by Tilda Shalof
“I could never work there. I don’t know how you do it,” Suzanne says when I tell her where I work. We sit for a few minutes to chat before I set out with Darin to drive to the first visit.
“I worked one year in a hospital,” Suzanne says, shaking her head at the memory. “I was so unhappy. Home care is a different culture. It’s about relationships and real caring. And as a manager, it has to start with me and trickle down. It’s important to me that my staff feel cared about.”
They are giving me real caring, too. They’ve checked me into the local B and B where I’ll be staying for the next few days. All I can say about it is that if Prince William and Kate, the Duchess of Cambridge, ever visit Yarmouth, this is where they’d stay. It’s as elegant and refined as any royal palace. This morning at breakfast I placed my knife on the silver knife rest – shiny enough to check my lipstick – lifted the lace cover from my linen napkin, and was confronted with the perplexing choice of a warm pumpkin spice muffin or a banana muffin with my morning coffee. The owner, Twyla, has already run ten kilometres, showered and dressed, then bathed and dressed her special needs foster child, Wendy, and tended to a sick dog. She’s also folded laundry, ironed bed sheets (!), and made a delicious breakfast, including perfectly poached eggs and toast from homemade bread, plus the aforementioned muffins. When I compliment her baking she runs to print a copy of the recipe for the muffin I chose.
After breakfast, Darin and I get into the car and he takes us along a quiet scenic highway, then some twisty country roads. We’ve left the rich, fertile Annapolis Valley and are now near the most western tip of Nova Scotia. He turns onto a dirt road, at the end of which is a little lake and the cutest little blue-trimmed clapboard house with two pumpkins on the front steps. It belongs to Sandra, her husband, Leon, and Sandra’s daughter Cheryl, who has a rare genetic disorder called Alström Syndrome.
“There are only eight hundred cases in the world. Same as the number of pandas,” Cheryl tells me proudly. Sandra has become an authority on this condition and she describes the effects on the eyes, ears, heart, and kidneys that Cheryl, now eighteen, has developed: obesity, diabetes, scoliosis, and now, cardiac problems, which Cheryl is beginning to develop.
Cheryl sits in a wing chair beside Leon. She wears a Pink “Le Shopping” sweatshirt, grey baggy sweatpants, and sunglasses because of photophobia and limited vision. “I see lights and darks – just like laundry,” she jokes. Recently, she was diagnosed with a serious heart problem that is well controlled on cardiac medications, but may worsen in time.
“There’s nothing to do all day,” Cheryl grumbles, “so I have to stay home with him.” She points a thumb at Leon, her stepfather, who looks amused at her comment and smiles lovingly at her. “I spend all day in my ‘upstairs zone,’ my loft.”
Sandra picked up the early signs of Cheryl’s condition.
“At nine months, her eyes started wobbling. The ophthalmologist said it was nothing, but my gut told me otherwise. Behind his back, the medical intern called to say, ‘I could get in trouble, but I disagree with him.’ He suggested we get a second opinion and an ERG, an electro-retinogram. Sure enough, Cheryl has no cones or rods.”
Cheryl picks up there. “School was okay, but some kids were mean and made fun of me. When I was thirteen, I went to Halifax to a school for the blind, but I prefer to be alone. I don’t fit in the outside world. I’m a puzzle piece that can’t find its place.”
She gets up, slowly, and makes her way up to her room to get something to show me. In her brief absence, Sandra can say things that are hard to say in front of Cheryl, even though there are no secrets here. They have given me permission to write about everything, and of course Cheryl will read it, too. “We don’t hide anything,” Sandra says. “Cheryl’s personality is difficult and she knows it. She’s stubborn, always has to have the last word. Motherhood was different than what I expected. There’s a poem I read once about going to Holland. You’re expecting wooden shoes, windmills, and tulips, but you land up in Italy with fountains and cathedrals. It turns out to be a positive experience, but it wasn’t at all what you expected. I was devastated. Even now, every year at prom time, I get choked up, knowing what Cheryl and I are missing out on. We’re definitely attached at the hip. She and Leon tease each other, but she adores him and he’s crazy about her. It’s been a challenge to be her mother and her caregiver. Emotionally she’s a teenager, but at times, she likes to be in her childhood years with her Wiggles and Muppets and Teletubbies. On the other hand, she is mature, wise beyond her years. She doesn’t like going to her father but she understands Leon and I need our time together. She’ll say, ‘You two go have a shower together. Get the romance thing going again.’ She gets it.”
Cheryl returns and plunks herself down into her chair. She opens a copy of Anne of Green Gables, turns to a random page, and slowly moves her fingertips horizontally across the long white pages of raised dots (“I’m not a speed reader, you know,” she warns me in case I happen to be impatient) and reads aloud. “ ‘What a splendid day!’ said Anne, drawing a long breath. ‘Isn’t it good just to be alive on a day like this? I pity the people who aren’t born yet for missing it.’ ” Cheryl slams the book shut. “With my condition, I need a lot of sleep. After breakfast, I go back to bed or spend the day on the computer. I’m very isolated. I hate my life. I have no friends. I’m stuck here with Leon all day.” Cheryl scowls in his direction and Leon smiles back at her from where he sits in an easy chair, working on a crossword puzzle.
“What do you like to do? Any hobbies?” I ask.
“I have nothing to do but sit here by myself.”
“What about singing?” Sandra reminds her. “Cheryl likes to sing,” she tells me.
“Yes, but I won’t go in the choir.”
“Cheryl has a hearing impairment. She wears a hearing aid.”
“Yeah and when you call out, ‘Your sandwich is ready!’ it’s so loud.”
Cheryl covers her ears.
“Cheryl’s in good health,” Sandra says, “but needs close monitoring to keep her well.”
“I have a hard life.” Cheryl casts her eyes down to her lap.
“Cheryl’s been a blessing,” Sandra says to me, then looks at her. “You’ve taught me so much.”
“Like what?” Cheryl looks up at her mother.
“How to see not just with the eyes.”
“How can I teach you to see when I can’t see?”
“You’ve taught me how to see with my heart. You’ve taught me courage and resilience.”
“Because of my low vision, I have to rely on my imagination,” Cheryl explains to me.
I tell her she reminds me of the Bubble Boy on a Seinfeld episode. Like her, he was isolated, had a rare disease, devoted parents – cranky and smart, too, with a sharp wit and caustic tongue.
“I don’t watch Seinfeld. I like the Big Bang Theory.”
Cheryl gets up to retreat to her loft, allowing Sandra to speak even more openly.
“What’s the hardest part?” I ask her.
“For me, it’s self-care. When I’m at my worst, trying to juggle work, Cheryl’s care, and thinking about the impending loss of her – because we know her condition will get worse – I feel guilty doing things that are just for me, like exercising, meditation, sitting with friends. And eating properly is so difficult. She’s my daughter and I love her, so why do I lose patience? At times I feel I don’t have a life to myself. I’m a sentry, always on duty.”
“How do you deal with the thought of losing her?”
“The cardiac problems are a new worry. ‘This might take you early,’ I told her in a very concrete way. She says she wants to be buried in a pink dress, with her four Wiggle dolls. I didn’t think she really got it until one day, out of the blue, she said, ‘I’m worried I’m going to die.’ I told her, ‘I’m worried, too, but I’ll be there with you.’ It was a freeing moment for both of us because it wasn’t a secret anymore. What a relief.”
/> Sandra loves talking about her daughter. “Cheryl’s smart. She has an extraordinary memory for numbers, dates, events. She does accents, Australian, Italian, Scottish – she does an amazing Shrek and Donkey. Can recite long stretches of dialogue. It’s like pushing a Play button on a tape recorder and it all comes out.”
A few years ago, Sandra studied to become a therapist and sees private clients and couples in her office. She shows me her business card with her motto printed on it: “Let’s talk about it.” How apt. She’s so easy to talk to it’s difficult to say goodbye, but we have to move on.
From the car, I gaze out at the beautiful, soothing coastline while Darin does the driving.
Next, I meet Don and Betty Smith in their tiny bungalow in which every inch of space is an expression of their life together on the sea – a clock in the shape of a lighthouse, shell-studded picture frames, light switches with sails, a mirror set in a barometer case, a thermometer wrapped in nautical knots. Together, they fished for almost thirty years, until Don’s stroke a year ago changed all of that.
Betty is in her eighties and Don’s almost ninety. Even though he’s sitting in a deep chair, I can see he’s a tall man. And I notice how scrubbed clean and meticulously dressed he is, in pressed flannel pyjamas, a soft red-plaid lumber jacket, leather moccasins with fur lining. As for Betty, I’d be surprised if she weighs eighty pounds, but whatever the scales say, it’s all muscle. Don’s way over six feet, she tells me, and she’s almost five feet – yet you get the feeling she could lift a truck, a dory, even haul a whale out of the water if she had to, that there’s nothing she couldn’t do or wouldn’t at least try. She tells me that she operated the fishing boat by herself and that in her kayak she paddled far out into the ocean, as recently as a year ago. Now, caring for Don is a full-time job, but she loves to tell stories about the good old days and he enjoys listening.
“What did you do for fun?”
“Oh, lots of things. We made our own bread. We went mossing.”
She explains that Irish moss is an edible herb, like the fiddleheads, nettles, and sorrel they also foraged for. “We made perfume and ice cream from it. We’d stand up in the dory and haul the stuff onto the boat with long rakes. Hard work, but we were content. That way of life is over now,” Betty says, her smile wistful. “We made do with little. My kids never had toys or birthday parties, but they were happy. Fishing was how we made our living. It was the only life we knew. Whatever the weather, we went out to sea, but the younger generation isn’t interested in that life.”
Don hasn’t moved or spoken but seems to be listening to our conversation.
“How do you manage with caring for Don?”
Betty springs into action to demonstrate how she pumps the hydraulic mechanism of the mechanical lifter to transfer Don from the bed to the chair and back to bed in the evening, but quickly returns to her favourite topic – his, too, by the smile on his face.
“Oh, those were wonderful days! Our children swam in the icy ocean water, played together, everyone. I fished beside Don for twenty-five years and raised five kids on the island.”
“She grew up the kids on her own,” Don says in a slow voice, his speech slurred.
“I was the hired man, sat in the stern. Don was the captain, and the fisherman, always. We halibutted, swordfished, lobstered, dragged for flounder. In Clark’s Harbour and on Cape Sable Island, in summer, fall, and spring. Everything was done by hand. Halibut are huge fish. I don’t know how I had the strength to pull them in. Our hands were cut up and rough. At night, I’d wash Don’s hands in hot, soapy water, then soak them in baby oil.”
I kneel beside Don and pick up his massive, heavy hands and turn them over to examine them. There are more stories here than a fortune teller could read, but it’s now up to Betty to tell the tales of his hands and their life together on the sea.
“Nowadays, they have heaters on their boats. We didn’t have that back then, oh no. Old boats didn’t have a shelter; you were exposed. One time a helicopter had to drop us food and coal.”
“How did you keep warm?”
“Hard work. Kept on moving. Never stopped. That’s how you keep the blood flowing. For me, an hour working outdoors is better than any medication.”
“What bait do lobsters like?” I turn to Don.
“Herr … ing, mack … erel,” he starts slowly, and it’s Betty to the rescue.
“We also trawled and hand-lined for cod. Those were fun times, even with all the accidents – one with an outboard motor. His hand was bleeding like stink. Two weeks later we went back to shore – it was fourteen miles from land – had it x-rayed and found two fractures.”
“Betty jerry-rigged … something to make a … splint for me,” Don manages to get out.
“We set up a fishing camp, started out early each morning, depending on the tides and winds. Had five children, home-schooled them on the island, but they had to have French, so for that they had to go to school on the mainland. Now, I have twelve grandchildren and twelve great-grandchildren. Then, one day, I was sawing wood with the weed-whacker when Don said, ‘Something’s wrong. I can’t move.’ So we brought him to land and indeed it was a stroke. Then, a few days later, he had another stroke in the brain stem. When they brought him home from the hospital, they put him in the bed, propped him up with pillows and said, ‘He’s all yours.’ It was up to me. He couldn’t walk, but in six weeks, he was up on his feet. The kids and I, we make him reach for things. I tied a rope around his foot so he can pull his leg up. Every morning we get up at half past four and right away I start exercising him so he don’t get stiff. Everything we do is part of his therapy. Everyone stays positive. Even the cable guy who came to fix the TV was encouraging. I never say you can’t do anything. I always say you can. You have to try.”
Every morning Betty bathes Don, dresses him, takes him to the bathroom, and gets him into his wheelchair for breakfast. In her spare time, she makes quilts. She jumps up to run to her sewing room and returns in an instant with an armful of handmade, cheerful quilts with blocks of maple leaf, cathedral windows, churn dash, and pineapples, all made from old clothes. She shows me her garden where she grows potatoes, peas, lettuce, and flowers – gladiolas and dahlias.
Her daughter Leona drops for a visit. Betty whispers to me, “Leona’s a dear, but a worrier.”
Leona sits down in the closest seat, her Dad’s wheelchair. “I just live down the street and am always popping in to check on them, to make sure they’re okay. I worry about them all the time.” She joins her mom and dad in their reminiscences of life on the sea. “I liked being a Capie. I’ve grown up all my life along the water. I know the dangers. My brother has been overboard twice. Every male in this family is on the water at the start of lobster season. I knew people who’ve drowned. We know if a boat is missing. You’re always listening to the CB radio to hear if the boat’s been found.”
Leona looks anxious but Betty is fearless. At eighty-five she still drives and stays active in the community. “I take Don to the day program, then I run a few errands and go to the caregiver support group. Some people there had to put their spouse in a nursing home and feel bad about it. But they had no choice. They had Alzheimer’s and were wandering or aggressive. Don wouldn’t get far, and if he tried to beat up on me, I’d give it right back.” He looks at her fondly and tries to smile, but is unable to fully activate the muscles in his partially paralyzed face.
“How long do you think you’ll be able to take care of Don by yourself?” I ask Betty.
“It depends on my health. Once, I fell on top of him and broke my wrist, but I managed to pick him up. He’s forgetful but I am, too. I guess at our age it’s allowed. The day program is so good for him and for me, too. At first, he didn’t want to go, but now he likes going.”
“What’s your favourite thing to do there?” I ask Don.
“Play … poker with the girls. I don’t want … to go to one of those death places,” he manages to say, attempti
ng to grin.
“That’s how he calls the nursing home,” Betty says. “I hope to keep him home.”
“When I wake … up in the morning, I wiggle my fingers and squeeze my hand to get … the circulation going. I dream I’m still … out on the boat with the guys, then I realize … they’re dead and I’m still alive. What are … you going to do? Life … goes on until it stops, don’t it?”
There’s no other place for Betty to be but beside him, and for him but beside her.
It’s time to move on. Reluctantly, I get up and say goodbye. I take another glance around as I leave. No one does homespun coziness like Maritimers. They decorate with a sense of home as a refuge, a place for comfort as well as shelter, a haven you’d never want to leave. Perhaps it comes from an awareness that life is tough, so at least at home you are comfortable and safe.
The VON office is the hub of all of our visits, so Darin drives us back there to get the next address and set of directions from Suzanne. It’s like we’re on the Amazing Race – Team Darin dashes in to a pit stop, gets new instructions, and we race to the next destination. But once we arrive at each visit, I slow down, quiet my mind, and remind myself of what Suzanne said: stories take time.
As we drive to the next visit, we pass farmhouses, where all the porches have easy chairs, set up in position for conversations, as if inviting you to stop and sit awhile. We drive on Ye Olde Argyle Road, a twisting country lane along the coast. The ocean is a constant backdrop and the landscape is dotted with green, blue, and white farmhouses nestled in among the trees in their glorious fall colours. As we drive past the edge of the Bay of Fundy, Darin points out where the tides come in by late afternoon. “Whoosh!” he says with a sweep of his arm. “A tidal bore comes in one big wave, all at once. If you’re not careful, you’ll be stranded. These tides can beat a racehorse.”
At the next house, I can’t tell who’s more bursting with pride, the client or his nurse.
