What We Could

 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. 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. 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: Who dropped her off there? Do you think there are other women where she came from?

Trafficking. Gang rape. Something horrific had happened to her.

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.

The women from the salon came back inside. They were all crying. 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 seizure, but was still conscious. Where did she come from. Who did that to her.

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 no that’s ok we’ve got it 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 it’s not like we’ve got a PLAN. Do you have a plan?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.

They fucking took videos and pictures. I’m sure they posted them somewhere with their jokes. They let 3 women do everything.

What unbearable weakness.

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.

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.

Because they laugh, take videos, keep their heads down, mock you, threaten you, do nothing.

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.

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.

We did what we could.

15th Mother's Day

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.

 

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.

 

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.

 

So much has happened, but the main thing, the thing that was most often left unsaid, hasn't happened, not yet.

 

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?"

 

It wasn't a fair question. But it was the right one.

 

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.

 

I worry about what it has done to them.

 

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?

 

"Yeah my mom had breast cancer, twice. Once I was like 5. The other time, I think that happened before I was even born."

 

And then they went off to warm up.

 

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.

 

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.

 

Who  could have guessed? Someday, it would just be an offhand comment in the dugout in a conversation about playing mafia with college boys.

 

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.

Bourne

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 

 

 genocide and pop culture 

 

how has the pandemic changed things for your family

 

why does the question why fire people up 

 

And I'm going to do this by talking about something obvious: The movie Bourne Identity.

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.

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.

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.

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.

Why?

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?

Because he didn't know me well and he might've asked me why, and I knew my ex would not.

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.

I love to watch him leave.

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.

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."

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."

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.

I'm morbid, you're thinking. I'm depressing. I'm a glutton for punishment.

No, no, no. It's the trauma-informed life talking. It's the book version of Bourne.

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?

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.

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.

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.

 

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.

You don't just walk. You rip the map off the wall first.

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.

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.

He just queued up Bourne Identity to lull you to sleep.

Pandemic

I 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.

So it goes.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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:

Would it help?

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.

We cannot control that outcome.

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.

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.

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 commercial 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?

Who knows?

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?

I didn't spend a lifetime curating a personal library of human disaster for nothing. Someone has to tell the story.

Day 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.

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.

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. I’ll tell a true story. I’ll tell a story that conveys something more than nothing.

Here goes.

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?

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.

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.

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.

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.

This is not how you expected to spend your Tuesday.

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.

You tell a few people. They say the same things. “I can’t imagine.” “How do you do this? “How do you feel?”

You want to be honest, but it’s hard.

You don’t feel anything. It’s been years, years before cancer even, since you felt the things that other people feel.

You are anxious, but how different is it than the hypervigilance, the constant desire to escape, the tweaking you have felt for decades?

You aren’t in denial. You are actually in the opposite of that—deep within hyper awareness.

And you have an important decision to make.

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?

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.

I didn’t feel rage or sadness or grief. I don’t feel those things, not so well, not anymore.

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.

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.

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:

“Life isn’t about what you deserve.”

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.”

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.

She can imagine, and she doesn’t want to, and you don’t blame her.

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.

Your bucket list is not to die, not yet.

That’s a true story.

Bucket List
By Katy Jacob

a turtle caught near the lake house
that was someone else’s lake house all the time
except for a week each August in the early eighties
and kept in a bucket until Chicago
didn’t even survive the night,
drowned in its own vomit,
the Jimi Hendrix of turtles
before you even named it,
is the only thing you ever think of
when someone says “bucket list”
and they mean what would you do
if you could do everything differently
and of all the possibilities
you think only of the turtle climbing out
of the bucket in defiance
and living for a few days in the grass
or at least dying with a lot more dignity
you think if you’re being honest
the only thing on the list
is a cold-blooded escape
from a place that you
were never supposed to get out of alive
even if it housed you
with the best of all intentions

Day 2,858: A True Story

Today as I sit here writing for the first time in six months, I wonder if I remember how to do this.

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.

I have been meaning to write for so long, but I have had no real desire to do so. Today seems important, though.

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.

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.

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.

Or is there?

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:

I told a true story. I told a story that conveyed nothing.

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.

I told a true story. And in some ways, I told you nothing.

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.

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 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.

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.

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.

What illusions? She began:

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.

And in my mind I continued: 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.

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.

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.

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: 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.

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.

Obviously, if I stop doing that, this will be different.

And I am going to try.

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?

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.

I'm going to try to start writing a true story--about me. If nothing else, it will be a new escape.

Day 2,678: Standing Up

I 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.

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.

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.

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.

Welcome to America.

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?

It is the way we reward terrible behavior—not the way we forgive it, or look past it, but the way we reward it.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I was 8.

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.

Then, it was my turn. The pain was so, so unbearable. It took my breath away.

And I did not utter a sound. I did not even cry, except perhaps silently.

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.”

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.

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.

She has no right.

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.