On Quality of Life: A Eulogy
It steadies me to tell these things.
From “Settings,” by Seamus Heaney
Today began with some rearranging of Ronan at four in the morning (by Rick), and a baby that slept until – wait for it – eight o’clock. Now I’m having coffee and Ronan is in his bouncer. Later today there may be a visit with P’s new dog, Bakiri. I want Ronan to touch as many animals as he can in his brief lifetime – later this week we’re visiting a hospice care facility for animals (of all kinds, even ducks!) south of Santa Fe.
This week Ronan was exactly 11 months old, although he’s essentially the same baby we knew at six months. Before we learned what was wrong I used to rush home every day, hoping that he had crawled or said an early word like “Da Da,” anything to reassure me that he was on a “normal” track, anything to unclench that fist of instinctive feeling in my stomach. Now, of course, we have no expectations, which is both oddly liberating and horribly torturous. It’s no fun to watch for decline instead of progress. (I now feel as though I have nothing to say to mothers with babies Ronan’s age: I don’t want them to pity me, but I am not interested in hearing about what their kids are doing.) “Things start to change around their birthdays,” other Tay-Sachs parents have cautioned us. Yet another tiny cruelty of this disease: it picks what would normally be a celebratory milestone to expand its deadly reach. But yesterday Rick made him giggle wildly, the two of them laughing so hard it gave Ronan the hiccups.
A friend of mine recently wrote to me: “Ronan knows more than we do.” She’d had a dream about Ronan. He was swimming underwater for a long time, without help. He was happy. Safe. Seal-ish, as befits his name. I imagine him treading water that shifts from dark blue, to New Mexico-sky-impossible “there’s no color like that in the crayon box” blue, to ink black, to the wildly contented blue of the sea one summer along the coast of Ireland (yes, Ireland) where we felt like we were vacationing in the Bahamas – warm breezes, sweet grass, fat bees tumbling past our picnic blanket, drunk with summer. The idea of staying in one place, of getting stuck, makes me sad, but why? Why do we assume that no progress forward, away, beyond, from where we are now, means unhappiness? And what do we mean by progress anyway? Why are we so eager to get somewhere (and, as parents, to have our children “get there” – wherever “there” is – a developmental milestone, a spot in a swanky preschool, etc.). Where exactly are we going and what do any of us know? Well, we know that we’re headed one place for certain, although we’d rather do anything but think about it. (“Hold your breath!” my brother and I used to say to one another when we passed a cemetery.)
A character in Thomas Mann’s The Magic Mountain notes that, “Ah yes, life is dying – there’s no sense in trying to sugarcoat it.” (Whenever I send an email or a text or make a phone call to one of the Tay-Sachs moms, they’re sure to tell me, and usually in these exact words: “I won’t sugarcoat anything.”)
What was life? No one knew. It was aware of itself the moment it became life, that much was certain – and yet did not know what it was. Consciousness, as sensitivity to stimuli, was undoubtedly aroused to some extent at even the lowest, most undeveloped stages of its occurrence; it was impossible to tie the emergence of consciousness to any particular point in life’s general or individual history – to link it, for instance, to the presence of a nervous system. The lowest animals had no nervous systems, let alone a cerebral cortex, and yet no one dared deny that they were capable of responding to stimuli. And you could anesthetize life, life itself, not just the special organs capable of the response that informs life, not just the nerves. You could temporarily suspend the responses of every speck of living matter, in both the plant and animal kingdoms, narcotize eggs and sperms with chloroform, chloral hydrate, or morphine. Consciousness of self was an inherent function of matter once it was organized as life, and if that function was enhanced it turned against the organism that bore it, strove to fathom and explain the very phenomenon that produced it, a hope-filled and hopeless striving of life to comprehend itself, as if nature were rummaging to find itself in itself – ultimately to no avail, since nature cannot be reduced to comprehension, nor in the end can life listen to itself.
Mann, of course, in this very serious-sounding, vaguely scientific passage, was influenced by Hegel’s phenomenological theories (things become what they are during the process of becoming what they are; in other words, all life forms are forged in the fire of a never-ending, tumbling-forward-and-behind-and-sideways process – they don’t just land at an end point, whole and complete, and they never stop changing. They never arrive). Over a decade ago I sat in a sun-filled classroom at Harvard and wrangled grumpily with Hegel, and what his elaborate system of thinking (which required whole pages of charts and graphs to sort out) had to do with theology, life, or really anything at all. (Anyone who has ever trudged through one of Hegel’s muddy, dense – but brilliant – passages of prose will know what I’m talking about.)
And yet Mann and Hegel were on to something. What the hell is life? How do we recognize it, protect it, and finally, as we are all asked (forced) to do, let it go? Can it just be life without knowledge of its life-ness? And, in our case, mine and Rick’s, how do we let life go for someone else, for our favorite person, for our child?
Tay-Sachs directly affects the brain and therefore all of the systems that make us “human.” The degeneration of the brain tissue means a gradual disconnect from the faculties and abilities that make life what we might describe as life: movement, vision, taste, touch, sound. But how do you quantify a life in a person who never was able to cognitively state “This is my life?” Has quality of life (at least in the United States) simply come to mean successful (read: rich), carefree and happy? Right now, Ronan wants for nothing. Whether or not he realizes that he is safe and loved doesn’t change his experience. Or does it? (Right now he is batting at the blue frog in his bouncer and coo-ing, not wondering “when will I no longer be able to stop batting at my blue frog and coo-ing?”) What we do know is that, in many ways, he will die before his heart stops beating, or his senses, at least will die, and that’s death. Right? Maybe? How do I understand this? How does life listen to itself when it’s not constantly scrambling for meaning? How is life lived for a being, like Ronan, who is not scrambling for meaning?
Hegel to the rescue! Who would have thought? Yes, Hegel was talking about the development of consciousness from a definitive “I” perspective; of a being that is conscious that he or she is a distinctive being, one with a clearly posited Self (I once went on a horrible date with a fellow theology student who insisted that, whenever the word “self” was said, it must be qualified with this phrase – “self with a capital S.” Okay. There was one date). Ronan has no sense of an “I,” but Hegel also had a larger vision that, at least for me, departs from Judeo-Christian notions of self and agency and even salvation; he talked about “Spirit” (a kind of stand-in for the notion of God and/or the Holy Spirit, although not exactly), as an animating force that exists within every living thing, a force that is not just about forward motion, but about spiraling, doubling back, mucking up our notions of time, our understandings of development and progress. Spirit itself has a process of coming to know itself independent of where it is housed/dwelling. In this way (prepare for your grave roll, Hegel), this ambitious thinker with a big, square head (In my mind, all of the 19th century German philosophers look like Martin Luther and therefore have hulkish heads) was kind of…Buddhist. Yep. In a word: life is life is life is life. Your task is to live inside it, change within it, be radical in your acceptance of shifts and alterations. Life: There is no quantifying it or stopping it (but alas, the various graphs and charts would try to make some logical, intellectual sense of it; you’ve got to admire the guy’s eagerness and intellectual tenacity.) Everything has an essence (in Buddhism, a “Buddha nature”). Ronan’s process is, in a word, short and terrifying, but it’s his own, although we are called upon (and here’s the heaviest burden) to literally determine that process as much as that’s possible. (Ten years ago if you’d told me that I’d be using Hegel, of all the brainiac and difficult philosophers I was reading during that time, to try and sort out the logic and feelings around determining the end of my infant son’s life, I would have given you the hairy eye and trotted across the sun-dappled quad with my latte in one hand and a Greek lexicon in the other. There might have been a hair flip, too.)
This week we met with Team Ronan at the Children’s Hospital at the University of New Mexico: a marathon day of one pediatrician, one neurologist, three hospice nurses, one hospice doctor, and one physical therapist who will begin coming to our house next week to do cranial sacral treatments and general physical therapy. Our mighty crew. Rick was nervous and talked a lot; I was thirsty and starving but almost gagged when I tried to drink the lemonade that seconds before I’d been desperate to drink. Between meetings we fed Ronan in the hospital cafeteria, picked at a few stale bagels, and looked out the windows at people in the courtyard: nurses eating salads and pointing plastic forks at one another to make a point; a drug company representative (his briefcase was an advertisement) talking to a beleaguered looking doctor; another depressed looking family like us with a six year old – and then we looked away. (I’m now on a first name basis with the barista at the coffee bar in the pediatric wing, and he sometimes slips me a free scone with my coffee.)
We spent the whole day discussing Ronan’s “end of life” options. (For the next few days I talked with three different mothers who did not use feeding tubes; yesterday I finally turned off my phone minutes before a scheduled phone chat; I wanted to take a nap, eat one of my husband’s fabulous dinners, go to the lovely N’s 30th birthday part and drink too much sparkling wine. All of which I did.) We can only do for Ronan what we would do for ourselves: Rick and I don’t want tubes even waved around in our vicinity; with that in mind, we try to make these absurd decisions for our son.
Is it Christianity that has made this discussion about death such a chore? For some, the concept of heaven is a comfort. This doesn’t work for me: I can’t picture Ronan floating, cherubic, into the arms of the grandmother and grandfather I’ve never met, or hugging and kissing all the people I’ve loved who have died, as if I could determine a room full of my loved ones and magically place him there: Ronan Ex Machina. Who says those people would even enjoy being in close proximity to one another in heaven or anywhere else? Does heaven have rooms, or puffy cloud condos or stringy cloud strip malls or what? Is there wallpaper? Carpet or wood floors? How does Jesus have time to see everyone? No, heaven for me is a projection, a desperate wish, and not a comforting one. Buddhist theories discuss death as the final gateway of life, a threshold (I like this image; it helps me to imagine that Rick and I can accompany Ronan right up to that mark, that line, even if we cannot cross over with him.) In this country, in this culture, we are exceptionally good (I nearly wrote “very,” but was reminded by one of my students that “very” is not a useful or vital adjective. Too right) about “saving” lives, but we are “rubbish,” as Other Em would say, in terms of understanding what the hell that means. What are we saving and why? Who gets to make the choice?
Case study: the neurologist/pediatrician/geneticist versus the hospice care nurses and doctor. The first three believe that not to insert a feeding tube for a child with a “terminal illness” is “ridiculous.” Some other (in all fairness, solicited) advice: “I wouldn’t want to starve to death.” “We don’t let babies starve to death in this country.” “Feeding tubes are easy.”
“But,” I countered, “we’re not talking about a starving child living in some country where food is not available and that’s why they’re starving, are we?”
Exactly my point. When I worked for a relief organization I met women whose children had died from malnutrition, diarrhea, typhoid, war-related violence, meningitis, malaria, botched abortions, fevers and the flu. In Ronan’s case it’s not an issue of a growling stomach, a bloated belly, or the development of a disease that is a direct result of living in squalor and poverty.
“So, if the body is no longer able to eat, it’s kind of like an animal who stops eating and then goes out under a tree and dies,” I said. “It’s a sign. It’s nature stepping in.”
“But we’re not talking about dogs, we’re talking about people, and a feeding tube is easy.”
“But we are talking about life.” (And we were having this appointment at a place called, ominously, “the Mind Center.”)
“Yes,” he said quizzically.
But are we?
A feeding tube is “easy.” It can extend life by six months or longer, but this often paves the way to other, more serious interventions that Rick and I will not consider, because all the while the brain is fading, fading, fading, and then it is gone. We have to decide when his quality of life has diminished to the point where letting him go is the more humane option. That may coincide with the option for a feeding tube or it might not. No crystal balls, sadly. When he can’t interact or hear or feel us, is it just a beating heart we’re saving, and why? (When my memoir first came out I was asked to comment on the situation with Terri Schiavo, who was on life support at the time and whose condition galvanized a national debate about quality of life issues. I got huffy and offended, because how dare they ask a disabled woman, just because she’s disabled, about a woman who is in a vegetative state, as if these two situations are equivalent? Now, of course, I’ve got plenty to say.)
Three hours later, in a well-lit room, we were handed this competing worldview from the hospice doctor: “When the body can no longer feed itself, sometimes it is uncomfortable to provide nourishment. It’s the body’s way of shutting down.”
“It is not cruel?” I asked.
“It is not,” he said, and then, looking at me, and knowing I needed to hear it, he said again, “it is absolutely not. It’s what the body does; it knows what to do.”
Hospice care refers to terminal illnesses as “life-limiting” diseases. The head nurse wore a velvet skirt and blonde bangs. Another gave Ronan a blinking light that we now call his Ronan-1-Kenobi life saber. We’d met with the same nurses at the Mind Center earlier, in a windowless room with an old computer and a white noise machine (?) in the corner. In this new room in the pediatric wing, the sun lined their faces; they wore IDs on lanyards that made me think of my years as a camp counselor and the way I once sternly instructing the kids in my charge: “Don’t. Swing. Your lanyards!” – and I had a sharp pang in my gut, wishing Ronan would grow up to be on of those slouchy, grumpy kids on the cusp of adolescence. Liberated from the sharp angles and cold tile floors of the Mind Center, the energy here was muted, respectful, solemn but also wildly celebratory in a way that was almost euphoric. There were circus posters on the wall and padded chairs to sit on. The physical therapist gave us a blanket made by some Lutheran women in Albuquerque (I can picture them sitting around a long table in a spic-and-span church basement that smells of bleach and sugar, eating krumkaka and sipping weak percolated coffee, chattering away); we had to change Ronan right there on the table and everyone admired his chubby little legs and his pooping prowess. Nobody said, “I’m sorry.” What they did say: “This is a journey, and we are proud to be on it with you.” I believed them.
We also learned that kids are dying all over the state. From leukemia, other metabolic disorders similar to Tay-Sachs (and horrible in different ways), bone marrow cancer, liver and kidney disease. Kids and babies die, but in our world of the “miracles” of modern medicine we don’t expect it, we say it’s “wrong,” we kick and rail against it. (In Texas we lived next to a small cemetery shaded by live oaks. It smelled of urine, pot, and damp dirt. My dog liked to nose around in there; there was a spot at the back full of children who had died in a flu epidemic: babies that were two days old, six months old, four years old. Martha, Bernice, Ruth, Mary, Jane, Alice. At the Tenement Museum in New York City, you can learn about hundreds of babies who died of “swill milk” – rotten liquid sold cheaply off carts in the Lower East Side in the 1800s.) And kids and babies live, too. Last night, watching ten-year-old L do a successful magic trick, I found myself overcome with gratitude for his life, his face, his crazy hair, his sweet intensity. I don’t believe in God but found myself thanking God anyway, for his existence in the world.
“We know,” the doctor continued, “how to help babies with life-limiting diseases.” Is life-limiting just a silly, euphemistic way of saying terminal/about-to-die? Are these tweaks in language similar to the discussion of differently abled versus handicapable versus handicapped versus crippled versus disabled? Is it just semantics? Maybe, but I liked the idea that “life” was at least acknowledged in the hospice version of Ronan’s condition, even though these folks are the ones who will be helping us prepare for his death. Life and death together. The ultimate pairing; truly, the only one.
“We have to ask, at every stage and every intervention,” the doctor went on, “what is this for? What does it lead to? What kind of a life is he living?” In other words, if the life is truly limited, when there is no cure, then what are we prolonging? He was wearing a blue shirt. His hands were square and strong, builder’s hands. A doctor – a man – who helps people die. Can Ronan hear, can he touch, can he taste, swallow and see? His job is to help us answer these questions.
A few years ago I was in New York City when I opened the New York Times one cold morning while standing on line at Starbucks and saw that my mentor, Nancy Eiseland, had died. (I always read the obits in newspapers – the narratives, the small details, those few summed up paragraphs of their entire lives print into you the way newspaper ink rubs off on your hands.) She published books, guided countless students, helped me run a workshop for disabled women in Geneva, mothered, loved, lived. The experience of living in a difficult body informed her life and work; in short, her body made her a visionary, and it also, eventually, killed her. Yes, she was not 85, her death was lamented as “untimely,” but all of our bodies will kill us eventually, even if we’re super fit, super smart, super famous, super rich, and super loved.
Laura, a former student of mine and later, a friend, died in November. She, too, was brilliant, although she made people uncomfortable. She used a breathing machine, had a full time care attendant, and was paralyzed. She was also the smartest student I’ve ever had – the most committed, the most mature, and the most generous and insightful in workshop. She traveled all over the world, thought deeply and wrote dazzling prose, and she understood that she would not live the proverbial “long and healthy life” (she was in her 40s). I vividly remember an essay she wrote for me in which she described the moment, in the library, when she looked up her disease and learned that her body would “slowly fade away.” It was, to date, the best student essay I’ve ever read: tightly written and organized, “about” something significant, and an emotional and intellectual experience beautifully rendered. No pity, no Hallmark card poem moments, no soft-pedaling the reality. Just life and death, in that moment, held up together, at once. Fusion. The effect was stunning. It was, in a word, art. If Ronan could think like Laura, would I consider every physical intervention possible? You bet. What I’m saying then, is that quality of life means quality of thinking, right? Yes. So what does that mean for Ronan’s “purpose?”
Ronan’s purpose, Ronan’s life. Am I learning from him? Yes, although I’d prefer not to learn those lessons, and am just sorting out what they are, and anything I learn will not lessen the impact of his death, which will, in a very real sense, destroy a part of me. There’s no way around that. But still, Hegel’s concept of Spirit is, I must admit, at work. There’s a radical acceptance at work in me, a new and yet familiar human knowledge that life is only just chaos, and control is impossible. The fragility and terror of life, mixed up together, is starting to make terrible sense, and there’s an awful freedom in this realization. What would Hegel say? (A lot, presumably. His books are upwards of 400 pages long). He would probably most certainly caution me (he was a good Christian, after all), as the hospice doctor did, not to throw myself on the funeral pyre with my son, which I don’t intend to do.
Ronan’s purpose is not to teach me; we often say this about people who defy our notions of normal and I find it pathetic, patronizing, and a way of distancing ourselves from our own fragile bodies and lives. I don’t believe that disabled people exist to teach people life stories – that is not their purpose; it isn’t anyone’s purpose. There’s a smugness about the idea that bugs me. I learned a lot from Laura, not because she was brave and fearless, a mother and a partner and an advocate, as many people are, and as she indeed was, but because she was a gifted writer who took my mind to new places. I learned a lot from my mentor Nancy Eiseland, not because she was so brave to get up and leave her house every morning and have a job and a family and a life (In a wheelchair! Yes! Imagine!) but because she thought about things in a new and completely original way, because when I read her book The Disabled God her words and thoughts cut a new pathway in my brain, shifted my worldview, gave me a new lens, made me think. Just like other people living in their bodies, disabled people don’t sit around bitching and moaning because they are too busy kicking on, living and moving and thinking and breathing. Those other narratives read, to me, like disability porn for able-bodied people who don’t want to acknowledge that they too, like everyone, will one day be disabled. Those stories help keep that delusion alive for just a little bit longer.
Ronan has his own path that has nothing to do with me, although I can try to understand it in my limited way. We are creatures, growing, shifting, moving, but never really arriving. I’m glad Hegel made his nerdy, complicated graphs and diagrams about Spirit – thinking about that, and not a Disneyfied version of Heaven, the one many of us are taught in Sunday school – is helping me.
And Ronan is making me think, yes, but my task is still to understand him as a person, a being, who is independent of me and yet dependent on my actions. I’m not going to do him the disservice of regarding him as an angel or telling myself that God has “other” plans for him, and for me. My plan is simple and yet impossible: to go with him as far as I can along this journey that we’re calling his life, to be with him as deeply as I can from moment to moment, and then to let him go.