Wednesday, November 9, 2016

Day 2,249: Make America Great Again

Welcome to Trump’s America. There are so many things to say, but I am only going to say one of them.

Now is the time to rage.

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.

Now is the time to rage.

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, do you know what happens in a revolution? A lot of people die. 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.

Bad things don’t happen, we tell ourselves, everything will be fine. 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.”

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.

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.

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.

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.

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.

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.

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.

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.

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.”

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.

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.

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.

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.

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.

Boy, did it.

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?

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.

How dare you, I said.

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:

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.

This anger is my best thing. It is who I am. How dare you try to take that from me.


And lest you think I am lost, I forgave him.

Welcome back to our America. It was never as great as we thought. Doesn’t that make you mad?

It should.

Let’s get to work.

Thursday, November 3, 2016

Day 2,243: Fly the W

On 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.

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.

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.

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.

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.

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."

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.

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.

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.

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 a triple's just a double and a guy who ran like hell.

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.

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.

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.

And because we are who we are, even our hopeful refrain on its best day sounds like an existential plea: Fly the W. It's the sports version of Fats Waller telling us, let's waltz the rumba, because it's impossible, really, but...why not?

Why not?

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.

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.

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?

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.

In 2016, the Chicago Cubs won the World Series, and we were alive to see it happen.

Holy cow.

Tuesday, October 11, 2016

Day 2,220: Don't Die in Fear or Ignorance

Apparently, 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.

But I digress.

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:

"Don't Die in Fear or Ignorance."

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?

I'm sure that's what she was getting at, this woman who didn't want me to die in fear.

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.

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.

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.

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.

We were in the place where cancer was normal.

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.

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:

"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?"

Pause. Such a long pause.

"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."

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:

"Yeah mom, you could still die. YOU COULD STILL DIE."

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.

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.

But I do know one thing. We can all find a way to remain ourselves. And so I answered Augie:

"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."

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.

Monday, August 22, 2016

Day 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.

But now I am 41. And it seems...strange.

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.

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.

So, I hope I make it. I hope we all do..

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.



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.

Trial by fire, as they say.

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.

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.

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.

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.

.

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.

This is 41. I like how it looks, sitting on the other side of the line I was never sure I'd cross.

.

Tuesday, July 12, 2016

Day 2,129: A New Start

I haven't written a blog post in over two months. That last one 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.

Three years ago today, I learned my cancer was back. Facebook reminded me of what I said that day:

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.

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.

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.

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.

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:



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.

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.

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:

You never forget the people who teach you how to leave.

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.

Wednesday, May 4, 2016

Day 2,060: Six Years Out





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.

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.

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.

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.



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:

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.

Did I mention that he is six?

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.

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.

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.

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.

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.



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:

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.

But it sure as hell is preferable to the alternative.

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:

Life is whatever you want it to be. You don't have to win.

And maybe, just maybe, you will have taught him that.

Thursday, April 21, 2016

Day 2,047: Nothing Compares 2 U

The 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.

Except today, when Prince died, at the young age of 57. I learned this, and all I could think was: No. Just...no.

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.

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.

I really, really, wanted to watch Prince grow old.

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.

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.

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.

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?

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.

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."

But that fantasy is not to be. Thank you for what you did for us, Prince Rogers Nelson. Nothing Compares 2 U.