Category: Multiple Sclerosis

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Eulogy for Vida

Vida as a girl, with a baby cousin.

Delivered on December 12, 2022, in Toronto. By Julija Šukys.

What I know about survival, courage, and joy, I learned from my mother. Vida taught us, her children, that life is adaptation, that peace comes through the acceptance of change, and that it takes courage to live with joy.

She would chuckle when I pretended to be stern and told her to “assume the position,” so I could get her dinner tray in place, strap it to the arms of her wheelchair, and settle in with her for a Sunday night murder mystery on TV. She would laugh as a boyfriend and I struggled to get her up off the floor after she’d toppled over onto her bedroom carpet. And even after dementia had settled in and she’d pretty much stopped talking, I could still make her giggle by giving her a series of loud kisses on her cheek.

Our mother’s diagnosis of Multiple Sclerosis came more than 40 years ago, when I was about 4 and my brother, Paul, about 6. It started one day at work, my mother told me. A high school science teacher, Vida was eating lunch in the staff room when half her face suddenly went numb. Many MS patients tell horror stories of years of tests and misdiagnoses, but Vida was the exception. Her diagnosis came quickly and without delay. “When they told me what it was,” she said, “I thought, well, at least it doesn’t kill you.”

About eight years ago, I interviewed my mother about her life and her illness. We talked in the library of her nursing home. “The facial numbness disappeared after a while,” I hear her say on the tape I made that day. She goes on to describe other effects that emerged over the years: double vision, fatigue, imbalance, and unresponsive limbs.

Near the end of our recorded conversation, Vida finally lands on the thing she told Paul and me for years. Call it a mantra of sorts: “I had this philosophy that I wouldn’t dwell on what I’d lost, but I’d look at what I could still do and expand on it with multiple aids. And then,” my mother concludes, “if I did that, I was a winner.”

Vida was so good at making the adjustments that MS required of her that, in my view, her defining characteristic wasn’t her illness but rather her extraordinary response to it. “This is a class act,” wrote the essayist Nancy Mairs, “No tears, no recriminations, no faintheartedness.” Though I’m pretty sure she had never read or even heard of Mairs, who also suffered from MS for decades, Vida unwittingly lived by her words.

Sitting vigil with my mother in her final weeks has been one of the great honors, joys, and sorrows of my life. Each day when I arrived, I would give her noisy kisses, rub her legs, and hold her hands. Each day, I would say over and over again, “Hi Mama. I’m here. I love you.” I must have said it a thousand times.

In the days since her death, I’ve felt like a planet knocked out of its orbit. And I’ve marveled at a new realization: That despite her illness, Vida was like the sun around which my brother and I revolved. She was at the center of everything; the magnet that pulled me back to Toronto at every opportunity. Somehow, although her body and even her voice no longer worked, she still managed to be the strongest force in our lives. I feel a bit lost without her. I have no doubt that Paul does too.

But our mother taught us well. She passed on lessons about self-transformation and survival, so we will adjust. We will take care of each other now.

Mama, we’re here. We love you.

Go to your ancestors and walk with them again. They’re waiting for you, I’m sure.


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The Telling Name: On Covid, Quarantine, and Cancer

I’ve been reading long-ago letters from my family’s dead. I delight in their terms of endearment, trace the gestures of their handwriting, and sway to the rhythms of their old village dialects. Visiting with my ghosts helps me step out of time and away from the pandemic, at least for a while. Call it a coping mechanism.

“The tumor has come through the skin now,” the cancer specialist he told me by phone from Toronto. He called this morning, as promised. “It’s time for the mastectomy,” he said.

In the days before the virus outbreak had begun in earnest, the doctor and I had weighed the costs and benefits of surgery: my mother is elderly, paralyzed after decades of degenerative illness, and has already beaten cancer once. Given her age and frailty, we decided to put it off for as long as possible. Chemo and radiation would be out of the question in her case. “What’s more, given her state, she might never come off a respirator,” the doctor said quietly.

A mere week after this conversation, the virus began its tear through the care facility that has served as my mother’s home for over a decade. It came suddenly and strong. Before long, the Covid had caught my mother. I walked around for days in a fog of tears and anticipatory grief, reeling between the two diagnoses – cancer and Covid, Covid and cancer – both apparent death sentences. “Save your mourning until you need it,” my husband said gently. “She’s alive now.”

Against all odds, my mother has come through the infection. It lasted around 8 weeks. Even her nurse called it a miracle.

The home sends a virus update by email each day. Every morning with my coffee I open the file and study the columns: “Positive,” “Negative,” “Deaths,” “Resolved.” Today, as I read, I do a quick tally. The virus has now killed 37 people in the building. 80 active cases of Covid-19 remain. Last week, the total of in the “Resolved” column went up by one, that is, by my mother’s survival. Call it a reprieve.

The cancer specialist’s Ethiopian name, I’ve surmised, means “Servant of Christ.” Even being as bad a Catholic as I am, I nevertheless find comfort in this “telling name” (sprechender Name), so apt for a doctor brimming with compassion and shimmering intelligence. When I filled him in on my mother’s infection, recovery, and the home’s continued lockdown, he changed his plan for surgery. “The virus is unpredictable,” he said. “We don’t know what damage it has done to your mother’s lungs. We don’t know if she can be re-infected.”

So, again, we wait. We wait for the virus to finish its rampage. For my mother’s body to strengthen itself. To see if it will prove its immunity.

After the call, I put the family letters away. The virus has pulled me back into time. I feel the march of every minute as I calculate how long will need to travel and self-quarantine to be at my mother’s side, should the mastectomy become her ferry to the ghosts.

[Photo: Sebastian Gurd]

This micro-essay originally appeared at How We Are: Writers and Artists Under Quarantine (June 2, 2020).

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On Clutter

Pack Rat by davedillonphoto

Today, I return to my manuscripts. I’ve got both an essay and a book that I abandoned unceremoniously some four months ago. I can’t wait to get back to them.

But there were good reasons for my break from writing: there was our house in Gozo to pack up, our life to get back in order upon our return to Montreal, and Sebastian to entertain before day camp started up. Finally, I had paying work to finish and a new book to promote.

Before leaving on our 8-month Maltese adventure, I sifted through every belonging in our house and did a huge purge. Upon returning, we de-cluttered again, considering the use, value and necessity of each object as it emerged from its box. (Time and distance really do give you a good perspective on the things you own and drag around.)

Keeping clutter down in our house is tough for me. I’m a pack rat by nature, having descended from a long line of war babies whose instinct was to keep things just in case. For example, though my maternal grandmother’s house was spotless and tidy, its cupboards and closets were lined with neat little labelled packages of thread, photographs, letters, wedding shoes, fishing lures…you name it. She was a secret pack rat — literally, a closeted one.

My mother’s house, on the other hand, was just packed – totally randomly and without labels or order or pretence. When she moved out of her condo and into a nursing home (when her Multiple Sclerosis made 24-hour care necessary), I spent days shredding decades-worth of papers, among which I found several envelopes of cash and caches of family letters (I kept both). I sorted through broken furniture, piles of books, nonfunctional stereos, old records, dusty silk flowers, jars of pennies and foreign currency, dishes, and vases galore. I managed to get rid of most of the clutter, fighting my impulse to keep this or that just in case, but I shipped home the boxes and boxes of family photographs that had filled my mother’s living room wall unit. None of the photos are organized or in books. They are in envelopes or tossed loose into cartons. Most aren’t even labelled.

The idea of going through them now overwhelms me.

When we returned from Gozo, instead of putting these boxes back in our basement closet where they sat undisturbed for years since I’d moved them out of the condo, I left them out in a pile. Seeing them every day would mean I couldn’t ignore them, and I vowed to triage and order the images into some sort of family narrative. But even as I resolved to do so, I confessed to Sean that I couldn’t see how. I hadn’t even started, and already I felt resentful of the tedium that would stall my writing even longer.

“You’ve been saying you need a frame for the book, so write about it. Use the process,” he answered.

And a light went on. Sean had given me the key to finishing the book about my paternal grandmother and her life in Siberia.

I start this new phase of sorting and de-cluttering (and research) today.

I’ll let you know what I find.

[Photo: Pack Rat by davedillonphoto]

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Life-blood: Mary Gordon

Mary Gordon, The Shadow Man: A Daughter’s Search for her Father (Bloomsbury, 1997 [1996]).

I read this book on the recommendation of a colleague who thought it could be useful to my work. She was right: I found that it spoke to me on many levels.

I hadn’t expected to have so much in common with Mary Gordon.

Gordon’s book tells the story of her attempt to reconstruct her father’s life and identity through visits to archives and libraries, by wading through murky memories, and taking by both real and imaginary voyages.

She tells us that she connected to her father first and foremost through writing, and that she had become a writer because of him. But her daughterly love and pride get disturbed when she begins to learn unanticipated truths: that her father was both a Lithuanian Jew (who converted to Catholicism) and an anti-Semite, not an American-born, Harvard-educated once-married Catholic, as she had been told. Though he had indeed been a writer, his texts reveal he was not a very good one. His life revealed that he was not a very good husband. Certainly not a very good Jew.

This is a very honest book, so much so that at times it made me uncomfortable. As I read one bald truth after another, I wondered where Gordon got the courage to reveal so much about the things her father believed, about the lies he told, about family secrets. I wondered whom this book was for and who would care.

But just as I asked the question, I began to care about this family. This moment coincided with the author’s offering up of a portrait of her mother: a woman crippled by polio in childhood and struck by senility late in life Gordon’s discussions of her mother’s body struck me as particularly poignant:

For many years, the only adult female body I saw unclothed was, it must be said, grotesque, lopsided, with one dwarf leg and foot and a belly with a huge scar, biting into and discoloring unfirm flesh. She’d point to it and say, “This is what happened when I had you.” (221)

This mother is a phantom presence throughout the book (a shadow woman of sorts), the third member of the family, overlooked and largely unloved. But with her introduction, the narrative somehow fell into place for me, and the book began to sing, if sadly.

It was then that I started to find all sorts of common threads between my own life and work and Mary Gordon’s.  I began thinking about my own Lithuanian father who died too young, about my posthumous discoveries about his life, about my own processes of reconciliation with the dead, my relationship to Catholicism, to the country my parents left behind as children, and — most unexpectedly — about my relationship to my own mother and her poor body, battered by multiple sclerosis.

I read this book as I was starting to map out the first chapters of my current project, a family history of sorts. Gordon’s baldness forced me to ask: How much do I dare to tell? How much do I have the right to reveal? What do my parents’ stories have to do with the story of my grandmother that I’m writing?

Mary Gordon’s book is, at least in part, about learning to love someone with all their faults. It’s about forgiveness and acceptance, but without being too pretty or tidy. And (something that surprised me), it managed to speak to me on a most fundamental level by reflecting back my own story of intimacy, familiarity, and discomfort.

[Photo: Thomas Hawk]

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“Toute same” (It’s the same thing)

My father died very suddenly when I was eighteen years old. Shortly after his funeral, my mother dreamed he came back to life. She couldn’t explain how; he was just back. The weird thing was that the dream seemed largely to be about the bureaucracy of death. My parents sat on the couch for a long time trying to figure out how to navigate the funereal red tape in reverse. How did one undo a death certificate? How would they reinstate his credit cards and financial records, and how was he going to explain this at work?

My dreams about him are less comical.

I once had a swimming dream where I could see him under water, but could neither reach him nor get his attention. I kept yelling Tėte! Tėte! (Dad! Dad!), diving down trying to reach him as he swam away.

In my last dream, he was lying in bed at our old house wearing blue pajamas. My mother lay beside him. Downstairs, both the the lights and stereo were on, and on my way to bed, I thought to myself how careless my father had been in not turning these off. I had a feeling that there was something strange about his being up there in bed, but I couldn’t pinpoint exactly what. I knew I hadn’t seen him touch my mother in a very long time, or kiss her, or help her in any way, and I couldn’t figure out why. Until I remembered, and woke up.

It took me years to forgive him for abandoning my mother at the moment when she really began to need him, when her Multiple Sclerosis finally became debilitating. Perhaps I even blamed him for worsening her condition. It’s no coincidence that she began using a cane shortly after his death. The stress of his death had brought on an attack.

I have now lived longer without my father than I did with him. I no longer blame him for dying, or for leaving my mother alone in this world, or for making her sicker. I am no longer angry at him.

Instead, I concentrate on my mother as she continues to live and to persevere in her own way.

Ten years ago, she told me in a terrible phone conversation that she didn’t think her body would last another decade. And yet, here she is. She is wheelchair-bound, and has lost the use of three of her four limbs, but when she turned seventy a couple of years ago, it felt like a victory against death. Her life is still hers to live and her story still hers to tell.

I have no doubt that the shock of my father’s sudden disappearance is at the root of my drive to remember and record life stories. Writing about him, about my grandmother, about Šimaitė, Djaout, and others is the one way I know how to fight oblivion and darkness.

Life-writing. Death-writing. Toute same, as my three-year-old son would say in his fusiony Franglais. It’s the same thing.

And if my father is the death in my life-writing, my son is the life in my death-writing. He is both the reason I get up and the alarm clock that wakes me. In many ways, it’s for him that I remember the dead, because I want him to know their stories too.

[Photo by slightly confused]

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