by David Ward
Sixteen
It’s hard to know what to say to someone who has amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, as ALS is called in parts of the world where people know about baseball’s New York Yankee captain who died from the illness in 1941. ALS causes the muscles we normally move voluntarily to gradually break down, weaken, and waste away. Those afflicted have difficulty speaking and swallowing, until gradually they become disabled and highly susceptible to infections, particularly pneumonia. But that’s not the worst part — it’s that this gradual paralysis occurs while the patient remains mentally alert, rendering the sufferer a prisoner in their own body. That’s the horrific situation that McCallum’s Margaret MacDonald — a woman of considerable creative talent and entrepreneurial spirit — was in, at fifty-two years of age. And that’s the circumstance she so bravely spoke with me about at the St. John’s group home that provided her with care through the final stages of her life.
“It might have been better to stay in McCallum for [husband] Terry’s job,” she says, her speech slurring slightly, a symptom of her sickness. “But I couldn’t stay there. When you can hardly walk, and you live on a steep hill in a small house that’s not set up for somebody who’s got Lou Gehrig’s Disease, you have to go someplace where you can get some help. Like when you can’t get on and off the ferry without using a stretcher and all the men you need to carry it. Even when [McCallum residents] Anna [Simms] and Barbara [Durnford] would come up the house to look after me . . . how can they be expected to lift me all the time? My right arm and leg don’t work, I can’t walk, I need a wheelchair, and now my left side is getting weak.
“And I cry all the time,” she adds, in reference to her tendency to weep at unexpected moments, another symptom of the disease as well as the circumstance.
Originally from the Avalon Peninsula’s Point La Haye region, Margaret moved to McCallum as a mail-order bride after writing to Terry, a fisherman and McCallum’s ministerial layperson. I ask how he is doing. “He’s understandably upset,” she says. “He’s got bad nerves. He tells me he doesn’t know how he’s going to get along without me. But he’s here every day, and he feeds me — that’s when we talk about things. Like what I want done when I can’t breathe no more, because I don’t want life support.”
Margaret’s passing was a highly significant McCallum occurrence, not just because she was friend or family to so many on the Southwest Coast. Nor was Margaret’s demise only noteworthy because it represented the loss of a citizen who actively supported many essential services. Margaret’s death was of even greater consequence to McCallum because no one in this close-knit community got to avoid watching her horrible disease conduct its deadly business.
We all saw Margaret’s earliest symptoms and wondered if they could be corrected — if they were simply her body’s response to the drugs she took as part of her lifelong fight against serious arthritis. We wanted to believe that her illness could be managed by those closest to her. But we soon saw that as wishful thinking when her condition escalated into something requiring two home care workers and outside support from St. John’s.
We saw how it took more than ten men in total to get Margaret on a stretcher from her home to the ferry and onto a waiting ambulance at the other end when she required further medical attention. And, while it’s funny now, we all heard about it, over and over, because Margaret didn’t suffer silently — a characteristic that, at the time, was difficult for listeners to bear but, in hindsight, was a warning horn in the fog. It’s now easy to see that, before her disease was diagnosed by doctors, Margaret knew something was seriously wrong and was crying out for help.
So while Lou Gehrig’s Disease is obviously most painful for the one who has it and those within their immediate circle of support, it is important to acknowledge that, in a tiny outport, it is an excruciating test for everyone when we have to witness serious sickness. It’s difficult to watch from such a short distance away, when a strong woman like Margaret MacDonald is so savagely beaten down over the homestretch.
It’s also worth noting that Margaret’s battle with Lou Gehrig’s Disease is not the only tragedy that her McCallum family has faced. There have been others, including a significant rockslide. But it’s impossible to comment on that 1981 McCallum occurrence that almost put an end to the MacDonalds’ outport presence forever without first honouring a major 1973 landslide that swept four homes into the ocean in nearby Harbour Breton, killing four young children from the same family.
“You’re right,” Liz MacDonald says. “Our rockslide was a big thing for we McCallum people, but I don’t want to sound like we suffered like those poor people in Harbour Breton did.” Liz gently adjusts the angle of her cane. Slowed by hip ailments, her ambitious eyes defy her uncooperative body. “There’s no comparing what happened to us, down cove, to what happened when those four young Hickey children got killed in Harbour Breton.”
MacDonald was a courageous commercial fisher for much of her life, yet the thought of what she’s seen is a lot for the sensitive seafarer to think about. So I give her a chance to collect herself before I ask what unfolded when an untold number of rocks fell from a McCallum cliff, destroying one home and forcing four others to relocate to safer ground.
“Four homes had families in them,” she clarifies. “They belonged to a father and three of his sons, and another was being built new at the time by a grandson. That’s the one that the rocks beat down the worst — the one that was being built new. A stage [a dock] got beat down too. Then people went up in a helicopter to take a closer look at the hill, and they said it wasn’t safe for us to stay down cove, so we all resettled someplace different. [George and I and our children] went on road [another McCallum location]. Henry and them moved into the house he’s still in behind hydro, but all the others left town. And that’s a good thing, because more rocks came down after.”
It’s when I ask Liz if she recalls her feelings from that fateful day — when a mass of granite came thundering down around her home — that she gives me her most hearty response. “Oh yes, that’s what I do,” she says, with considerable sadness in her voice and a bit of moisture in her eyes. I learn later that such memories trigger all kinds of thoughts for the MacDonald matriarch, from the events of that scary day in ’81 to the loss of George in ’96 when he choked on his chewing tobacco. “Oh yes — that’s what I do.
“But that was a much more terrible accident in Harbour Breton,” she repeats. “We were so lucky, thank God, that none of us got hurt. It could have been much worse for everyone living down cove. Just think about it. There were five families — a father, three sons, a daughter, a grandson, the sons’ wives, and fourteen children between them. Look at that big pile of rocks out there now, David, just past Roland’s stage, and just think what could have happened.”
Geography, genetics, the weather, government . . . they all conspire to make life hard around here. But no matter how much I criticize Newfoundland’s authorities for their antiquated qualities, I have to say that government’s ineptness is nothing compared to that of the province’s churches, where they operate in ways resembling early human history. Like the summer of 2011, when the Anglican Church stripped McCallum’s lay reader, Terry MacDonald, of all minister-like privileges because he took a common-law partner after his wife, Margaret, died from Lou Gehrig’s Disease.
I imagine Terry was not surprised by the church’s choices. Few of us reach midlife without realizing that all kinds of organizations, and many of the people employed to manage them, care more about themselves and their beloved rules than they do those who pay their way. So these paragraphs are not about Terry’s loss or the church’s archaic ruling. This passage is about those who pass pious judgement and how their actions demonstrate how little they understand that their institutional survival is dependent on them regaining relevancy in the lives of their declining clientele.
Like when the local bishop said in a newspape
r report that he did not intend to make a public statement regarding MacDonald’s defrocking. Why not? Aren’t we all aware that people in powerful clerical positions are required to be transparent and accountable? Doesn’t everyone know that religious institutions have for centuries betrayed our trust via acts of child molestation and gross error in judgement as it applies to native persons and people of different — or perhaps not so different — sexual orientation? Or are church champions just so ignorant, arrogant, and self-serving that they cover their own needs ahead of those within their diocese? Not that I believe that most people want, when the going gets tough, to turn and run and hide behind outdated “no comment” comments, but that such unwillingness to work for the majority makes the empowered appear cowardly.
Whatever the reasons behind the bishop’s failure to be accountable for the stripping of MacDonald’s ministerial status, the outports have many questions that need to be addressed. Like, with so many unnerving events occurring in the communities on death row these days, how do church decision-makers see their isolated members’ futures unfolding? And how will these events affect the community’s efforts to access their god? Questions that anybody in a position of power today should know they have an ongoing responsibility to respond to. Or are the answers to these inquiries also secret?
She doesn’t want to answer the phone. It’s probably her father and, if it is, she expects he will be angry again. Not angry with her, but she has trouble listening to him rant these days. Last time he phoned he was mad at the man who sells him lumber. “I’ve bought things from that guy for thirty-three years,” he reminds her. “Yet every time I need two-by-fours, they put the most cracked and crooked on the truck and take them to the ferry. I should ship them back but I don’t, and they know that.”
It’s springtime — a time of hope — but things have not gone well for him. Things have not gone well for her either. What with her mom dying, her life has been turned on its head, and her schooling has suffered badly. She feels a lot of shame and guilt for not answering the phone, but she doesn’t believe she has it in her to tolerate his talk tonight. It’s the final week of her second semester at university, and she still needs to write two exams and finish an assignment that she has already received an extension on.
She’s also out of money, and the school’s food bank is running low. The student loan she is hoping to receive from government for spring and summer studies won’t be in until the end of May, and even then she won’t qualify for it if she doesn’t attain the academic success they insist upon — scholastic achievement that has always come easy for her but is no longer a guarantee, it seems. Plus, the school counsellor who has given her so much support working through these matters has closed her office until the fall. And no way is she going to ask for financial help from home.
“Funny thing though, about this work I am doing,” she whispers to herself. “People can build bridges, boats, or tall buildings, and others will make them famous for their work. But if somebody puts the same effort into their hurting heart, not only will no one tell them they are a hero, some fool will say that person has a mental health problem.
“There really isn’t enough time [to be thinking about such sensitive things], though,” she adds, agitated. The wealthy owner of the fish-and-chip shop where she works part-time is pestering her to put in more hours. It isn’t all the married, father-of-three asshole is pressuring her to do, but she insists that isn’t part of her pain. “Enough of this craziness!” she screams to no one, when she’s once again overwhelmed with thoughts about the disease that stole her mother from her. “I’ve got work to do,” she says, “and all the worry in the world isn’t going to help me get ready for tomorrow morning’s exam.”
She picks up the phone. “Hello? Oh, hi Father. How are you? Good. Oh, I’m okay, still busy with school, you know, but looking forward to coming home for a short break. I hope the ferry is back [from refit] by then. What’s that? Yeah, I know you do, Dad. I miss her too.”
Seventeen
The children who grew up next door to my McCallum home have recently moved to St. John’s. The oldest went to university, and his sister followed a year later to make her way in the work world. This pattern is not unique to McCallum, of course. Families throughout rural Newfoundland experience similar movement among their offspring. But it is especially difficult watching your loved ones leave on a boat the way that outport people have to. Something excruciatingly painful happens when that boat breaks away from the wharf, and you’re left staring at a young, forlorn face disappearing into the fog. That’s if you’re even still standing there. Most McCallum people will head back to the house before that unpleasant experience can occur, while others won’t come down to the water at all.
Yet the entire community prepares these kids for their exit. “Unless you want to fish, and you’ve shown no signs of that,” they are often told, as everyone gets them ready for the inevitable, “there isn’t anything for you here once you’re done school.” Uncles, aunts, parents . . . they all say, “No, my dear — one day you’ll have to leave McCallum for the city. St. John’s, Halifax . . . or maybe you’ll go farther, to Toronto or Calgary.” Words that slash and tear at a parent’s heart when they have to make such a statement.
“It is a terrible thing to have to see your children leave,” the forty-year-old fish-farming father of the two young people who previously lived next door to me says. He and I are sharing in the shovelling of snow off the boardwalk that runs between our homes. “I know it’s normal,” he adds, casting his eyes away so I can’t catch him crying. “I want them to go out and find their way. But I’d be lying if I said it doesn’t kill me that they’re not here.
“We took the bus into St. John’s to check on them a few weeks ago. They’re doing good. My boy is doing a good job at school, he’s got a girlfriend, and he knows how to manage his money — better than his father does, that’s for sure,” my friend jokes, trying to find humour in an emotionally awkward situation. “We still do our best to help them out — like pay their phone bills, so you know they can call if they need to. But, really, the boy’s doing a good job at school and managing his money.
“Our daughter is doing pretty good too. She’s had no problem getting jobs, and when they’re not what she wants — say the hours aren’t good, or if her job is too far from where she lives — she goes and gets a new one. She’s got an apartment and a roommate, she pays her rent, and she’s still got a little left over every month for shopping. Yes sir, the girl loves to shop. So while I’m afraid to think of my little girl going downtown, it does make me happy to think of her buying another pair of cheap earrings at the Avalon Mall.” Then he looks away again, this conversation clearly killing him.
I’ve seen where a youngster destined for college or university leaves on Labour Day, still possessing considerable childlike characteristics, only to return at Christmas as an adult. Like Hermitage’s Trent Hollett, for example, Hermitage being the tiny town where our ferry takes us, McCallum’s gateway to the world.
Trent left home thinking like a high school student who hails from a town of four hundred people and came back for the holidays an independent-thinking soul who had successfully completed a semester at the College of the North Atlantic’s St. John’s campus in the school’s popular paramedic program.
Not that I know Trent well, but I have seen him hanging around his mom’s store. Mostly behind the snack bar, digging in at dinner when help is needed or filling his own face. While I always thought Trent to be a clever, respectful kid, he was still, understandably, very much a mother’s son. So when I spoke with the eighteen-year-old about his first semester at college, I wasn’t convinced he was the same guy. His voice sounded the same, but the words he used and the manner in which he delivered them were much more mature than I remembered. That’s what fourteen weeks in an intensive program, in a mid-sized city, far from everything you’ve ever known, can do for a young man or wo
man — enough so that I had to tease Trent about the changes in him that happened while he was away.
“It was a big adjustment,” he admits. “I’m not just talking about the schoolwork either. I mean, it is a difficult program. Every day they give us more and more information that we need to take in, but the most challenging part for me was leaving home.
“Living with my dad helps a lot. Right from the start, knowing where I was going and who I was going to be with [was] always better than not knowing. But it’s still not the same as living in my Hermitage home, in the town I was raised in, eating my mom’s home-cooked meals. And there is a lot of support here [in Hermitage]. Even now, when I walk around town, my old teachers want to know how college is going for me. Plus, I wasn’t the only kid from here who had to leave home and work hard. I’ve got friends studying nursing, business administration, taking university entrance courses, buddies from Hermitage, Sandyville, and Seal Cove.
“Just getting around St. John’s can be tough. Plus, my dad doesn’t actually live in St. John’s — he’s in CBS [Conception Bay South], so that means a twenty- to thirty-minute drive to school every day. And I say twenty to thirty minutes, but that’s only if weather is good, when sometimes it isn’t. No sir, winter driving is not good some days. You’ve got to take it slow if you want to stay safe.” I smile. Trent sounds more like the common-sensed young man who came home from paramedics’ college than the schoolboy who went away.
Soon another learner will be leaving. A McCallum girl. The whole town feels heavy in anticipation. You can already see the pain on her mother’s face. Her grandparents are showing some wear and tear too. Since she was a baby, she’s run in and out of their home more often than anyone can count. Her little brother is also carrying a large load regarding her approaching departure, and her friends are experiencing considerable sadness. Yet the young woman who is leaving will be fine. I hear she wants to be a teacher. She’s certainly had some good ones to learn from, and she knows how to work today’s technology, what with online education being such a big part of today’s outport programs. Plus, her parents have made a point of getting her and her brother in and out of the city for everything from swimming lessons to carrying on with their cousins, so her adjustment to townie life won’t be as big as it might have been had she stuck close to home.
