Notes from 206
By Susan LHeureux
May 15, 2018
So it has come to this, two rooms with a view. A world within a world taking on a life of its own.
I lie in bed in the late afternoon. The ideas for this piece tumble through my mind, wash through my consciousness, slip down the stream of my thoughts, emerge fleetingly whole and complete, only to disperse in jagged pieces. Repeatedly I try to piece them together into something coherent.
But they resist and remain an elusive list.
The diagnosis, my complete and irreversible dependence upon others, the skilled, compassionate help of those who care for me, the busyness of my days, the falling away of loved activities, the gift of growing closeness in our family, the challenge of staying engaged with friends and their faithfulness to me, the staying in the moment.
First, the diagnosis.
Conrad and Suzie and I are crammed into a small office in the ALS clinic because my neurologist suspects I may have this disease. Enter the consulting neurologist, a tall awkward woman too large for the space, weathered, freckled complexion, in a white coat and projecting a kind of a nerdy authority. Smiling large, she gets right down to business, no small talk, no gentle lead in, simply barrels in, pulls out a sheet of paper, points to a figure indistinctly drawn on it and gestures to a line along the side of the figure from somewhere near the neck downwards towards the feet.
We try to follow what she is saying, but only hear ALS and all her words about upper motor neuron disease and lower motor neuron disease and the distinctions and so on and so forth wash over us and puddle at our feet.
“Are you absolutely sure of this diagnosis, Doctor?“ I ask.
“Absolutely certain,” she responds.
She summarizes briskly, then smiling again she explains that I have a lower motor neuron disease, a variant of ALS which causes progressive muscular atrophy. I can expect a further deterioration of my arms and hands so that like my legs I will be unable to move them. It is likely that my breathing will become increasingly difficult. Most ALS patients die peacefully in their sleep due to their inability to breathe. I might live one more year, possibly two. It’s important that I prepare for this.
Dark humor, my escape, I say, “Well, that’s a relief, I’d been afraid I would run out of money if I lasted too many years like this.” Soberly she comments she has never had a patient run out of money. I turned towards my daughter and husband and roll my eyes.
When the doctor leaves, we hold each other and cry, Conrad and Suzie and I. We are no worse off than we were before we heard her words, though it feels like we are. We had been living with the ongoing deterioration of my muscles and of my ability to do things for myself for the past two years. We had been doing nothing but adapting to changes.
Through all this, I have been singularly blessed! Conrad, my children David and Suzie, my friends, and my caregivers, Tina and Roberta have been a compassionate, loving and an unfailing support to me. The only thing that changed was that now we had a name for what had been happening and confirmation of what we had suspected all along — it wasn’t getting better.
I remember wondering soon after I retired, after forty-two years of teaching, how I had ever found the time to go to work. Now I feel the same way. How did I ever have time to do anything but be a patient? Unable to do nearly everything without help, I find myself inordinately busy. I live in a hospital like environment. Those of you who have ever stayed in the hospital for even a few days know what that’s like — unchanging routine and people coming and going all day and night long.
I begin each day stretched out on my bed, immobile after sleeping eight or nine hours, AirPods in my ears, a cell phone on my chest, the table next to me is littered with nose and eye drops, tissues, face cream, hand sanitizer, AirPod charger, and scissors.
Conrad, sleep deprived from helping me in the middle of the night, pokes his head in to see if I am awake. Travel John in hand, he starts my day the way we all do. Then he tilts the blinds to the right angle, which allows the sun to filter into the room without blinding me, and reveals the trees and grass and sky which make me feel like moving. I raise myself with my adjustable bed and begin to stretch my muscles. Unmoved for so many hours, they protest, and sigh, while my joints crack in relief. He brings pills, places my feet in braces, washes my face, brushes my hair, sets up the cough assist in case I need it first thing and fixes my breakfast.
My dearest Conrad so completely with me in this. Two or three days a week either Suzie or my friend, Karen come to help with these early morning tasks. Apart from that, he’s on his own from 6 pm to 10 am every day until Tina and Roberta, my caregivers, arrive.
I chit chat with them a bit at first, but mostly they are preoccupied with whether I’m ready for my midmorning snack or have I taken my mid morning pills, have I used the cough assist yet, did I use the ventilator last night and does the humidifier need cleaning, would I like to take a bed bath this morning, have I taken my eyedrops and nose drops, do I need to pee, and am I ready to transfer to the Hoyer and into the wheelchair?
By 11:30 most days, I am in the living room for about two and a half hours where I can spend some time doing research into the new equipment I need, the medications newly prescribed, or I have an appointment scheduled with a physical therapist, a nurse, a clinic at UCSF, my respiratory therapist, my dermatologist or my primary physician. Once in a while, in this time frame I am able to talk or visit with a friend, do some writing, or play scrabble.
After this, there is the transfer back to my bed for a repeat of most of the morning activities and medications and a nap. Around five I am transferred back to the living room for dinner, the evening with Conrad, the news, Jeopardy and whatever else we feel like doing until around 8:30 or 9 when he Hoyers me back to bed.
Needless to say, all of these activities keep me occupied for most of the day and evening.
It’s difficult to tell friends who call and want to come and see me when we can get time together. In addition to the regular schedule, I have to take into account that some days I am weaker than others and don’t have the energy for talking no matter how much I would like to see the person who is trying to arrange a visit. And there is always the question of what we will do? Some days I feel like I have nothing to talk about. I no longer want to go out to eat since I can barely lift a fork to my mouth. And with several friends, I used to go for long hikes in the hills — no longer an option. Going to the Berkeley Rep or Cal performances and having dinner before seem too much. I can’t get my wheelchair up the stairs and into the homes of most of my fellow writers in my writing group.
My friends have been amazing. Rita and I text nearly every day keeping in touch with all things big and small. Karen B. arrives every Tuesday and Thursday to help with getting my day started and to give Conrad a break from the daily routine. Francine calls several times a week to check up on me and keeps me laughing with her quirky sense of humor with at least one email and sometimes more a day. My writing class arranges to have our final meeting here each term.
In my past life, I was regularly on my own, deciding where I would go and when and how I would spend my time. I chose whether I wanted company or not. Now I am never alone. Tina and Roberta are the people I see most, my new close friends. These two women have been with me off and on since the beginning in 2016. Initially they worked for several hours four days a week. As my needs grew, their jobs expanded. Now they share the task of caring for me, for Conrad and our home eight hours a day each week. As my muscular atrophy has progressed, they have adapted willingly and cheerfully to the new challenges of my growing dependence, different equipment, medications, and new tasks. We share so much in this two room world.
I don’t go anywhere by myself. Someone is always with me – a support person, a friend, or a family member. There is always the danger of choking, the issue of toileting, the problem of getting on the elevator, of opening the door to the garage, the danger of getting stuck in the path of the closing garage gate.
Once in while, I ask Conrad or my caregiver to help me get downstairs and outside and I take off in my wheelchair for a short while just to feel what it’s like to go somewhere alone. They don’t like this. But Oakland has recently paved Broadway Terrace right outside my door and drawn a wide bike path that goes all the way up to the Terrace Café. How can I resist? The feeling of taking off, the current of air across my face and through my hair, the delicious sense of adventure as I maneuver the crosswalks, the intersections, and the brief, illicit forays I take along the golf course paved paths. Heady stuff!
There are many gifts in the middle of what I consider to be my premature aging. One is the growing closeness in our family. Suzie is determined to figure out ways we can be together more often and in modes that I can enjoy. We take strolls along the Emeryville Marina or walk around Lake Temescal, share dinners in the common house at her housing community since I can no longer get up the stairs and into her home. All this is done with the kids, Lila now nine years old and Miles suddenly 13. Sweet David comes up from LA at least once a month to spend several days with us.
All my life the two things I’ve been needing to learn are letting go of control and staying in the moment. It’s clear that letting go of control has been forced upon me and I can only resist or accept. On the other hand, staying in the moment is a daily practice done some days literally from moment to moment. I do not regret my past. I do not look forward to the future. Almost always there is something good going on in the moment. My life depends on seeing it and enjoying it.
