Listen to an audio version of this story
For more audio from The Walrus, subscribe to AMI-audio podcasts on iTunes.
“Judy and Steve met on the most gorgeous day of the summer.”
I have recited this sentence, or a longer variation of it, to my wife, Judy Wilson, thousands of times. Additional sentences always follow, and together, they form the longest-running love letter of our four decades together.
In December 2012, at age sixty-one, Judy received a diagnosis of early onset Alzheimer’s. The news was deeply distressing, igniting within me a burning anxiety over how I, a wheelchair user born with a spinal cord malformation and living with bunches of body parts that don’t work so well, could possibly help my able-bodied spouse as the disease robbed her of not just mental acuity but also physical strength. Thankfully, Judy was still relatively spry and lucid, and I thought it would be more productive to channel my energies into anticipating her future needs, starting with a new avenue of communication between us.
The following spring, at the National Magazine Awards ceremony, I was expected to make a speech as the recipient of the annual outstanding-achievement award. Even before I began to write the speech, I knew I wanted to include a short, simple passage that would serve as the opening for an evolving love letter I would recite to Judy every time we were alone together. I saw it as my best opportunity, through ample repetition, to reach into her heart at every stage of Alzheimer’s. As I gave the speech, Judy smiled and laughed. When I arrived at the passages about her, tears flowed. “We met by chance, on Cumberland Street in Toronto, on the most gorgeous day of the summer,” I said while looking directly at her. “I was immediately smitten, remain smitten, and will always be smitten no matter what twists and turns of life await us.”
That evening, after we returned home, after we drank some wine, after Judy fell asleep holding my hand, I lay with her, wide awake, marvelling once again, as I had done thousands of times before, at my good fortune in finding her. Now, I had to prepare for a future of losing her, bit by agonizing bit. Fortunately—or unfortunately, depending on your perspective—Judy and I, individually and together, already had a wealth of experience in living through difficult times. Still, on that night nearly a decade ago, and every day since, I have found myself, sometimes on the edge of panic, wondering: What will become of us? What will become of me without her?
Judy and I attended the same high school. She is three years older, and one of her close friends is the elder sister of buddies of mine, twins, who were my designated wheelchair pushers in grade nine. Though there were several other links between us, it still took us about twelve years to finally meet. If the fates had indeed been bringing us together, as Judy believed, they sure had been taking their time. Or maybe they had just been waiting for that most gorgeous day of the summer: a Saturday afternoon in late August 1979. I had spent much of that day at the Toronto Life offices, where I was a junior editor. The magazine was behind schedule, and several of us had agreed to work the weekend. However, I had to leave early: a friend’s wedding was coming up fast, and in mid-afternoon, I headed to the shops to buy a gift.
Back then, the right side of my body was strong, robust even, but I had little use of my left arm and hand. My left leg was weak, so I walked with an ungainly limp and lurch, always a bit unsteady, which is why I frequently used a wheelchair for longer distances, such as high school hallways, museums, and airports. I could also drive, which is how I travelled that day: in my zippy Honda Civic, with windows down and jazz blasting from the speakers. After finding a parking spot, I clambered out, and seconds later, I heard, Steve!
The call came from a woman I knew from high school. We chatted briefly, and then she said, I’m waiting for my friend, Judy Wilson. We’re going for coffee. Would you join us?
Within a few minutes, there she was, sashaying sprightly toward us. Even from afar, Judy emanated merriment and mirth, her face brimming with cheer and her smile as inviting as the day itself. She was stylishly dressed in a wide-brimmed straw hat, a flouncy white blouse, and a yellow floral-print skirt. Finally, we meet! she said, laughing.
We headed to a café about ten steepish steps below street level with one small patio table. Judy could see the effort it took me to carefully descend. I will get the drinks and bring them out, she said. She did more than that. She treated me to a cookie along with my Earl Grey tea and then deftly peeled off the top seal of my plastic milk pod and poured the contents into the tea. That little bit of unexpected help was more elegant than my usual one-armed method, which was to plunge a fork into the pod’s seal, trying to avoid spilling milk on myself (or anybody else), then turn the pod upside down, squeezing the milk out.
Judy told me she worked at the Toronto Star, where she had started as an airbrush artist. She spoke excitedly about her passion for creating art, dolls in particular, which she sold at a downtown gallery.
What struck me most about our first encounter is how much Judy and I talked about the importance of embracing joy wherever you found it—or it found you. We shared some of our most joyous experiences, and with each example, our smiles grew bigger.
When the time came to say goodbye, I nervously asked Judy if, one day soon, I could treat her to lunch.
I don’t do lunch, she responded, beaming.
Our courtship started at a Greek restaurant specializing in seafood. As at the café, Judy was witty and ebullient, though I did begin to wonder: Was there a sombre, less rosy side? The first indication came when Judy abruptly said, with a sigh, Of course, I know that life can be horrible. With that observation, she briefly stared off into space, deep in thought, evoking the poignancy Amedeo Modigliani frequently captured in the faces of his portrait subjects.
I became more intrigued. I am drawn to people who have struggled. It usually forces them to think deeper about life, which, often, makes them relate better to disability. What struggles did Judy have?
Great love stories begin with such heady promise and end with such grief—but, at least in my case, also with memories of immense joy.
Over dessert, she told me about her dad, who for years had been faltering from Alzheimer’s, and her mom’s commitment to caring for him at their home in Cobourg, Ontario.
I revealed that my mom was in decline as a result of an adulthood of dealing with the frequent, volatile bouts of anger and paranoia associated with her schizophrenia. She had been hospitalized for it and lived at that time in a rural group home.
I drove Judy home that night. She did not ask me in, but she did give me a tender, lingering kiss. We made another date and, elated, I drove back to my apartment. A few days later, with the mail, came a card from Judy, which simply read, in her elegant, distinctive handwriting: “To Joy! Thank you!”
We would go on to send dozens of cards to each other during our two years of dating. As the relationship deepened, we’d each study the visuals on a card received, searching for clues as to how the other was feeling about us. I knew, for instance, exactly when Judy started to see a future together after I received several cards adorned with stylized stars, a reference to a lyric from her favorite musical, West Side Story:
But here you are,
and what was just a world is a star.
Ever since our first encounter, Judy has continuously, unobtrusively assisted me, making my life much easier and giving me the opportunity to live larger than I had thought possible. It started small. At our early dinners, for instance, she was eager to cut up my meat entrees into bite-size pieces (almost impossible to do with one hand). On our first night together, she gleefully helped me off with my clothes and, the next morning, back on with them. Judy once said she tried hard to anticipate my needs so I didn’t have to ask for help.
Throughout our first seventeen years, we often playfully explained our relationship to others by saying that Judy was my left arm and leg while I was her wheels. I loved driving; she loved being driven. The car gave me greater independence and a continuing opportunity to transcend the limits of what my body could do.
We would, during those years, take dozens of motor trips throughout southern Ontario and upper New York state. Judy was our onboard DJ, and her musical tastes are wide-ranging—pop, jazz, classics, reggae—though, at heart, she is a ’60s rock ’n’ roll gal.
Judy is deceptively strong. I didn’t discover that until she started pushing my wheelchair over all kinds of terrain, which included propelling me up and down several San Francisco hills as well as through myriad parks, shops, and museums in New York, London, and other big cities. She would say her greatest push came on a drizzly evening in Manhattan. We had tickets for Cats, but no cab would pick us up at our hotel—they chose, instead, to ignore and speed by us (a frequent experience for wheelchair users). Frustrated and annoyed, she said, I’ve got this, and off we went, Judy in a favourite little black dress, green trench, and black leather heels, swooshing past throngs of soggy New Yorkers and tourists, tilting me and the wheelchair up and down dozens of curbs, arriving at our seats just as the overture began. Yes! she exclaimed, grinning, panting, and looking mightily pleased with herself.
A couple of years before that triumph, early in our courtship, a more tentative Judy asked if I was in constant pain. I’m not sure I could handle that, she quietly added. I assured her that pain was not an issue. She looked relieved, and it wasn’t long after this exchange, at a dinner date, when she gracefully, almost surreptitiously took hold of my paralyzed left hand, gently cupping my curled fingers with her hand and, seemingly, never letting go.
We were in the car, stressed and rushing cautiously, around four on a crisp November morning. Judy was in labour, focused on taking deep breaths. The hospital at which we were scheduled to have our baby had unexpectedly closed due to an outbreak of the Norwalk virus, nullifying all our carefully arranged plans for getting assistance on arrival. Instead, we headed to a hospital with which we were not familiar, the degree to which the staff would help us uncertain. This was the latest stage of a big journey into the unknown that began when Judy raised the idea of starting a family.
At first, the notion of having kids terrified me. As so often happens with disability, my early response was to focus on what I couldn’t do: properly hold a baby, change a baby, pick up a baby, dress a baby, bathe a baby. I worried about the possibility of our baby having a disability. I’m too aware of how that can often make everyday life frustratingly difficult, even traumatizing, particularly in childhood. I also worried about the extra physical work Judy would have to take on in the baby’s early years. Might it be too hard?
For weeks, we talked seriously about the barriers and possibilities associated with having a child. Judy assured me she’d be able to deal with the additional physical effort required, and she was certain I’d be an ideal parent for a disabled kid should that eventuality happen. You have so much of your own experience you could draw on, she concluded.
After arriving at the hospital, we successfully marshalled assistance and were quickly led to a delivery room where, following several more hours of labour, our baby daughter was born. We called her Hannah, a name the editor in me fancied, in part, because it is palindromic.
As Judy cradled the beautiful baby Hannah in her arms, I gazed intently at both of them, filled with relief that the delivery had gone smoothly and that the arms, legs, head, eyes, and more of our newborn daughter were gloriously active. All early indications showed that we had a happy, healthy baby in our lives. Still, I worried. Signs of my disability hadn’t shown until I was five. Indications of my mom’s schizophrenia hadn’t presented until her late teens. And I’d had a baby brother who lived for only three days.
These misfortunes did nothing to eclipse the excitement I was feeling, but they were much on my mind when the nurse brought baby Hannah over to me.
I looked deep into my new daughter’s squinting brown eyes.
Hi Hannah, I’m your dad. Then I made my first promise to her. If there is something wrong inside you, I whispered, I will do everything possible to help you through it.
And to help your mom too.
We had our share of sorrows early on. My mom died suddenly just two months into Judy’s and my relationship. We each lost our fathers years later. Then, following Hannah’s birth, there was a series of miscarriages, which haunted both of us, and I frequently found Judy staring off into space with that same Modigliani poignancy I’d seen on our first date and many times throughout our first decade.
I suggested to Judy that she might consider seeing a therapist. She was reluctant at first but came to embrace the process. She slowly bounced back, though not without struggle. Her grief was profound, but as it turned out, miscarriages weren’t the only trauma darkening her soul.
At the time, we had a Saturday ritual: a nanny would come to take care of Hannah while Judy and I would jump into the car, go for breakfast, do some shopping, maybe catch an early movie, and perhaps talk at length about how each of us was feeling. Back then, we frequently picked up Saturday breakfasts of large cappuccinos with warm gooey cheese croissants from a French bakery and then drove down to the shores of Lake Ontario to eat and chat.
One morning, after we finished our croissants, Judy, sounding calm but nervous, said, I have something I need to tell you.
We held hands and she told me a dark secret she never thought she’d reveal. Many years earlier, she had been sexually abused. She told me who had done it, over what time period, and what she intended to do about it now, which was to try to help me understand why it had taken so long to inform me and why she wanted no part of confronting her abuser.
Judy also explained that she and her therapist had talked about my possible reactions. In fact, they had role-played through several scenarios, including: What if I responded with intense anger and wanted to end the marriage?
As Judy spoke, my mind immediately went back to our first date, to that Modigliani look, when I first sensed some kind of turmoil within her that went beyond a father’s Alzheimer’s. Throughout our years together, I had gone back and forth over whether to press Judy on what was troubling her, but each time I had decided that she would tell me when she was ready. That time had now arrived.
I squeezed her hand as she hesitantly yet determinedly continued with the words she clearly had rehearsed several times.
I have frequently been in awe of what my wife can deal with, but perhaps never more than on this morning by the lake, parked at a favourite vista, the lapping waves offering some soothing calmness. She was resolute in how she wanted to handle the situation and said she absolutely needed me.
When Judy finished, she asked, not without some fear, what I thought.
It makes me love you more, I said, in the most reassuring tone I could muster despite my rising ire toward her abuser.
We spent a long time that morning down by the lake, talking about summoning courage, hiding suffering, what I could do to best help, and how love can heal. When we ran out of words, we watched the swooping gulls, followed the passing parade of people and dogs on the boardwalk, and gazed at the waves, reflecting on the momentousness of what had just happened.
In the days and weeks that followed, we spoke often about the aftermath of abuse. Judy was candid about the shame, embarrassment, and guilt it had provoked within her. She told me she worried I would judge her harshly. I didn’t. I couldn’t. All I wanted to do was soothe and protect—and hold her closer than I ever had before.
Such devotion, we overheard my neurosurgeon say to a nurse as they walked away from my hospital bed. He was referring to Judy and me. We had met with him a few times previously, and each time he commented on our closeness as a couple.
What had brought us to this hospital stay, in 1997, was my spinal cord. Something had gone wrong (again). In the summer of the previous year, when I was forty-three, I had noticed a sudden weakening of my body’s right side. Moving my arm had become difficult, and my fingers were stiffening. Walking, never easy, got trickier.
In the years following my first spinal cord surgery, when I was seven, I had been assured by my parents and medical specialists that there should be no further complications. My dad, an advertising copywriter, had described the medical predicament to seven-year-old me this way: two bones at the back of my neck had grown into each other—something like a wishbone—and, as I grew, they grew too, right into the part of the brain area that controls my body movements. The doctor, dad had added, would snap that wishbone and protect my head, neck, and everything else.
Thirty-seven years later, I was facing a modern version of the same surgery I’d had in 1960, a spinal decompression, complete with the same possibilities that I might not survive or that cutting into the base of my brain might provoke collateral damage. In our house, we refer to these times as Spinal Cord I and Spinal Cord II: The Adventure Continues, an eerie sequel starring rampaging scar tissue as the villain. Both were terrible periods, but both surgeries went as well as could be expected.
In the hands of many able-bodied writers, our story would most likely be portrayed as yet another example of what people in the disability community often call “inspiration porn.” These superficial, supposedly feel-good vignettes usually cast the disabled person as the hero, or superhero, and the able-bodied spouse or parent as the saint or angel. Those terms, as the diplomatic editor in me would say, are perhaps poor word choices. Judy was more direct.
Poppycock, she once stated, adding, Calling me a saint or angel dehumanizes both of us. I can be crabby, judgmental, and impatient, and calling me either of those words insults you, suggesting you are so awful that no ordinary human would love you.
I was in hospital and rehab for approximately three months. Every day, Judy was at my side after dropping Hannah, then eleven, off at school or at a friend’s place. Every day, together, we discussed and explored our new realities for a life in which, aided by personal support workers and nurses, Judy would continue to be my left arm and leg but would also become my right leg and, sometimes, my right arm.
It took us about a year to return to something like our old existence. Finances were an urgent issue. Neither of us was working full-time, though Judy continued to create and sell her fine-art dolls. Debts were mounting after our insurance company resisted my claim for long-term disability benefits. We worried about losing the house, in which, a few years earlier, we had installed an elevator. But, thanks to the efforts of a determined lawyer, the insurance company succumbed, bringing in needed revenue until I went back to teaching part-time at Ryerson University’s school of journalism and, eventually, to serving as an executive editor at the National Post’s business magazine.
Still, I was mindful of Judy and caregiver burnout. She has always cherished her privacy and was rankled by the parade of often moody and insensitive PSWs, nurses, and other health care practitioners who marched through our doors to assist me after I was discharged. She called the worst of them “home invaders” and “scaregivers.” Judy once told me, I can do all your caregiving. I want to do all your caregiving. I love you. We will, however, need to build in breaks and getaways for me and find ways to offset some of the grittier things that need doing.
Though I could no longer drive, I could still deliver, arranging for spa escapes, fragrances, bath and shower relaxants, regular days when PSWs would stay with me while Judy did whatever she wanted, a trip to New York City, a wide array of CDs, food and wine, and multitudes of fresh flowers.
The first time I went to Judy’s apartment, there were flowers. She always had flowers. When we moved in together, more flowers. For our first New Year’s Eve in our apartment, we filled the place with approximately a dozen bouquets. I was amazed by how many vases she owned. Our annual celebration of ringing in the new year with rooms in bloom continued for more than thirty years.
At some point between our twentieth and twenty-fifth wedding anniversaries, I decided I should buy Judy flowers once a week, maybe more. Every week, I would go to the florist and select a single rose, either yellow, red, pink, or white. We had gone through so much together; I wanted to regularly celebrate that devotion—and our marriage—with a symbol not just of beauty but also of fragility, of not taking life, or each other, for granted.
The morning after receiving Judy’s Alzheimer’s diagnosis, we lay in bed in silence and dismay. There was no reason to get up. We listened to classical music, and at one point, Judy quietly, softly stated, Well, that’s life. Things come and things go. My only response was to hug her, not knowing what else to do or say.
I thought a lot about the marital bed that day and how it is such a complex setting. As long-time happy couples discover, it’s a refuge on which to romp, play, relax, sleep, recharge, and heal. For Judy and me, the bed was all these things, but perhaps more than for most twosomes, it was a place of comfort and comforting. After sitting in a wheelchair all day, for example, it’s a huge relief to stretch out and sink into soft layers of foam—so much the better if a good bottle of wine and two glasses, one with a straw, are within reach.
Throughout our years together, there have been moments when I felt overwhelmed by disability and a world that is frequently unwelcoming to me. Judy would usually suggest we lie in bed, where she would hold me tightly, rhythmically stroking my cheek with a curled index finger while wiping away my tears. (I am the weeper in the family.) At some point, I would ask something like, Aren’t I just too much for you?
Her responses were firm yet soothing, variations of: No, you aren’t. A fool or someone with anger issues is too much. I love you.
A few days after her diagnosis, Judy told me, I am so sorry. This is going to be very hard for you.
Hanging in our bedroom is a framed poster for the opera Orfeo ed Euridice, a wrenching life-and-death-and-life story, based on a Greek myth, in which two lovers are reunited in Elysium, the underworld paradise where everyone is in a state of bliss. Judy gave it to me after the emergencies of Spinal Cord II had passed. It’s a lovely piece of graphic design, and on the back, she wrote out a verse from the opera—when Orfeo first comes for Euridice and the chorus calls out:
Return, fair one, to your husband,
from whom merciful heaven
wishes you never more to be parted.
Do not lament your lot,
for a husband so true
can be called another Elysium.
The story of Orfeo ed Euridice was much on Judy’s mind throughout Spinal Cord II, particularly in the early weeks, as she would venture daily into the underworld of downtown Toronto’s St. Michael’s Hospital, where, in the basement, the MRII area is just a short stroll away from the morgue. She was on a mission: to help rescue me in any way she possibly could.
My mission has become quite different. There is no rescue from Alzheimer’s, of which Judy, having watched her father’s slow demise from the disease, was particularly aware. But what still astounds me is the calmness she brought to accepting her fate, even through torrents of tears at times, and how steadfast she was in continuing on as best she could.
One evening, as we lay in bed, Judy started to cry. She whispered, I’m afraid of forgetting everything.
I know you are, I responded, but try not to worry. I will be your memory.
Judy relaxed, smiled, squeezed my hand, and quietly said, Good.
For the first several years of living with Alzheimer’s in the house, my emotions were often in upheaval. One example: I cursed my disability—frequently. Though I have learned many positive life-altering lessons over the decades, such as that out of loss and weakness can come new strengths and insights, I couldn’t envision any possible good coming out of watching my Judy slowly slip away. That I would never be able to reciprocate all that physical help Judy had bestowed on me seemed particularly cruel. Could I ever come to terms with that?
Inside the minds of most people in the early stages of Alzheimer’s is a swirl of anxieties that can be frightening and debilitating, especially as the light of day ebbs away. Music can help to soothe, so Judy and I spent countless hours together, particularly in the evenings, lying in bed, face to face, enjoying a stream of oldies. As I listened to the chartbusters of our youth, it slowly dawned on me how many “boy meets girl, boy loses girl” hits have a new resonance for those of us in long-term relationships as disease or death take our loved ones from us.
It was in bed with Judy that the idea for the evolving love letter came to me. Initially, Judy worried about suddenly wandering away from our house and getting lost—or worse. In response, one evening, I reminded her of the children’s book The Runaway Bunny, which she loved reading to Hannah. If you wander away, I said, echoing Mother Rabbit to her adventure-seeking offspring, Hannah and I will always find you and bring you home.
I would frequently repeat this line, and each time I could see Judy relax, if only for a little while. She never did wander away, and through this example and numerous others, we learned how much Judy valued and needed to hear our voices. I have never been shy about telling Judy how much I love her. Each time, it would make her beam, and I started to realize that those three words would be even more powerful to her as the fog of Alzheimer’s steadily, stealthily rolled in, confusing and scaring her, making her feel alone and unprotected.
I launched my oral love letter a few nights after the National Magazine Awards. “Judy and Steve met by chance, on Cumberland Street in Toronto, on the most gorgeous day of the summer,” I told her. “I was immediately smitten, remain smitten, and will always be smitten no matter what twists and turns of life await us.” I then added a slightly edited passage from the speech. “You are the love of my life, who literally and figuratively, physically and emotionally keeps me going. You are a tremendously talented artist, specializing in dolls and collages, with a rare gift of making unexpected pairings that are particularly magical, just like our marriage.”
I followed that with brief descriptions of treasured memories: the afternoon we met, the morning Hannah was born, the purchase of a cherished opal ring, watching a particularly spectacular Atlantic sunset, and other joyful moments of two lives tightly intertwined.
When I finished, Judy quietly sighed, kissed me, and made a request. Would you say that all over again?
On a sunny August afternoon, about five months into the pandemic, Judy, Hannah, and I were sitting comfortably in the back courtyard of my wife’s long-term-care facility. We were surrounded by blooming hostas, black-eyed Susans, geraniums, and other flowers in addition to a variety of carefully positioned trees and bushes—all of which offer residents, staff, and visitors shade, privacy, and an aesthetic relief from the more institutional feel inside. It’s an area designed for quiet contemplation, tender conversation, and lots of physical movement along a smooth pathway in the shape of a large infinity loop.
Judy has resided here since June 2017. Hannah and I had been determined that she stay at home with us for as long as we could manage, aided by PSWs and a few remarkably thoughtful relatives and friends, knowing full well we would likely need to place Judy in a nursing home eventually. That is the trajectory of Alzheimer’s, and we were able to hold off that wrenching transition for more than five years.
We were visiting on an auspicious day in our lives: the forty-first anniversary of when Judy and I first met, on that most gorgeous day of the summer. She and I were in our respective wheelchairs, Judy’s newer and sleeker—and hers tilted back, which is safer and accommodates her frequent naps. We listened to Hannah as she read aloud from Within a Budding Grove, the second volume of Marcel Proust’s In Search of Lost Time. Judy hadn’t discovered Proust until her mid-forties, when he quickly became her favourite author. She treasured his vivid, detailed descriptions; his wry, sometimes snarky social and personal commentaries; and his musings and observations on love. Hannah had started reciting selections from Proust to Judy a few weeks after the diagnosis.
As Hannah read, I was reminded of a conversation I’d had with Judy shortly after settling in back home following Spinal Cord II, twenty-two years earlier. Our daughter was twelve at the time, and I had asked my wife, Do you think we should get Hannah more involved in assisting me to help take some of the workload off you?
Judy thought about my question for a few moments, then replied, No. I don’t want to force her to help. I want her, as she gets older, to observe how we handle difficult situations and learn from our example and the way we embrace life despite bigger problems than many. It would be much better if she decides she wants to help.
After about twenty minutes of Proust readings, Hannah, now in her mid-thirties, departed for her COVID-19 test, which she did weekly as an essential caregiver to her mother. Suddenly, Judy and I were alone for the first time in weeks. Even before pandemic quarantining began, we had been apart for almost two months. I’d had a particularly difficult winter. It had started with a deep cold—first with Hannah, then with me. But mine had quickly degenerated into quadruple pneumonia, and I’d spent much of that December and January in hospital, mostly in ICU, hovering near death three times and hooked up to a ventilator for several weeks, constantly worrying about Judy and feeling incredibly guilty that I could not be with her.
Before the deep colds and the arrival of the pandemic, Hannah and I would visit Judy three or four times throughout each week. On some visits, she’d be somewhat alert; other times, not so much. No matter what her state, I was happy to be there, feeling an inner peace and contentment I had not expected. This calmness only intensified when Hannah would give us time to be alone together and I could recite my love letter, which I have done well over 5,000 times since 2012, often up to ten times a day.
“Judy and Steve met . . . ” I would begin, and in almost every instance, Judy would react by reaching out and clasping my waiting hand. In time, as Judy moved shockingly quickly from early Alzheimer’s to middle and then to late stages, she still frequently attempted to grasp my hand as I began to recite. She often missed, but it was gratifying to realize that the letter and I were still connecting with her. But could that connection stay intact through the onslaught of quadruple pneumonia and a global pandemic?
As Hannah headed inside, I looked at Judy. Her eyes were half closed and her head was slumped slightly forward, though not enough to dislodge her black wide-brimmed sun hat. I am often asked if Judy still knows who I am. My answer: I don’t know, but I think, when she is aware of my presence, she does recognize me as someone familiar.
It’s hard to accept the possibility that Judy may have completely forgotten about me, but a lifetime of living with disability has shown me how delicate human bodies and minds can be, how little it can take to dramatically, traumatically alter—or end—lives. Two rogue bones in my neck. Plaque on my beloved’s brain. Great love stories begin with such heady promise and end with such sadness and grief—but, at least in my case, also with memories of immense joy throughout a muscular marriage of two strong, supportive partners with challenges aplenty.
I started to recite. When I came to the third smitten, I noticed Judy’s arm moving slightly toward me. Am I still getting through? Does my love letter continue to resonate? Or is she just a bit uncomfortable and simply repositioning her arm?
I’ll never know for sure. I searched her face for a clue, but there was no indication. I continued reciting all the components of my letter, speaking a little louder than usual to offset the muffling effects of my face mask. When Hannah returned, she picked up where she had left off in her Proust reading until a nursing-home worker told us that our time was up so another family could have a visit.
We said our goodbyes, told Judy we would see her soon, and strolled along the infinity loop to a waiting accessible cab, which took us back to an emptier, quieter home where, in the living room, a vase of fresh flowers can usually be found.
Author’s note: several of the ideas, passages, and descriptions in this article first appeared, in sometimes slightly different form and context, in “Lost & Found,” my quarterly column for Abilities magazine.