When Independence Slips Away
I understood it would happen eventually. Now, ‘eventually’ has arrived.
I recently returned from a writing residency on the high desert of central Oregon, a magical place couched between a ridge of low mountains and a dry — in the summer — lake bed. The buildings are situated near a pond with shade trees where all variety of birds visit in droves. Sunlight travels through the arid air like a wand, changing the landscape’s shapes and colors minute to minute. Writers and artists are invariably inspired by the place, and I have gone there on my own four or five times in the past and done some of my best work. This time I went with my husband, and we stayed together in a spacious one-room cabin equipped with kitchen and bathroom. I wasn’t sure if sharing the space would be optimal for writing, but we carved out corners of privacy for ourselves and both wrote a lot.
What I didn’t realize before we went was how this trip would be a kind of turning point. While there for only four days, I realized the startling truth that I am no longer able to live on my own.
Let me clarify. I can still drive. I can still walk, albeit unsteadily, often with the aid of walking sticks. I can still climb stairs and shower and dress myself. But the little things I can’t do — none of them monumental by themselves — have accumulated and crept up, and as we drove away, I realized it was unlikely I’d be able to return on my own.
What are these deficits? I can no longer lift and carry certain things: a suitcase, my computer, a saucepan, the ventilator I use at night. Things slip out of my grip easily. My husband handed me his water bottle to take to the car, and I had to say, No, too heavy. There’s the matter of opening things. Twist-off caps are usually impossible, peeling off cellophane wrappers too, as well as prying open certain Tupperware containers. Zippers and buttons sometimes elude me. It can be comical, my husband assisting me as if I’m a child. I have ceded the cooking to him and, while I might scramble myself some eggs, it would be a slow process. I rarely open the refrigerator these days. And, when I eat I sometimes choke and need a “cough assist” machine to clear my windpipe. In the midst of a choking episode I need someone to bring me that machine.
Then there is the matter of communication. With no internet at the residency and no texting, and me without a voice, being alone might pose a problem were I to take a serious fall or choke. I am trying to be clear-eyed about these things; still, it’s a shock to realize that I can’t just hop in the car and go anywhere for a few nights — or longer — whenever I want. It’s clear my days of total independence have come to an end. Even at home it would not be safe to have no access to assistance.
And yet, I shouldn’t be shocked, as this reality has been hovering at the back of my consciousness for weeks, and when I was diagnosed with ALS a year and a half ago, I understood it would happen eventually. Now, “eventually” has arrived.
Since I was a young child, I have cherished my independence. A story my parents told repeatedly was about me at age three going to nursery school. The school was located in a private home in the woods at the end of a quarter-mile dirt driveway. I want to go by myself, I told my mother as she turned into the driveway so, being the permissive mother she was, she let me out. I toddled down the driveway and into the trees alone. I remember this, I’m sure, because it was told so often, but that independent streak took root and strengthened. I have made it my business to be intrepid enough to survive alone.
In previous blog posts I have been somewhat cavalier about my weakening body, claiming to be accepting of my fate. I have not been speaking falsely, but maybe it has been easy to feel that way because the changes have been gradual enough that true debilitation seemed more theoretical than real.
Now that my most prized body parts are beginning to fail more discernibly — not only my left hand, but my right hand too — I feel pushed to think about my future anew; I know I need to find a way to accept more encompassing levels of debilitation and dependence. I don’t want to find myself frightened and depressed by not being able to write. (I am practicing eye-gaze technology, but to write a novel that way would, I can see now, be an exhausting Herculean feat). Such acceptance is, of course, not instantaneous.
It has comforted me to think of how my notion of going it alone as always been somewhat of a myth to begin with. Throughout my life many people — parents, sisters, friends, husbands, as well as teachers, an agent, a publicist, etc. — have helped me in various ways. I’ve always been part of some community and have never felt without resources. It has also been reassuring to think that independence of body and mind are not necessarily linked. While my body heads in the direction of greater dependence, my mind remains free to roam independently.
What would it mean for my identity to no longer be engaged in writing books and essays? Would I still be the self I am now were I to be reduced to writing only what I write on eye gaze? Time for bed. Change the music (station, podcast, book on tape), please.
I just received some copies of old home videos I’ve never seen before. I’ve been watching myself as the mother of a young toddler, the two of us rolling on the living room floor, splashing in a kiddie pool, finger painting on the patio. I was working in the film business at the time of those videos, writing and teaching, but what I see is a woman supremely happy with being a mother, truly enjoying her son. I had multiple identities then, more in some ways than I do now as a full-time writer. Abundant research shows that having multiple roles, which offers us agency in different spheres, is a clue to being happy.
I am still a mother, of course, and still happy being so, but I am not as engaged in mothering in a day-to-day way. I can see that it might behoove me to think more fluidly and expansively about my identity, about who I might become in the next year or so. Certain images are emerging. A person with a rich fantasy life who doesn’t always need to share my thoughts with the public. A woman with a keen appreciation for the work of other artists listening to poetry, fiction, and plays through various media. A woman who is ready to learn — from books, lectures, podcasts — more about science which has always fascinated me. A woman who receives her husband’s ministrations gracefully and gratefully, and enjoys hearing him discuss his own writing. A woman who is thrilled to watch her son, no longer the roly-poly toddler, but an entrepreneurial 30-year-old man who is building a life that suits him.
It’s gratifying to lay out these options for the first time because it helps me imagine the new person I might become. It makes me feel I can embrace becoming her. In doing so I hope to accept being not merely a lump of flesh with no agency or ability to write, but an observing, thinking, feeling, appreciative soul.