THIS IS US
What It Feels Like To Be Dying
Dealing with the uncertainty of death
I have been going to the same masseuse for a couple of years now. When I began going to her my body was fit and strong, not a bad specimen for a woman of my age. Now, certain muscles throughout my body have begun to shrivel and atrophy; I have lost a lot of weight; a feeding tube has been placed in my belly and a port has been placed in my chest (two new orifices!). My masseuse has witnessed the changes wrought by ALS more closely than anyone else, with the exception of my husband, and throughout she has been accepting and straightforward. I don’t feel the least bit of embarrassment in her presence, and we have found a way to communicate despite my speech limitations. We talk about her travel plans and her hope of building her massage practice into a full-service spa; we talk about my writing. We’ve found a way to behave as if life is continuing as normal.
When I left her office a couple of weeks ago, she handed me a book she wanted me to read, Journey of Souls: Case Studies of Life Between Lives. I was touched by this offering. Written by a psychologist, the book is about the experiences of people who have died and returned to life. It also talks about experiences between reincarnations. I am not sure I believe in reincarnation, but I’m interested to hear what people have to say about it, and also learning about what the experience of dying and retuning to life is like. We will discuss the book at our next session.
The experience of receiving this book about death and dying, came at the same time I heard from a friend that my name had come up in conversation and someone quickly said, “Oh, she’s dying.” My friend was somewhat dismayed by this and so was I. I suppose I am dying, but not right now, this instant!
But the book and that comment got me to realizing that, to many people, this is the salient thing about me these days: I am a person on the cusp of death. I see it in their widening eyes as they approach me, unsure what to say.
There was day in late August when my husband and I were camping, and in the middle of the night I woke up freezing. No matter how many blankets and sleeping bags I piled on, I couldn’t get warm. My teeth chattered; my body was stiff. A kind of panic set in and I had the feeling that maybe I was dying. I could feel my body, underweight and dehydrated, putting up a fight, and I wondered, for the first time in my life, if I would win. We came home and I quickly recovered, but the incident put me on notice to take extra care to get enough food and water and rest. It told me I shouldn’t take the risks with my body that I am so accustomed to taking.
That incident notwithstanding, the reality is I have not crossed a Rubicon. My days are much as they have always been, beginning with writing for several hours, prepping for the publication of next year’s two new novels, trying to think about supporting the book that just came out, along with socializing, making holiday plans, keeping up with the news. There are certainly some new elements in my days — trips to doctors, time spent making sure I’m well-nourished, doing exercises to heal my tweaked back, seeking solutions for some minor ALS-related discomforts — but I am not lying around in pain gasping for breath and waiting for death to take me.
Okay, perhaps I think about death a little more frequently than I used to, mostly wondering when and how I will die. I know the odds are I’ll die of a breathing problem as many (most?) ALS patients do, or possibly I will elect to end my life through Death with Dignity. And I’ll also confess to a recent brief obsession with the thought that I might be reincarnated as a rat. As I said, I don’t even know if I believe in reincarnation, but what if it really exists, and I return to Earth as a rat scuttling around in dumps or subway tunnels, trying to avoid poison and exterminators? The thought is a grim one, and it made me realize that after I die I would rather stay dead. That is the one silver lining of death, isn’t it? You’re done. You have no more responsibility for anything. There is no need to think of survival, the struggle is over. That thought brings me such peace of mind, the idea that life is finite and at the end there is rest. If there are souls out there to be encountered after death, I’d be happy about that too. It would be nice to see my parents again, even disembodied, along with a couple of dear friends who died prematurely. But I dearly hope I do not have to be reincarnated, as a rat or anything else. When I’m done, I want to be done.
It seems obvious, I guess, that my rat obsession emerged from the difficulty of dealing with the uncertainty of death. I have blabbed so much to my students over the years about the imperative of learning to live with uncertainty — quoting Keats about negative capability — that you would think I might have conquered the problem myself. But my rat fear has outed me. I have as much difficulty with uncertainty as everyone else.
The rat obsession emerges from something else as well, the inclination I’ve developed over my years as a writer to play out What If? scenarios until I have a story. What if a family member commits murder? (His Mother’s Son) What if you could change the weather? (Weather Woman) My What If? habit of mind has continued in my current situation, its focus somewhat shifted. What if I die unexpectedly next week? What if I live for 20 more years, outstaying my welcome? What if I’m cremated — as I have asked to be — and it turns out I can feel the burning? And then there are the idle non-What If? questions that arise about the future lives of my dear ones. Will my son marry and have children? Will my husband remarry? Will my sisters and nieces enjoy wearing my jewelry and clothing? What will my memorial service be like? And so many questions about the world too: Will any progress be made on climate change? Will Trump get re-elected? Will the country become a flat-out autocracy? These questions don’t have clear-cut answers, but posing them is a way of dealing with the harsh reality that life will go on without me, and I won’t have any input as to what happens — an extreme feeling of FOMO. (Maybe one of my books will be made into a move and I’ll never see it!)
But all of this speculation and playing out of scenarios is merely entertaining, not preoccupying. Since I’ve put aside the repulsive thought of coming back as a rat, my life has resumed its normal rhythms. There’s a little more gallows humor at large in our household, a little more experimentation with ways to make food that I can swallow, a little more investigation into strategies to circumvent muscle weakness — I’ve recently been using gaffers tape to keep my mouth closed at night, thereby preventing the ventilator from blowing it dry as a summer creek bed — but otherwise I’m leading the same humdrum and occasionally eventful life I’ve always led, cleaving to a regular routine of reading and writing and walking and seeing friends.
So when you ask me what it’s like to be dying, I can only say it’s pretty much like living.
