My grandmother’s death was my first. I was 6 years old. She lived with us in a house full of artists and kids and pets, a household in which she was the oldest and I was the youngest, the alpha and the omega. We spent a lot of time together in her room watching Julia Child on TV. We were close and I took her death hard. I am told that at her funeral, I went from ashtray to ashtray, eating all of the burnt match tips. Ashes to ashes, I guess. Grandma left her eyes to science, and the rest of her was cremated and flown (parcel post) to the family tomb in New Orleans. I have been interested in death, and unafraid of it, ever since.
My father’s medical mystery began about 10 years before he was diagnosed. His symptoms were small, not even symptoms really. His hands were always cold. He stopped being able to calculate our Scrabble scores. He began (annoyingly I felt) to walk a step behind me, no matter how slowly I went. If I stopped, he stopped. He had recurring vision problems, which eyeglasses didn’t resolve. He was sometimes agitated in his sleep and once hit Mom in the middle of the night while acting out a dream. He also began falling, but had excuses: it was his new shoes or the rain or a crazy bike messenger. One fall wasn’t such a big deal. Neither was two, not really.
We blamed all of this on his advancing age, and also on the fact that he was, in general, a complainer. In short, we thought almost nothing of this conglomeration of smallish issues.
It was the fainting, finally, that galvanized us. The fainting was creepy and alarming. Dad would stand up and freeze like a statue. His skin would get grey and he’d enter into this weird fugue state. He might whisper “Help” or “I’m dying,” from the cage of his frozen body. If I shoved a chair behind him and said “Sit down,” he couldn’t bend his legs. I’d have to poke the backs of his knees to get his body to fall into the chair instead of crashing to the ground. But even that happened only once or twice over about a six-month period. After some inconclusive tests, his GP told him to hydrate more, which was, of course, no help at all.
Eventually the fainting happened once a month, then once a week, and then every day. It’s a testament to how you can get used to anything that increases incrementally that it was only when he fainted eight times in one 24-hour period that we took him to the emergency room, and a really smart stranger in scrubs, who we never saw again, said, “Could be MSA.” That was the first we’d heard of it.
It wasn’t yet an official diagnosis, but we looked up MSA (Multiple Systems Atrophy) on the Mayo Clinic’s website, where we read that it was a rare neurological disorder that affects the autonomic functions, and “shares many Parkinson's disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance” along with orthostatic hypotension, a radical drop in blood pressure upon standing that leads to fainting. MSA seemed to fit.
The hospital sent him home after more tests, deciding to manage his orthostatis with a medicine called Midodrine to raise his blood pressure a bit. They sent him for an outpatient appointment with a neurologist, a woman we called Dr. C., who was humorless and wore precipitous high heels. We loved her.
Dr. C. asked Dad to remember a series of words while she checked his breathing and reflexes. He remembered two out of three. She gave him another series to remember while she checked his sitting and standing blood pressure. This time he only remembered one word, and it was from the first list. Mom and I threw each other a look. Interesting.
Then Dr. C. drew a circle on a piece of paper, put a dot in the middle and drew a 12 at the top. “This is a clock,” she told Dad. “Fill in the rest of it.” He took the clipboard and began writing. When he handed it back to her, she said, “OK, take one more look. Is there anything you’d like to change or add?” He looked at it. No, it was fine. Dr. C. handed the clipboard to Mom. Dad had crammed a tiny 1, a 3 and a 6 in the very middle of the circle, and nothing else. We were stunned.
It was then that Mom and I began to understand that something was very wrong with Dad, something that he could not describe because it was something wrong with his own brain. He saw the looks on our faces and in the car on the way home he said, “I drew the clock incorrectly, didn’t I?” He was understandably upset. He kept asking me about it at home, so I drew him two clocks, the correct one and the one he had drawn for us. He was able to see the difference, or he said he was. He had a hard time sleeping that night, bewildered by what was happening to him.
Still, for us, it was one of the best doctor’s appointments we’d had. Mom and I sat up over cocktails and began to rethink everything. “Maybe this is why he couldn’t operate the computer at work,” Mom said. When we began our own research for symptoms of Multiple Systems Atrophy, we saw that his chronically cold hands could be due to MSA, as well as his vision problems (he was probably suffering from something called ocular palsies). MSA also explained his falling (due to his diminished postural reflexes – a Parkinsonian thing) as well as his fainting (due to orthostatic hypotension). One of the symptoms of MSA can be agitated sleep due to "acting out" one's dreams. This explained him hitting Mom in his sleep. And the clock drawing gave us a window into how he was perceiving the world. It was an elegant expression of his visuospatial dysfunction. And his walking one step behind us, it turned out, was not him trying to be annoying. No, it was his way of adapting to the Parkinsonian difficulty of initiating one’s own movement. He was instinctively positioning himself to watch my feet to help him walk. My impatience with him fell away after the diagnosis.
There’s no cure for MSA, nor does it go into remission. So why was it such a comfort to give Dad’s group of symptoms a name? Well, for one thing, we were able to access medical information that described what Dad was experiencing in ways that he could not convey. It also allowed us to explain it to him. He had been feeling guilty for being so much trouble, and the diagnosis killed his guilt. It acted as an organizing principle for us, allowing us to adjust the world to be easier for him. We stopped giving him complex, multi-part directions. We made food that he could eat more easily, like sandwiches that he could pick up instead of having to use a fork. The diagnosis also allowed us all to prepare for his eventual death.
Dad was still himself, still had a sense of humor, still sang with us and recognized us and complained a lot. He asked me once in a while if he would get better, and I always told him the truth. I asked him if he had any regrets, and he said that he wished he had learned to play the piano better.
Less than a year after diagnosis, on a snowy Christmas Eve, Dad was suddenly no longer able to stand. It took three of us to lift him onto a toilet. We could not get him into the shower to clean him. And because it was Christmas and snowing, the home health aide couldn’t get to our house for three harrowing days. In short, his inability to stand made it immediately impossible for us to cope, and he was the first to say, “It’s time for a nursing home.”
This was not the life he wanted, and he told us to take him off his meds before being admitted to the nursing home, which we did. He was emotionally ready to die, but discovered that dying was not that easy. Even 100 percent unmedicated, Dad was very much alive, if unhappily so. It pissed him off. “Jesus,” he’d say to me when Mom was out of the room, “I keep dreaming that I’m dead, and then I wake up and, shit, I’m still alive.” I said to him, “Well, the only thing you still have control over is food. If you really want to go, I guess you could stop eating.” He thought about it and then said, “But I love eating.” So we brought him bags of Kit Kat bars, which we’d unwrap for him three at a time.
In the nursing home, it became clear that the medical establishment was at odds with us. We wanted Dad to have the peaceful death that he wanted. They were bent almost solely on keeping him alive at any cost. There was a single-minded zealousness that bordered on religiosity about it. For instance, Dad could only drink with a straw (he couldn’t hold a cup anymore), but sometimes it would make him cough, so the nurses took away his straws and he had to rely on people holding a cup up to his lips so he could drink. Before they’d let the poor man have a straw again, we had to sign legal documents absolving the nursing home from culpability should he choke to death while drinking through a straw.
To give you an idea of my parents’ pragmatism through all of this, I sat with Mom and Dad at lunchtime once and Dad began to cough. It was bad. He was choking. Mom put her hand on my arm and said to me quietly, “Just act natural.” So we sat with him until the coughing resolved itself. When Dad could talk again he said, “Dammit, I couldn’t quite pull it off.” He’d been hoping that the coughing would kill him.
He couldn’t read, couldn’t stand, couldn’t hear well. Strangers cleaned him, fed him, hauled him out of bed with a Hoyer lift and wiped his ass. He hated his life. He got a bedsore on one of his heels. It looked bad, be wasn’t in pain because of peripheral neuropathy in that leg. The nursing home staff wanted to treat it with antibiotics. They pushed hard. Dad was furious. “What for?”
He asked me, “Could the sore on my foot maybe kill me?” I looked it up and asked around. “Sure,” I said. “I think if it gets bad enough, it could give you sepsis. I think you could die of that.” He was glad and told them “No antibiotics.” They elevated his foot and gave the wound lots of fresh air, and to Dad’s dismay, it healed itself. “Bodies are more resilient than I ever imagined,” he sighed.
Eventually Dad died unremarkably, eight months after entering the nursing home. Mom had just had lunch with him. When she got home the nurse called and told her to come back, that he had lain down for a nap, and was now dying. By the time Mom got there, 10 minutes later, he was dead.
We were relieved when Dad died. He was miserable. He was ready. He was 86.
Every illness begins as a mystery, a scattering of seemingly unrelated symptoms that have not yet coalesced into something nameable. Every illness narrative, then, has a pre-diagnosis phase, which is only understood in retrospect, after the patient has learned the name of their disease.
For those of us who are well, or who have not yet had family members fall ill, we may feel that talk of death and illness is maudlin. But may I remind us that we are all in the pre-diagnosis phase of something. Every one of us probably has symptoms right now of whatever disease will eventually kill us, if we aren’t killed suddenly by falling a thousand feet into a crevasse. (On a side note, after witnessing my father’s slow death from his degenerative illness, I say, bring on the bottomless crevasses.)
One day, when we’re dying of whatever will do us in, we may look back on some small quiet moment from a long time ago and say, “That is where this all began, when I stopped being able to calculate the Scrabble scores.” Not to be depressing, but our deaths (like entropy) are set in motion the moment we’re born.
Like my grandmother's, my father’s ashes were sent parcel post to the family tomb in New Orleans. We went last year toting a bottle of gin, stood at the family tomb full of people we loved, poured gin on the marble steps for the thirsty ancestors, and passed the bottle around amongst ourselves until it was gone.
As a culture we are freaked out by death, keeping it at an enormous remove, pretending it isn’t hovering out there waiting. Our language is filled with euphemisms about “passing” and “better places,” like we’re a cult of life-at-any-cost that values, sadly, life over humanity. I find that death can be a great and useful thing. If you’ve ever spent time with a person who is dying, you’ll see how profound yet normal it is, how instructive for the living, how intimate it can be to simply bear witness for a person who’s dying.
When it’s my turn, I certainly don’t want some strident health care worker stealing my straws and making perky decisions about the end of my life. Beginnings and endings, alpha and omega, these things are dependent on one another. Beginnings do not exist without endings, and what follows every ending but another beginning? Cultural pressure aside, as a fiction writer, I’ve always felt that endings can be the best part of a story, and the hardest thing to write well.