people they are dying. He can tell the difference between suffering you will live through and suffering you won’t. He knows the toll it takes on the people who go through it. He knows it and the technician knows it and the radiologist knows it. They just handle it in very different ways, in very imperfect human ways.<br /><br />
And you are reminded again that they are all very good at this and also no better at this than you.
<br /><br />
As I said before, it’s hard to describe.<br /><br />
It’s hard.
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix9DULujOa1wYFHfb7qtKBmVZTErAVVcjHVwF5nnR84QdZVFMyX1cEi9-q_Vsr4nt_N1W5I9OPRHAMJKyw9GWxm6PGtlwrFY_4ZKyg-JIWGhKgqvtI5R4CBlL49uvRuuRs2AWJujpa4Fg/s1600/2017mammo.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix9DULujOa1wYFHfb7qtKBmVZTErAVVcjHVwF5nnR84QdZVFMyX1cEi9-q_Vsr4nt_N1W5I9OPRHAMJKyw9GWxm6PGtlwrFY_4ZKyg-JIWGhKgqvtI5R4CBlL49uvRuuRs2AWJujpa4Fg/s320/2017mammo.jpg" width="240" height="320" /></a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-34647104280499732802017-05-04T05:48:00.000-05:002017-05-04T06:01:30.971-05:00Day 2,424: Seven Years and Counting
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwyL_PVrnUVvIqG8vbS7QZdttnwpwXOqK6EeFV6phXup2c5MZLq54w7G-dscj_3n4qf6xE1DQJzce81mrWau-DTOa6yxfzWWLFLb553OveZlhV3Pu4Xpnw6_PVgNy2vyst-ie_R4Zs9VE/s1600/mehair7.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwyL_PVrnUVvIqG8vbS7QZdttnwpwXOqK6EeFV6phXup2c5MZLq54w7G-dscj_3n4qf6xE1DQJzce81mrWau-DTOa6yxfzWWLFLb553OveZlhV3Pu4Xpnw6_PVgNy2vyst-ie_R4Zs9VE/s320/mehair7.JPG" width="240" height="320" /></a><br /><br />
Seven years ago, <a href="http://katydidcancer.blogspot.com/2010/05/day-one.html">I sat down and wrote some things,</a> because I didn't know what else to do. Here are a few of the lines I wrote back then--before I knew what was in store and that I would have to go through it all again--in no order of importance: <br /><br />
<i>I never thought that I would write a blog.<br />
The question I have now is, where is that do-over button?<br />
You can ask me to change everything in my life, but you can't ask me to do it all at once.<br />
I have breast cancer.<br />
I need to tell myself and both my kids that I will beat this thing and be around to argue with them when they're teenagers, so they can hate me and resent me for some reason other than dying.<br />
Your body's just on loan, after all, and sometimes you go through a major financial crisis with it.<br />
After all, the world keeps spinning.<br />
It was strangely comforting to find out that people are still assholes.<br />
I have never taken my health for granted.<br />
I've dodged a lot of bullets and lived a happy, mostly healthy, life.<br />
I don't want to think my luck has run out.</i><br /> <br />
I had no idea what to say, what to do, what to write, what would happen, who I would become, or whether or not I would survive. I had no idea that I would have to do this twice, at least. And yet, looking back, it seems that I laid the framework on that first day for everything I was going to try to say over the next seven years. There was just no way for me to know that at the time.<br /><br />
<i>I never thought that I would write a blog.</i><br /><br />
And, looking back, I'm not sure I was ever very good at it. Is this venue really a blog? These long rambling essays, which always appear to be about one thing but are in fact about something else entirely--usually the concept of false meritocracy, and how no one "deserves" the life they lead, good or bad, and often about how what we should be striving for is that one perfect moment of grace, not of beauty or success or even goodness, but grace, making ourselves lowly and unassuming and understanding--are these blog posts? Does it matter? I never thought I would write a blog, but I never thought I would need to. This blog did so much for me. It allowed me to write down stories for my children, to write long love letters to them. It enabled me to tell people what was going on with my health without having to go through the painful process of actually talking to them and seeing the terrified looks in their eyes--or, worse, the discomfort. It brought me closer to my husband, as I said things here that I would never say out loud, not being overly sentimental. It taught my family and friends things about me that they never knew, because I kept so much to myself all my life. It helped me understand what the hell had happened in my life, and why it mattered. I wrote about one kind of trauma and learned how to write about all the others. This blog made me feel that I was good at something. This blog gave me a reason to write about things that seemed small or absurd--stories about people puking, kissing my gynecologist, waiting for an elevator, talking to a technician, and so many others--that were actually some of the most profound moments in my life. This blog has provided me with a lot of opportunities for last lines, and I'm good at those. <br /><br />
<i>
The question I have now is, where is the do-over button?</i><br /><br />
Ah, but there isn't one. And if there was, I know now what I didn't know that I knew then: I wouldn't use it. Any guilt or remorse for the way I am and the way I have behaved, any sense of how I should have been better, has never come to me. I didn't come here to apologize.<br /><br />
<i>You can ask me to change everything in my life, but you can't ask me to do it all at once.</i><br /><br />
This is one of the most adult lessons of all. We have to learn to suffer and celebrate incrementally. This is especially true if other people rely or depend on us. We can lose it, but not entirely. I wrote about my struggles in this blog, but I downplayed them at the same time. I wrote about cyclical depression, and even PTSD. But in other ways--I didn't. I didn't necessarily detail how it felt to feel so adrift, all while having to keep so much together. I never wrote much about the absurdity and the physical difficulty of starting a new job based in another state just weeks after an amputation and into the first round of chemo. I didn't write about how I never drank before cancer, or how I felt like leaving everything behind. I had trouble relating to people, who had trouble relating to me. Even when I did write about the hard things, I rarely just said it: <i>This is hard. This is hard. I don't know how to do this. No one knows how to do this, or anything else. We're here for a minute and then we're gone and that is true all the time, every day, and I am always aware of it and always have been and it's hard.</i> I had a mark on my back and a bullet at my head and I learned to live with it. I've always lived with it, which helped. But you walk differently, you talk quieter. You change. Some people never forgive you for it, but death is so close you find yourself unable to remain angry with them. You remain angry in general, however, all the time. Your anger defines you. Wait, that's not true. My anger defines me. I won't generalize to you. You are probably an altogether lovelier person than me. I might have had to do things differently, but I did things. I stayed...me, for better or worse. That means that I stayed angry and stubborn and impatient. If I have good qualities, I think I maintained those too. I morphed into the Katy I am today, but there was a core Katy there all along. I changed, but incrementally.<br /><br />
<i>I have breast cancer.<br /><br /></i>
If you haven't had to say that you have cancer, you don't know how hard it is, and I hope you never learn. I said it right away, and I was never in denial about it. It might still be true about me. I hope not, but I don't know. Breast cancer changed my life, in almost every possible way, and yet...it didn't. Breast cancer is a disease, not an injustice, it is a thing that happens to so many people that there is no reason it wouldn't happen to me. I have always said that, from day one, and I still fully believe that. The tragic things that happen to people happen to me, they happen to you. They don't happen to someone else. We are all someone else. It isn't a game, and it isn't a contest, and the goal isn't to win, it is to survive and to feel empathy for others.<br /><br />
<i>
I need to tell myself and both my kids that I will beat this thing and be around to argue with them when they're teenagers, so they can hate me and resent me for some reason other than dying.<br /><br /></i>
We're getting there. They are 11 and almost 8. Can you believe it? They were 4 and 11 months old when this started. Their lives were forever altered by having me as their mother. My son in particular does not know how to have a mother who did not have cancer. His frame of reference is built on that. His night terrors and anger and wisdom beyond his years come, in part, from that. My daughter thinks about resilience differently, and often. She is overly fond of long hair. She doesn't seem to give a damn what other people think about anything. I think some of those things are related to growing up with me. My kids aren't afraid to talk about death, and dying. They don't believe in God but my son believes in reincarnation, and there are so many things about him that make me almost believe it too. My daughter believes you can talk to people when they're dead. But why wouldn't she? I've written here that she has told her brother: "She will always be our mom. Even when she's dead." But she also yells at him for coming in her room unannounced and is getting moody in her preteen years, and he is always going on about how "we don't understand what it's like" so I feel like we are making progress, and they have a mom, not a cancer mom, after all.
<br /><br />
<i>
Your body's just on loan, after all, and sometimes you go through a major financial crisis with it.
<br /><br /></i>
This--this has been a defining theme in my life. Every part of my body has stopped working at some point, through cancer, epilepsy, my car accident: my legs, brain, heart, arm, lungs, hair, my eyes. I don't see a body, of any kind, whether conventionally attractive or not, as anything but a vehicle for mySELF, which is not defined by my body. My body is not a temple or a work of art. It is not a battlefield. My body has hurt and people have hurt it. I have felt great physical joy and accomplishment. But my body is just a body, and it is not here to be celebrated or condemned outside of the context of being the shell that means I am not dead. I do not take credit for it nor do I feel guilt because of it. I do not feel inferior or superior because of my body, and neither should you. My health is a stroke of luck, along with my illness. I no more deserve to die than I deserve to live. This isn't about what we deserve. <br /><br />
<i>
After all, the world keeps spinning.</i><br /><br />
It does, no matter what is happening in your world, which is impossibly small and not altogether interesting. So...write about the wider world, write about the people you witness. Take your place in this dizzy messy space, and learn to make light of it.
<br /><br />
<i>It was strangely comforting to find that people are still assholes.</i><br /><br />
They still were, still are, always will be. It gives me something to fight.<br /><br />
<i>
I have never taken my health for granted.</i><br /><br />
And neither should you. I've cheated death five times but I don't feel proud, or cheated. The first time I was four. The second time, nine. The third, 24, and then 34 and 37. The only thing I learned is that any age is too young to die, or that at least I hadn't yet reached an advanced enough age not to feel that way.<br /><br />
<i>
I've dodged a lot of bullets and led a happy, mostly healthy, life.</i><br /><br />
I said once that all my life, I've looked over my shoulder from the passenger seat of the getaway car, wondering when the gig would be up. I can hear the sirens in the distance, but they haven't caught up with me yet. <br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3VZOblPj_BG2b-X67SmqqXmD2_rHYP_A6idm2i9mg7T9hld-5Q_2Vsmruda90gFlsvuP1VKeZQJKtTNNO6A7FkGIkvz1LGWI9UrSQ4J0EsIU5SU8aU4tOPLbbjewo0FJI5GeXeVVhcc/s1600/lucerne.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3VZOblPj_BG2b-X67SmqqXmD2_rHYP_A6idm2i9mg7T9hld-5Q_2Vsmruda90gFlsvuP1VKeZQJKtTNNO6A7FkGIkvz1LGWI9UrSQ4J0EsIU5SU8aU4tOPLbbjewo0FJI5GeXeVVhcc/s320/lucerne.jpg" width="320" height="240" /></a> <br /><br />
<i>I don't want to think my luck has run out.</i><br /><br />
I didn't want to think it then, and I don't want to think it now. I didn't think 34 years was long enough, and I'm not about to think that 41 years is. There is no reason for me to be here when so many others who are just like me are dead. It's a harsh truth, but a real one. There is also no reason for me to not live. There is no reason for any of it. Our purpose is not to have a purpose, but to find one. Or maybe that's just more mere-mortal reaching. All I know is, I have lived seven years since learning I might die much too young. And even if that still turns out to be true, I have had those seven years. In that time, my son went from being a baby to being a second grader, my daughter started out a preschooler and is soon going to enter middle school. I've lived to see my kids learn how to do about 95% of the things they will learn how to do in their lives. My marriage has lasted longer after cancer than it had lasted when I was diagnosed. I have bought two new houses in these years, started three new jobs, somehow managed to continue to move up in my career, though honestly, of everything, I don't know how I did that. I spent a year not being able to read a single book in 2014, with extreme chemobrain, and I just...hid it. I don't know how I did that, and my employer never knew. But I digress. I made some wonderful friendships in these years, and lost some too. I lost my hair and grew it back and cut it all off again, and I'm done with it, I'm done with the time and the energy hair takes. I went through menopause and puberty. I bought my first car. I visited cities for the first time, and took my kids with me. I got married again, to the same person. I walked out onto frozen lakes and stood inside of dinosaur footprints millions of years old. I learned how to ride a bike, row a long, skinny boat, make a perfect Manhattan, and cry. <br /><br />
I wrote a few things. <br /><br />
One of the things that I wrote is the first 25 pages of a novel I doubt I will ever finish, though I would like to, before I die. I wrote it, like everything, for my kids. I want to let them know that if they don't remember anything else I told them, I still believe that children are just small versions of adults, with all of their own complexities and suffering and joy. I want them to have something to read that is written not for children, but about children, which is different. I don't know why I want them to know this, when they have not yet read any of these words, and I haven't finished or even gotten into writing the other words. I always said that if I wrote a book, I would just write one. I only ever wanted to write one. Maybe I've become superstitious, and I just haven't wanted to finish it, because I can't imagine both being alive and having done that. I don't know. My book has a great title, a perfect ending, a remarkable backstory, and very little in between except a few good lines. Towards the end, I remind the readers/my kids:<br /><br />
<i>Because when you are imagining, you might as well imagine something worthwhile.</i><br /><br />
The same could be said for remembering. <br /><br />
Seven is a lucky number. They all are, when they're years. <br /><br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7125354934408472049.post-72551659465064216312017-03-08T07:58:00.000-06:002017-03-08T07:58:22.145-06:00Day 2,367: Eleven<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjncvkPF_IrSG9ApwpdUPGREB0a702ITd9d3AjLm3itcjMtbH-A-uyYeIte4ypavGuCtWhi9KBWJa0w7KmUASQMasdW2Rtn9dBark-zX_l-gy90eNMVxCWzTqoWEnaHWylGE1mZ1muMqMs/s1600/lennygabeparis.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjncvkPF_IrSG9ApwpdUPGREB0a702ITd9d3AjLm3itcjMtbH-A-uyYeIte4ypavGuCtWhi9KBWJa0w7KmUASQMasdW2Rtn9dBark-zX_l-gy90eNMVxCWzTqoWEnaHWylGE1mZ1muMqMs/s320/lennygabeparis.jpg" width="240" height="320" /></a>
<br /><br />
This year, I made a resolution. That resolution was to write more. I broke it. <br /><br />
I’ve been watching and wondering how to raise my children in the world as it is now and as it is going to be. I don’t know how to do it. On the plus side, I guess that has always been true. When I sat down all those hazy years ago to write a letter to my daughter for her fifth birthday, it was an admission that I was raising her in a way that was unlike anything I had expected. For almost seven years, I have been writing in this space, albeit sporadically, of late. I have always said that this blog is a long love letter to my children, so that they might know something about me if I were to die before they had a chance to really figure me out as a person.<br /><br />
Something interesting has happened: Time has passed.<br /><br />
My daughter is eleven years old today. When all of this started, she was four. When she started, she was, well…just starting. She is old enough now for her memories to be solidified. She is old enough to look like a small, skinny version of the self she will look like forever. She’s old enough for me to look back on the way she was when she was two and realize she is exactly the same, as we all are, even while she will never be the same, as none of us will. And I am old enough, and alive enough, to have written six of these birthday letters to her, starting when I wasn’t sure I would make it to write another one, and excepting last year, when I failed to write at all. I feel like I have run out of things to say, not because she has failed to provide enough material, but because I’ve been too busy living and getting through life with her and the rest of my family to stop and think much about it. But I will try.<br /><br />
Dear Lenny:<br /><br />
Today you are eleven. When you are my age, you may or may not remember yourself at this age. You might forget how you still liked to play with your little brother best of all, how you still played along with Santa Claus and the Tooth Fairy and the Easter Bunny and wanted more stuffed animals. You might forget, in a few short years, how much you hated the idea of growing up, puberty, and everything that was coming your way. You might forget that I told you growing up is just what everyone does, and you probably never knew that I agreed with your sentiments and secretly wished I could change everything for you. You might forget, or be unimpressed by, how easily your shy self moved to a new town and did everything new that you wanted to do, without worrying or caring what other people were doing. I remember so little of when I was eleven. I wanted to be like a boy then—they seemed to have things so much better. But not you. You just want to be like yourself. I’ve always admired that about you.<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv4rhAS9SzxsBaums0CfDoe7LheiAe8gO2UWo7IBV3LoARwZA7u_n9Map-BIwCq_4Gt6Mnxgijjyz5OkuvTLa4sw-JnsnImOiqyukV6-mx1foo2wdncVR3aMiJjKODFOHhN7JWH2qAFw0/s1600/vday.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv4rhAS9SzxsBaums0CfDoe7LheiAe8gO2UWo7IBV3LoARwZA7u_n9Map-BIwCq_4Gt6Mnxgijjyz5OkuvTLa4sw-JnsnImOiqyukV6-mx1foo2wdncVR3aMiJjKODFOHhN7JWH2qAFw0/s320/vday.jpg" width="240" height="320" /></a><br /><br />
You and I talk around things, not because we don’t trust each other, but because we are too much alike. Other people’s emotions are painful and embarrassing. Being held can seem a burden. I know. Believe me, I know. And so, we emote in a roundabout way:<br /><br />
You casually tell me that you are supposed to write an expository paper on the topic of resilience. You don’t say anything else. I ask you why you are telling me this. You say, well, I thought I could interview you. Is there a time in your life when you felt like you had to be resilient? I couldn’t help but be sarcastic: “Hmm, I wonder…what could I pick? I suppose I should pick cancer, though that isn’t the only thing I could think of.” And you refused to look at me while you asked me the questions and I gave you relatively short answers. You never showed me what you wrote. I learned from your teacher that she was so impressed with your piece that she asked permission to share it with the class.<br /><br />
A year and a half ago, I started writing a novel. I got twenty five pages in and then I stopped, and I haven’t gone back to it. The setting is all wrong. You asked me what it was about and I didn’t know how to tell you. I wanted to write a book that wasn’t for children in the way that books are written for children today as if they are a different species rather than small versions of adults. I wanted to write this book because of a story I heard two men tell on an Amtrak train when I was 25. I wanted to tell the story because I saw a picture of a house online and that was enough for me to go on. I was writing the story but the protagonist was a boy, and so I was ashamed to tell you about my novel, as I knew you would think I was writing about your brother when the protagonist was really me, but I couldn’t have my story be about a girl, because I didn’t want it to turn out sad.<br /><br />
I’ve written all of these things to you, including all of these letters for all of the birthdays you’ve had since you turned five, except for last year, when I was too lost in my own feelings of—what was it? Depression, I suppose?—that I didn’t write birthday posts, or much of anything at all. It is odd to admit that you have never read this blog—not any of it. It is past time for that to change. Perhaps you should start with the posts I wrote expressly for you. If you never remember anything else I’ve told you, I want you to remember these things:<br /><br />
One: Always have hobbies and interests no one can take away from you. You should fill your life with things that don’t require other people, places or things. You need at least one of these. I have writing, walking, baking, and listening to music when I’m alone. You have sewing, running, reading, and so many other things. Those are for you, so you will never be lonely, never be bored.<br /><br />
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Two: Always read the last line first. It won’t spoil the story. In fact, it will help you know if the story will be worth working through. The most important lesson is to know how to end things gracefully.<br /><br />
And so, when I’ve written to you, I’ve said a bunch of things, always saving the most important for the last line or lines:<br /><br />
<i><a href="http://katydidcancer.blogspot.com/2011/03/day-306-for-my-daughters-fifth-birthday.html">At five:</a> If I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there, it would be enough. I love you.<br /><br />
<a href="http://katydidcancer.blogspot.com/2012/03/day-672-turning-six.html">Six:</a> And so it goes. There isn’t much left to do but turn anger into hope, and turn resignation into faith in your abilities to adapt and thrive. So for my daughter, a brilliant and funny and empathetic and beautiful little six year old girl, I wish for the best of birthdays and a hundred more. I wish for the opportunity to spend many more of those birthdays with you. I wish the world was an easier place. In the last six years, you have definitely made it a better one.<br /><br />
<a href="http://katydidcancer.blogspot.com/2013/03/day-988-for-my-daughter-on-her-seventh.html">Seven:</a> … And she said, in front of the entire first grade: Because I love you. I will always remember you when you were seven, Lenny. Always—no matter how many more sevens I've got.<br /><br />
<a href="http://katydidcancer.blogspot.com/2014/03/day-1363-golden-birthday.html">Eight:</a> But I am doing this for her, for them. I am taking account of things they might be too young to remember or too innocent to comprehend. I am remembering for them. So, Lenny, know that I love you. You aren't just golden today, but always.<br /><br />
<a href="http://katydidcancer.blogspot.com/2015/03/day-1640-letter-to-my-daughter-you-are.html">Nine:</a> That's what I want for you in this ninth year, which changed everything for me thirty years ago. I want you to know what that means. You will always be yourself. There's only one Lenny. Don't let anyone forget it.<br /><br />
Ten: (empty space where words should have been)<br /><br /></i>
And, before we get to eleven, I want you to have some last words.<br /><br />
You finally showed me that resilience essay. In it, you wrote: <i>When we started learning about resilience, I could tell my mom had been resilient…Resilience to me is the ability to see past and bounce back from life’s setbacks. To overcome struggles and see meaning in life.<br /><br /></i>
You wrote about me and about famous and resilient people in history. And then you chose this ending, which astounded your teachers: <i>“Resilience cannot be learned or found: it is a choice we make, a path we choose to take, a trait we choose to acquire.”</i><br /><br />
I don’t even know if I actually agree with you—but it sure sounds good.<br /><br />
For the last five years, I have taught poetry to your class for your birthday. For the last two years, one of the styles we learned was haiku. Haiku are wonderful because the beginning is also the end. Last year, in fourth grade, you wrote this:<br /><br />
<i>lilac trees, purple<br />
and white, birds nest up high in<br />
the sky, sweet bird songs<br /><br /></i>
and this year, for your birthday, you wrote:<br /><br />
<i>in early March air<br />
I sit outside, enjoying<br />
my eleventh year.</i><br /><br />
<i>Eleven: Me too, honey, me too. And the third thing I want you to remember is that there is an exception to reading the last line first. When you have children, you never want to read the last line. You never want to know how it turns out. You don’t want to see the ending. There’s nothing that could happen in between that would make it not worth working through.</i><br /><br />
I love you. Happy eleven. --Mom<br /><br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-33782715301270460942017-01-24T21:14:00.002-06:002017-01-24T21:57:29.714-06:00Day 2,325: I Once Knew a Patriot
I was born in 1975 and the short arc of my history has lasted just 41 years, longer than I expected by 37, 32, 17, 6, or 3 years, depending on how you look at it. During four decades, administrations and social movements came and went, and injustice and inequality remained--though progress was made, it came in fits and spurts. The rights some had didn’t extend to everyone, neither in theory nor in practice. But in that time, no matter how tumultuous, some constants remained. <br /><br />
The press prided itself on holding public officials accountable, and were not prosecuted for it. We had religion and we had federal policy but they were not one and the same. Our highest public officials did not expect nor require adulation. Power transitioned peacefully, elections were held on time, losers did not refuse to concede, and most of the time, the Supreme and other Courts did not appoint politicians over the will of the people. Foreign governments did not interfere with our elections. Generals did not control our cities. Conflicts of interest mattered, and politicians at all levels could be held accountable. Individuals and communities protested, and sometimes, people were jailed, beaten, or even killed. When this happened, it was a blight on the country’s image. Sometimes, social progress was borne out of those struggles. Sometimes, it wasn’t. Civilians who worked for federal agencies were just that, civilians doing a job, and neither Congress nor the Presidential Administration wielded power over their livelihoods or ability to communicate with the public at large or public officials anywhere. Science was a goal, one of the highest and most esteemed professions; as students we learned about “scientific methods” in order to understand what was true, what was provable, and, even, what was important. Science was not seen as dissent, as going rogue. Academia was revered, being smart and learned was seen as a benefit to society. Enabling children to attain high levels of education was a goal we were bad at doling out equally…but it was a goal all the same. Society sought to fight the specter of nuclear war.<br /><br />
We had truth and we had lies and we had a general understanding that there was a difference between them, which was important.<br /><br />
It used to be different.<br /><br />
And when it was different, I knew a patriot. I’m writing this here to let you know that I remember.<br /><br />
I once knew a patriot who was a nun who knew I was an atheist and liked me anyway. She was so fierce in her activism for the poor that her order eventually forced her out of Chicago to a small town in Iowa, where she would be less conspicuous. I asked her why she would be asked to give up her calling just because she was so good at it, and I thought she might cry when she invoked God’s will. She is just one face that comes to mind as I think about the patriots I’ve known. There are hundreds more behind her face, and thousands behind the memory of the hundreds, and millions more besides.<br /><br />
I once knew a patriot. In fact, I knew quite a few. <br /><br />
I once knew a patriot who stood up for the rights of the disenfranchised. He came from Wales. She came from Mexico. He came from Haiti, India, Cuba, the Netherlands. She came from Ghana, Puerto Rico. He and she came from Bronzeville and the Bronx, the plains and the panhandle.<br /><br />
I once knew a patriot who dedicated her life to studying and attempting to eradicate inequality. She had been raped. He had had a drug problem. He was a Rhodes Scholar. She graduated high school at 15. She spoke seven languages fluently. He was a doctor. She had had an abortion. He had cancer. She didn’t have legs. He had been in prison. She had to escape her abusive family. He had been homeless. He married a man. She didn’t see the point in getting married, to a man or a woman or anyone.<br /><br />
I once knew a patriot who protested war. I once knew a patriot who criticized the President. I once knew a patriot who didn’t believe in God. I once knew a patriot who was devout but not Christian. I once knew a patriot who wrote poetry instead of doing other things she could have done. I once knew a patriot who didn’t trust the police. I once knew a patriot who didn't believe in patriotism.<br /><br />
I once knew patriots, people of all walks of life, who did what they could to make the world a little less cruel, who spent their lives trying to be better and make something better.<br /><br />
I once knew a patriot who wrote things down.<br /><br />
And just because someone comes along and says this is all a lie, or calls him or her by another name, doesn’t mean that the truth isn’t true.<br /><br />
I once knew a patriot. I remember.
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-15300516434795520862017-01-17T16:53:00.000-06:002017-01-24T21:34:09.517-06:00Day 2,318: Inauguration PoemAccording to Wikipedia: "January was named after the Roman god Janus. Janus is also the Roman word for door. The god Janus had two faces which allowed him to look forwards into the coming year and backwards into the past year."
<br /><br />
<b>Janus<br /><br />
By Katy Jacob<br /><br /></b>
<i>1. The Door<br /><br /></i>
It's not just the <br />
opening or closing,<br />
but all of it,<br />
the slow, torturous creaking,<br />
frigid air being let in,<br />
the space the rats walk through,<br />
the slam, the memory of steel<br />
in the soft rotting wood,<br />
the whole thing unhinged,<br />
a knock knock knocking<br />
incessant in the night,<br />
it’s an opaque passageway<br />
to everything unseen,<br />
no way in and no way out,<br />
and winter’s black boot<br />
on the other side.<br /><br />
<i>2. God of Two Faces<br /><br /></i>
It isn’t a story of opposites,<br />
not so much comedy and drama,<br />
black and white, weeping and rejoicing.<br />
No, it’s the way the welcome sun<br />
blinds you from the snow,<br />
the lakes that turn into<br />
roads and resting places,<br />
the extra light that lets you<br />
see every bit of mud and decay;<br />
it’s everything that’s trapped beneath<br />
but will be dead by spring thaw.<br />
It’s not so much looking forward and back<br />
as it is not knowing where to look<br />
or how or with whose eyes.<br />
It isn’t the shock of the jagged scar down the middle<br />
reminding you that our faces are nothing but newborn bones<br />
but how easy it is to look, and to look away.<br /><br />
It’s a door, it’s a man with two faces, it’s <br />
a God from an empire that destroyed itself,<br />
it’s as similar and distant as<br />
any other Friday in January,<br />
the beginning of something unknown,<br />
and the end of something else.
Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-7125354934408472049.post-3323964619525908802016-12-31T20:37:00.000-06:002017-01-01T12:17:49.726-06:00Day 2,301: Home<b>22</b>
<br /><br />
It was all mine. I didn't have roommates. My boyfriend had a key and was there often enough helping me take care of the building that the tenants thought he was the landlord. They thought that about him, not me, though I signed their leases, took their money, planted the flowers, helped to exterminate the apartments, handled their emergencies, tried to fix the industrial-sized boiler with a wrench and a blowtorch that one time. There was a liquor store and a payday loan store on the corner but there was also a bank and a bus line that took me to the green line or the blue line, however I felt that day, though I almost always walked, give or take the weather. The floors in the living room were beautiful but so lopsided my bookcases sloped sideways. The kitchen had counters but few cabinets and we danced in that kitchen since we were too broke to go to clubs. I would sit on the back stoop and watch the backside of the Madison street businesses. I could see men, always men, taking out garbage, shoveling snow, making deliveries. I didn't have legal cable but we spliced the wires that had been left behind and I got a few channels, because back then, that was possible. At 24 I broke my own heart and it was in that apartment that I had to learn to begin dating again, not having done it since 17. I kicked a man out of that place when he didn't want to use a condom, and that's one of the clearest memories I have of my first place of my own: me sitting on the couch in my bathrobe eating leftover popcorn, watching him incredulously walk out the door. I held parties there, albeit small ones. I tried to make friends with my neighbors as white people always did on TV, but I found that wasn't for me. When I left that apartment, my youth stayed behind.<br /><br />
<b>25</b>
<br /><br />
I made $27,000 a year and was putting myself through grad school at night after working all day. Buying a condo didn't make sense, but I had saved enough money to do it, having no debt outside of $98/month in student loans back when interest rates were 7.5%. I found a mistake in the closing documents and wouldn't sign the papers until one of the largest financial institutions in the country gave in following my obstinate refusal to budge, and I was on their blacklist for years. I knew too much about the process. It was a second floor walkup, which means it was the third floor because this is Chicago and we downplay our struggles. When I had gallbladder surgery, my boyfriend at the time came over and walked down flights of stairs to help me with the laundry. There were two butler's pantries in the otherwise tiny kitchen and if I could have, I would have taken them with me to every place that came after. The condo had a shotgun layout, the only place I've lived as an adult that did not have a circular floor pattern. The building was vintage and I had no A/C, washer and drier, second bathroom or parking space. I eventually had a car while living there but I commuted by train and walked almost a mile home at 10 pm on weeknights after grad school classes ended. I rented a garage space a few blocks away and had to walk through dark alleys alone just to get home. I was an adult woman in that apartment, learning to have new boyfriends or lovers, throwing larger parties, refinancing and getting rid of my PMI. I didn't so much as paint in that place, and I made $50k on it by the time I walked out the door three and a half years later. I didn't walk alone; my fiancé came with me. He had moved in when we were 28, 7 months after we met, after we kissed for the first time in that shotgun hallway while he held some of my homemade banana bread in his hand. It was in the larger of the two bedrooms in that place--when I thought it might be better to leave him because he was being such a jerk--that he handed me a pearl ring he had hidden in his pajama pocket and said "I'm sorry, Kate, but I still want to spend the rest of my life with you. Will you marry me anyway?" That was one of many things I did anyway.<br /><br />
<b>28</b><br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2tj3abAwGO_593lO5pSBVFFRQvLUxrQuA_u7q4o2-d6AmeZ0jmr7sYLVnII8V-GAvRDWnBKkLV_1SLfT98ufcYLG5VGQjSFzswvwckil92CpfpS3omN7lRM2sMZOwVO1bvtNkApFpKNU/s1600/prospect.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2tj3abAwGO_593lO5pSBVFFRQvLUxrQuA_u7q4o2-d6AmeZ0jmr7sYLVnII8V-GAvRDWnBKkLV_1SLfT98ufcYLG5VGQjSFzswvwckil92CpfpS3omN7lRM2sMZOwVO1bvtNkApFpKNU/s320/prospect.jpg" width="320" height="235" /></a>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVQRSzCx18FPu8fbmoyRpVguGeaaccMSCEC2cwvBm0eMRILTGWxQZLtVPyAscGFrA6KK5uqc5u2TD6NCbulheDZxBR57geKApR6Jt9Zr7PToeoYvFdApD-Gp8D6yYMeiMN1MgPKNxviw/s1600/gram.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVQRSzCx18FPu8fbmoyRpVguGeaaccMSCEC2cwvBm0eMRILTGWxQZLtVPyAscGFrA6KK5uqc5u2TD6NCbulheDZxBR57geKApR6Jt9Zr7PToeoYvFdApD-Gp8D6yYMeiMN1MgPKNxviw/s320/gram.jpg" width="320" height="240" /></a>
<br /><br />
A few weeks after we closed, I turned 29, but 28 is precise and true. We negotiated the deal from Puerto Rico, where I had been sent for a conference, and my fiancé came along for fun. The house was an absolute mess in a neighborhood I had never heard of, on the far south side of the city. It was dark and dusty and the beds weren't even made. But there was ivy crawling cautiously up the red brick, beautiful windows, pine trees in the front, a huge expanse of back yard, a woodburning fireplace, and even a magnolia tree. We learned later that the couple who lived there had raised their family with the couple next door, and the husbands one day decided to "surprise" the wives with news of new construction built in the far south suburbs, and the couple who lived in our house almost got divorced, thus explaining why it looked like they weren't trying to sell the place, because she wasn't. It was 2004 and we paid too much and lost money on it in the end but not as badly as others did. When we came home from our wedding, it was still afternoon, and we opened the gifts we hadn't registered for in the living room of the first home we owned together. The day before the wedding, our car was broken into in our driveway. Both of our children came home from the hospital to that house. I designed and managed the rebuild of that kitchen and for that reason I sometimes miss it. We installed a new roof, windows, wiring. There was a steam shower in the basement, and towards the end of our time there, I sat on a stool next to that shower while my husband shaved my head with a bic and a can of barbasol. I became a mother there and with that I met other mothers. I will always remember lying on the couch in that house, pregnant with my son, trying to stay awake for the 2008 election results, and failing. When the phone rang and roused me from sleep, I knew before hearing who had called that he had won, that we would always be able to say that we lived on the south side of Chicago when President Obama was elected, just a handful of miles from where the first black President had once lived. But with hope comes the reminder of struggle and pain. I had cancer in that house--my world split from being the promise of young motherhood and the height of my career to something else entirely. With that, I couldn't feel much nostalgia for a place that held birth but also the possibility of death, new life but also the reminder of suffering. When we left, we didn't, because we couldn't sell. We became landlords, and I was crazy for suggesting we buy the next house in the first place, but we just jumped, and did it.<br /><br />
<b>35</b>
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKiEf8D2T0fTxX2XBoXpkPfySIuPdcLiL7Gbo-9D_RZh0I3k5zPSZUZY8XYz9NS1H8rTk_QOTge5GBw1cjVE6F8d_73EWelw2NnB_hD3ONgDRA_ZJkTDX6Tok7cKdyyhe_B9biZkn-kyw/s1600/trees.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKiEf8D2T0fTxX2XBoXpkPfySIuPdcLiL7Gbo-9D_RZh0I3k5zPSZUZY8XYz9NS1H8rTk_QOTge5GBw1cjVE6F8d_73EWelw2NnB_hD3ONgDRA_ZJkTDX6Tok7cKdyyhe_B9biZkn-kyw/s320/trees.jpg" width="320" height="239" /></a><br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhad4qoGDuZ4JTNFUIH2eOvf5OtxXwi4EF6zj3xm2nAEqX03yIuJH4liF_ElPn3bebkbbbcdZ5Q8WGh8i741-9nD1Yodhin-0_wfuGdSdSVyM7v4LR1w9qa7noAj_Faxz8dIDMy50RDLzk/s1600/longhall.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhad4qoGDuZ4JTNFUIH2eOvf5OtxXwi4EF6zj3xm2nAEqX03yIuJH4liF_ElPn3bebkbbbcdZ5Q8WGh8i741-9nD1Yodhin-0_wfuGdSdSVyM7v4LR1w9qa7noAj_Faxz8dIDMy50RDLzk/s320/longhall.jpg" width="239" height="320" /></a><br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqe44cgH0Fmqa2DU0UdTDgMNqZAnkiv4M3AFmo74LBxbwJkSGnJs9OjQ4o7aZAtazHoWv0xFZJXqbs1WhfymKTCb0_H4fSlW3rfup-e_UQ-xgEAWh2TCvn3qjRTCub5K6pK1gBLvPIez8/s1600/longwood.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqe44cgH0Fmqa2DU0UdTDgMNqZAnkiv4M3AFmo74LBxbwJkSGnJs9OjQ4o7aZAtazHoWv0xFZJXqbs1WhfymKTCb0_H4fSlW3rfup-e_UQ-xgEAWh2TCvn3qjRTCub5K6pK1gBLvPIez8/s320/longwood.jpg" width="320" height="213" /></a>
<br /><br />
What can I say? My husband might never forgive me for making us leave. We bought it out of foreclosure, and two of our old houses could fit inside. There were three full sized ovens in the kitchen once he had them installed. We built a second floor laundry room next to the expansive landing large enough for furniture of its own. There were so many windows there were windows in closets, inside the chimney, windows so huge I couldn't even lift them. The space...the space! The sledding hill in the front yard. The library in the hall, the attic that was so far removed from everything else we couldn't hear our children scream at each other. The front porch was screened in and was almost half a city block long. My husband removed snow from the 125 foot winding driveway with a shovel. We could watch the sun rise and set from the third floor, above all of the other buildings in the area. We had a breakfast room and, for the first time, a garage. We held parties for almost 100 people and somewhere down the line, we became known for those parties, which still surprises me. Our porch was a gathering place. We got married there, again--right there in our yard, with the sloping hill of an aisle and a place for every guest. Our children will remember that house as the beautiful one, the one that was a magical place to be a kid, the one with hiding places and enough room in the front yard to go long for a perfect spiral. But utopia doesn't exist, and death crept in there too, as I recovered from an amputation there and struggled through cancer again, and maybe even worse, chemo again. We turned 40 in that house when I wasn't sure if that was possible for me. When we left, my husband cried, my children cried, and I thought I would miss it forever, but I was wrong. I didn't cry and I didn't regret it, even if the rest of the family held it against me. It was a beautiful place to be alone in, to steal away from the world, but the world was always there, and we had to go.<br /><br />
<b>40</b>
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0a9WeGAJbq1NtwzUlNCeHlItk5SzdmnQJGiXawh6e-iJ87vi9azmMS0es-gTjHvJFswm5yHYyZtIcChn3whqRj-OH7s2-Y89xKoDyz3lr6OOQNX_4eElDxhWVGGQoV6f6wyolHbDvYhg/s1600/kidsnewschool.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0a9WeGAJbq1NtwzUlNCeHlItk5SzdmnQJGiXawh6e-iJ87vi9azmMS0es-gTjHvJFswm5yHYyZtIcChn3whqRj-OH7s2-Y89xKoDyz3lr6OOQNX_4eElDxhWVGGQoV6f6wyolHbDvYhg/s320/kidsnewschool.jpg" width="240" height="320" /></a><br /><br />
This house is what we were looking for when we left 28 and stumbled upon 35. It is the same in many respects, but with an extra bedroom, a half bath on the main floor, a one car garage, central air and a playroom in the basement. There's a Harry Potter cupboard under the stairs, a bay window in my office, a beautiful yard in a town where those are hard to come by, red cabinets in the kitchen, an open front porch, and way too many problems to fix. It's too small I suppose and we haven't had our first party yet. My mother lives less than a mile away and our kids love the neighborhood and school to distraction. There are no more children to be born, no more milestones of our own to claim, at least not any that don't seem impossibly distant (like our 20 year anniversary or me turning 50. can you imagine? me? 50?). The coming milestones are all theirs: middle school and high school and turning 13 or 16, learning to drive, falling in love, finding themselves. We are so grown here we have nowhere else to go. The house is a house, not a symbol of itself. I find myself hoping I don't have cancer again, period, not hoping I don't have cancer here. My hope is that we are given the chance to leave this place on our own terms, as we have done before, because the kids are done with school and we don't need to be here anymore. I hope we leave together, because we have made it as a couple, because I have made it as a person. <br /><br />
I have moved us again and again and in truth it has been me, I have pushed us in and out of houses. If any of these walls could talk I cannot imagine what they would say, but I will say this: thank you, and I will always remember you and love you and the way you held us and let us go.
<br /><br />
Happy new year, everyone. May you always feel at home.<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR8oCCNvbGIyCMiP6vCTTb-44q7TdcVNFVw_Ib50SP_Rf8mVXbG8yeQA304n-CxQY4V5PKpvU14HZvtbx4dQP4c6VicVTfEgJ0Fr7L_hO9rAeFI0Bq-cH2fjMvmpCv8Si5W_7iuokXfQ0/s1600/belleforte.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR8oCCNvbGIyCMiP6vCTTb-44q7TdcVNFVw_Ib50SP_Rf8mVXbG8yeQA304n-CxQY4V5PKpvU14HZvtbx4dQP4c6VicVTfEgJ0Fr7L_hO9rAeFI0Bq-cH2fjMvmpCv8Si5W_7iuokXfQ0/s320/belleforte.jpg" width="240" height="320" /></a>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-34050791254162222382016-12-25T15:55:00.000-06:002016-12-25T16:05:07.639-06:00Day 2,295: Wise MenEven after six and a half years, I look around and realize I am the youngest person in the waiting room. Women who are much sicker than me, which is most of them, since as far as we know, I might not be sick right now at all, still look at me with a mixture of pity and alarm. It is worse now that I don’t bother to bring my husband with me to my appointments, unless a mammogram is involved, in which case, he isn’t allowed to wait with my anyway. I am 41 years old and nowhere near young, but when sitting on a couch alone, hair so short it isn’t possible to tell if it’s on purpose or not, wearing a Stevie Ray Vaughan tshirt I’ve had for over a quarter century so it can’t qualify as ironic, waiting for the oncologist—and I am confronted, again, by people who regard me as someone who shouldn’t be there at all.<br /><br />
And so I am young, but only because I am in an environment where it is normal to be old, or at least aging. I am healthy, which is regarded with some measure of suspicion, as most in the room are not. I am impatient, while many around me would probably like to wait a while longer to hear the news they are there to hear. I know what is going to happen, and I am not nervous, though I probably should be.<br /><br />
I know that the oncologist will tell me that I look great, that I am doing everything right, and that I should enjoy the holidays with my family. I know that I should feel relief when his three minute exam shows that nothing is amiss. But I don’t feel relief. I don’t feel fear or dread either, because I don’t feel anything. I am not here to learn whether or not I have cancer. I know now that I am likely to discover any solid tumors myself, as I have done twice. I also know that if my cancer has metastasized and turned terminal, I would most likely be aware of it already before I showed up at the doctor’s office.<br /><br />
I know that I am doing this because even cancer is like life, with its obligations and rituals.<br /><br />
Before my oncologist arrives and we dance the dance we agreed on years ago, wherein he forgave me for knowing too much and I forgave him for not understanding that, a young resident arrives. I had been expecting the physician’s assistant I have known for the last six years, and I was oddly looking forward to the small talk.<br /><br /> This woman who arrived instead is young, much younger than me, perhaps in her late twenties. She seemed impossibly new at this. As she began interspersing her medical questions with questions about my life, I realized that someone must have taught her to do this. It seemed obvious that she didn’t really want to know about my recent move, my kids’ adjusting to their new school, the fact that my son hasn’t had night terrors in years, my husband’s new job or our plans for the holidays. She asked questions and I answered them but she didn’t want to know. It was easier for her to ask me about my medications (none), any illnesses or issues (none), irregular bleeding since that D&C three years ago (none), any worries at all? (none? Except that I have a fairly large probability of dying much younger than I should, which is something I’ve had to live with for years, so it doesn’t qualify as a worry anymore…but no one says that, because no one wants to hear that). I briefly wonder what it is about her demeanor that seems so…off…though she is perfectly polite and professional.<br /><br />
It hits me the way only crucial things do, all at once and in such blinding fashion that you are embarrassed you hadn’t thought of it before.<br /><br />
She sees me, and she sees the differences between herself and me, which makes the similarities more striking. She doesn’t have children, a husband, a house, she is working on starting her career, not trying to take a break from it (she tells me these things either directly or indirectly). She also, of course, doesn’t have cancer, once, twice, or otherwise. I have done some of the things she would like to do and a bunch of the things she would not. If I am me, a person who fifteen years ago was like her in many ways, she could be a person like me in the future. I am older than her but not old enough. And as has happened so many times before, I find myself sitting in an exam room, trying to make it easier for the other person on the other side of the table. I feel relieved for her when she leaves.<br /><br />
When my doctor comes in and does all of the things I know he will do in exactly the fashion I expect, I am out of words. I have nothing to ask him, nothing to tell him, except that now that I have moved, we are neighbors, which I know he doesn’t want to hear. Instead of a question or series of questions, I just say the thing that needs to be said:<br /><br />
“I know there’s nothing for me to do, one way or the other. Just keep plugging along.”<br /><br />
“That’s right. There’s nothing for you to do that you aren’t doing.”<br /><br />
There’s nothing we can do, he is saying. You will either be in the 70% of women who ultimately survive this or you will not. I cannot tell you which woman you are. And then, the words underneath the words he does not say:<br /><br />
And what if I could? What would you do differently?<br /><br />
I think about that as I leave, after I make the appointment for my mammogram, wherein I explain in a normal tone of voice, when asked, “so it’s just a right side image you need? Do you have a left breast?” that no, I do not, there is nothing there to image. I think, if I knew how this would turn out, when I was a child, as a young woman, before I had children, or even now, what would I do differently?<br /><br />
And I think I would probably have quit my steady job in an uncertain time, jumped into buying a house before we could get rid of the other one, moved my family, held onto a concert tshirt bearing the image of the man responsible for my first-born’s name, taken the el to the hospital, fidgeted in the waiting room out of pent-up energy rather than nervousness, accepted my own anger as either a character flaw or understandable response to all the rest of it, and, when called upon to say something meaningful, I would have looked at the younger version of myself who didn’t know what was coming, as she wrote notes about a slightly-older woman in a chart naming which cells had gone wrong, and said:<br /><br />
“After doing this for a while, it gets easier.”<br /><br />
On a day when many people think about birth and death and what comes in between, for one reason or another, I leave you with this. I would not have done anything differently, even had I known—especially had I known.<br /><br />
Merry Christmas, everyone.
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7125354934408472049.post-67322523800583767612016-11-09T02:30:00.000-06:002016-11-09T02:30:07.551-06:00Day 2,249: Make America Great AgainWelcome to Trump’s America. There are so many things to say, but I am only going to say one of them. <br /><br />
Now is the time to rage. <br /><br />
I see it everywhere, on social media, in the so-called elite media, everywhere: now is the time for soul-searching, to hope, to pray, to show we are better, to teach our children love. And I am so tired of it. No. <br /><br />
Now is the time to rage. <br /><br />
We live in a false meritocracy. We live in a society hellbent on the belief that people get what’s coming to them, good or bad. If the world goes to hell in a handbasket, it’s karma. We talk about a revolution, and I am reminded of my Iranian professor in college who looked at a bunch of clueless privileged white students and said, incredulously, <i>do you know what happens in a revolution? A lot of people die</i>. She hadn’t seen her family in 17 years. I hear people say, when it comes to cancer, that your attitude is everything. A smile can cure your cellular dysfunction. I hear people say this about giving our children more freedom, not because they deserve it, but because THEY DON’T NEED IT. People say, but bad things don’t happen that often! Our kids should be happy! And I think, happiness is easier to come by if you don’t have to suffer horrific trauma first. <br /><br />
<i>Bad things don’t happen,</i> we tell ourselves, <i>everything will be fine</i>. But they do, and no, it won't, if we don't make it so. Terrible, awful things happen every day, to people everywhere, to most people. All of the horrible things that just don’t happen? Cancer, rape, child abduction, hate crimes, bankruptcy, the abuser winning, all of the things that seem impossible have happened to me personally or someone I know and love. Suffering is real. Chaos is real. Pain that doesn’t end except with death is real. This is not cynicism. This is not despair. This is not a bad attitude. This is an acceptance of the state of affairs of the world and a refusal to think it can be solved by “thinking better.” <br /><br />
White people are so afraid of losing the privilege whiteness has brought them that they are willing to sacrifice the greatness of their nation to defend a social construct. Men are so afraid of losing the privilege of their maleness that they would rather watch the world burn. The healthy, the rich, those who have never lost their freedom, who are used to winning, have the luxury of saying…I am ashamed, things aren’t as good as I thought they were, this country isn’t as great as I thought it was. Because you know what? It was only great for you. And no, that isn’t a way to segue into feeling sorry for those who feel left out and so voted for a person who will make them feel less left out than others. When the white supremacists love a man, when the KKK endorses a man, when everyone in a long laundry list of not good enoughs is suspect (black people, immigrants, Muslims, women, gay people, Jews), my sympathy is so lacking you’d have to scrape it off the bottom of my shoe. <br /><br />
Optimism has been spun the wrong way. Optimism is not what will save us. What will save us is an understanding that the world is cruel, and the only way to combat that is for people to make proactive decisions to combat it.<br /><br />
I haven’t written much in my blog in the past year or so. It isn’t because I have run out of things to say about cancer. I’m not sure I was ever really writing about cancer in the first place. It was cathartic for me, writing this. But I was trying to say something bigger, something about death, and how it is coming, and how knowing that changes everything, but not in the way you think.<br /><br />
I stopped writing because I was enraged at the state of affairs all around me, all the time, and I wanted to have some friends left, so I kept my mouth shut. I was enraged at white women in my age bracket, liberal women, who were so saddened and shocked by Ferguson and were writing blog posts about how they were starting to understand the terror of being black in America. Instead of thinking we had elevated the conversation, I was thinking, where the hell were you for all the 45 years of your life when this is how the world was? Why was it ok for you to not see it? Every time a man wrote something about how he realized it was wrong for unconscious women to be raped, because now they realized, or had a daughter, I wanted to rage at them for denying the humanity of half the world so casually it was akin to drinking coffee all their lives and switching to decaf because gee whiz I found out it was healthier. All of the “but I believe in the goodness of people” just made me angrier. I believe in the goodness of people too. I believe in the goodness of all the people who are deemed unworthy, whose goodness and humanity are denied every damn day. I know the work it took, the centuries of effort, to strip that humanity away, and I know that it will take a hell of a lot more than hope and prayers to make it right again. <br /><br />
Some time ago, maybe a year, a friend told me she had stopped reading my blog because I was so angry. I was offended, but only momentarily, as I’m not easily offended. And I was not offended for the reason you might think. <br /><br /> I was angry, but not about having cancer. If you read back on the six and a half years of this blog, you will not find any anger over that. I was angry at the injustice of how cancer was framed, at how illness and health are juxtaposed as oppositie sides of the morality coin, at the misogyny in treatment, the corporatization of disease.
I was never angry for myself. That is the kind of anger we just elected to run this country. I was angry over the injustice, which is collective, never personal. <br /><br />
I was angry because while I could accept that there are things that cannot change, such as having cancer, I could not accept that there were things that could change that did not because people refused to act. People prayed instead. People chose hope. People bought pink merchandise and ignored research. <br /><br />
If we organize over love and harmony, if we focus on the good of the world, we miss something crucial. Not everyone is loved. Harmony is rare. Good is a choice that can be thrown away. <br /><br />
When my children ask me if I will die I do not tell them of course not. I tell them of course. But hopefully not anytime soon. You never know though. When my son asks me, mom, how many ways are there to die, I tell him…infinite ways. But there are also infinite ways to live. I do not ever say “everything will be fine,” though I sure as hell wish someone would say that to me. I say “things will fit into the world we live in, and I am trying to make that better for you.” <br /><br />
I am not enraged at this election simply because it affirms that a large portion of society doesn’t believe in my humanity. Yes, it grieves me that the message is that I am not fully human because I am a woman, because of my religion, because of my disability, because of my health status, because I have loved and fucked people who were not white or Christian, because my husband has been hungry and homeless, because I have been sexually assaulted, because I might die young and not be worth the trouble. <br /><br />
My rage is not for me, or even for my children, or all of the people I know and love who are less protected than I am because of the color of my skin or the zip code of my residence or my ability to pass as God-fearing if I need to. My rage is bigger than that. <br /><br />
I am enraged, as I always have been, that we have been given this gift, of living in this world with a myriad of people and possibilities, and we choose instead to squander it and host competitions over who is worthy. I am enraged that I am so so tired, I have been through so much over the last six years, and all I wanted was some time to relax and focus on my kids, and now I don’t know what kind of world I am raising them in, so I cannot relax. <br /><br />
And so this is what I am saying, what I have always been saying. It is not enough to want things to be better, to believe in a better tomorrow. It is not enough to want the world to be a better place. We have to know that the world is capable of being a terrible place. We have to believe the people who tell us it is so. We have to recognize that much of human history is the story of people trying to will other people out of existence and the rest of human history is the enraged fight of survivors who refused to let that happen. <br /><br />
Years ago, I gave a speech when I left a job. I was the research director of a small nonprofit working to help people who were underserved by the financial system. And when I left, I felt this need to say that I did not do the work that I did because it was right, because I wanted to help people. I did the work because I had been the people we were trying to help, and I knew I could be one of those people again. If the shit hit the fan, I wanted to be a part of a world that made it harder to stick to the wall. And, here is the punchline: I believed the shit would hit the fan. <br /><br />
Boy, did it. <br /><br />
A few weeks ago, my husband became frustrated with me over how obsessed I was with local racial politics in our old neighborhood. Katy, he said, I thought this would change when we moved, I thought you wouldn’t be so focused on this anymore. Can’t we be happy we are here? That we got out? <br /><br />
I will admit we have been stressed, with moves, and me quitting my job. But let’s face it: that’s just a smokescreen for the fact that right then and there, I wanted to divorce him. <br /><br />
<i>How dare you,</i> I said. <br /><br />
And through my anger and sadness I said what I have been wanting to say, what I have been saying all along, what I beseech you to say to yourselves: <br /><br />
<i>This anger is the only force that ever changed things. This anger has kept me alive. This anger is not a byproduct of my experiences or personality. <br /><br />
This anger is my best thing. It is who I am. How dare you try to take that from me.</i> <br /><br />
And lest you think I am lost, I forgave him. <br /><br />
Welcome back to our America. It was never as great as we thought. Doesn’t that make you mad? <br /><br />
It should. <br /><br />
Let’s get to work.
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7125354934408472049.post-65687966342345095292016-11-03T11:50:00.000-05:002016-11-03T11:50:35.741-05:00Day 2,243: Fly the WOn September 10, 2001, I ambled past a security line that didn't exist yet and made my way to the front row of the first base side of Wrigley Field, so close I could hear the opposition talking in the dugout, with a man who had a child he didn't want me to know about, and watched the Cubs crush a team from Ohio on the night before the ballparks closed and the planes stopped flying.<br /><br />
As a kid, I didn't play baseball, except the one summer, when I won the sportsmanship award, since I had such a good time watching other people care more about the score than I did. But my brother was a pitcher, and when I was tiny, say, 4 years old, I learned to keep statistics at baseball games. This was back when families considered children differently. I had taught myself to read the year before, so they figured I might as well bring a pencil and paper to the game and make myself useful.<br /><br />
At home, my childhood summers were filled with the sound of wiffle ball games and pinners and the Cubs on TV in the background of everything we did. I traded 45 records for baseball cards with my brother and the neighborhood boys. I always wanted to get Ron Cey and Gary Matthews. Who are they? you ask, if you're not from Chicago.<br /><br />
When I was 20, I lived in Chicago for one semester, and one day, we walked from our apartment to Wrigley, on a whim, paid $5 and sat in the bleachers. No one wanted to go to the games then.<br /><br />
When I was 26 I agreed to go to a Cubs game with my ex-boyfriend, and it was a Cardinals game at that, and he had lost a bet and was forced to wear the St. Louis jersey. It was over 100 degrees and we were in the bleachers, and we waited and waited for the game to start, but it never did. There was no social media then, no texting even, but phones started ringing all over the ballpark, rumors started swirling, and soon enough we learned that Darryl Kile was dead, done in by a heart attack the night before, and they called a baseball game off for grief. I've always wondered if we knew he was dead before his family knew.<br /><br />
I had a professor in college who loved baseball more than was probably rational. He visited Chicago a few times every summer just to watch the Cubs play, and I met up with him once beforehand in a Jewish deli where we had pastrami and cream soda. That day, Kerry Wood, who was 20 years old, threw 20 strikeouts, and after the game, my professor called me to say "When I die, I will be able to say that, if nothing else, I saw that happen."<br /><br />
My 10 year high school reunion was held in one of the frat-boy bars of Wrigleyville about a block from the park in 2003. I'm sure the planners didn't even consider that the Cubs would be playing in October. It didn't turn out how we expected; really though, does anything? That night a guy named Steve Bartman reached for a ball, and our reunion, the neighborhood, our city and our collective consciousness exploded in a fit of misplaced rage and endless, gut-wrenching disappointment for so long we forgot what it was really about.<br /><br />
One day I turned around, and I was grown. It happened slowly and all at once. It was now my job to bring baseball to my kids, so one Saturday I took my daughter to a game and inexplicably caught a foul ball hit by Nate Schierholtz, but I thought my hand might break from the impact and I dropped it. She reached down for it and a grown man took it from her, until another man gave him a Chicago look and he looked at us full of beer and sheepishness and regret and handed it over. <br /><br />
A few years later, my husband and I saw a young kid, only 22, hit a grand slam in the first game of the NLCS.<br /><br />
I found myself knowing there was other parenting advice to give, but telling my son anyway that a triple is the best play in sports, because it doesn't exist. I could have told him something about grace and what lessons there are to learn, but instead I told him <i>a triple's just a double and a guy who ran like hell.</i><br /><br />
That same son is a switch-hitter, if for no other reason than he started playing ball before he knew you were only supposed to walk to the plate from one side and not the other, and we didn't bother to correct him. This year, right around the time he turned 7, he finally had the chance to play catcher on a day that was so hot his coach poured water and ice over him in the middle of every inning, as the catcher's equipment weighed almost as much as him, and he was dripping with sweat and his face was so red he looked combustible, and the team he played was older and slaughtered them until the game was called early. Kids on his team were crying and exhausted and frustrated and I wondered what to say to him when it ended, deluding myself, as parents do, into thinking I had something to teach. He looked at me and said "That team was really good, weren't they? Wow. And mom! They let me catch for four innings." He was all smiles and I knew if given the chance, he would've started right in again.<br /><br />
For years, we lived on the South Side, and commuted several times a year to watch a team that charged too much for everything, considering. It angered us, the money and whiteness of the crowd, the inaccessibility of it all, the greed, and we kept telling ourselves we wouldn't do it anymore, but we lied.<br /><br />
We had Harry Carray and then we didn't have him anymore. Ron Santo died before he was inducted into the hall of fame. Sammy Sosa blew kisses to his mother and thrilled us while he lied and cheated and our hearts broke. Next year never came, someday sat out in the distance. They built buildings for the sole purpose of selling tickets for a chance to watch a team that never won when it counted, across from the only ballpark anywhere built amidst apartments where people actually lived, where you could watch the El speed past, where you could never forget you were in Chicago, no matter how hard you tried.<br /><br />
And because we are who we are, even our hopeful refrain on its best day sounds like an existential plea: <i>Fly the W.</i> It's the sports version of Fats Waller telling us, <i>let's waltz the rumba,</i> because it's impossible, really, but...why not?<br /><br />
Why not?<br /><br />
In a city beleaguered by its own faults and dealings, in the shadow of our tragic violence and corruption, we made a legend of failure in a beautiful canvass of brick and ivy.<br /><br />
For more than 100 years, we followed a game that looked like ourselves, full of unfulfilled promises, scandal, injury, illness and even death, because we couldn't help it, because we knew that any history is the story of the most deserving people never getting to see their dreams come true, because the possibility of winning would be a redemption for our memories.<br /><br />
And then, next year came, and we found ourselves in someday. The night was long and the rain was imminent and we couldn't decide whether to watch or hide or sleep. And then?<br /><br />
We saw ourselves jump with the joy of childhood, this motley crew of us, this multi-racial group of rookies and retirees, immigrants, Ivy-leaguers, and cancer survivors, and at that moment, our reflection seemed perfect.<br /><br />
In 2016, the Chicago Cubs won the World Series, and we were alive to see it happen. <br /><br />
Holy cow.
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7125354934408472049.post-3244257325078221442016-10-11T16:59:00.000-05:002016-10-11T16:59:48.325-05:00Day 2,220: Don't Die in Fear or IgnoranceApparently, if one fails to pay attention to one's blog for enough time...such as almost two months...trolls find said blog and begin peppering old posts with comments, mostly of the snake-oil variety in this case. There has to be a special place in hell for people who seek out cancer blogs only to try to sell some "I WAS ALWAYS AFRAID OF BREAST CANCER BUT I GOT IT ANYWAY AND DOCTORS PRESCRIBED CHEMOTHERAPY BUT IT WASN'T UNTIL I CALLED DR HILLARY AND TOOK THESE NATURAL PILLS THAT I WAS CURED 4 LYFE" story. I just deleted about 15 of these comments that have crept into old posts since I last wrote, on my 41st birthday. One of them was even about "weak erections," which I find oddly comforting. I picture this man, with his poorly spelled words and inappropriately excited punctuation, "failing to satisfy his wife" and somehow landing in the annals of the breast cancer blogosphere and feeling at home. We've all had our moments of weakness. It's nice to be needed.<br /><br />
But I digress.<br /><br />
I'm here today, when I haven't been here in such a long time, because someone included the following line in a two paragraph post, complete with email address and phone number, for an herbal supplement GUARANTEED to cure triple negative breast cancer. I was furiously deleting when I saw it:<br /><br />
"Don't Die in Fear or Ignorance."<br /><br />
Ah, yes. Of course. It's really a question of philosophy, isn't it? Is it better to know, or not to know? Is it better to fear things and do them anyway, or never fear and not understand the consequences? Since we all know that death is coming, is it better to think of it often, or not at all?<br /><br />
I'm sure that's what she was getting at, this woman who didn't want me to die in fear.<br /><br />
But because we are who we are, this is the kind of thought that permeates our little household. I wrote last time about how my kids were going away to camp for the first time, to Camp Kesem, which provides a free opportunity to the children of parents who have/had cancer to bond and experience adventure. They dreaded going, and of course, they dreaded leaving. <br /><br />
I saw a change in them both, but my daughter especially, when they came home. She spoke differently, almost like a teenager, she clearly had a crush on one of the college boys who served as a counselor, and all she could talk about for days was camp, and going back, and when she could be a counselor herself. My son clearly loved it, but maybe for different reasons. He didn't seem to find himself so much as he had an opportunity to just play and be crazy without us around for a week. The things he remembered the most were the things they did when they were supposed to be doing something else, like sleeping. I could relate. I always wanted to go to camp, for the freedom from adults more than anything.<br /><br />
But while this was camp, it was no ordinary camp. Every kid there had a life touched, or forever marred, by cancer. I thought briefly about that before sending them, but mostly I was excited about a free week without my children. Gabe and I were like teenagers, going out every night to different bars or restaurants, having sex in the middle of the day, eating pie for breakfast. I'll admit that I didn't really miss them, because I knew I would be seeing them soon, and that they were having an incredible time--as were we.<br /><br />
I did notice something when we arrived at camp to drop them off, however. I stood in this big chaotic room full of people and realized that every adult there either had had cancer or was the spouse or partner of someone who had cancer. I realized that everyone knew this, and no one looked askance at me. The 19 or 20 year old kids--all of whom, I'm sure, have a close connection to cancer themselves, or they would not volunteer their time to this cause--looked at Gabe and I knowing one of us was a cancer survivor, and they didn't even blink.<br /><br />
We were in the place where cancer was normal.
<br /><br />
I felt that, and realized I had rarely felt it before. There was no reason to hide nor declare anything about my cancer. It was a fact like the color of my shoes.<br /><br />
Other than that, however, my kids' stories of camp seemed typical of any camp--until my daughter told me about "empowerment." During empowerment, everyone had the opportunity to stand up in front of everyone and tell them why they were at Camp Kesem. I could not believe that my kids actually did this, but apparently, they did. They told me they went up together, but Augie didn't say anything. He let Lenny do the talking--but she wouldn't tell us what she said. She did, however, tell us this:<br /><br />
"Mom, Empowerment was really...sad. A lot of kids there had parents who are dead. One of the boys who was there had his dad die just this summer. He said that he felt lucky, because he had 10 years with his dad, while his one brother only had 8 years and his youngest brother only had 5. Isn't that sad?"<br /><br />
Pause. Such a long pause.<br /><br />
"Well, yes, of course it's sad. I'm sure someone talked to him about it like that, to help him find something positive in it. And it's true. You can think about things in that context. I mean, you're 10. You've already had 10 years with me and I'm not dead yet. I don't appear to be dying anytime soon, though you never know. But it is always sadder for someone else. You can think about luck like that. Sometimes you or your family are the lucky ones and sometimes you aren't."<br /><br />
Gabe looked at me like I was the person who always said the thing that no one should necessarily say, but he loved me anyway. I wondered if I had botched that one, but I don't know how to be a different person than the one I am, so I didn't try to fix it. Then Augie piped in:<br /><br />
"Yeah mom, you could still die. YOU COULD STILL DIE." <br /><br />
He was angry, like I had been holding out on him. I thought he knew that, that he thought about it all the time, but I think being confronted by dozens of kids in real life who had that exact experience made it real for him in a way that made him, well...mad at me. And he's been mad at me in some way ever since. He's been a little bit more incorrigible since camp, and I wasn't sure that was possible. I suppose there could be 100 other reasons, but that seems as likely as one as any. He knew I had cancer. He knew it was bad. He knew it could kill me, even. But I don't think he really knew that meant I wouldn't be there at all, that I would disappear, that he would be a kid with a memory of a parent instead of a parent. And it pissed him off something fierce.<br /><br />
And so there's the question. We all know, but maybe we wish we didn't. There's always a balance of fear and ignorance and stoicism and knowing. There's always someone else who had to learn a harder lesson than you, and not for any reason at all. There's always someone who will know what they know and become introspective, and there's someone else who will know the same thing and become incredibly angry. I don't know what any of that says about any of us--I'm not sure what any of it means.<br /><br />
But I do know one thing. We can all find a way to remain ourselves. And so I answered Augie:<br /><br />
"You're right. I could die. I will die. We all will. But not today. Not yet. So lower your voice. Get out of my kitchen. I have to make dinner." <br /><br />
And instead of scowling, he laughed, and ran off, recognizing me in that moment as the woman who is his mother, not the woman who was.
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7125354934408472049.post-49700161294666548792016-08-22T16:39:00.002-05:002016-08-22T16:39:41.282-05:00Day 2,170: This is 41
Today I am 41. Since a few months before I turned 35, my entire range of future vision was focused on turning 40. I wasn't at all sure that I would make it--especially when my cancer came back when I was 37. But, make it I did, and I spent a busy year changing all sorts of things about my life, all while feeling very happy and comfortable with 40.<br /><br />
But now I am 41. And it seems...strange.<br /><br />
It isn't an issue with being middle-aged while still feeling like a teenager. The only reason people say that they feel like teenagers for the rest of their lives is that it is at that point in life that you realize that you really are yourself--flaws and eccentricities and all. It isn't that older people are obsessed with feeling young. It's that youth still begets personality, and that sticks, and once you have some measure of maturity, you realize that you are left with no one but yourself. There isn't anyone else there, nor will there ever be. So it's not that 41 is strange because I should be young still. Too much has happened in this life for me to feel that way. It's just that 41 is older than 40, and I never imagined beyond 40. I never even imagined it before cancer; I always wanted to be an old lady, just so I could fully capitalize on my natural inner curmudgeon, but I could never really picture it. I've said that here before: What would an old Katy Jacob be like? Or even a middle aged one? I suppose with all of the things that happened, I just assumed I wasn't meant to live a long life. I didn't assume that in some maudlin fashion, I wasn't feeling sorry for myself--it just seemed an oddity, the idea of it.<br /><br />
And somehow 41 seems closer to that reality than 40. Now, I can't use 40 as my goal. I have to change the game. If the focus shifts to 50, well...that changes everything. The kids would be mostly grown. I'd have lived a half century. Since I was born in 1975, I'd have lived equal parts in the 20th and 21st centuries. It would be kind of...awesome.<br /><br />
So, I hope I make it. I hope we all do..<br /><br />
In the meantime, I am sitting here in the office of my new house, a day after dropping my kids off at sleepaway camp for the first time in their lives. Following an idyllic week in the north woods of Wisconsin, we meandered through towns with names that made us stop and grin and found our way to a campsite where our kids would spend a week, free of charge, bonding with other kids whose parents have/had cancer as part of Camp Kesem.<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLzAocITm451jtPICFF4TqofipWozLQ0_XPxZINgqn4_VEc-lhh2Dbfb1GU112_EioJeDuGMjdCsWvnQlKI_f-ODyamP4vNCa2V0oIJoKX9SeWEGAl5jQZh2awiNrascJoxBMWYI_S1uw/s1600/random.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLzAocITm451jtPICFF4TqofipWozLQ0_XPxZINgqn4_VEc-lhh2Dbfb1GU112_EioJeDuGMjdCsWvnQlKI_f-ODyamP4vNCa2V0oIJoKX9SeWEGAl5jQZh2awiNrascJoxBMWYI_S1uw/s320/random.jpg" width="320" height="240" /></a><br /><br />
Our kids have never spent more than two nights away from us. I have spent longer than that separated from them, due to work travel. But at those times, they were home with Gabe. They were both very nervous about it, Lenny especially. I admit that we are asking a lot of them right now. Let's move, and then a few weeks later, you will go to camp for the first time, and the day after you get back, you will start a new school where you only know one other family.<br /><br />
Trial by fire, as they say.<br /><br />
This is a traditional camp experience, with no communication between kids and parents during the week. We wrote letters to them that will be passed out every day, but our children are very used to having us sing to them, talk to them, read with them. Lenny could not imagine how she would do it, to be away from us and all of her things and comforts. Augie was mostly concerned about not knowing anyone. Gabe was worried about them and about himself.<br /><br />
When we dropped them off, we saw their bunks, toured the grounds a bit, waited while they got checked for lice. Then, some of the college kids who work as counselors (who are these kids? I wonder...kids with a parent with cancer? kids who just really like camp? I'm curious) figured out that our kids were in their groups and took them away, with barely enough time for us to say goodbye. I should say that in this camp, everyone has to choose a camp name. Augie chose Hobbes because of his obsession with Calvin and Hobbes, and Lenny could not decide on a name. We suggested Mercury, because our kids love myths and she's a really fast runner. She shrugged and accepted it.<br /><br />
So we quickly hugged Mercury and Hobbes and started the three hour drive home, meandering through small towns just as we did when we were dating and had no where particular to be. Gabe cried and cried and I laughed at him and that is what we do. I realized then, and today, that I had not spent a birthday without children since I turned 29 (when Gabe and I closed on a house instead). I spent my 30th birthday pregnant with Lenny, I've been in the middle of chemo during two different birthdays in my 30s, all kinds of things have happened...but it was a lifetime ago when I was just myself, not a self who had given life to other selves.<br /><br />
I know I should have cried, but I don't do that. I know I should have felt verklempt at least, or shocked at how the years pass, or raw with my knowledge of how I would miss them, or worried, or...something other than what I did feel.<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyMb1FMV-AJtPuWvLSTOeFwMfdaZWE3uPcpE7mBE6Vo36wqMfSo4DbuIdQQZlqaHjSuQoccLkq5YnJKQgFse4FizbYT6M4LA7v5QVPbL8uQnodMiwOQB8GoLuJFm9i0GyriLND5A8DxF0/s1600/14089292_10154164923166130_8171355148735341933_n.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyMb1FMV-AJtPuWvLSTOeFwMfdaZWE3uPcpE7mBE6Vo36wqMfSo4DbuIdQQZlqaHjSuQoccLkq5YnJKQgFse4FizbYT6M4LA7v5QVPbL8uQnodMiwOQB8GoLuJFm9i0GyriLND5A8DxF0/s320/14089292_10154164923166130_8171355148735341933_n.jpg" width="240" height="320" /></a>.<br /><br />
I felt so happy, and excited for them. I couldn't stop smiling. I don't miss them, because I know they are there, having a wonderful childhood experience without the encumbrance of their parents. What an adventure they will have. What a blessing for them, and for me, and for all of us, that they can walk away from us and be fine, that they are more independent, that they are learning to leave. I love it. I know how that sounds, but it's the truth. Children are just small people whom you have the privilege to live with for a span of time. All that I have wanted, at 34, or 37, or now at 41, is for those people to do and experience things that will allow them to make memories and have longwinded stories of their own to tell. They may have had the opportunity to experience camp because I had cancer, but whatever they take from it won't rely on me being here one way or another. This is theirs to keep.
<br /><br />
This is 41. I like how it looks, sitting on the other side of the line I was never sure I'd cross.
<br /><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu1s7X9l8K-2QaLEqqRrINVxZ3NZXLyLJMsx7xMFw2hJdV0wlHwdjcV3AUIddMUtoNnIkVFJi_DENB7-qOGrn0-qXv-1mfAwKcrtV4tIoNJHI8kcP4PeiIxSB6RElFFwbxNNIx7AbXXAc/s1600/lucerne.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu1s7X9l8K-2QaLEqqRrINVxZ3NZXLyLJMsx7xMFw2hJdV0wlHwdjcV3AUIddMUtoNnIkVFJi_DENB7-qOGrn0-qXv-1mfAwKcrtV4tIoNJHI8kcP4PeiIxSB6RElFFwbxNNIx7AbXXAc/s320/lucerne.jpg" width="320" height="240" /></a>.<br /><br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7125354934408472049.post-85063175109596217672016-07-12T11:53:00.000-05:002016-07-12T11:53:19.783-05:00Day 2,129: A New StartI haven't written a blog post in over two months. <a href="http://katydidcancer.blogspot.com/2016/05/day-2060-six-years-out.html">That last one</a> was a bit of a mic drop for me; I think in many ways, I am done writing about cancer (if I ever really wrote about cancer here--this blog has always really been about something else). And yet, I do miss writing. I plan to use this platform for writing about a variety of things, both personal and political. But today, at least one more time, I have something cancer-related to say.<br />
<br />
Three years ago today, I learned my cancer was back. Facebook reminded me of what I said that day:<br />
<br />
<i>I love my husband. I do. The sitter dropped the kids off and he ran around catching lightning bugs with them while I finished writing. I thought I could handle it and I went downstairs to talk to them and they were playing with play-dough and so innocent and my son's voice is such a little boy voice. Gabe was in the kitchen. I went in there and shook my head and said I can't do it and started crying. He said OK I'll take care of them and why don't you put the dishes away or something. And I was thinking huh you random son of a bitch. But by the time I was done, I was more than finished with crying. And I took a deep breath and went upstairs and put them to bed, reading the super sentimental books about their names that we had made for them when they were born because that's what they asked me to read. And I sang to them and kissed them and I didn't cry. Here's to ten years of finally learning how to distract another person away from her grief. Put that one in your vows. You just might need it.</i><br />
<br />
It's hard to think back and try to place myself there, in that place, having to face my children, again, knowing what I knew. I remember telling them both about my cancer two days later, but I don't remember how it really WAS for me that day. The words above help place me there.<br />
<br />
And so I could write about three years, but I'm not going to do that. I'm going to write a bit about how a little girl moved into the house two doors down three months before we were bound to move away. My children have lived in two different houses in their lives, but both are in the same neighborhood. We are leaving the city proper after 12 years and moving back to the suburb where I grew up, where my mother still lives, where some things are the same but many things are unrecognizable. My children are at once excited and devastated to be moving.<br />
<br />
One day, shortly after we saw the moving van, an 8 year old girl rang our doorbell. She wanted to meet my kids, who were initially too shy to speak to her. After she left, I forced them to go find her. And just like that, they were gone. Somehow, the three kids bonded like they had always known each other. Like many kids in this neighborhood, she attends the local Catholic school. She and my son immediately began arguing about religion. It didn't seem to faze them, and just became a part of their routine. Her school let out weeks before theirs, and sometimes, I would see her waiting patiently outside, wondering when they would be home.<br />
<br />
They disappear for hours and play the way we used to play, back before playdates. They have other friends whom they are natural with like this, but this time, they formed this bond themselves, outside of their parents' influence or the commonality of school or sports. They set up lemonade stands, they play sports with made-up rules as three is an odd number at best, they jump on a trampoline, have water gun fights, go to the park by themselves, bring each other popsicles. When we went on vacation recently, we left a note and $20 with the neighbor girl, asking her to feed our fish and bring in our mail. When we returned, this was left in our living room:<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO10qnpCu207UvM_Gruh4gFpeTZ373lnRnYZf7Hvw-jWy7HOXsb0p6VsElqAwL9j34sTO6xInWyDEd53OV1ZPKQHKlx9DzIBizTxkTUxwLCpZCvzqtRrg0_aJ1e_sLv3ZM3rQFiDZ7dII/s1600/pokemon.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO10qnpCu207UvM_Gruh4gFpeTZ373lnRnYZf7Hvw-jWy7HOXsb0p6VsElqAwL9j34sTO6xInWyDEd53OV1ZPKQHKlx9DzIBizTxkTUxwLCpZCvzqtRrg0_aJ1e_sLv3ZM3rQFiDZ7dII/s320/pokemon.jpg" width="240" height="320" /></a><br />
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My heart wrenches for them as they are cruelly reminded of what we are asking them to give up, even as I know we are doing the best thing for our family. Children do not control their own lives, and that is a fact we all live with, whether we like it or not. To some extent, none of us has control, which is something I've been saying for years, but is the last thing anyone wants to hear. In this case, we, as parents, made a decision. It's a good one, but we are not the only ones impacted by it. We will all miss this big rambling house on the hill, the house we thought we might grow old in, the house with three ovens in the kitchen and a screened in porch a half block long and a second floor laundry room, the house with its own sledding hill, the house with its light-filled spaces and places to hide. We will miss our friends, but those of us who are grown can always control when we see them again, something our kids cannot do. We will miss a lot of things.<br />
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But this? This new friendship, the one that barely got started, is the one that makes me pause. All three of them have known this is the only time they'll have together, this way, to do what they've been doing in secret and in legion with each other. They have one summer together, not even that. It's a season they will always remember. I wonder if they think about it they way I do, if they wonder what will happen to her, how it might have been if they grew up together. I don't speak of this, of course. I just tell them how quickly they befriended her and how that will happen again in our new neighborhood.<br />
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I wonder though, and I probably shouldn't. I know that they know all the things that I know. I know that I can't make it easier. I could tell myself that they will forget, but I am past the point where I feel the need to lie to myself or anyone else. I know that there are lessons they will wish they didn't have to learn, and I know that just by living life, but also by specifically living their lives with me, they have always been learning one of the hardest and best lessons they will ever need to learn:<br />
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You never forget the people who teach you how to leave.<br />
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We're starting something new, and I'm sorry, but I'm not. Here's to the anticipation of our new entrance, and to the most graceful exit we can manage. We all know how to do this.
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7125354934408472049.post-76547442961046409012016-05-04T20:38:00.000-05:002016-05-04T23:05:10.782-05:00Day 2,060: Six Years Out
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwf6KUxeiwZkN6k9_7WGNU1gSkbv43BbmZG_7n6LeURfV9aZuqZtMfln-0Dm8CjUvNuHIcv43cU3k12aa0RvBL82FZ5asQC6klRqjnYv5BArcg_trcdCT-GrBJb6HfgUTzsP9j0vUbVM8/s1600/us+then.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwf6KUxeiwZkN6k9_7WGNU1gSkbv43BbmZG_7n6LeURfV9aZuqZtMfln-0Dm8CjUvNuHIcv43cU3k12aa0RvBL82FZ5asQC6klRqjnYv5BArcg_trcdCT-GrBJb6HfgUTzsP9j0vUbVM8/s320/us+then.jpg" /></a><br />
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Today, my cancer life is six. I'm not sure what that means. What kind of day is this, six years after the day I heard the news that might cut my life short, but also might not, but either way would mean that marking time was important in a way it never was before that day? I don't know. I am not a cancer success story. I found out I had cancer six years ago today. On that day, everything changed. It's true when they say that, but everything is always changing, I suppose. In the case of cancer, what changes is that you never get to be a person who hasn't had cancer. Not three years later, not five, not ever. It's not just things like being ineligible for life insurance for the rest of your life, not being able to donate blood or organs, or having a "pre-existing condition" for the remainder of your days. It's the fact that there's no such thing as "just" a headache anymore. It's the premature age that cancer brings, both outward and inward. It's the slap in the face that some of us have lived with for decades, that death is real and it is coming, but before it does, you have to suffer first.
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<br />So I found out I had cancer six years ago. But then I found out I had it again, three years later, and I entered into a hazy world of ambiguous cancer survivorship wherein I would never be a winner, never a warrior, never on the good end of statistics, and for the relief of that burden, I was glad, since we have to find a way to be glad about something on our worst days. I am also still here. I am able to be here without having heard words telling me that I have a terminal illness. I still have a face, and a voice, in the cancer lexicon. Many women do not, because they are dying and will die, and no one wants to hear it, no one wants to hear them.<br />
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I do, though. Those women are me, somewhere down the road or with less luck. There is nothing I have done or haven't done that made me deserve to have breast cancer once or twice or any number of times. At the same time, there is nothing I have done or haven't done that makes me deserve to not die from this disease when so many other people do. I wish I believed that I have a higher purpose to serve, but I don't. I simply believe in luck, and science, and, again...luck. I will never turn away from the truth of what this disease represents. <br />
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And so, I have lived with cancer and have been lucky not to die from it. Today, my cancer is six. My son is also six. He will be seven in less than a month. He's had a mother like me, hand waving on the other side, for all of the life he is able to remember. He had to stop nursing because of cancer. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTRk6TgSXQYNdrkZKll9G8P3GeB7v1Dsk3uExhoo3crYWCAsRL_piGBmiOdywNR5jcL1wYNnA3i6_umBgPkeJtI4JZWqv1gFuIccd1h-fzWqSLVQFTf5P6kDbt1zNZelDNsKI_UKSywxE/s1600/breastfeeding.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTRk6TgSXQYNdrkZKll9G8P3GeB7v1Dsk3uExhoo3crYWCAsRL_piGBmiOdywNR5jcL1wYNnA3i6_umBgPkeJtI4JZWqv1gFuIccd1h-fzWqSLVQFTf5P6kDbt1zNZelDNsKI_UKSywxE/s320/breastfeeding.jpg" /></a><br />
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He learned to walk without me remembering it. He thrived inside and outside of my body, from my body, when my body was trying to leave me. I am not religious. I do not believe in reincarnation. And yet, it is hard not to think that he has been here before, or at least that he has always known exactly what was coming, and decided to live his life accordingly. Even today, he surprised me. My daughter mentioned a speech another student had recited at school, about winning, and about how life is a competition. I said, huh, is that really true? And Augie said:<br />
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No, life isn't a competition. Life is whatever you want it to be. It might be a challenge, especially if you do things to make it harder on yourself, but you don't have to win.</i><br />
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Did I mention that he is six?<br />
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My daughter is ten. I've lived to see her grow into double digits. I've lived to see her turn from a preschooler to a child to a girl who looks like the woman she will be someday when I will maybe be around, but maybe not. The things she is interested in doing now she didn't even know were possibilities six years ago. Somehow, I have this child who knows how to teach herself how to do everything. But I guess that's always been the case. She's the one who potty trained herself at two and a half, and we never had to help her, even in the middle of the night. She taught herself to swing on a swing when she was two, she read her first words when she was younger than that, and now she's teaching herself how to knit and God knows what else.<br />
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It would be too easy to say that I am glad to have witnessed this growing. Of course, that is true. But it is more accurate to say that I am glad that it has happened, whether or not I witnessed it, because of or in spite of me or without me having anything to do with it at all. The thing about having children is that they are just small versions of adults, and the pleasure in parenting is in living with them and recognizing the people they have always been, all along, even as babies. It is also a pleasure to know they will be those people still, even when we are dead.
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And someday we will be dead, and that is what cancer is about--it is the elephant in the room, the death aspect of cancer, the way it shows us the fallibility of our bodies. Cancer reminds us that the corporeal is a snap of the fingers, a sharp breeze against the face, an explosion of brevity.<br />
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I am exactly the same person as I was six years ago, except that I have had cancer twice, and that has changed my life. If that sentence doesn't make sense to you, it is because you have been spared certain types of suffering. I think almost everyone knows what I mean. The thing about fear, about realizing that the absurdity of life applies to us, is that we remain us, and we never get to turn into anyone else.<br />
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I'm glad for that. I have less hair and one fewer breast and I don't remember things the way I used to, but I am still me. My life is the same in many ways. I have a similar job, and I have worked full time through everything, I have been the one to travel and balance and do what needs to be done. I am still married to the same man, who doesn't seem to miss the hair or the breast, but he misses something else. He rarely says such things, because he is sure to tell me how impressed he is with how I have remained myself, but he has said that my eyes have a different look in them now. He knows I am angry, though I have always been angry. He knows I can't cry, though the other night I tried. I cried for a full five minutes and I hate the feeling of crying, the weakness, the futility. He held me and told me that it was good for me to cry, that in 13 years together, he has never seen me cry like that. He told me to keep going, but I was done. He cries enough for both of us--that's how I see it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2K-l96CiwzWOLZw0fnlI-KrFLLhXg7TeSDjxquQ5dacpG4aQxI5XB3ZrnpIHheD_PoPZezgw_tec31ZkXBT2OEZ9O9ozJL5fC7Y3JK5_P8gdhCdmgJSg5LLiOrCbMOwMvKaQzKvKE8gk/s1600/fambeach.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2K-l96CiwzWOLZw0fnlI-KrFLLhXg7TeSDjxquQ5dacpG4aQxI5XB3ZrnpIHheD_PoPZezgw_tec31ZkXBT2OEZ9O9ozJL5fC7Y3JK5_P8gdhCdmgJSg5LLiOrCbMOwMvKaQzKvKE8gk/s320/fambeach.jpg" /></a><br />
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I could talk about what it means to have survived six years, even though I haven't had disease free years. I could talk about milestones. I don't believe in them, not for cancer, not really. What I believe is this:
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I have lived six years after receiving a devastating diagnosis of an aggressive cancer that didn't want to leave me alone. Some people in my situation don't live half as long, and others live to be old. I don't know how long I've got, but I know how long I've had. It isn't six years--it's forty. I've faced death five times, six depending on your definitions, but that's just one measure of things. I'm not sure it's an important one. Living isn't a given, and it isn't always easy.
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But it sure as hell is preferable to the alternative.<br />
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Six years later, I can look back and tell that long-haired woman what she couldn't possibly know then: Six years from now, you will still be here, so don't wait. Don't wait for it--every single day is the beginning or the end of some span of years that mark your life. Just live it. Six years from now, your son, who cannot talk or walk right now, will look at you and say:<br />
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Life is whatever you want it to be. You don't have to win.</i><br />
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And maybe, just maybe, you will have taught him that.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdOZEyA6oxQCO_nnNdWvh11-1ofJj9aJoktx8ctMnldcp5T2hT23OT-_8CIMHI6Vti4gSJ16yZYPh4lQlaqbrJzC6LMVs4v_6lLZdkg7g98g-RLjQGeELh_z0_2NRIch_WoKr9Uya8xRY/s1600/memarg.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdOZEyA6oxQCO_nnNdWvh11-1ofJj9aJoktx8ctMnldcp5T2hT23OT-_8CIMHI6Vti4gSJ16yZYPh4lQlaqbrJzC6LMVs4v_6lLZdkg7g98g-RLjQGeELh_z0_2NRIch_WoKr9Uya8xRY/s320/memarg.jpg" /></a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7125354934408472049.post-60753110370612701182016-04-21T13:57:00.001-05:002016-04-21T17:19:08.822-05:00Day 2,047: Nothing Compares 2 UThe world is filled with people who will not be allowed to live out the promise of their lives. The world is also filled with magical thinking, and fantastical dreams, and celebrity worship. It is somewhat disingenuous to mourn those we don't know personally. After all, we are all placed here in a world where everyone we love and hold dear will die--hopefully after we do, but life is rarely that generous. To waste tears on a person we've never met seems false, selfish, bizarre.<br />
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Except today, when Prince died, at the young age of 57. I learned this, and all I could think was: No. Just...no.<br />
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I could say a lot of things about Prince, and about how his music and his personality were a constant focus and influence on my life. I was born in 1975. I didn't listen to Prince's debut album until I was a teenager, and I bought a cassette version of it that was dusty even then. Purple Rain was released when I was in 4th grade, and I listened to it over and over. I saw the movie countless times. I asked my parents what the words to Darling Nikki meant and though they didn't tell me, they never stopped me from singing along. I thought even then that Purple Rain would be an excellent song for a funeral, that The Beautiful Ones was the perfect example of a man who couldn't deal with how amazing he was by the time he got to the end of the song. I remember my brother's little league team singing Prince songs on the bench. I went to a party when I was 17 with a guy I would fall in love with months later, whom I would be with for years and years, and the only song we listed to was Kiss, on repeat, while we all danced for hours. I went to college in Minnesota in the mid-90s and Prince permeated the culture of the entire music scene there. My roommate senior year got a job as a cocktail waitress at a club and she served drinks to Prince. I rarely envy anyone for anything, but that one came damn close. My husband and I never go to concerts because we can't accept the cost, the ego, the sensationalism. We went to a Prince concert over 10 years ago, and it was one of maybe four concerts we've gone to in our 13 years together. It cost $50 per person and everyone received a free CD--even 10 years ago, that was the equivalent of buying a Porsche at a Honda Fit price. We had to wait hours for Prince to be bothered to come onstage, but when he did, he brought it. That concert must have lasted four hours. He had a bed on the stage where he would sit to calm down. He played every instrument, he just exhausted himself, the crowd was the best crowd I've ever been a part of for any type of show. I force my kids to listen to Prince on every road trip. I get angry when people are unaware of all the hit songs Prince wrote that he just gave away to other artists because he didn't need them for himself. I will live the rest of my life believing that If I Was Your Girlfriend is the most romantic song a man has ever written for a woman.
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I could say all those things, and I guess I have-- and I could say more. But it's not the legacy and influence of Prince and his music that led me to turn to this blog while I am sitting inside on a beautiful, perfect Gulf Coast day on my vacation in Florida.<br />
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I really, really, wanted to watch Prince grow old.<br />
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I can appreciate that there are some aging rock stars out there who are still doing their thing. Mick Jagger is old, Keith Richards has died and come back to life or is still hanging out somewhere halfway in between, movie stars and athletes I admire get old and keep on trucking. That's a great thing to witness.<br />
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But just imagine if Prince had been able to grow old. Here's a man who was short and skinny and androgynous and made everyone assume a sexier person had never lived. Here was a teenager from a troubled background who just went out and decided there was no reason he shouldn't be a rock star, so that is what he did. Here's a man who was famous for 40 years, and never was embroiled in a sex scandal, never was in prison or accused of violence of any kind. Here's a guy who changed his name to a symbol and expected the rest of the world to recognize. And we did, and began referring to him as TAFKAP because we couldn't "say" his name anymore.
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Prince never gave a damn. He wore purple before any of the old ladies had ever thought to try. Sometimes, when Prince talked, if you stopped to think about what he was saying, you might get confused. But you didn't stop to think about it, because you took him at his word. Prince wore an orange-sherbet jumpsuit just months before he died and glared at all the fools around him like they were the ones not making sense.<br />
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I wanted that man to get old, to stop giving a damn about anything, to show us all how it's done. Contrary to the selfish idea that such a dynamic artist and person is best remembered in his youth and heyday, I'd have given anything to see Prince with grey hair, or no hair, or in a wheelchair or using a cane or relying on a walker. I'd have loved to see Prince bringing us along with him into that good night, in all his eccentricity and glamour and cantankerousness. Even if I am not a concert goer, I have this image in my mind of Prince as an old man, sitting on a stage by himself, wearing an outrageous outfit, bringing his own self to tears with his song. Can you see it?<br />
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Life always ends too soon if you've done it right. But this time, it really did end too soon. The world needed a Prince who had the opportunity to grow old. I'd have admired Prince from afar for another 30 years, or whatever he could've been bothered to give us. If Prince had disappeared into the comforts of his old age and we never heard from him again, I would've appreciated that too; I could picture him there in this imaginary self-imposed isolation, shaking his head at our frustration, always in on the joke.<br />
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And when we wondered where he had gone, we would mean to be angry with him, but we would not be able to bring ourselves to do it. We would just go out into the world, older and wiser and content but just a little bit sadder, and we would think to ourselves: "It's been so lonely without you here." <br />
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But that fantasy is not to be. Thank you for what you did for us, Prince Rogers Nelson. Nothing Compares 2 U.Unknownnoreply@blogger.com1