Wednesday, October 1, 2014

Day 1,481: On "Why I Hope to Die at 75"

Today is October 1, which marks the beginning of breast cancer awareness month.

I believe that those who read this blog are already aware.

So, moving on.

I am writing today in response to a piece that has already garnered wide attention. Ezekiel Emanuel, brother of the Mayor of the city I call home, penned a piece for the Atlantic entitled "Why I Hope to Die at 75." Much has been made of the implications of his arguments. One could argue that there are years or even decades of life past 75. I could tell the author about my grandfather, who was forced into retirement at age 80, and they had to practically kick him out the door because he wasn't ready. We all have such stories.

I am actually sympathetic with much of what Mr. Emanuel has to say about quality of life, and our collective obsession with the idea that death is somehow optional or at least an abstraction that happens to other people. I think we often go too far in attempting to prolong the inevitable. On the other hand, I find it interesting that he seems to believe that prolonging life is the same as prolonging suffering. In the case of cancer, for example, he states that one should not receive treatment after age 75. The assumption is that cancer treatment involves too much suffering, and that one's family should not have to bear witness to such things (I have heard this too many times about cancer treatment--as if it is so horrible that our families will never get over having to deal with us when we were going through it and we would, I guess, be better off dead). Of course, there is nothing silent in the good night of dying from cancer that has spread throughout the body. One suffers with cancer either way--now, or later, or both. There is no quick and painless cancer death. But I digress. I am not particularly interested in making these arguments. I want to respond to one specific theme in this piece; it runs throughout, but is most pronounced in the following paragraph:

But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

But here is a simple truth, sir. Many, many people do not have to live to 75 or older to live in a state of deprivation. Many are born disabled, sick, or infirm. People go through the injustices of illness, deformity, disability, and decline at every age and stage of life. We are born helpless. Some of us have lost the ability to do almost every basic thing in life--and we haven't reached 40 yet. Sometimes, the body, or the brain, simply does not work. Old age is not required for that truth.

Further, where is it written that we owe memories of vibrancy to our loved ones? The author goes on to discuss how he would have lived a good life by 75, seen his children and grandchildren, and then states that he wants these people to remember him as the able youngish man he once was. As if children love their grandparents because they are spunky. Sometimes, children deeply love their grandparents BECAUSE they are so old, and slow, and, well...interesting. As a child, the gray hair, the stooping, the fact that they just like to sit, the feel of their skin, these are the things that make grandparents special. These imperfections are part of what makes grandparents simultaneously real and impossible; in the words of some boys who are way too young to appreciate what this really means, "That's what makes you beautiful."

I'm saddened by the idea of the world Mr. Emanuel describes. In this world, our importance as human beings is dependent on various abilities--commodities, you might say--that we perceive that we have that offer value to others. Our contributions are born of energy, vitality, clear-headedness, health, quickness, creativity, humor, brilliance. One could argue that these things do not decline with age. But let us assume that the author is correct, and they do.

What of it?

Is there nothing to be learned from what the old, sick, infirm, and disabled can teach? Is there no lesson in empathy, perspective, slowness, resignation, stoicism, wisdom, and yes, even pain and suffering?

It seems to me that the qualities the author values are qualities that many people value in themselves because they aren't yet at the point where they have learned to value other things.

Sometimes, I lament my old, or, more accurately, my young self. I was hilarious as a child and a teenager. I was extremely creative, bright, and curious. I feel that I am still these things, albeit to a lesser degree. Looking back, I think I know what was happening in my youth. Life was hard; it's always been hard. And yet, as a kid, I had no control over that. What could I do? I used humor and creativity to get by, because honestly? They were all I had.

Now, I have the luxury of control, at least over some things. If I want to be boring, so help me, I will sit here and watch the world go by. No one can tell me what to do, not any more.

Back to the point--what is there to learn in a world in which no one survives past her prime? The idea that we owe our loved ones a memory of ourselves that is fit and healthy and happy and young is truly bizarre. Does the author really believe that in the face of illness or decline, people see nothing but feebleness, ineffectualness, and the pathetic? Sometimes, I think that my best memories, or at least my most important ones, came straight from being faced with the very reality Mr. Emanuel describes with such disdain.

If we were all to live in a world where illness, disability and physical imperfection did not exist, I would be denied the memory of the following:

The young boy who held my hand and told me it would be all right and that my mother was on the way after I was hit by a car at 9 years old and was left in the process of nearly dying in the street;

My parents turning my body so that I wouldn't get bedsores and lifting me onto the portable commode in our living room as if that was just part of every family's routine;

My friends who waited with me at the club because I couldn't go into the room with strobe lights due to epilepsy;

My 6th grade teacher, who was short and slight and had been a paramedic in the army, so he knew what to do when I had a grand mal seizure in front of the entire grade, and though I was unconscious and can't actually remember, I swear I can picture him throwing desks, chairs, and children out of the way and cradling my head in his hands;

The woman who looked at me with some disgust but patted my shoulder, offered me a Kleenex, and asked me if I was all right anyway, as I stood at the train platform vomiting all over myself in the wind and the cold of winter, and no one else stopped or looked at me but her;

My son, asking to kiss my breast to make it better, though it was no longer there;

My daughter handing me a stuffed turtle in the hospital, when I was having heart problems brought on by chemotherapy;

All the people who looked at my bald self as if that was the same face they had always seen, because it was;

and, things like this:

My husband, cleaning up after his grandmother on Thanksgiving, because she had had Parkinson's for more than ten years and she couldn't really walk and yes, she was old, and she didn't make it to the bathroom, and she soiled herself. Mr. Emanuel assumes that this was an indignity to witness, that no grandson should have to be in such a situation, that no wife should have to see her husband cleaning shit off the stairs when he should have been eating apple pie. But the thing is, this is what I remember. I remember being grateful to my husband's grandmother, for having had such a big hand in raising a boy who would become a man who would quietly and without complaining clean other people's shit up off the floor. I remember when I met him, when we were both 27, and he admitted to me on our first date, with no shame at all, that he lived with his grandmother, because she had Parkinson's and was recently in a car accident and couldn't care for herself, so he figured he should do it, because she had cared for him.

I remember a few months before she died, when she hadn't gotten out of bed in more than two years except to use the bathroom, and her mind was addled, and I sat there, talking to her about her daughter whom she said she had just seen though of course it had been years and years. I went along with this story, which I could barely hear because of what the Parkinson's had done to her voice, and I talked to her as if I knew her reality as if it were my own. And if I had felt any pride in my ability to relate to her in that moment, it was replaced with something else, when she grabbed my arm and looked at me with perfect lucidity and said "I'm glad he found you. Now you can take care of him." And she drifted off to sleep.

Who is teaching whom, exactly?

Isn't this what we are living for, not a perpetual state of alacrity, but rather a perpetual state of grace?

If we all died at 75, we would miss so much. I would miss the memory of my then-boyfriend's grandmother, with her paper-thin, translucent skin, who would stand at the kitchen sink washing plastic forks, who could speak English perfectly but just seemed tired of her second language at that point so she no longer bothered. I would miss the memory of how this woman would silently grab my hand as I walked past, and look at me with those wonderful old eyes and smile at me, and her tacit, silent acceptance of me was important even when I was 18.

If we only valued health, we would miss so much. I would miss the memory of a woman who could not move or walk, who had died and been brought back to life only to be in a medically-induced coma for a long time, a woman who could not cook, or play, or talk for long, but who nonetheless took naps with me when I was four years old and taught me that I could stop sucking my fingers and the world wouldn't come to an end. That woman was my mother. She was 29.

If we only valued happy memories, we would miss so much. I would miss the memory of my grandmother's death rattle when I was 17, of the terrified look in her eyes, that look of mortal fear, which is a thing that exists and that means something. I would miss learning at a tender age that the permanence of death is a shock even to those who have lived into the later years.

If we only valued a sharp wit and a quick tongue, we would miss so much. I would miss the memory of telling my daughter "Just wait" when her brother was learning to speak and had quite a stutter. I would miss the look on her five year old face when she understood that "just wait" was good advice, for that and so many things. I would miss the memory of all the older folks I have known who have taken such a long and circuitous time to tell me a story, as they got lost in their memories or forgot what they meant to say, or struggled to find the right word, and after the long time passed and the story came out, it was, to say it simply--worth the wait. Every single time.

If we only valued speed and physical ability, we would miss so much. I would miss the beauty of what happened last weekend, after I went apple picking with my family and stopped at a tiny diner in small-town Indiana, and a family came in, and they were clearly regulars. The old woman was using a walker and was very, almost excruciatingly, slow. The owner told them to sit where they liked and she smiled and said "I just don't want to be in anyone's way." And the waitress laughed and said "Oh honey you know we always keep the best table for you."

If we only valued people whose brains function at top capacity, who can walk, who are never sick or close to dying, well, I hate to say it, but I wouldn't have any friends at all. They'd have set me out to pasture thirty years ago.

The thing is, I don't want to live in the world Mr. Emanuel describes. I don't want to live in a world where no one is sick or old or aware of the fact that they're dying. I don't even want to live in a world where no one is feeble, bitter, or unhappy. I don't want to live in a world where everyone has all their limbs and other body parts and everything works perfectly. I don't want to live in a world with no walking sticks.

I want to live in this world, with its moments large and small, moments of real grace. I want to live in a world where people have seen enough of what the world really is to look at each other knowingly, without pity or sorrow, and silently affirm that when it all started, we were all beholden to someone else to survive, and it will be that way again, and again.

4 comments:

  1. Even then, she had that personality.

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  2. Couldn't agree more. Thanks for saying this. Having grown up in a household with my dad, who had Parkinson's, I think I'm a better husband today to my wife with TNBC as a result of my past experiences. Life - every part of it - makes us who we are.

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  3. Very well said, Katie. Very well said.

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  4. It's great post! Thanks for sharing!

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