Friday, November 28, 2014

Day 1,539: Giving Thanks

Thank goodness for all of the things you are not!
Thank goodness you're not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.

--Dr. Seuss, from "Did I Ever Tell You How Lucky You Are?"

That is the Dr. Seuss book I grew up with more than any other--that and the Sleep Book. No Red Fish Blue Fish. No Green Eggs and Ham. No Cat in the Hat. Not that one that everyone reads at graduations. One Dr. Seuss book about not feeling sorry for yourself, one about learning to go to sleep, and one called Hooper Humperdink, which was about the kid no one wanted to invite to the party. My parents chose wisely with books--I can see that now.

For the past five years, I have dreaded the notion of writing Thanksgiving posts. I've dreaded it because of the societal expectation that I am now gracious and thankful because I have had cancer (twice) and I'm not dead. I've dreaded feeling like I have to explain that I was always a thankful person who had a pretty damn good perspective of the world; I've dreaded feeling the need to explain that I've understood mortality in a very real way for 30 years; I've dreaded having to say that I didn't need the lesson cancer was supposedly teaching me.

But this year, I feel differently. I feel differently not because I am thankful to not be in the middle of chemo during this holiday season--I mean, of course I'm happy about that. Last year at this time, I looked and felt like a ghost--a true ghost, a cold, pale, tired wisp of a person. It's wonderful not to feel like that. But this year I feel differently because I think that the problem with writing Thanksgiving missives is not that some of us don't know what to say, but that we have framed the whole thing wrong. After all, is it productive to count your many blessings? Is it useful to recognize how lucky you are if you don't do anything with that knowledge?

I don't think it is so useful to realize you are lucky, if you do not do some real and meaningful work to think not only about others who aren't so lucky, but about the very real fact that luck might not always work in your favor. This is the time of year to give up on our false idea of meritocracy and realize not only that most people do not deserve their misfortune, but most, if not all, people do not deserve their fortune either. This is the time of year to realize that when you stop to reflect, maybe you should just stop.

Maybe it isn't about you.

That is all my long way of saying that I have decided to write my annual Thanksgiving post about suffering.

Suffering is real. In the United States, we like to pretend that it is not. We pretend that suffering is something that you can choose not to experience, that you can will away, that you can hide under positive thoughts or a fist pump and a smile.

I really do think that we pretend this with the worst of intentions.

We do this because when others suffer, we stop seeing them, and we start seeing nothing but ourselves.

How often do you hear people say, "I hate going to funerals." "Hospitals are depressing." Sometimes people are less charitable in explaining what makes them queasy. Those who are old, or sick, or dying are off limits. Folks even go so far as to say that they will hate THEMSELVES if they are less than the young and vigorous people they are today. In our recent collective discussion about the right to die, I felt so often that the conversation drifted off point. It no longer became a discussion about whether people should have control over end of life care. It turned into this discussion of "but she had SEIZURES. can you imagine?" Or, "I remember how my mom suffered and I wouldn't want to do that to anyone," or "it's so hard to watch someone you love deteriorate."

Yes, yes it is. And you owe them that, at least. You owe those you love the duty of witnessing their suffering and not turning away. You owe them that--the acknowledgment that the suffering belongs to them, and the promise that you will not deny their reality because it is hard. Those who are able should be able to decide how they want to go in a terminal illness situation. But let's not assume that they would all choose the same path. Let's not assume that they OWE us ANYTHING. You are not owed the opportunity to NOT witness suffering. You are not owed painless memories. There are people--in my own family--who have scores of disastrous seizures every single day of their lives and have for decades. There are people who cannot do many of the things that most of us think of as essential who are living full and meaningful lives--even if those lives involve suffering.

When did we learn to turn away from suffering? Have we forgotten about Mother Theresa, holding the lepers' hands? I just don't understand.

This happens all too often within the cancer community--especially with breast cancer, when everyone on the outside seems to have decided that suffering is optional or just plain fictional. The societal pressure to act as if breast cancer is simply a rite of passage or a fashion show leads to some truly sad things for those who have or have had the disease. We get separated from one another. Not always, not everyone, but sometimes. Early stage women fear women with mets. Women who have not had recurrences do not want to hear from those who have. Women who are long-term survivors long to take credit for it, leaving those who died early on to suffer after death in the wake of a "lost battle." Women yearn for stories of hope and wish that those stories transferred onto them.

But I just want to say this.

If a woman is suffering through metastatic breast cancer, that is not about me. If a woman dies from breast cancer, that is not about me. If a woman has an early, estrogen-positive breast cancer and all she has to do is have surgery and go home, that is not about me. The existence of targeted treatments for non-TNBC cancers is not about me. Hormone markers are not about me. Nothing except my experience is about me. So, I can be happy for those who have survived a long time or who have access to treatments that don't apply to me or who avoided other treatments I had to take. I can sympathize and empathize with women who will have cancer the rest of their too-short lives. I can see that their suffering and sadness and fear is real and individual and tragic and I can feel a real human case of oh shit, I'm so sorry, for them. I do not fear them. I do not turn away. I do not refuse to read their stories. I do not look to others for reassurance that I will be ok--they don't know that, and neither do I. I can look to others for reassurance that the things I am experiencing are NORMAL, because sometimes it is hard to tell in the land of the truly abnormal. But I know that the only thing separating me from a woman who is dying of breast cancer is luck, and maybe, just maybe--time.

Those women who sit on the other side of the cancer-luck stick are me. Not now, but someday. Maybe not because of cancer, but because of something. We will all suffer and die, and many of us will know we are dying and be unable to stop it.

I've experienced some of the fallout of obvious suffering myself. Sometimes, it's painfully obvious. Your friends disappear during chemo and show up again when you're "done." Or, it can be very subtle. People only want to hear about the ass-kicking part of things, not about the things that are hard. Women ask me about my diet, my genetic history, my stress level and all kinds of other things that are nowhere near their business out of some misplaced desire to understand how I am in this place--what did I do to deserve it?--so that they can feel assured that they will never, in fact, be me. Sometimes, the fear of suffering comes out in the seemingly positive: "You can beat this!" Oh hell, I'd love to, but no, I have no idea if I can.

Any time someone brings forth some horrible anecdote about something that has happened to them due to cancer I say the same thing, or something akin to it:

I am so sorry. Cancer is bullshit.

And those little victories?

So happy for you. Enjoy yourself.

We live in our bodies alone and we die alone but there is no reason we need to experience the in between alone, or in hiding. And some of that in between is almost indescribably hard. And that, too, is real.

So on Thanksgiving, maybe that is what we should give Thanks for--the opportunity to experience life in fellowship with others. We should give thanks not just for being lucky or blessed but for knowing what luck and blessings are and how easily they can be stripped away. We should reflect on the temporary nature of our luck, and the permanent nature of our temporary-ness.

Every year on Thanksgiving, Gabe and I split the wishbone from the turkey after the kids go to sleep. For the past four years, I am fairly sure that we both wished for the same thing, regardless of who got the lucky long end. This year, I "won." I asked him what he wished for and he wiped away his tears and glared at me. I know that he assumed our wish was the same, but he was wrong.

I didn't make a wish. I just smiled at him, and asked him to throw the bones away and lay with me on the couch.

I hope you all have many more Thanksgivings. Take care of yourselves.

1 comment:

  1. Wow! What an awesome meaningful stellar post! Yes, we are but a coin toss away from becoming what we fear most, be it cancer, bankruptcy, homelessness, whatever. On the other side, I could win the lottery tonight and become fabulously rich. I don't deserve to win the lottery but I also didn't deserve cancer. You play the cards you are dealt and make the best of it. I was born with crappy genes that let me be a long term survivor but at the cost of having to fight the cancer over and over during the years. When and if my luck runs out and my cancer is no longer able to be contained, it won't be because I suddenly started doing something wrong. It will just be my time to go. Thank you for this very honest post, Katy.