WHEN A SISTER DIES
Sheila Tynan left behind a rich lifetime of love.
Ten days after she died, I dreamed about my sister.
Sheila was alive, and I was helping her climb some stairs. That was surprising, because she’d been confined to a wheelchair for more than a year. But I was even more bowled over to hear her talking. She had that slur she’d developed when her speech first started going, before she was silenced entirely, but she was making herself perfectly understood. I marvelled, and she smiled.
“It’s drying up,” she told me. “The ALS is just drying up.” Crazy dream.
ALS never dries up. No, this indescribably cruel disease insinuates itself into a body and, day after day for two or three or maybe even five years, relentlessly squeezes the life out of it by reducing its muscle capacities to nothing — although it leaves the mind intact. So as mobility, communication and breathing steadily diminish, and each day brings a new and terrifying loss, the ALS victim remains excruciatingly aware of everything.
Each time I thought of Sheila after her diagnosis, I was reminded of that Poe short story where a man is chained in a space slowly being walled in, brick by brick.
Amyotrophic Lateral Sclerosis is a progressive neuromuscular disease that causes the body’s voluntary muscles to wither and die. Between 2,500 and 3,000 Canadians suffer from ALS, and, every day, two or three of them die. So far, researchers have discovered neither cause nor cure. There’s not even any effective treatment. You’re diagnosed, and then, usually two to five terrible years after that, you die. Period.
Sheila Margaret Tynan, the 63-year-old woman I’ve always called my little sister, fought it like a champ. “I may be losing muscle, but I’m not losing spirit,” she wrote in a 2013 blog entry.
“It’s not going to get me until it gets me.”
And it got her, finally. She died on Oct. 21 of end-stage ALS in a Vancouver hospice, nearly four years after her diagnosis. At the time of her death, she was completely immobilized, unable to move legs, feet, toes, arms, hands, fingers, torso, neck, head. She had a feeding tube, and breathing was a struggle. She was often uncomfortable and in pain, but she could rarely let anyone know. Communication was limited, reduced to eye movement.
When people call death a blessing, this is surely what they mean. So it would be foolish to say I was unprepared. How could I be? And yet her death has upended me.
Emotional narrative
When a sister dies, people aren’t sure what to do. A sibling is not a spouse, parent or child, so the death doesn’t lend itself to comfortably conventional expressions of sympathy. The death of a sibling falls between polite cracks.
But the emotional narrative tells a different truth. A sister isn’t supposed to die. And a younger sister? This is unfamiliar territory, a landscape of pain, irrational guilt and the unsettling certainty that life’s balance has been forever thrown off. I love my two brothers. But with my only sister gone now, a vibrant piece of the clay that helped shape everything I am is suddenly no more. It feels profoundly wrong.
Sheila was five years younger, but we were always close.
She lived in Vancouver, having moved there from our native Montreal in 1981. And yet it may as well have been next door, for all the disruption it caused us. In the early days, we phoned each other several times a week; in recent years, we FaceTimed. Over the past year, when she could no longer speak, FaceTime permitted her to see and hear me and the other people she loved back east. She responded with her eyes and her lovely smile, a thing of unguarded openness that, incredibly, ALS never managed to touch. At Thanksgiving dinner this year, FaceTime allowed us to toast her from Ottawa. She was in hospice by then, and it was impossible to keep the tears at bay, but she smiled all the same. She had one of the world’s great smiles.
She used to travel back east two or three times a year, staying with us. Sometimes I’d pick up the phone to hear, “What are you doing on such-and-such a date?” When I replied, “Nothing much,” she’d say, “Well, do you feel like picking me up at the airport?” She’d come for Christmas and Thanksgiving, christenings, significant birthdays, for visits just because. She and her partner Margaret even flew to Ottawa for my retirement party in 2008.
And I visited her in Vancouver when I could: first in her Kitsilano apartment, then at her little bungalow in Burkeville, part of suburban Richmond, then the home she and Margaret had in scenic Steveston, and finally the Steveston condo they bought in 2014, partly to accommodate her wheelchair and medical equipment.
Memories from three visits remain etched in especially fond detail.
In 2004, on a sunny June day a year after same-sex marriage had become legal in B.C., Sheila married Margaret. They were both mature when they met, but, as I recall Sheila’s description, it was mutual love at first sight — love Margaret enhanced with tender and detailed compassion through to the difficult end. A large family delegation that included my mother headed west to celebrate the wedding. My mother was 86 and ill with cancer at the time — she died two months later — but she wouldn’t have missed this for the world.
We all believed vigorously in B.C.’s new ruling, but the real reason we flooded out was simpler: Everyone adored Sheila.
A little more than a year ago, I went out on my own to stay with Sheila for a week while Margaret was away. I am emphatically no nurse, and I was nervous about caregiving duties. But I learned how to get the wheelchair attached in the special van, became adept at mixing up her protein smoothies, successfully made chair transfers, woke appropriately in the middle of the night to turn her over, attached her headband properly, threaded her fingers effectively around spoons and glasses, since she could still eat and drink a little at the time. I managed fine.
And I was blessed. During that week when it was just the two of us, we talked. She could still speak, although with a slur, and we talked about everything — meaning everything we’d never discussed before, like deterioration, belief and hope, the rituals of death, death itself. There were tears. She asked if I’d write her obituary. I told her I couldn’t imagine a world without her in it. It was a strangely good visit.
The last time was in June of this year, and it was indeed our last time. It included my husband Dan and me, two daughters and one son-in-law. We were there to say what we knew would be our final in-person farewell, as well as to participate in ALS B.C.’s annual fundraising Walk for ALS, an event Sheila had championed faithfully. We wore T-shirts in ALS purple, emblazoned with “Team Sheila, Ottawa Division” and a picture of our gal at her smiling best.
When we kissed her goodbye for the final time, we were so enveloped in our own sadness that we didn’t consider how much worse it was for her. Each of us had one terrible departure to endure, while she had the pain over and over, one by one. On June 11, I hugged Sheila physically for the last time, just before I left for the airport.
A sister isn’ t supposed to die. And a younger sister? This is unfamiliar territory, a landscape of pain, ir rational guilt and the unsettling certainty that life’ s balance has been forever thrown off.
I had a Kleenex in each hand, one for my own tears and one to wipe away hers.
In the family, we called her Shee, or Auntie Shee. A loving and attentive aunt with three nieces, a nephew, four greatnephews and a great-niece who were all crazy about her, she was also a pretty great person allaround: a generous friend with a circle of dedicated and generous friends, proof that you get what you give; a sister who infused the family core with love and connectedness; a daughter whose devotion was less duty than joy. When my mother died of cancer in 2004, it was Sheila, with Margaret, who moved in to my mother’s Ottawa apartment for more than a month to care for her, enabling her to die peacefully at home.
We were similar in many ways, Shee and I. Our politics aligned, as did our musical tastes, enthusiasm for Irish roots, pronounced aversion to the taste and texture of eggs. But we were also different, sometimes disagreeing because I was judgmental, not her style at all. I was undeniably Martha to her Mary, fretting about organizational details as she welcomed family and friends with a glass of good wine — it had to be good — to laugh, talk and share stories. She used that warm smile of hers constantly to tell the world she loved it.
A gentle warrior
If I ever wrote a book about my kid sister, I’d devote entire chapters to each of the passions, delights and qualities that were uniquely Sheila.
I’d talk about her talent as a photographer. She loved good cameras all her life, and she had both instinct and a fine eye. Thanks to a friend’s assistance, one lovely photo she took capturing the ethereal serenity of Haida Gwaii accompanied Sheila’s final blog post in October and adorned the back of the program at her Celebration of Life in November. That friend has posted a number of Sheila’s photos on her website, Denizen Planet, where she hopes to sell them for the price of a contribution to ALS.
I’d also describe Sheila’s passion for food, something we shared enthusiastically (and, unfortunately, with visible results). She was skilled and fussy in the kitchen, and we traded recipes and preparations freely. From vinaigrettes to lamb chops to magically transformed Brussels sprouts, I still make countless dishes whose provenance is labelled, simply, “Shee.”
We shared a quirky love of music, too, from the song-anddance routines we performed as Little Players of the Air in Montreal (“It’s …a … GREAT … day … for the … IRISH”) to the church music that filled our 1950s school days at St. Malachy’s. Sheila was not a religious person, but she loved such old Catholic standards as Holy God, We Praise Thy Name and Queen of the May, which she and I both sang every time we smelled lilacs. When I hear Nessun Dorma, I recall that I first heard it at Sheila’s, on something brand new called a CD. Handel’s Largo from Xerxes, Liam Clancy’s Parting Glass, Nina Simone — I can’t hear any of them without recalling Shee’s broad and eclectic tastes in music.
I’d write about her stubborn convictions. She came out in the 1970s, when coming out was even more difficult than it is now, and she hated homophobia in all its guises. She never flinched from speaking out when the need arose, though her corrections were usually polite, even kind.
She applied the same stubborn convictions to her fight against ALS, raising much money and even more awareness. During that surprising phenomenon that was last year’s Ice Bucket Challenge, she appeared repeatedly on Vancouver radio and TV to promote the cause. (I called her a media slut, which made her laugh. She didn’t mind attention, but she was never a selfpromoter.) Through the annual Walks for ALS, she became the province’s highest individual fundraiser and, last April, ALS B.C. gave her its “Exceptional Public Awareness” award.
Three weeks before Sheila died, executive director Wendy Toyer wrote her: “You are an amazing woman, and I am privileged to call you my friend. You have given so much to others living with ALS.” At the memorial service, Toyer spoke warmly of those contributions.
Sheila was a real fighter, though a gentle one — a warrior with a smile.
I’d write about the years she managed Margaret’s dragonboat crew of breast cancer survivors. And her love of words and word games, at which she routinely whupped me. And the incredible generosity she brought to each of her roles as partner, daughter, sister, aunt, friend.
Yet she probably saved the best for last. During the four years she journeyed through the devastation of ALS, she showed the world what grace and real courage look like. They were there when she talked about her fate — or, over the last year, spelled it out laboriously with her eyes. They were there as she lived her days as enthusiastically as possible. And they were there in the blog she started in 2012 (sheemyals.blogspot.ca), a project she began by typing on a key- board and ended through gaze technology, looking intentionally at letters and spaces on a screen keyboard to spell out words.
In the spring of 2013, she wrote, “I will appreciate the beauty in the world around me. I will revel in the joy of family and friends. I will love and be loved.”
Last May, after describing the latest deterioration, she wrote, “The good news is that I still have a smile on my face.” At the end of August, announcing that she would soon be going into hospice, she wrote, “I am not afraid of death. It makes me sad. I have so many people I don’t want to say goodbye to. … I will make sure to vote in the early polls. (I am my mother’s daughter.)”
At her Celebration of Life last month, CTV Vancouver news anchor Tamara Taggart spoke of the warm friendship she had developed with Sheila after learning that a newly diagnosed Sheila wanted to meet her — that, in fact, she was on Sheila’s bucket list.
Among the lasting gifts of the friendship, she said, was the hope Sheila believed in deeply and urged in others. “I’m going to miss her a lot,” she said to the packed room. “I told her when I saw her in hospice that she was actually on my bucket list — and I didn’t even know she was on my bucket list.”
The day before Sheila entered hospice in October, she spelled out her final blog post: “I know that Thanksgiving is right around the corner, and I have been counting my blessings.” She listed them — among them, family, friends and Margaret — and concluded: “My energy is failing, so I will sign off now. Keep me in your thoughts.”
The right to die
It was during one of our evening meals last year, when I was staying with her, that the topic arose. I’d made my version of Kung Pao chicken, something she liked and could still manage, and I’d cut the meat into tiny pieces for her. I’d worked her fingers around her special fork and dimmed the dining room light, for atmosphere. I don’t remember who raised the issue, which we talked of calmly, even though it seemed to thrum with heightened urgency.
Sheila believed in the right to die and the right to physicianassisted death. In cases like hers where there was no hope of cure or improvement, and death would be an agonizingly protracted journey through hell, she believed that ending that agony with dignity, on her own terms, should have been her right.
I surprised her by agreeing with her. Like theologian Hans Kung, I said I couldn’t see assisted suicide as wrong in cases like hers. The radical Swiss Catholic priest told Der Spiegel in 2013 that he believed life was indeed a gift from God, but that God is love and compassion, “not a cruel despot who wants to see people spend as much time as possible in a hell of their own pain.” This is what I believed, I told her. This is what I believe now.
And this is what I’d like to tell Parliament’s new Special Joint Committee On Physician-Assisted Dying, announced this week by Justice Minister Jody Wilson-Raybould and Health Minister Jane Philpott.
I’d say something similar to religious leaders who hold press conferences denouncing assisted-dying legislation. I’d have the same message for disability activists who think it threatens their own lives, the same message for those who confuse apples with oranges, mistakenly mixing up right-todie with the undeniable need for more and better palliative care services.
What I’d really like to do is present all of them with a single image of Sheila’s final year: loss of all movement, inability to eat or drink, loss of speech, compromised breathing, inability even to wipe eyes or nose while enduring yet another painful goodbye — all this, incidentally, while receiving palliative care — wrapped in relentless deterioration and the certain knowledge that the only relief will be death, whenever it may come. I’d say to each legislator, religious leader and activist: here, take a look. This is what your opposition or indifference or delay looks like. This is what inaction looks like.
“Nobody should have to die this way,” Margaret told me more than once, usually in tears. “Nobody.”
109 I-love-yous
On June 24, after I’d returned from our final Vancouver visit and could no longer keep denying that my little sister was truly dying, I started sending her daily I-love-you emails. They were distinct, nothing to do with my regular emails. Each day at the same time, I sent her a single, simple reason why I loved her.
Confessing love to each other, I should add, was not something we did as a rule, because we’d always taken it for granted. But this was a way to review our lives and relationship, and I wanted her to know the specifics of my love. I’d sit in a quiet spot, close my eyes, think about Sheila, and send her my daily message.
Some made me teary. (“I love you because you’ve taught me such powerful lessons about the nature of grace and courage.” Or “I love you because you’ve never stopped caring about others, even when you have every reason to focus only on yourself.”) But it wasn’t all weepiness. (“I love you for never complaining when, as a little kid tagging along behind me, you used to have to do that little hop-skip to keep up.” Or “I love you because you’re the only person in the world who will laugh if I say, “I’M not going down there! There’s pumas down there!” a reference to an old Smothers Brothers skit that used to crack us up.)
When she died on Oct. 21, I had written 109 I-love-yous, stopping when she lost consciousness.
My last one — I think I knew it would be the last — said simply, “I love you, Shee. I don’t think you need any more explanation. You’ve always been with me. You’ll always be with me.”
When a sister dies, recollected moments of sweetness, goofiness, joy, even sadness offer some distraction from the pain. Everyone who’s ever felt grief experiences memories like this, hints of sunshine on a dismal day.
But you can’t hug a memory. You can’t call it up and tell it what happened today. You can’t FaceTime it and go through those wacky song-and-dance routines you did as kids, warming yourself in the comforting familiarity of its smile.
You can’t confess your worries and deepest fears to a memory, pouring out confidences you know will be held close. You can’t go to the airport, pick up a memory, bring it home, pour it a glass of wine and settle in for an evening of easy conversation. Memories mean well, but they’re no substitute.
When a loved one dies, life is forever changed. If that loved one is a sister, someone who grew with you out of shared material, part of you simply disappears, replaced by a dull ache.
At her Celebration of Life last month, a song accompanying the slide show offered these lyrics about living: “the only measure of your words and your deeds/ Will be the love you leave behind when you’re done.” That was my Sheila.
The truth of it feels like consolation. So does the knowledge that her suffering has ended. These two certainties will have to be enough.
Sheila left behind a rich lifetime of love. And she is at peace.
When a loved one dies, life is forever changed ... part of you simply disappears, replaced by a dull ache.
JANICE KENNEDY I will appreciate the beauty in the world around me. I will revel in the joy of family and friends. I will love and be loved.
SHEILA TYNAN WRITING IN HER BLOG IN 2013, SEEN IN RED, WITH PARTNER MARGARET, CHRISTMAS, 2010