Wednesday, April 18, 2018

Christa Couture sees beauty in resilience

Photos by Jen Squires

By Louise Kinross

I was scrolling through Twitter when my eyes locked on an image of a pregnant woman. Taken from the side, her belly was the centre of the photo, and her closest leg had a brilliant floral pattern on it that matched her cropped shirt. It was a prosthetic leg. I clicked on the link to find this CBC piece by Canadian folk singer and songwriter Christa Couture: I Couldn’t Find Any Disability Maternity Photos, So I Created My Own.

In the article, Christa writes: “I struggled to imagine my own maternity photos when I couldn’t find any examples of them with a body like mine…There aren't a ton of one-legged people out there, true, but it wasn’t just that I didn’t see any amputees in maternity photos—I didn’t see any kind of disability. At all. Or really any other body differences.” So she did a shoot with photographer Jen Squires.

Christa's leg was amputated at age 13 due to bone cancer. She's experienced the loss of two sons: Emmett and Ford. “It took time to be open to a pregnancy," she told me. “I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.”

We spoke about her amputation and why she hopes the next person who does a search for 'disability and pregnancy' finds her photos.

BLOOM: What was it like as a young teen to experience having your leg amputated?

Christa Couture: I was first diagnosed with Ewing's sarcoma when I was 11. I had chemotherapy and radiotherapy and went into remission. Then, just before my 13th birthday, the pain came back. Very quickly, a couple of days after they did a biopsy, my leg was amputated.

When people ask me about what it was like, I tell them ‘I don’t know what it’s like not to have cancer.’ Not only was it normal for me, but I was spending a lot of time in hospital where I was surrounded by other kids with cancer. As much as that’s a painful reality and now, as an adult, I’m like ‘Oh my God, we were so small,’ at the time, we didn’t have that perspective. It was just our world.

I had cancer when we lived in Edmonton. I have great memories of nurses who were so fun and made the experience as good as it could be. It was hard, because I was really sick, but it was so normal. It wasn’t until my later teens that I came to terms with the fact that it was really difficult at the time. 

When I was in high school with a thousand other people, none of whom have cancer, I realized I’m kind of unusual. This is an extraordinary experience. I felt separate, especially after losing my leg and being in the regular world, knowing it wasn’t normal, and everyone was going to stare and ask me what happened.

I didn’t even recognize it as permanent until I was in my late teens—that I have one leg and as I move toward being a young adult, things were physically harder. Like finding a first job when you can’t be on your feet all day.

In some ways it was like an exaggerated adolescence. It’s already this time of change, and becoming aware of your body, and for me it was a dramatic, radical change, and I had to learn how to walk again.

BLOOM: I’ve seen other kids who learn how to walk with prostheses here, and it’s always struck me how hard it is. I think there’s a public perception that you just put on the technology and get up and go.

Christa Couture: People don’t realize how challenging a prosthesis is, because they see what looks like a limb, and they think it must operate like a limb. But this is not a limb that works like any other part of my body. It’s a device that doesn’t come naturally.

I had to program my brain to use this equipment, and it was a long, slow process. It was like taking my first steps again. It wasn’t until some point in my 20s when I felt like I could function pretty easily. It’s a huge learning curve, and it’s not at all like having two legs. As someone who has an acquired disability, I remember what it was like before, and it’s completely different.

I don’t know if people expect it to be easy because they see Paralympic athletes.

BLOOM: Elite athletes.

Christa Couture: We don’t tend to see people who are using prosthetics in an ordinary, daily way. The reality is that it’s challenging and slow and it means not doing a lot in a day physically.

BLOOM: What advice would you give a child who's at the beginning part of rehab?

Christa Couture: I would say it gets easier, but it takes a long time. There’s good cause to be hopeful, and to know that your body will get stronger and will adapt and will learn. But it’s not quick, and it’s realistically difficult to do. Eventually everything is possible, but you’re going to be doing it a little differently.

Now, I love the way things are different for me. At this point, the experience of losing my leg and having a disability feels like I’ve been to a country most people haven’t been to, and I have this perspective which is so rare and feels precious. It feels amazing that I’ve gotten to know something about myself that many don’t—as far as resilience and adaptation and adjusting. There’s ways that it’s harder and it’s a major bummer. And then you get used to it, and you get good at it.

BLOOM: I read that your current leg has a micro-processor in the knee?

Christa Couture: My folk music community raised $25,000 to buy a knee that costs $40,000, and is not covered by public health care. Then I got this floral thing done to make it decorative.

Because there was media coverage, a lot of people knew about the knee, and they thought she’s now part robot. People would say ‘Is everything better now?’ And I had to tell people it’s a little better, but I can’t leap over buildings. It’s not a super power.

What is better is that I fall less often and I have better stability when walking on rough terrain. That for me is a huge difference. But it’s not a super computer and it’s not like I can charge my iphone with it.

The things I can do now, for anyone with two legs, are really basic.

BLOOM: The design on your leg is gorgeous. It looks like it’s painted.

Christa Couture: It’s actually a fabric that’s laminated. It’s a linen upholstery fabric that I found in this ritzy furniture store and I really loved the design. I had seen hand-painted prostheses. There’s a company in London called the Alternative Limb Project that does them, and they’re very artful. I showed a picture to my clinic and asked ‘What’s the affordable version?’

BLOOM: We laminate all kinds of things here on prostheses for kids, like their favourite characters or sports teams.

I read an essay that you wrote about your children Emmet and Ford, who died. You wrote about how challenging it was to know how to respond to people when they ask you if you have kids.  

I also read a piece where you shared your favourite books on loss, and Ian Brown’s The Boy In The Moon was there. You wrote that you read it while you were at Ford’s bedside in the hospital. How did you find the courage to get pregnant after these experiences?

Christa Couture: They were such painful experiences that it took a long time to be open to trying. I knew being pregnant I would be terrified. 

Losing one child is something, but losing two doesn’t happen that often. People kept saying ‘It’s so rare,” but for me it was 100 per cent of the time. With Emmett it was because of complications of labour and with Ford, he had a rare heart defect that's not genetic. Then I met other bereaved parents at a group at Canucks Place in Vancouver, and I learned about every way that a child could die.

I knew the best-case scenario would be what I have now, which is a healthy child at home.

But I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.

My son Ford lived most of his life in an intensive care unit. He had hypoplastic left heart syndrome. Most of his life he was in hospital, and much of that time he was intubated and had multiple surgeries. I wanted so much for this pregnancy to be okay. I don’t know how I would survive if something happened to my daughter, but we never really know what we’re capable of.

BLOOM: You said on Metro Morning that when you searched for other maternity photos of moms with disabilities online, you didn’t find them. 

Christa Couture: It was discouraging. Especially because I was considering being a single parent. There were lots of stories about single parenting, and about single moms by choice, but never did I ever see any of those people with disabilities. Even though intellectually I thought surely disabled people are parenting, when I couldn’t find them, I thought maybe this is a bad idea. Maybe they all realized it was a bad idea, and I’m fooling myself.

BLOOM: What was so interesting about your CBC piece was that you said it was the first time you’d taken your prosthesis off for a photo.

Christa Couture: That was really significant. I’d wanted to do it for a few years. I wanted to do it for myself, and to confront my conflict about it.

It felt vulnerable because my leg is scarred and it’s—whatever shape it is. I think people see my prosthesis with the flowers and hear about the micro-processor and think she’s part robot and that’s cool. They see a cyborg and think it’s edgy and a fun thing to do. I was worried in taking it off that I would lose that—that people were going to conjure more deformity or injury or a lack.

But I wanted to make it public, because any time I see someone share their difference—it doesn’t have to be a missing limb—I feel more empowered in my own difference. I knew people might do a double take, because they’ve only been fed images of certain bodies. But we need to normalize these differences.

There were two women who really inspired me to think I could do this. One is Alexis Hillyard with her cooking show Stump Kitchen. She uses her arm with a stump to clean bowls and get peanut butter out of jars. CBC Parents has created a kid-friendly version of it.

The other was Kaleigh Trace, who wrote Hot, Wet and Shaking. She was in a car accident when she was a child and had a spinal-cord injury. I loved reading about how she figured things out. She wrote about crawling around, and being so amazed when she figured out that she could carry stuff in her teeth.

It was those two women who made me believe that maybe I could see myself as someone cool.


Christa Couture amazing you are..thanks for sharing story