Monday, June 30, 2014

Day 1,477: Summer

Almost a year ago today, I sat in the north woods of Wisconsin, and I wrote this:

So, here I am, this strangely healthy vital person, and my body is a walking testament to science, the good and the bad. My body is a continued experiment, as it always has been in some ways, since I was a little kid.

Sixteen days later, I would be diagnosed with breast cancer for a second time. I left Chicago for the woods knowing that I had a lump in my breast. It was confirmed by by gynecologist; I had gone to see him for my annual checkup and asked him to feel that lump for me. I know now that he probably knew I had cancer then. He made me promise that I would see my breast surgeon as soon as possible. I gave my word. And then he told me to go on vacation, and I did. It was to be the last vacation I would go on for some time. Our summer was upended by cancer yet again; I have two lost summers because of this disease.

It's strange to acknowledge that, every time we are anywhere experiencing anything, we don't know what might happen next. Or, maybe we do know, but we are still able to pretend that it isn't going to happen and enjoy where we are right now, today.

I feel like that pretty much all the time.

I know that I have been given this summer, in the same way that I was given the summer of 2012. It is a summer without surgery, cancer treatment, or recovery from cancer treatment. It is only the second of the last five summers like that that I've had. I don't have to tell my kids that I can't get in the water with them because I don't have the surgeon's permission yet. I don't have to ask my chemo nurse to alter the schedule so that I don't have to be infused on my birthday. I have the energy to play baseball in my front yard and take the kids swimming and to get ice cream while Gabe works late.

I have hair. I'm not in menopause, or puberty. I'm missing a part of my body that was there a year ago. I get tired because I'm busy and I'm getting older, thank God. I'm not the same--I've gained some weight I can't lose, I feel my age more, I've lost any feeling of victory that I might have felt related to cancer, though I don't think I ever felt that way, not really. I've stopped wearing makeup, what little of it I wore. I seem to have come out of my PTSD or depression or whatever it was I was feeling just a short time ago. I have become lazy in some ways--I contact people less, I don't go out of my way to be social. I really don't care that people think summer shandy isn't real beer. It's my summer, and the days are already getting shorter.

Just a few days after I wrote the words about my body and science, I wrote this:

I've fallen in love several times, met men in interesting places, including on a cross country train, married someone who seems to adore me. I have interesting, charismatic children. I have studied important things and built a non-traditional career for myself that has suited me just fine. I have stuck my stake in the ground of my favorite city and I have never regretted it. I have seen the sun set and rise in some truly beautiful places in the world. I have lost the working function of almost every part of my body at some point, and had the pleasure of watching it all come back to life. I remember learning how to walk. Shit, I finally learned to ride a bike...when I was 35. I have lived almost every day feeling this body and this life as if it was some kind of miracle, even when it seemed almost impossibly small.

It's a good life. I'm happy with it.

I don't feel differently now than I did then, 10 days before my second cancer diagnosis. It is a good life. I know that. I'd like to have more of it. As I told a childhood friend who asked about people's 40th birthday plans:

"Well, I have to have a huge party. I've been trying for 40 since 34."

So this summer, before I turn 39, I will be working hard, and traveling a lot, and I will be stressed and overextended. I will never be one of those parents who is able to give her children a carefree and leisurely summer. They will go to summer school. Our weeks will be hectic. And yet, we will be outside at every opportunity. I will let them stay up late, or eat cereal for dinner. We will be freckley and sweaty and tired and happy. We will enjoy this summer as if there is nothing else possible looming in the future, because as of right now, we can.

I stayed up last night listening to the loons call, right off of our dock, so close it was as if they were in the house with us. I asked Gabe if they were nocturnal. He said he didn't know; maybe they were, maybe they just acted like it sometimes. I thought that was a good answer. It was a beautiful night and the wind had been so strong that some of the bugs had blown away. Maybe they knew it was impossible to tell when they would get another night like that, and they didn't want to miss it.

These days, more than ever, summer is like that.

Sunday, June 22, 2014

Day 1,469: Beauty, Inexactly

A few months ago, I sent out a few requests on social media for people to tell me about an experience they had had with art that was meaningful for them. It didn't matter to me what kind of art it was--I was more interested in WHY the art had affected the person. I received some fascinating responses, along these lines:

it brought me closer to God
it helped me answer the question, "why is this happening?"
it reminded me what a beautiful instrument the human body is
it inspired me to feel the joy and unencumbered emotion I had felt as a child
it uplifted my soul and spirit
it brought me out of my depression and anxiety better than therapy
it made me want to celebrate life with hundreds of strangers
it moved me to tears--the artistry, the passion
it allowed me to give something healing to someone else through my art
it reminded me how it felt to be alive
it changed my view of language
it made me see that beauty can come from pain
it made me want to create art of my own

I have been struggling with my own relationship with art recently, which is why I asked the question. I have always devoured art--words and music especially--for as long as I can remember. I have more poetry books than most people could imagine existing. And yet, recently, I have not wanted to have anything to do with the kind of art I have enjoyed all my life--the deep stuff, the stuff that gave me the moniker of "nerd" forever and no matter how else I might have appeared to the outside world. Instead, today, I want to listen to pop music, read mindless books, watch violent action movies. In the back of my mind, this has bothered me, though I have told myself it was because I was so busy, so consumed with everything that happens every day in this life, with this family, this job, this disease. But it has bothered me because I know that is not the real reason.

I have avoided art in an attempt to avoid feeling like that--like those words above--to avoid feeling things as strongly as I always have, to avoid the message beneath all of those sentiments that were passed along to me: to avoid acknowledging the slippery slope between life and death, joy and grief, beauty and pain.

It is so easy to get lost in everything else that surrounds us--all of this IRONY. It permeates everything. Sometimes it is hard to know if people do things because they like them or because they are engaging in some postmodern riff on other people and what they used to like. I mean, do hipsters actually enjoy PBR? Do they realize that their uncles drank it not out of irony, but maybe because they were broke? Sometimes I feel like everything involving self-expression is just an excuse for irony, and I wonder if people who are growing up today realize that their very real memories will turn into self-aware references years later.

And then--then, I remember art.

And I realize this. We live in a paradox. Our society is filled with so much abundance, and so much poverty. So much privilege, and so much disenfranchisement. Every attempt at eradicating something evil from our midst is met with some form of disdain: we pay wealthy white men to sneer at universities' attempts to get a handle on sexual assault issues on campus because of the "privilege of victimhood" or whatever the hell he said. And while George Will has been penning this reactionary bluster for decades, there is something to the notion that we seem incapable of even taking our pain seriously.

We are so intent on being positive, and happy, we are so obsessed with the rose colored glasses, that I'm not sure it's easy to see beauty anymore. If you feel great joy, or passion, if you are earnest, you run the risk of being teased, not taken seriously, you have a lot of eyes rolling at you, and you eventually might learn to keep it to yourself. You want to know: where is the LOVE? in everyday life, where is the intensity, the sincerity?

It is in art. And so often, the focus of art is pain.

Yes, there is much in art that focuses on beauty, and love, and joy. But it is rare that those emotions are expressed in art without some kind of grounding in suffering. Most of the time, we act as if suffering does not exist. We live in a society that seems hellbent on believing that suffering is a character flaw, it is something you choose or something you make up, that it is not REAL, and that if it is, it is a fate worse that death. It is this belief that makes people terrified of illness and disease. My own grandmother was so afraid of her breast cancer that she watched it grow for a year, waiting for it to kill her. She was not expecting her doctor to tell her that cancer doesn't work like that, because:

you have to suffer first.

Art allows us to suffer out loud, without anyone telling us to get over it, without anyone asking us to prove that it's true, without anyone telling us to just meditate, without anyone waiting for a happy ending.

Art gives us worldliness and Godliness. It makes us feel the core of ourselves.

It cannot be made a mockery of, not really, not in the end.

I say all of this as a sort of explanation. This has been my art. I say things here that do not even sound like the person I sound like on the street. People rarely have casual conversations with me and then say "wow. what you just said helped me through my darkest time." "when I read your words it is like reading my own mind, if I knew how to be honest with myself." But people have said those exact things to me about this.

And yet, I have been crowding other art out of my life, because the things I feel when I am honest here, and in the poetry I write that I rarely share with anyone, are painful even when they are good. Every moment of beauty can be a sharp reminder of what I might miss. I start to read wonderful and heartbreaking novels and then I put them away.

And now, now I want my art back.

It is not because I am out of the woods. It is not because I am done, or because I am healed, or "past" cancer, or anything else. It is just because I miss it. I feel alive every time I put one foot in front of the other, I feel the beauty and pain in the insignificant countless times every day, because I have faced death five times, but that is not good enough anymore.

I need to be reminded that other people feel it too.

I remember being young, and keeping journals. I remember how I rarely wrote when I was happy. I remember that my best poems are the saddest ones. And I know that we have been given a range of human emotions for a reason, and that we should not ignore those that are hard to feel in favor of those that are easy to feel. I remember when I wasn't afraid of grief.

When I was a teenager, I bought a poetry anthology called "To Woo and to Wed." It is a terrible name for a wonderful book full of poems about love and marriage. As I began to contemplate this "wedding" I am having in the fall to celebrate our 10 year anniversary, I dusted this book off and paged through it to see if I could find something appropriate for the occasion. I may or may not have succeeded in that goal, but more importantly, I found this:

All the pages I had circled back in 1993, all of the passages I had underlined. I found that back then, at the height of my youth, I thought the best marriage poems were the ones about divorce and widowhood. There wasn't a single page marked up in the chapter entitled "So Much Happiness." I was 18 years old. I was in love, though I didn't know it yet. I had been in love before. I had my life ahead of me, all of it, stretched forward like a promise. and these are the types of things I thought were beautiful then:

But let there be spaces in your togetherness
And let the winds of the heavens dance between you.
(Khalil Gibran)

so she wanted to fix a violet moment

of light to keep, a place she'd come
back to alone, wherever she stayed.
(Gail Mazur)

Footsteps become people under streetlamps.
(Douglas Dunn)

...I want things
to happen to me the proper size.
(Linda Gregg)

And yet who believes
that what he's doing now IS his adventure
(John Galassi)

There are many things in the world and you
are one of them.
(Robert Penn Warren)

You are not beautiful, exactly.
You are beautiful, inexactly.
(Marvin Bell)

We have weathered the wet of twenty years.
(Robert Lowell)

Romance is a world, tiny and curved, reflected in a spoon.
(Amy Gerstler)

I'd make you oak and linden as
they were and call the shade a silence in your name.
(Michael Blumenthal)

Orchards, we linger here because
Women we love stand propped in your green prisons.
(James Merrill)

Marriage is not
a house or even a tent

it is before that, and colder
(Margaret Atwood)

the prairie is a livable place, a place
for withstanding all kinds of weather,
and here's to the little hills,
the ones that take you by surprise
and the ones you'll need to invent.
(Stephen Dunn)

Twenty one years later, I find myself dog-earing pages from a chapter entitled "From Grief to Grief," as if somehow that could be an appropriate message as I renew the vows of love I shared with my husband ten years ago. I think of the poem we passed out as a wedding favor then, the poem about eating peaches: "From Blossoms." But what does that have to do with MARRIAGE, people may have asked?

There are days we live
as if death were nowhere
in the background, from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.
(Li-Young Lee)

That's what I want. I'm ready for that again, now.

And I found a poem that fits. I'm sure I will write one of my own, but in the meantime, I have found one. It is all of fifty three words. I'll read it to my husband, and I know that people will cry. Without irony, or shame. It's a poem that says, even in the midst of this (all of this, even this cancer, that was only a month old at the time of this photograph), this is what love's face looks like.

Tuesday, June 10, 2014

Day 1,457: Pride

Parents often talk about being proud of their children. It's a natural way to feel; we are proud of their accomplishments, happy for them as they learn new things, wistful about how quickly they change. I am no different than other parents in feeling this pride. And yet, I doubt I will ever be prouder of my kids than I am at this point in their lives.

Today was awards day at my daughter's school. She received a variety of awards, and I was proud of her. Her last day of second grade is on Friday. My son will "graduate" from the Montessori school he has attended since age two on the same day. I will miss both of these events, as I will be traveling for work. However, I will be here for my son's graduation ceremony on Saturday. That day is also my husband's birthday. There will be talk about what they have learned, how they have grown, and what they will hopefully do in the future. These things are important.

But this is what I want my kids to know:

You are strong and impressive children. For the first half of the school year, your mother was going through chemotherapy for the second time. She had just recovered from cancer surgery when the school year started. She started a new job based in another state right after her diagnosis, and she was busy and stressed and could not take time off of work to spend special days with you. She was sick and forgetful and sometimes even depressed, she did most things the same but not everything. But more than anything, the thing is, she wasn't supposed to do this again. She was supposed to do it once, and be done. You were only supposed to have a mother like this once, back when you were one and four years old.

In some sense, neither of you knows any different. In another sense, you do. This time, you knew enough to know what might happen. You knew that when cancer comes back, that's bad. You knew she could die. You knew it could happen again, and be worse. You thought about death and you shrugged off the possibility of baldness and you asked to kiss a breast that was no longer there and you brought her stuffed animals when she took to bed after chemo. And all the while, you did these things:

Lenny, in the midst of all of this, you didn't miss a single day of school. You got straight As all year (except that one time when you forgot to fill in your journal for gym). You ran the mile faster than any other kid in your class, and faster than a hell of a lot of adults I know. You made new friends. You stuck with chess even though most of the other girls dropped out and you didn't really like it. You went with two boys from your class to the next level of math. You continued with gymnastics and swimming and you can still do as many pull-ups as your dad. You only had one meltdown at school that I know of, and you dealt with everything so stoically that the teacher didn't even realize why you were having it (it was a chemo day, remember?). You didn't talk to a therapist or the school counselor even though we offered, and that was your choice, and while we knew it would have helped you we also knew that sometimes, kids need to do what they need to do. We didn't want to proscribe problems for you. And yet, to whom could you talk about all of this? What friends, what adults, outside of your parents, could or would talk to you about the things you feared the most?

Augie, in the midst of all of this, you overcame some of the issues you had had before cancer reared its ugly head again. You caused a lot of trouble at school, and then, just like that, you stopped. You started to listen. You concentrated on your work, even when you had night terrors the night before and must have been completely exhausted, physically and emotionally. You learned how to read, and BOY did you learn how to read. You can read many of your sister's books today. You played your first team sport and we had the joy of watching you dance and wiggle with happiness the entire time you played baseball. You did go to a therapist, and talked about other things. You got unbelievably angry, at yourself, at your parents, at cancer, at the world, and you learned to let it go. You fought demons with a fierceness I have never seen before in a real live human being, and as soon as cancer was "gone," those demons were gone too. You don't kick and claw your way through your sleep anymore. You began to draw, to really sit and concentrate and utilize beautiful colors and let the rest of us into that fascinating place that is your mind's view of the world. And you carried this weight around, like it was almost nothing--this weight you only recently voiced, that you believed I had cancer because I had you.

I am not sure I can take credit for anything, for either of you, for any of this. If I can, it is because I didn't know what else to do but be myself. I could have been more nurturing with you, I could have hidden the reality from you, but I didn't know how to do those things, so I didn't. I am sorry and yet so proud of how well you handled childhood and how you stuck together in the midst of all of these adult problems.

You have taught me things. One of the things you have taught me is that you do understand what the important lessons are. Way back at the beginning of this, almost a year ago, Lenny, you told me that I had taught you something, and it was something I guess I had taught you all along, all your lives. You looked me right in the eye and shrugged your shoulders as you said it: "What? Mom, you taught me that."

That--that thing you told your brother, that made him nod his head like it was the most natural thing in the world:

"She will always be our mom. Even when she's dead."

And if I believed in a different type of existence, I'll tell you what. I'd be damn proud of you both, even then. Even when.