How Disability Helps Me Find Life in Death

“If losing your friends all the time is a dismal way to live, closing yourself off from humanity is even more grim.”

This is An Unquiet Mind, a monthly column by s.e. smith that explores disability identity and its interaction with the world at large.

“You absolutely cannot die on Saturday,” I informed her.

In her hospital room, her nurse had propped the phone against the pillow because she wanted an illusion of privacy, not a conversation blaring out over speakerphone. Her voice, soft and dulled, breathless, came through with the crackling of her pillowcase, hospital PA rumbling in the background.

“Why?”

When you are fighting for breath, you choose your words sparingly.

“Because I’m already going to a funeral that day,” I say, and there is a rasp, the remains of what used to be an ebullient laugh.

She dies on Tuesday, not, I think, out of courtesy for my scheduling needs but because that is the day her body decides that it is done. We sit in the hospital room with her cooling remains, watching the nurses adjust the bed so that she lies flat, tucking her arms under the blankets with the same care they use for living patients. They leave her face uncovered. This, her deathbed, will be someone else’s bed after the people from the funeral home come. I find this practical, morbid, slightly hilarious.

“It has been a long time since I’ve seen someone die in a hospital,” I remark, as I pull the rings from her fingers before they start to swell, dropping them efficiently into her wife’s hands.

Someone comes by with a coffee cart and we are reassured that it is free. They have scrawled our room number on a Post-it attached to the coffee pot. The longer we sit here together, the less her body seems like her, the more her wheelchair parked in the corner seems like something that belonged to someone else, even with the “fuck patriarchy” sticker on the back.

The hospital chaplain comes, summoned by a discreet call from the nurses’ station, and we view his white collar and purple “CHAPLAIN” hospital ID with antipathy.

“Shall we pray?”

“NO,” we say, more or less simultaneously, and a rattled gasp of air explodes from the corpse, as though in agreement. We all start laughing and he slinks out again, shoes squeaking on the linoleum.

Being an atheist makes grief more piercing; we are done here. We will never see each other again. Whatever made her her, that intrinsic nature, is gone. I should have answered her texts more often, should have gone to her last dinner party. But I didn’t, and now it’s over, just a handful of us sitting awkwardly in a room with a dead body, waiting. There are no do-overs.

“How many death certificates should I get?” her wife asks the room. “Someone told me I need a lot?”

Being a disabled person makes grief a constant; we have an annoying penchant for dying. We don’t necessarily mean to, but we do it anyway. Death comes for everyone eventually, but Death likes to show up early for us, knocking on the door fifteen minutes before the party is even supposed to start, looking awkward and embarrassed, holding up a bottle of cheap wine.

“I thought it would be creepy to just wait in the car,” Death says, and we sigh and let the door swing open. Death, who has not bathed in a while, does not smell great.

*

Being disabled does not, in and of itself, necessarily predict a shorter life expectancy, though some specific impairments are associated with shorter lives. The numbers are getting better all the time for people with conditions that are more treatable now than ever before; Stephen Hawking just proved, for example, that it’s possible to live far longer than the average two to five years after an ALS diagnosis, while people with cystic fibrosis can live forty years or more, rather than dying in infancy as they did in the 1940s. For every disability that comes with a term limit, there are countless others; what kills us are not the impairments we live with, but the way in which society treats us. We die because we can’t access basic health care, because racial disparities are amplified by disability, because we are crazy and our brains make war on us and sometimes they win, because some people view us as easy targets for violence and abuse, because people sometimes do not listen to us when we say that we are hurting, that we know our own bodies, that something is very wrong.

I mark the passage of time not in weeks or months, but by deathbeds and funerals. A trip to a far corner of the state to visit a dying friend at his home, where he is surrounded by people who love him, who will then carry him to the nearby green burial park and dig his grave when he passes. A voyage to the heart of a grim, echoey hospital, where a friend is dying alone, isolated, and forgotten. A journey to a saccharine memorial service at some state park or another, where I accidentally crush the origami flower handed to me by the funeral director. A “celebration of life” where people I barely know talk about the deceased in ways that make me wonder if I ever truly knew them. A vicious fight in a crowded kitchen packed to the rafters with funeral casseroles about whether people can, just this once, perhaps refer to their child by her actual name and gender. “Would it kill you?” I ask, thinking viciously that their refusal in life almost certainly killed her.

Sometimes I feel surrounded by death, steeped in it, drowning in it, forever searching for appropriate funeral clothes or sifting through old photos to find a print of happier times to give someone. I tell someone I can’t make it, I have a funeral. They ask me “was it drugs?” and I snap “sometimes people just die.” Because that’s the truth of it: Sometimes people just die, and you have to decide to go on living, even though they are gone, even if their absence leaves a rent in the fabric of space, even if you get blisters digging their grave that never seem to fade from your hands, even if you’re never going to get that twenty dollars back now.

The other option is to become so snarled in grief, tangled in lines of sorrow like a fishing net, that you sink to the bottom of the ocean and never reemerge, lost in shadow, watching fish with bulbous eyes float by. Grief can begin to feel like a full-time job; it ambushes you with a wave of sorrow so intense that you nearly double over in the aisle of the grocery store, turns the scent of someone’s perfume into a stubborn haunting that refuses to leave, makes you turn away when you pass the spot you used to sit together to take a break on your weekly walks. It creates strange patterns in our lives, like the pair of underwear I refuse to wear because every time I do, someone dies. Or the borrowed sweater never returned, hidden in the back of the closet so I can smell it sometimes, losing myself in warmth and softness, feeling like a thief of memory. Everything I do feels touched—or tainted—with grief, sometimes. And we recognize it in each other, the grief-eaten, nodding at each other in silent solidarity when we pass.

I could, I suppose, never make friends with anyone, dreading the inevitable. I tried that for a while, but even in isolation, grief found me. I began to view every birthday as another year closer to a statistical deadline, “happy birthday” petering out on my lips, cake tasting ashy. I adopted a caustic fatalism for a time, insulated myself against that from which I cannot flee by sneering at it. I quietly drifted away when things started to get bad, told myself we weren’t that close anyway and she lived so far away now that I couldn’t be much help with the whole cancer thing. In my mind, we “just grew apart” while in my heart I knew full well what had happened and I hated myself for it.

If losing your friends all the time is a dismal way to live, closing yourself off from humanity is even more grim. So you find ways to live in bits and pieces, to bank the happiness away for future times when you may need to make a withdrawal; a grieving parent pulls me into an awkward hug and for some reason I remember the time someone got stuck up a tree trying to get their cat out of the tree and the fire department came and the cat streaked down the trunk like a flash. I will tell this story later, I think, and people will laugh because it is funny, but also with relief, because they have permission to laugh. Many of us in the disability community get skilled at squirreling away the good times to remember in the bad. When someone dies—I loathe euphemisms liked “passes”—we surround each other, hold each other, with stories of better times. We learn things about people that we never knew in life, and it brings a spike of sorrow—how did I not know that he loved lemon bars too?—but also thoughts of a life well-lived. Some of us fight so hard in life to challenge the perception of our lives as tragic that we refuse to let our deaths turn into trafficking in pity, “in a better place now,” and “defied the odds” narratives.

I tell people I hope for my funeral they have a big party, prop me up in my coffin in the middle of the room and shove cake in my face, then throw me in the back of a pickup and take me to the crematorium. I want them to have a final memory that is filled with joy and hilarity, not a suffocating memorial filled with sad-faced people and a nauseating slideshow of baby pictures. If they’re so drunk they accidentally drop me while they’re trying to load me up, so much the better, as long as there’s a designated driver. There is no better place than this, life, the smell of petrichor after the rain, the roar of waves after a storm, the feeling of a perfectly round stone in your hands, the taste of blackberries still warm from the sun, the view that seems to go on forever from atop the headlands, so beautiful it makes your heart contract.

I live, I think, a richer, fuller life, filled with intense, transcendent happiness, because I also live a life filled with bottomless, unfathomable sorrow and grief. “Live fast, die young” seems almost made for some of us. I find happiness anywhere and everywhere, in a group of friends arguing over the superior pie, in opening my eyes on a trans-Pacific flight to see the sun rising over the sea, in the pure joy of finishing a really good book and flipping it over to immediately start again, in the delight of creating something beautiful for another human being simply because I love them and want them to be happy. The grief that follows me makes me more mindful—is this the last time we’ll see each other? Surely I could squeeze an hour or two out of my schedule for tea. Maybe I should answer the phone. Why not accept an invitation for an adventure?

I walk along the headlands with a friend, settling into that moment to just be, to listen to the ocean grumbling to itself and hear the wind rustling through the grass, to smell the sharp aroma of low tide and feel the sun on our faces. We are in a companionable silence, both lost in our thoughts. Fog hovers just offshore, reminding me that someday, perhaps sooner than later, I will be settled in next to them in a quiet room with Death waiting in the corner. “Remember when,” I will say, “we walked on the headlands that day and watched that little kid totally biff it on his bicycle?”

I don’t know if it will be them or me lying in bed or propped up in a recliner, waiting for the end. It almost doesn’t matter; we will have known each other so long, to the bone, that a part of me will die with them and a part of them will die with me. Whoever fumbles for the phone to text everyone else “it’s over” will pause for a moment to look out the window—I do hope it’s a nice view, like a garden, not some dumpster behind a hospital. “Well,” whoever it is will think, “that’s that, then.”