Just get up now, I coax myself. Call Verizon from the bed. Straighten out that bill. I try to hoist my body up from the dining room chair. My movements slow, but soon, I am up.
Check? Yes. Bill? It’s in the walker. And so I begin. I start moving down the hall, strategically (or carefully) avoiding the chair in the middle of the room. With my head down, gazing at the floor, I fumble for the light switch. God give me patience – I’ve knocked down the bill. Fluttered to the floor. Use the grabber. Got it. Now prop up the pillow, swing onto the bed, clumsy, practically flat on my back. But here I am, feels good. And here’s the bill, now just the phone. I swear I put it in this same walker pocket. Under this pillow? No. Did I leave it on the dining room table? I bet.
Tedious five-minute walk back to the dining room. With my head down, it’s hard to see the table from a distance, but close in, I spot the purple rectangle. Phone. Relieved it’s there. Now back to the bed. Finally settled. Feels like a great big luxury to be sitting in the right place, legs stretched out, ready to call Verizon to ask about the bill.
*
I’m 79, so it’s no surprise that I get around with difficulty. For that matter, I should be used to a body that doesn’t cooperate. Over the past 25 years, I’ve faced a number of health problems – three bouts of lymphoma, an infection of a rod in my back to correct scoliosis that had to be removed, followed by two years of heavy antibiotics to fight the infection. Plastic surgery because I was mugged in the park.
Still, one redeeming feature of all those medical experiences: when the crisis was over, it pretty much felt like it was over. With – cross fingers – my lymphoma in remission and infection conquered, with plastic surgery done. Each time, I managed to move on.
My newer health problems are different: they’re not going to abate and they hijack my life. About four years ago, my mild dropped-head syndrome worsened dramatically. Simultaneously, my legs were no longer behaving themselves – they were tremulous and slow. Thank goodness, no acute pain. Plus so far I can hold my head upright when I sit.
There’s no simple explanation for my mobility problems. The doctors’ best guess was that some of the medical experiences that I’d thought I’d left behind – like radiation that can sneak up with after-effects decades later – had reappeared, with a mishmash of problems compromising my ability to walk.
These days I move inside only with a walker. Outside Charlie, my 82-year-old husband, pushes me in a small transporter wheelchair. (We’ve thought of an electric wheelchair, but there are drawbacks, including the hassle of transporting a heavy electric wheelchair in a car.) As Charlie and I both say, I’m much more dependent on him than either of us likes. He does all the food shopping, cooking and meal cleanup, driving and car maintenance, errands, plus wheeling me to medical appointments, haircuts, excursions, you name it. He is a rock.
After the diagnoses told me there’s no real cure for my limitations, the task I faced is familiar to anyone with health problems that significantly intrude on daily life: I had to find new ways. New ways of organizing my routines and adjusting my emotional temperature.
What I Changed and Why
In Charge
I’m clumsy, I’m a slowpoke, simple things are so damn hard. As my usual walking around my apartment slowed to a shuffle, negative feelings shuffled along with me. I knew that even the slowpoke walking was good for my body. But it was definitely not good for my psyche to get gloomy and frustrated by the need to constantly chase my stuff from room to room and corner to corner. So I tried to take back control.
One kind of control was making sure things were near at hand: when I first used a walker, my spirits sank at bedtime when I needed to carry my laundry from my chair to the hamper – less than six feet, but not in the direction that I needed to go for anything else. After weeks of unhappy trips, I had an idea – put the mini-laundry bags that came with our suitcases in a bureau drawer that was already on my bedtime route and fill the bags with the laundry that fit. Much better.
Bureau drawers turned out to be important in another way. Next to my bed sat a pretty Victorian oak chest with a top drawer that stuck badly. I’d been oblivious to the sticking; I seldom pried the drawer open, because I’d filled it with outmoded jewelry, old eyeglasses, and other things I should have given away. Meanwhile, with my walking compromised, I wanted a lot of important stuff next to my bed. The bureau top was crammed with hand cream, pen and paper, exercise stretchies, pills, nightlights, and books. Things regularly toppled to the floor. It was a hassle to yank the top drawer open and use it for the overflow.
Then I made a mundane but significant change – switching bureaus. Now with a satisfying feature of modern design, the capacious top drawer of the chest by my bed opens and closes with a flick of my wrist. People say that eventually you take improvements for granted, but four years into the innovation, the drawer gives me a little jolt of happiness every time I use it to store and retrieve stuff. I’m a fraction more in control and considerably less frustrated.
There are new routines for our occasional short trips. Even in the accessible hotel rooms we’re careful to book, a heavy door to the room can swing shut as Charlie tries to maneuver the wheelchair inside. When that’s happened, we always suggest to people at the front desk that accessible rooms come equipped with doorstops. More than once, we get a thumbs up. “What a good idea!” But more than once, when we’ve returned to that hotel, no doorstop. So now we’ve learned to bring our own.
Changing routines was one of the basics. Other experiences, the ones that lived closer to my feelings, were more complicated.
How They See Me, How I See Them
Like many health problems, mine are visible, meaning that people can react to me in ways that I’m not used to. I’ve been taking a look at how I choose to process those reactions.
I got mad when a guy who walked past us as I was being wheeled around a nature reserve asked Charlie, “How old is she?” Like I couldn’t speak for myself!
I got much angrier when a neurologist said to me in a musing-to-himself kind of way, “I bet when you used to see someone walking with their head bent way over, you never thought that would happen to you.” Did this doctor really think I wanted to join him in his wry reflection on my odd appearance?
But when a neighbor said to me, “I finally used a wheelchair in the airport and it was great. I’d never wanted to do that – it seemed so embarrassing,” I actually didn’t get very mad. I did turn the remark into an anecdote, telling friends that they were about to hear an example of clueless things that people sometimes say to other people with disabilities. To underscore my point, I would end the story with, “And there she was, standing right in front of me as I was sitting in a wheelchair!” I could have been outraged, but mostly, I laughed.
A stranger walks past my wheelchair and gives me a cheery hello or says, “Have a blessed day.” In reacting to the greeting, I could focus on how people are extra nice because they feel sorry for me. But I don’t, and return the greeting.
I understand and honor the attitude of people with disabilities who hate being pitied and fiercely value self-reliance. One example of this mindset comes from a recent New York Times book review written by Michael J. Fox, whose courageous struggles with Parkinson’s Disease have been an inspiration to many people, including me. In reviewing a memoir by Jan Grue, a writer who has spinal muscular atrophy, Fox points to a passage in the memoir that resonates with Fox’s own life:
Grue shares his humiliating experience traveling in an airport wheelchair. “How bizarre it was to be handled like a piece of freight,” he writes … I, too, have written about wheelchair trips across airport and hotel lobbies as “being treated like luggage,” mute and marginalized: “No one listens to luggage.”
“From the point of view of the occupant of the [wheel]chair,” Fox says elsewhere, in an interview he gave to Yahoo/Entertainment, “it’s a world of asses and elbows.”
This insistence that you don’t become objectified, a passive recipient of sympathy — I get it. But when I think about how I’ve adapted to wheelchair life, I find I’m somewhat different from these guys.
To start, though I’m in a wheelchair almost daily, I never thought about seeing just asses and elbows until I heard about them from Michael J. Fox. And I suspect I’m less pained by have a blessed day than Fox or Grue would be. My attitude: Yes, many strangers are extra friendly because they feel sorry for me. But I mostly enjoy the vibes, don’t focus on why I’m getting them.
New York City would be better, I think, if more strangers greeted one another. As for the airports, I figure most travelers, wheelchair-bound or upright, don’t get treated so kindly. Mainly I’m happy that the airport has wheelchairs and people available to push them.
Why this temperamental difference between me and people like Fox and Grue? Maybe it’s because my disability hasn’t been a lifelong, or near lifelong, condition. It also could be that men, more often than women, react badly to being patronized.
Whatever the reasons, when l reflect on what I do emotionally to adapt to my new limitations, I sometimes think about how one particular man, my father Abe, coped with a disability. A few years before he met my mother, Abe was a twenty-something working on the floor of a chemical plant. A machine malfunctioned, and in some way that was never fully disclosed to his kids, he was too impulsive in trying to fix the problem. The result was an accident that left him with only one arm.
Looking back on how Abe managed, I think the single best description is that he was matter-of-fact. He didn’t hide his problem and didn’t dwell on it. When he asked one of his kids to put on his watch for him or tie his shoes, it was a straightforward request. Meanwhile, with no fanfare, he drove, planted a garden, swam, bowled, and ice skated with his kids. Though I was familiar with the concept of disability, I hardly ever thought of Abe as falling into that category. He was just missing one arm, and that was that.
What about my father’s attitude toward the problem that concerns Fox and Grue – being patronized? I honestly don’t think it was a big deal for him. I would say that he generally functioned in his life with some share of macho pride – not a huge amount, but not zero. Still, I can’t remember any discussions about him being a man who was unjustly pitied or overlooked because he was an amputee.
There’s no neat correlation between my father’s struggles and mine. For one thing, mine, coming late in life, are far less momentous than his were. But somewhere in the background his attitudes play a role in how I now behave and think.
Take physical appearance. Abe did insist that my family go to the very end of the beach when he removed his prothesis to swim, but I don’t remember much embarrassment about how he looked with a prothesis where an arm would be.
I’m glad to say that a little of his attitude seems to have rubbed off on me. I’ve always been as appearance-conscious as the next one. If, God forbid, I’m overdressed for an occasion, I can’t get past the feeling that I’ve made a dumb mistake. I like to wear lipstick because I think it brightens a complexion that can look sallow – and if I can’t find my lipstick tube in my purse when I rummage for it, there’s a little shadow on my next half-hour.
So what about these days when I clump slowly into a room, chin on my chest, my back nearly at a right angle to my body, collapse into a chair, and prop my head up with my fingers to start talking to someone? I actually find that I’m not particularly self-conscious about how that looks. Granted, I’m not a kid with a disability, who’s at risk of mockery or even expressions of disgust from peers. Discounting a very few people like that one doctor who mused on how weird I must look to others, most people who see me walk into the room are polite and almost always, I think they’re seeing more of me than my bent head.
Still I surprise myself. Why not more self-consciousness? Charlie has helped immeasurably. He makes dozens of comments, ranging from silly to sincere, about how at 79, I’m pretty, cute, nice looking. My role is to laugh and scoff at the comments. But no question, they boost my spirits.
It also could be that when I make my entrance, I’m not suffused with that close cousin of self-consciousness – self-blame. When my curly hair gets unruly and pieces stick out at odd angles (my John Quincy Adams look), that’s an oversight I could have fixed – better haircuts, maybe. But my contorted posture when I walk into a room: No way is that my fault.
Taking the Milk
Somewhere I heard that when FDR was asked about what it felt like to use a wheelchair, he said, “If you want orange juice and someone brings you milk, take the milk.”
This advice rings a bell for me. I dislike the word foodie, but I admit that I’m food-focused. Before breakfast, I routinely think about what I’ll be eating for the day. I’m fussy: if strawberries are in season at the farmer’s market, I absolutely want those strawberries, not the Driscoll ones from Foodtown. I not only crave coffee ice cream, I want the brand that tastes like espresso. Certainly if you care about food as much as I do, it’s not ideal to be unable to cook and shop on your own. Still when it comes to good food, I’m hardly deprived. Within reason, Charlie is very willing to shop to my tastes; our neighborhood features delicious food, and under my supervision, Charlie cooks good meals. Yes. there are times when I get too demanding about my grocery requests and have to dial them down. But agreeing on what food to buy, cook, and eat hasn’t been one of the adaptations that have caused us the most trouble.
Yet, that’s not the whole story. Because I bet that FDR or whoever made the take the milk comment knew that the advice encompasses more than food. No big leap to see accepting the milk as a metaphor for a perpetual challenge: plain old make the best of things. I’ve never been a star at doing this. Intellectually I acknowledge that make the best of things is sound advice, but it often feels like a bromide.
I’m so disappointed. If only. These phrases slither into my thoughts, and I’ve spent a lifetime trying to keep them under control. I’ve had some solid success, but believe me, being mostly unable to walk offers you lots of scenarios where regret can play a leading role.
I’ll spare you – and myself – a catalogue of my wheelchair-related regrets and let one example stand for the rest: Years ago, when I was still mobile, Charlie and I were eating in an upstate New York diner before a visit to Inisfree Garden. An old favorite of ours, Inisfree is a wonderful 150-acre stroll garden inspired by Chinese landscape design. At the diner we ran into a neighbor who was traveling with a disabled grandchild. We told her about Inisfree. “Sound lovely,” she said. “Do you know if it’s wheelchair-accessible?” We didn’t, and afterwards I thought about how it must be tough to need to vet anyplace you want to visit for whether a wheelchair would work there. Today, I’m someone who’s made scores of these inquiries. Often the news is bad. Inisfree? No way to navigate the terrain in a wheelchair. So we’re not going to see it again.
Some of my regrets are bigger than this one, some smaller. But no matter the scale of the disappointment, it’s important that I consign as much of it as possible to a place where it doesn’t take over my life.
One thing I’ve learned: Focusing on how things could be worse doesn’t do much for me. I’m not in a war-torn country, I tell myself. I’m not a low-income working mother frantically trying to find child care for a sick toddler. I’d be a fool not to be reminded of my advantages by these examples, and a gazillion more, of adversity and suffering in a world where I’ve had way more than my share of luck. Moreover, when I give money or take actions to try to alleviate adversity and suffering, even by a fraction of a fraction, that’s positive.
But in the absence of good deeds, focusing on war-torn countries or struggling mothers as a way to remind myself that things could be worse – ironically those ruminations seem to make it worse. As I contemplate the suffering, my mind fills with dark thoughts, common among almost everyone I know these days, about the state of the big world. True, these reflections do get me to ease up on comparisons to people whose lives are more, not less, restricted than mine. But the pause is perfunctory – soon enough my if-only, why-me? thinking pops up as if it had never left.
So when I need to take the milk, is there any strategy that in fact gets me to do that with good grace? Though it’s neither novel nor surprising, I do have one useful approach: I try to enjoy myself. If in fact I can eat strawberries from the farmer’s market, not the supermarket, at a breakfast where Charlie and I talk for a long time over coffee, I take big-time pleasure in that. Same thing when I have a new book to read, when I get to be wheeled through the park on a walk with my daughter and family. The trick is to let that contentment rule.
On a beautiful fall day and rain forecast for the rest of the week, there wasn’t time for Charlie to wheel me to the Brooklyn Botanic Garden, he had too many errands. He takes me to the Garden on many fine days, but I was in my regret mode. If only I were as able-bodied as lots of my age mates. No, if only I were just me as I was in 10 years ago. I could have shared the errands, then walked to the Garden with Charlie or alone.
Now, the plan was for Charlie to leave me in my wheelchair to get some sun and air on our main commercial street while he shopped. Parked near Foodtown, I faced a row of humdrum storefronts across the broad avenue. Some, especially the three tall look-alike buildings nearest to the corner, were pleasant looking, though not in the league of many charming brownstones on the neighborhood’s side streets. Too bright to see my phone, so I kept staring at the buildings, trying a little deep breathing.
Eventually, with little choice of what to look at, I took my gaze upward to the cornices on the three buildings. I’d certainly passed the buildings hundreds of times, but just as certainly I’d never noticed the cornices. All three of them had mild ornamentation – a garland- design at their midpoints – and all were painted green. But three different shades of green – my rough guess is sage, pine, and forest green – which, instead of clashing, quietly and beautifully harmonized, maybe because the colors were subtle, not glaring. Framed against a sturdy autumn blue sky, the cornices basked in the sun and looked lovely.
I wasn’t restless. Even when Charlie came out of Foodtown and started putting shopping bags on the wheelchair handles, I continued to look up. “Well, when it comes to having a good day, I thought, “maybe this is enough.”
Granted, I knew chances were low that I would feel this contented in the hours, let alone days, to come. Willy nilly, my elderly life in a wheelchair is heavily oriented to the slog and tedium of reaching for the make do attitude that often eludes me. Still, I may be turning a corner. I’m finally understanding –not just in my head, but in my feelings — that make the best of things is more than a cheery slogan. By prodding me to problem solve, the practice of making do has helped me fight negativity and passivity in old age. Not easy, but a practice that helps me stay in the flow of living my life.
Citations:
Grue. I Live a Life Like Yours: A Memoir, FSG, 2021. Quoted in Michael J. Fox, “Michael J. Fox Reviews a Thoughtful Memoir of Living with Disability,” New York Times Book Review: August 15, 2021.
Ben Arnold. “Michael J. Fox on the ‘frustrating and isolating’ experience of being in a Wheelchair,” November 17, 2020.
