Bringing It Home

by Tilda Shalof

  I wasn’t expecting such an upbeat, inspiring story about pain.

  Next up is Connie. She gives me the “Reader’s Digest version,” the abridged nutshell of her pain story. “Single mom. Oncology nurse. Breast cancer. Chemo. Radiation. Now, constant bone and back pain. There were no bone metastases on my scans, so ‘there’s no reason you should be in pain,’ my doctor said, but let me tell you, I was in pain. Did she think I was faking it? But here, these people don’t write me off as crazy or looking for drugs. ‘This is not in your head,’ this pain clinic doctor said. ‘Your pain is real. It’s peripheral neuropathy related to the chemo. That won’t show up on a scan.’ Here, I get a sense of genuine compassion and empathy. I’ve been to hell and back, yet when I walk into this clinic and meet people with genuine compassion, it makes me feel I’m not alone. These people are on my side. It’s a partnership. They’ve given me more to add to my tool box for coping with this thing. They gave me options, rather than sitting here feeling hopeless. My pain is seven out of ten most days. Today it’s nine out of ten. It’s a rough day, that’s why I couldn’t come in to meet you in person. But I always say, if you’re crying into your beer, you’re just watering it down, and I don’t want to that, do I?”

  I met Nurse Manager Andrew Ward back at the AGM, and seeing him again today I remember his fast-pace tempo and trademark high-energy passion for his work at VON. He’s committed to bringing healthy breakfasts to school kids. It’s obviously a real need; for some of these children, this meal is their only secure source of food.

  “The program is for everyone, not just poor kids. It levels the playing field, eliminates stigma. There’s more participation if no one is singled out. There’s no reason anyone should be hungry in this country. Research has shown that it takes twelve tries for a kid to get used to a new food, but if they eat with peers, it takes only four exposures. Accessing healthy food is not just about poverty, it’s about mental health, too. Grandmothers cooking in the kitchen? Sitting down to eat a meal as a family? Those days are long gone. We bring in fruits and vegetables from local farms. We want every child to have the opportunity to have a healthy meal to start the day. We need to get away from the fast-food thinking around food.”

  A few months ago, I would have wondered what nutrition or children’s breakfasts had to do with nursing. Now I know that they have everything to do with nursing; these are pure nursing concerns.

  If I didn’t know that Liz Mikol was a nurse, the sight of her umbrella hanging from an IV pole in the corner of her office would be a tip-off. That is such a nurse thing to do – unexpectedly playful and creatively practical – and Liz is sooo nurse. With her take-charge, go-to, can-do attitude, she’s the nurse manager of the nursing station on Pelee Island, just off the shore of Lake Erie, where emergency services can be reached only by ferry, helicopter, or plane. Liz speaks in short bursts that have the staccato rhythm of a checklist, like the ones pilots use. Her mind is quick but so organized that it’s easy to follow her.

  “They called me. On a Saturday. ‘Open the nursing station on Monday,’ they told me. And I did. Before that, I’d done everything as a nurse. Oncology? Check. General medicine? Check. ER? Check. ICU? Check. But primary care? No thank you. Not interested.”

  “That was my reaction, too. At first.”

  Liz nods in agreement. “I’m a very fast-paced person. Didn’t think I’d like it. Was reluctant at first. Now, I love it. It’s a different type of nursing. For sure. You get to know your patients. They depend on you. You’re out there on your own. It’s all up to you. I like to work hard – seven days a week. Then I discovered Pelee Island. It’s exactly like the TV show Corner Gas. Everyone knows each other and is involved in each other’s lives. In a good way.

  “My husband is a nurse, too. We get to the island by ferry or a twenty-minute flight in a small plane. It depends if there’s weather. We are only around two hundred, but in the summer, the population swells to thousands. We have an inordinate amount of motor vehicle accidents, most due to driving under the influence. It’s a huge problem, especially in the summer. I’ve taken a suture course and we’re well stocked with antibiotics, epinephrine for anaphylaxis, and tetanus vaccine. Once, two girls were in a car accident. One broke her sternum. Huge risk of puncture to the heart or the lungs. The weather was bad. We couldn’t bring them in. Videoconferencing with a camera and a stethoscope to an ED doctor in Windsor, plus IV fluid resuscitation, back boards, and neck braces, kept them stable until the weather cleared and we could transfer them to Windsor. If they’d been bleeding we’d’ve had to call the air force at Trenton to chopper them in. Those girls are just fine now. The nursing station can be busy, but that’s okay, because I’m a go-go-go type.”

  “I see that.” I can hardly keep up with her. Luckily, I write fast.

  “One thing – I don’t like snakes. There are a lot of snakes on the island. All harmless, but still. You have to be a nature lover to come here. I’m not. I’m a city girl. I’m not a hiker, not a biker, not a birder. What I like is people. The people on Pelee Island are the warmest, kindest people you’ll ever meet. It’s a real community. I’m a Toronto girl, so it’s different for me. On the island, they go out of their way to help you. They love the nursing station. They made us king and queen and put us on a boat around the island. It’s like family. In the winter, nothing is open. There are lots of coyote, deer, birdwatchers. We have a sanctuary here for migratory birds. In the summer we get a lot of American tourists. Artists and writers, even Margaret Atwood has a place on the island. There are turtles, snakes. Police only in the summer, not the rest of the year, and we even have a winery.”

  She hardly stops for a breath and I can’t stop my note-taking, even for a moment. There seem to be a lot of high-energy, fast-talking people at VON.

  “ ‘You must be kidding,’ I said when Frank suggested we move there, but he fell in love with the place and then I did, too. We are so close to the people on the island. Neighbourhood parties? Potlucks? I never experienced that in Toronto. Here, people rely on each other, help each other, the doors are open. Most people in Toronto don’t even know their neighbours. My husband was cutting wood. A neighbour came to help. It’s the Pelee way. It’s something unique and you want to be a part of that. There’s a homeless man who lives in a shack with holes in the ceiling. There are hundreds of cats and he hoards paper bags. People invite him into their homes, where he showers and has a meal. We all look after him. Where else do you find this? Anywhere else, they’d have condemned the house. Written him off. We bought a house on the lake. It would cost a few million dollars in Toronto. In their wildest dreams they never thought they’d get a nursing couple to stay on the island. It’s great for them and for us. Yes, it’s a sweet life.”

  BUTTERFLIES AND BALLOONS

  “PEOPLE HAVE A NEED TO CREATE rituals that are meaningful to them,” Auedrah DeHeus says. She works with the Kids’ Circle, a support group for children with a loved one who’s dying and for children grieving a loved one who has died.

  “Unfortunately, it was a string of copy-cat teen suicides that got this program off the ground. Every time there’s a tragedy in the community, there is an upsurge in need for more groups like this.”

  They hold a butterfly release event. (It used to be a balloon release until it was discovered that birds got caught in the deflated balloons or choked on them.) The butterflies are donated by the local nursery, and a ceremony is held where the kids open the box and allow their butterfly to fly away. In another event, the kids make T-shirts with pictures of their loved one on them and decorate them; they create memory boxes and garden stones of remembrance.

  Auedrah believes we need new rituals like these because a lot of people don’t believe in organized religion the way they used to, yet are still searching for spiritual expression.

  “Most children believe in heaven,” she says, “but that seems to change as they get older. When it comes to dealing with death, many turn to God or some s
ort of spirit that gives them hope that their loved one is around all the time.”

  She tells of a young Ojibway woman who was grieving the loss of her sister, whose name meant sweet, flowing water.

  “She was cynical yet kept coming to the group,” Auedrah says. “The day we released balloons filled with helium, she followed her balloon, which eventually landed in a stream. That was a very meaningful moment to her, especially considering her dead sister’s name. Somehow that helped bring her some peace.”

  Auedrah tells me of a teen who was bullied at school. When his dad died, his peers said things like, “Your dad died because you’re stupid.” The boy told only Auedrah about his plan to kill himself. He even mentioned a rope he’d hidden behind some hockey sticks in the garage. Auedrah called his mother and asked her, “Are there ropes in a box behind the hockey sticks in the garage?” There were. Together they took her son to the hospital and stayed with him there.

  “And yes, I do attend deaths in people’s homes and even some funerals,” Auedrah says. “They always tell us not to get attached, don’t they? But how can you not? And why shouldn’t we get attached? If we lose that genuine compassion that VON is known for, that we pride ourselves on offering, then who are we? I love becoming attached to my clients. It adds so much to my life.”

  Originally, the program was kept secret to protect the children’s privacy, but that only reinforced the stigma of death. Bringing it out of the closet became more important than keeping it on the down low, under wraps.

  “Most people want to share their stories, not keep them to themselves, don’t you find?”

  Yes, I agree. Most people are longing to tell their stories. In fact, they’re desperate to share their stories with someone who will listen and acknowledge their experience. More people want to be seen and known than anonymous or forgotten. In fact, many people write to tell me they have a book inside them. I encourage them to write it. “What’s the point?” they often ask. Do it for yourself, I tell them. Or write it for your family, your friends.

  To learn more about stories, I visit Nurse Jane Parr in her office in the Kids’ Circle building. Jane trains volunteers to visit people who have life-threatening conditions and help them record their life story, or write letters, or create a scrapbook or video for those they are leaving behind. She suggests questions to cue people, to spark memory and conversation. Documented in the person’s handwriting, the lost art of storytelling in the person’s own words – it’s such a comfort to those left behind.

  “Our society is so different nowadays,” Jane laments. “People keep to themselves and keep themselves private. Neighbours don’t even know each other. Helping connections used to spring up naturally within a community without formal organization, but it doesn’t always happen like that anymore. Families are often spread out over the globe, people don’t want to interfere with others, or they don’t know how to help.”

  I return to the room where Auedrah holds the Kids’ Circle sessions and I sit on the child-sized chairs and read the permanent-ink messages written on the pink, green, and yellow rubber, interlocking tiles:

  I hope you are having fun up in heaven.

  Sorry for what happened. Love, Me.

  You are with MJ reads another message with a hand-drawn picture of Michael Jackson standing with the artist’s father in heaven.

  I wish I had died with you. Then we could be together.

  I look up from reading the tiles to meet Helena Walls, who has just walked in. Helena’s husband died two years ago and despite her own grief at this fairly recent loss, she’s here to tell me about her children’s grief and their road to healing. They were her greatest worry, especially since two of them witnessed their father’s death.

  “Each of my three children know when I’m having a bad day and they are very kind to me.” Helena dabs at her eyes with a tissue, then puts it into her purse as if to say there will be no more crying – at least not today.

  “Today is a good day and I’m happy to talk with you,” she says.

  That’s good, because I was feeling worried about having Helena relive her tragedy, but no, she says, she wanted to come in to talk with me. She hopes that sharing her story will help others, as others’ stories have helped her.

  “Aaron was so full of energy, so vital. He’d gone off to the marina with my two older girls to check on the boat. My son, who was still a baby, stayed home with me. A few hours later, when two police officers showed up at my door, I thought nothing of it. ‘There’s been a boating accident,’ they told me. ‘What does this have to do with me?’ I thought. ‘At the marina,’ they said, and then it hit me.”

  Only later was Helena able to piece together what happened. Their eight-year-old daughter had been swimming, wearing a life jacket that was attached to a rope tied to the dock. Suddenly, the rope loosened and let go. “She was beginning to float away and wasn’t able to get back to the dock. With no hesitation, Aaron dove into the water to save her. He managed to get our daughter to safety, but he couldn’t make it back himself. We don’t know why. He was an excellent swimmer. But the two girls stood on the dock and watched their father drown. They were devastated.”

  The two sisters withdrew, wouldn’t talk to anyone. “They became empty shells of their sweet, innocent selves. They had been such happy children before the accident. They had lots of friends, loved to laugh and play with their friends, but now, they stopped talking, stopped smiling. They blamed themselves for what had happened. The older one had flashbacks every time she heard the sound of running water, even the sound of the shower, or toilet. They used to love swimming but were now traumatized around anything to do with water.

  “I didn’t know how to help them. Then we met Auedrah, here at the Kids’ Circle. They would only talk to her. She showed them that nothing they could have done would have made the outcome any different. Their dad did what any dad would do – save his child – and he doesn’t blame them. His kids were everything to him. Auedrah helped them let go of their guilt. She saved the girls’ emotional and mental health. Here, they could grieve with other kids who know what they are going through. They are completely back to themselves, enjoying life again. They are both good swimmers and love the water. They now remember their father as the incredible, fun dad he was, and not only the horrible circumstances of his death.”

  She points to one of the pink tiles. That’s her daughter’s handwriting.

  I miss you tucking me in at night, Daddy. You were my best friend.

  I’m meeting Jackie Wells for lunch, but maybe I should grab a snack beforehand? Judging by my last encounter with Jackie – last June at the annual general meeting – there’ll be no eating. With Jackie, all I can do is listen and think, not cut up food, lift a fork, chew, and swallow.

  “Hellooooo, there!” She arrives in the restaurant, suddenly appearing in front of me, as if out of nowhere, and wraps me in a tight hug. Here again are those bright blue eyes, tight curls, that vivacious presence. We sit opposite each other in a booth, to chat and – hopefully – eat lunch. I want to have my say first.

  “I gotta tell you, Jackie, when we first met, I had no idea what you were talking about. ‘Home care.’ ‘Community supports.’ I couldn’t picture it. I thought nursing was taking care of sick people. I thought health care was the hospital. After all, I’ve spent thirty years of my life working in hospitals.” A fact that now makes me think, Look at all I have missed out on.

  “Health care is not doctors and medical procedures,” Jackie jumps in. “Nor is it hospitals, where the focus is disease and diagnosis. Do they ever look at the person? Do they even get to know the person?”

  “But how can we? Who has time to get to know people?” I say, getting a word or two in edgewise. “Some nurses say getting to know the patient makes it harder to care for them.”

  “I would challenge that,” Jackie says, and I am reminded of her favourite expression. She laughs her hearty laugh that seems to contain her smile, too. “Now
I remember why I didn’t work in the hospital for long.”

  Jackie is now eating gluten-free so we order pad Thai for the rice noodles.

  “Many nurses say that the emotional aspect of nursing causes burnout. Even young nurses worry about this. They always ask me, ‘How do you handle your emotions?’ They are taught to hold back and detach themselves, but few can do it.

  “Because it’s not human. I would challenge that. That approach only gives them the message to be afraid of their emotions, but our emotions are what fuel us as nurses. We should encourage nurses and doctors to be more human and give the kind of care to their patients that they’d like their family member to receive.” Jackie looks incredulous at the very idea of “burnout,” yet it’s widely discussed and researched in my profession. She seems to consider burnout a myth, not the truism some nurses fall back on to explain their discontentment with, or disengagement from, patient care.

  “I don’t believe in burnout. Burnout is not from caring too much, it’s from not caring enough, starting with ourselves – self-care. Everyone needs to do that, but nurses have to take extra-good care of themselves in order to do this work. I would challenge the whole notion of burnout.”