Gentleness is at the heart of a book about learning to live with loss
By Louise Kinross
Christa Couture is a Canadian singer-songwriter, broadcaster and author of the memoir How To Lose Everything. She describes herself as Indigenous (Cree), queer, disabled and a mom. As a child Christa had part of her left leg amputated after chemotherapy failed to cure her bone cancer. Later, two of her children died, one after a heart transplant, and her marriage collapsed. "For people who are going through something similar, I hope the book is a friend, and the take-away is that they feel that they're not alone," Christa says. We spoke about her experiences with cancer, health care, disability and death.
BLOOM: You were hospitalized for months while going through chemotherapy. As an 11-year-old, what kind of care made a difference?
Christa Couture: I remember the first nurse I had on the very first night of my first hospital stay. I was so attached to her for the next two years because she was my first. But hospital care really comes down to people. Even as an adult, it's a crap shoot. It's not good or bad nurses, it's the chemistry between two individuals, or people having good days or bad days.
What made a difference, I think, were care providers who had the capacity to talk to children like they had some autonomy. There were so many doctors who would come in and ask my mom how I was doing when I was sitting right there. Luckily she would say 'Ask her.' It was such an uncomfortable experience and little things like that would happen so often.
With physical exams, someone wouldn't take the time to tell me what they were about to do, or to ask for my permission. As an adult, I find they talk you through that more, but as a kid they didn't. Perhaps they thought I couldn't understand, or they had a different idea of consent.
BLOOM: You wrote about 'being safe with my fellow cancer kids.' But most of the friends you made in hospital died during your treatment. How did that impact you?
Christa Couture: I definitely felt like there was my life in the hospital and my life outside the hospital at school. In a way, the hospital life was where it felt more real, maybe because we were alike. We were all bald and we were all sick. I would go to school and I was 'the one,' and I felt so out of place.
But over time in the hospital space as kids were dying, I became an anomaly because I didn't die. I didn't have words for how there is no answer, and what a mystery that was, and why wasn't it me and why was it them?
On the other side of treatment I felt very disconnected from my peers and I grew up fast. For many years I had a sense that I didn't have much time, or that I'd somehow been granted this extra time. Because all these people around me had died and I didn't, for no reason at all, I thought I might not have much time left, even though I was pretty much in the clear from my cancer. I only wanted to go to technical college for one year as opposed to university for four years because I thought 'What if that's all I'm going to do?' I had a sense I would die young.
BLOOM: In your book, you talk about how you realized you weren't special or strong during your cancer treatment, you were lucky. That really resonated with me, because I bristle when I hear people talking about cancer as a battle.
Christa Couture: I dislike that language around fighting and not winning the battle, or being so strong that you beat cancer. It's not to diminish someone's spirit and how they experience treatment or illness, but I don't think it's an individual responsibility.
There are so many factors, even for me. I was lucky that I survived cancer and there are contextual parts of luck, like social location. I lived in Edmonton and I was white, so there were things that made the care I received different from the care someone else received. There are all of these systemic things, and then there's the randomness of illness.
A friend of mine worked for many years in a hospice as a therapist and she talked a lot about training volunteers and being very careful about using language around hope. There isn't hope if you're supporting someone who you love and they're dying. You can hope that they're comfortable and that there isn't going to be additional suffering, but you can't hope that it's going to be okay or get better. There's so much discomfort and people are so reluctant to say 'Oh shit, I'm so sorry. That's awful.' That's all it is. It's really awful.
BLOOM: In your book you speak about chronic pain with your prosthesis. I don't think a lot of people realize that ongoing pain can be common. How do you manage that?
Christa Couture: A lot of people think 'Oh, you have a leg, you're fine.' Actually, no, it's really uncomfortable. It's always uncomfortable. How do I manage it? For me there's been a long process of accepting it. A hard layer of having pain associated with my prosthetic—whether it was back pain or skin breakdown—was a frustration that it was happening at all. I was struggling with the fact that I have a disability. I wanted to be able to do things and I can't do them. Managing it has been more about the emotional work of accepting what's possible in my body and allowing those limits.
Before, I would fight those limitations and try to push past them. There was some of that messaging about being a fighter or, if you have a disability, you have to overcome it. Managing the pain, for me, has been coming to terms with it and just allowing this is a fact. Then I'm able to more gently name what my limitations are and name what my needs are—to myself and others. I know I need to rest and that's okay. In the past, I'd say 'I need to rest and I hate that I need to rest.' I would torture myself with expectations.
Now I'm more gentle with myself. It's taken years, but I think gentleness is a really important part of managing pain. Yes, there are physical treatments you can do—like putting heat on my stump—but the most helpful thing has been a gentleness and an acceptance and a softening to the reality of this body.
BLOOM: You spent months in three different children's hospitals with your son Ford, while he was having heart surgeries and then awaiting and receiving a heart transplant. Was there anything missing in the care you got as a parent?
Christa Couture: We had a really hard time with one hospital because the staff seemed sold on the hospital's reputation, and it held them back from trusting us as informed parents. We felt we weren't listened to or taken seriously. With that hospital, we were never trusted as having insight into Ford's care, and that's honestly even a part of how he died. We knew that Ford was having a stroke, and they didn't believe us.
It wasn't just one person there who was dismissive of us, it was repeated, in multiple interactions over months, even though we were at Ford's bedside every second of the day.
At the time, there was no palliative care unit and there was only one palliative care nurse practitioner who worked part-time and whose job was to move through the whole hospital. So even though this hospital was renowned, the fact that they excluded this kind of care was a reality. They didn't invest in it. Their story was they can fix it, they can cure it.
BLOOM: What did you find helpful in the other hospitals?
Christa Couture: I remember when Ford was born and had his first open-heart surgery at nine days. It was completely overwhelming and terrifying. They came out of surgery and he had an open sternum so you could see his heart beating below his bandages. All of this vocabulary was swirling around us and information about drugs, and we were so overwhelmed.
One doctor sat down with us and he said 'I promise you, you will become experts on this and you will know more about your kid and his care and medications than we do. You will be an expert and we will work with you because we will need you.' That really helped. We were treated as part of the team in a much more holistic way and respected.
BLOOM: How do you keep memories of your boys, Ford and Emmett, alive in a culture that is uncomfortable talking about death?
Christa Couture: For a while I felt so excluded when people would talk about their kids. I write about this in my book. Do I say I'm a parent, or not? It took time to have a peace within myself, that I can think about them and honour them and that's enough.
Now that I have a daughter we have some things we do together on their birthdays. We make them cards and I write a letter that I include that's meaningful to me. I put their names on the envelopes and stamps but we don't put an address, and we mail them. We send them out into the world. Maybe Canada Post doesn't appreciate them, but I pay for the services. There's something about being able to write the letter and drop it into the mailbox and let it go.
I have more parenting conversations now because I drop my daughter off at kindergarten, and so there's a lot of in-passing interactions with people where it feels strange that they don't know about my sons, who are such a big part of who I am as a mom and as my daughter's mom.
I have a place in my home where I have pictures on the wall of my daughter's brothers and we have a couple of photo books. She looks at them and she knows that they were my kids. I'm waiting to see what questions she has. This year she wanted to make cakes for their birthdays. I think how I honour them will shift as her understanding changes. It's nice to have new ways of thinking about them or talking about them as she learns more.
BLOOM: I remember in the book you talk about knitting your boys things for their birthdays.
Christa Couture: For many years, in the weeks building up to either of their birthdays I would knit a small stuffed animal and take it to where their ashes are in Vancouver. That was a nice practice. It gave me something to do in those days of anticipation. The build-up to those anniversaries is the hard part. You know it's coming and it's on your mind. Something like knitting occupies part of you, but not completely, so you can still watch a movie. It was nice to give part of me this task and to use my hands to make something. But then it reached a point where they would have been getting older, and knitting a bunny didn't seem like something I'd do if they were 10.
This is another area where I've had expectations of myself. What is the perfect way to honour them? If I don't do the right thing, am I a bad grieving mother, or am I dishonouring their memory? It was another area where I had to come to some acceptance and gentleness. I do this for me. They're gone, they're not judging me, so I do these things for myself.
BLOOM: Now that your daughter is four, how are you finding the joys and challenges of parenting with a disability?
Christa Couture: Well, as you know, parenting is hard. There's a level of physical activity for me that is quite demanding. Throughout the past four years the amount of getting up and down off the floor and bending down to pick things up has been challenging. Even now, sometimes my daughter wants or needs to be carried for a minute and she's getting so big. So definitely one of my parenting challenges is hitting my limits. If I'm in pain at the end of the day, or I don't have the capacity to clean up, I have to let that go.
I feel really grateful that my co-parent does a lot of the physical activities with her. They'll go sledding together or swimming or do things I can't do.
It will be interesting to see as my daughter grows how she sees differences after growing up with mine.
BLOOM: I just read an article in The New York Times by a parent with severe chronic pain. It's called The Most Valuable Thing I Can Teach My Kid Is How to Be Lazy. The author talks about how there are times where he has to spend his days lying down, but he invites his child to rest with him: 'We build elaborate nests and gaze out the window together, luxuriously leaning on huge mounds of pillows' he writes.
Christa Couture: I think it's wonderful to have that perspective. One of my best friends has a mother who has low vision and when I talked to her about parenting with a disability, and how I was worried I can't run, she said they'll adapt. As a child she knew her mom couldn't see well, so she learned to move in a way that her mom could see her.
BLOOM: Is that the childhood friend of yours called Susan in the book?
Christa Couture: Yes. We've been friends for 40 years. Part of Susan's capacity for my illness and disability was that she grew up with a sense of how the world didn't work well for her mom all the time.
BLOOM: What do you hope readers take from your book?
Christa Couture: It's twofold. I often run into curiosity with people who haven't had a direct connection to some of these experiences. They'll say: 'You only have one leg?' Or 'You lost two children?' I hope those people gain some insight, and perhaps learn how to support someone.
For people who are going through something similar, I hope the book is a friend and the take-away is that they feel that they're not alone. I remember shortly after Emmett died I read The Year of Magical Thinking by Joan Didion. Even though it was about the loss of her husband, I felt so seen by it. It felt like the first friend who got what I was going through. There were other books and songs and ways that works of art really helped me with my experiences.
I feel like making the book was a way I wanted to give back, to contribute to what's available for someone going through illness or divorce or other loss. I hope it's a connection for readers to feel less alone or to feel like they understand someone else better.
How To Lose Everything was named one of The Globe and Mail's "Books we loved in 2021." It includes the lyrics to a number of Christa Couture's related songs. Listen to her talk about her book in this interview on CBC Radio. Like this story? Sign up for our monthly e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with disabled activists; and disability news + new books: https://bit.ly/3IIK5Qo
