Thursday, March 24, 2016

Day 2,020: Rage Against the Dying of the Light

I never wanted to go gently into that good night. I see eye to eye with Dylan Thomas on that one. But at least, for as long as I could remember, I wanted to rage about something other than simple rage. I wanted to write about something, feel something, do something.

I haven't wanted to write this blog post. I haven't wanted to write any blog post. In fact, I haven't wanted to do much of anything. I don't know how long I've felt this way. Since early this year? My whole life? Now don't get me wrong. I do a lot of things. I get a lot of things done. I have done a lot of things in the midst of circumstances that astound even me, even now.

But I used to have more love for it. I used to have more heart.

I started to realize a vague sense of something at some point this winter. Every day when I woke up, as I said in my last post, I looked forward to going to sleep at night. That's been true for me for the entirety of my life--the fact of living was enough for me; I've always been easily satisfied, content. But this was different. I had lost interest in almost everything that happened in the course of my day--everything that had given me joy: working out; eating; cooking; working; sex; writing. And, of course, I was angry.

I said it before--I've always been angry. It's part of who I am. But this anger has been different. Instead of using it to defend myself and others, instead of it pushing me to accomplish things, to make things different, it was consuming me. It is consuming me. I just didn't see it, because I wasn't getting angry AT anyone, I wasn't doing anything crazy, I was still mothering and wifing and friending and working fairly well. But something has been off, and I knew it, but I didn't know what it was. And then, I read an article about depression in men, and how it often manifests itself as anger, and so doesn't look like depression.

That's me, I thought. Me! The woman whose negative emotions have always expressed as anger was learning what depression looked like for her. Other people, other women, might cry or get their feelings hurt or feel sad or emotional but I rarely feel those things. I stopped crying at some point in my life and I never really looked back. It's not good or bad, it's just how I am. I get angry. And then, my anger passes, and it passes quickly, and I'm me again.

Until now. Until cancer, I suppose, and cancer again, and everything that's happened. I didn't want to write this because no one wants to read this, not even me. Cancer is supposed to leave you feeling like a bad-ass, and though I've written here for years about the flaws in that theory, it's still the accepted practice. I always figured I could be depressed, but if I was depressed because of cancer, I was weak, or somehow doing this wrong.

It's possible that my depression isn't because of cancer. Who knows. I'm not sure it matters. When my son asked to go back to the therapist he saw when he was 4 and I was going through chemo, we were surprised. He didn't say he had any specific reason to want to talk to her, but we said fine, and have been sending him. And apparently he goes, and plays drums and talks about his unresolved anger and, of course, about death. Augie is more open about death than anyone I know. How many ways are there to die, mom? When bad people are in charge, people die, don't they? It feels the same to be six as it does to be 5 but I'm sure it feels different than being dead. In Star Wars, when all those planets blew up, man, I bet there are a lot of people who were glad they were already dead when that happened.

Me too, babe, me too. Who would want to live knowing that was coming? I get him.

So when Augie asked to go to therapy, I thought maybe I should give it a try. I've only done therapy a few times, including once after my car accident when I was 9 (it didn't help), and some couples therapy when we were first married. I didn't know what to expect. I know what my problem is, I just don't know what to do about it: I feel uninterested in everything, I'm angry all the time, too much shit has happened, I've started to not even want to talk to people I do like, I don't feel joy in writing anymore, I'm restless, I still have to do everything in the normal way anyway, oh, and I still have a 1 in 3 chance of dying young, and chemobrain took from me some of who I thought I was.

What could the therapist do for me?

Well, a lot, it turns out. And not because she offered any solutions. But she seems to see me as a person who needs a project, a big thing to work on and do, and she didn't suggest I change. She has helped me see things differently. When I explained that my negative emotions always express as anger, and that I rarely cry, she asked me how I feel when I do cry. That was interesting. I said that I rarely do it, but sometimes I cry, and I really want to just cry like other people do and let it all out, but the tears just stop after about 60 seconds. They actually dry up. Gabe has seen me cry, and he always asks afterwards "is that it? are you done?" I can't change that. I told her that it makes me feel unsatisfied, that the release I wanted wasn't there, that I envy people who can sob and weep. It's like a lot of things with me--I feel like I'm a fine person, I don't feel that I am inherently flawed or unworthy or anything, but I also feel like there's a bunch of things people do that I missed the training class on, like crying and flirting and caring how people view me and being calm and patient. I was ditching class the day they taught those things.

I have been frustrated at my own frustration. I have wanted to rant about the world and about life but I haven't written those rants because even I don't want to read that. I've felt...stuck. I've also felt unable to tell anyone else how I feel, because it isn't the message anyone wants to hear from a woman who has been lucky enough to survive all the different things I've survived. I've always been content with life because I was happy to still be living it. I used my anger to fight injustice and to be productive and to try to make the world a better place because I never believed in fate, or accidents, and I believe that injustice exists, and while we can't help some of it, we can help the rest. I don't work well with the idea that we need to have "dialogue" or cordial exchanges with people who threaten other people's well-being; I believe in the rage brought about by seeing a woman openly heil Hitler at a rally in my hometown for a man who might become President of this country. I believe she isn't welcome here, and she shouldn't be, and I believe in the anger that makes me believe that.

But still, here I am...stuck, somewhat joyless, ambivalent, quiet, waiting for the sun to go down.

I still do the things I need to do. For example, I went with the family to my daughter's volleyball playoffs. They lost. She was upset for a minute that she didn't get to play much, but she wasn't upset that they lost. She tried to make her friend feel better, because she was crying over the game. We hung out for a while afterwards to give the coaches the gifts and cards I had coordinated. Augie was tired and restless. He was angry about something, so he started to slam his body against the pads on the brick wall. He clenched his fists and his face turned red and he pounded his body against the wall like a cartoon version of himself. I looked at him and thought about his outburst of anger the night before, over his common core math homework that for a change he didn't understand (he loves common core math) and that I, in fact, did understand. I told him what he was supposed to do and he got furious. He started yelling and I walked away from him, laughing, telling him he was ridiculous and that he had to go to his room and never speak to me like that. He stomped his feet and I could picture the little clenched fists. He got quiet eventually in his room. Later, he came downstairs and laughed, sheepishly telling me I was right, and he had done the homework the way I suggested. He laughed at himself. He did the same thing at the gym after I glared at him for fighting the wall.

That's it.

I need to learn to do what my 6 year old son already knows how to do. We don't tell him not to be angry, but rather how to manage it, how to let it go, how to direct it, how to not let it get him in trouble. I need that. I need a wall to hurl myself into, I need to just unleash it and let it go, and I've forgotten how to do that, or maybe I never really knew, because my anger wasn't ever like it is now. I've always been like my daughter, silent in my thoughts and feelings when they got too hard, handling everything myself, carrying that weight. I don't want her to feel like I do, though I do want her to learn to use anger.

I'm a highly functioning person. A lot of shit has happened to me, even before cancer. I've kept it together and I don't intend to stop. But I'm depressed, and I'm angry, enraged even, and I can see it now, and I need to work on a solution.

I think I might need to take up boxing.

That's it, folks, that's all I've got. Some words and a notion to rage. Wish me luck!

Friday, March 4, 2016

2,000 Days of KatyDidCancer

After 2,000 days, you might think that it would make more sense to mark time in a different way. After all, even children think in terms of days or weeks, not hours or minutes. My daughter will be 10 years old in less than a week, and I will live to see that day, which is something I could not have foreseen 2,000 days ago when I began writing this blog. For weeks she has been wishing for Saturday, the day of her sleepover party, or Tuesday, her actual birthday. Time cannot move fast enough for her. The days must just drag, time must seem so slow. My son, who is 6, can't wait until spring break, because we will go to Florida and he will see the ocean for the first time. He thinks mid-April should be now, or a week from now, or sometime sooner than it is. I talk to my children about time the way an adult is supposed to: I tell my daughter that she should celebrate being double-digits, but that she should also celebrate being single-digits because she never will be again. I talk to them about high school, as if we all assume that everyone will be there to deal with that time when it comes. I talk to them about themselves in the future--as college students, adults, parents, even.

But I don't really think that way. I still think in a matter of days. I might think about Saturday on Monday. I might think about childcare for the following school year, but the days seem so far away, and I don't do anything about it. I think about dinner--what we will have this week. I think about work in a day to day sense: what is happening tomorrow, am I traveling this week, how many days until the weekend?

1,000 days ago, I wrote a post about 1,000 days. In it, I said this. This was true then and it is true now:

"Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me."

Maybe 1,000 days ago, I knew what was coming. Maybe not. It was four months before I knew that I would be starting all over with the cancer process. I would not be writing now, I don't believe, if my cancer hadn't returned. I would have run out of things to say, as I have anyway, in some sense. I am still years away from any kind of feeling of relief related to my aggressive cancer. In January, 2019, if all is well, and I am five years past treatment, my odds of surviving this go up significantly. That is three years from now. 1,000 days, more or less. My daughter will be a teenager in 2019. While it is true that the 10 years of her life have gone by quickly to some extent, as all parents say, they have also gone by very, very slowly. I have spent days wishing I could speed time up and get to the point where everyone is grown up already and doesn't need me anymore. I would invent a time machine not to stop time, but to hasten it. I never--NEVER--wish for one second that my children weren't growing up, weren't moving inexorably away from me. I don't wish that Gabe and I were 27 again and just falling in love. I don't wish to be a child or a teenager or a 35 year old, definitely not a 35 year old, as that year was just about the worst. I wish these days could go faster. Every morning when I wake up, I wish it were closer to the time when I could go to sleep.

But Katy! you say. That's not how a cancer survivor is supposed to feel! You are supposed to feel a Zen-like love of the now. You are supposed to wish for your children to stay this age forever so that you could savor it. You are supposed to never be depressed, even though that makes so little sense as to be an almost absurd sentiment. You are supposed to go out into the world MORE, not isolate yourself. And I know, I know. I have been, in the eyes of many, doing this WRONG.

It is odd to me that we have come to a much greater understanding of things such as substance abuse, depression, and anxiety disorders in general as a society, but that we seem to have little collective tolerance for people who experience these things due to a devastating diagnosis such as cancer, in themselves or a loved one. For many of us, including those who do not SEEM to be struggling, the idea that we would struggle emotionally or psychologically is often seen as a sign of weakness, of not realizing the gift that cancer has brought to us. It doesn't make sense, but it's true.

I think that the thing that has been hardest for me in the last few years has been chemobrain. It made me feel like someone else, like someone who used to be Katy Jacob and then was not anymore. A forced amputation didn't make me feel like that, being bald and skinny didn't make me feel like that, being sick, possibly dying--none of that made me feel like a different person. Losing my concept of my own sexuality back in 2010-2011 and then losing my concept of my own brain in 2013-2014, were both very very hard for me. I have become myself again, but it is a Flowers for Algernon effect. I have lived with this all my life--the knowledge that everything we have could be taken away and that we might watch it be taken away and know it is happening--but cancer makes this so true, so right there, in front of the face you don't recognize anymore.

I have not had major issues for the most part, though I do recognize the PTSD and general, though not devastating, depression I have had for at least a few years. I recognize that when I was in the best shape of my life, when I weighed 117 pounds and had 17% body fat, it was not because I was fit. Being fit, at least to that extreme, was a side effect of something else. I am still fit today. But I'm much more relaxed. Back then, I was about to lose my mind, and the only way I could stop that from happening was to exercise intensely for three or more hours a day, while working full time and raising a family. I could not sleep otherwise. I would get too close to thoughts I didn't want to have, so I would go to the gym, and not think about anything but the fact that my imperfect body could still do some things perfectly. I was so anxious, and restless, and I have been that way all my life, but that was extreme. I never drank, really not at all, until cancer. I still don't drink, really, but I find myself needing a nightcap in order to fall asleep sometimes, and my one drink a day can't be a glass of wine (I'm allergic) or beer (I hate it) so I go straight for whisky and yes I KNOW I AM DOING THIS WRONG. But I've never done things the way I was supposed to, and I'm too old now to start.

I feel like I have brushed off the changes and the difficulties of cancer in the same way I have brushed off many traumatic experiences in my life. I know that encountering the specter of death five times in 40 years should have changed me, should have made me feel somehow paralyzed or fearful or something, but it has just made me keep going and going just like the day of my possible death could be any day because really, it could. I have just folded all of these experiences into my routine the way you make a change from eating oatmeal in the morning to eating eggs instead. I'm still the woman who sits down to write about how I have lived to see another leap day but finds herself unable to do it so she writes a little riff on Julius Caesar. I still see life like that, an irony around every corner. I'm still in on the joke.

I have not become more reasonable, less stubborn, less angry, or more patient. Stubbornness, anger, and impatience are my biggest personality flaws, and they have just been exacerbated by cancer. My best personality traits, if I have any, are empathy, being able to relate to people, humor, and, I would argue...anger. I've used anger all my life to protect myself and make myself heard, to advocate for myself and for others--I made a career of it, actually. I am angry because I do not believe in the concept of injustice that is earned. I do not believe that injustices, personal or societal, are a given. I believe they are infuriating and that they are often, though not always, manmade. I have stopped writing much here because the state of the world makes me intensely angry, and everything I want to write is a rant, and I figure no one wants to read that, not even me. But I do not feel helpless in the face of this state of things. I feel angry, and anger makes me do things. My family laughed at me altogether when we were watching the Avengers, and Bruce Banner was asked to try to think of something to make him angry, and he just grinned and said "that's my secret. I'm always angry." Me too babe, me too. I'd probably be dead otherwise.

The concept of injustice includes cancer, to some extent...but not really. I do not interpret my own cancer as an injustice that has befallen me. There is no reason it would, or should, happen to someone else and not to me. I do not believe in the concept of a body that "deserves" to be healthy, I do not believe in a "deserved" long life. That is to say, I don't believe in those concepts for me any more than for anyone else. Cancer is an injustice for other reasons. It is not an injustice because it should not exist--I think cancer has always been with us and it always will be with us, though we will hopefully utilize the gift of science to make it less of a scourge. It is an injustice because people fear it so much that it turns people against each other. People do not enjoy the specter of suffering, or, even more so, the specter of death in a person who seems to be as relatively healthy as the next person.

Cancer is an injustice because of what it does to families. I believe that in general, but I'm not entirely sure I believe it about my own family. They all seem to be fine, albeit altered. Lenny will listen to me read a fortune cookie that says "everything is coming your way," and she will say "huh. maybe you'll get cancer again." Augie will believe on some level that I had cancer because I had him. He carries anger with him from those days still, I know he does, because the nearness of death makes some people angry, and believe me, I should know. Gabe no longer thinks of our marriage in terms of assumed longevity but rather in terms of making the most of what we have. My family, my mother, my brother, my friends--they are impacted, I know. But it has not made anyone not be who they are. Everyone is fine, I am fine, I have always believed that--that unless the absolute worst thing that a human being could experience is happening to you, and even if that thing happens, you will eventually be fine, and by you, I mean me. And the worst things have not happened. I mean, I've survived cancer, not genocide, or anything even remotely close. I've survived a lot of other things too, I've experienced a lot of trauma. I maintain though, that people think you shouldn't compare suffering, and people are wrong. There is always more suffering to be had, and it is probably being had by someone who isn't you.

And so, what I end with, 2,000 days after I began to ponder things that are sometimes about cancer, and sometimes not, is that there is something, or many things, that makes each of us who we are. There are things that can't be taken away. My daughter loves to sew and is amazing at it and she did not get that from anyone but herself and it is a gift she will have forever, even if she loses the ability to sew through some tragedy, she will remember being able to do it. Augie's atheleticism or musicality are wonderful but it's his ability to see things the way old people do that he will always have, that will always define him at least in part. Gabe is still sentimental and willing to cry over anything and he always will be. And me?

Well, I am still here, still doing this, still talking at length out into the ether, still counting down the days. I will always have that, whether 2,000 or 20. I'll always look forward not only to the sun coming up every day, but to the sun going down, and everyone being in their own space, apart from me, but out there, in peace.