This isn’t an occasional encounter with somebody in a wheelchair; it’s day-to-day life and I’m still learning how to attend to my own needs as well as hers.

My wife Nicole and I met in China in 2008. I was teaching English, she was studying Chinese, and we were both living in the same building. We spent countless hours in my apartment, keeping the conversation going long after our friends had turned in. We chatted about personal history and dysfunction in family, about culture shock, and about learning how to live in another place—one that’s not exactly friendly to people in wheelchairs.

Nicole was injured in a car accident at age 10, sustaining damage at the L2 level. By the time I met her, she was 24 and had already travelled to several other countries in her wheelchair. I didn’t know much about SCI, but Nicole’s a practical person and makes everything easy. For her, being in a chair in China was just another adventure. For me, it was an education. I learned what she needed to make her way around China, whether it was getting up and down stairs or moving around in a cramped sleeper train. I found myself proud to stand by her when Chinese people approached her on the street, impressed and inspired to see a person in a wheelchair out of the house (“I have a cousin/brother/uncle who uses a wheelchair,” “but he just stays at home learning a second language!”), and I would advocate for her when accessibility and understanding became an issue. Once a shop attendant, talking to Nicole, used the word “little friend” which in China is usually used to refer to kids. Maybe there’s some other use, but I thought, “You’re calling my girlfriend a little kid?” Needless to say, I got pretty defensive.

Nicole taught me how to give hugs (an introvert, I’d always found a way to screw the process up) and how to ask someone on a date. And, eventually, I figured out that she was the only one I wanted to be hugging and asking out on dates after all. We were married in 2010 and now have two boys: Noah, 2, and Simon, 4. Nicole’s pregnancies were easy, but the first six months of parenthood were not.

Simon was born the day before I was to begin orientation for my MA in theology. I missed the introductions, and rushed home from school every day after that to help Nicole, who was at home with the newborn baby, able to pick him up and put him down, but struggling to get him from place to place and to cook while watching him. We should have found somebody to lend a hand right away—we were grateful to friends who came for a few hours each week, but we needed more help than that. Eventually, we figured it out and got the help that we needed.The challenges of parenthood didn’t put a strain on our relationship, but they did put a strain on my studies. I was beginning to realize that I did want to go on to do a PhD, but I wasn’t getting the grades I needed. At home, Nicole was struggling with postpartum depression. It was a hard time for each of us personally, and we could attempt to comfort each other, but neither of us from places of great strength.

We eventually got a nanny who stayed with us up until April of last year, an even greater help when our second son came along. We didn’t want Nicole to have to chase the boys or coax them out of places she couldn’t access if they went running off. By now, they’ve learned to listen quite well, and as they grow up they understand what the boundaries are because of mommy being in a wheelchair (“Mommy can’t walk because she was in a car accident, right Daddy? And that’s just the way it is.”) On top of mommy’s own situation, our younger son has a genetic disorder that affects his blood sugar, requiring us to feed him every three hours during the day and every four hours at night.

Nicole has her share of frustrations. There are some things that are hard because she’s in a wheelchair and those don’t necessarily get easier over time. I help her as much as I can,

trying to be sympathetic, comforting her, or just being present. But this isn’t an occasional encounter with somebody in a wheelchair; it’s day-to-day life and I’m still learning how to attend to my own needs as well as hers. Sometimes what each of us wants or needs comes into conflict. Nicole relaxes by getting out of her chair and into bed while I find more comfort in a chair. And since our bedroom has no space for a recliner or office chair, it makes it hard to spend the quiet time of the day together.

I take our lives as a matter of fact: this is the woman I choose every day, and so this is the life I choose every day.Sometimes I try and catch myself to stop thinking in terms of ideals—of how things are supposed to be. Of course we’re supposed to be able to take turns being alone with the kids. Well, that’s not always easy, but mostly it goes well. I do feel guilty bringing things up, like when there are special lectures I want to go to. That would mean leaving her home alone with the kids. So I always ask, “What do you think, do you feel up for it?” It all comes down to voicing my own needs and concerns while still putting her first.

Generally we’re pretty good support networks for each other. But our varying personality types don’t always make things easy. Nicole is very social; I’m not very good at initiating social interactions and meeting new people. And here’s where it gets tricky: even though Nicole’s a very extroverted and outgoing person, like many people with SCI, she fatigues more easily. But being around other people revitalizes her and does well for her emotional state. So Nicole’s fatigue requires me, a complete introvert, to bring people into the house or to take us out to interact with other people. I want to help her—and I do—but the very scenario that reenergizes her is taxing for me.

Our social lives will get easier when we move into our new house in Abbotsford. Nicole’s dad is retiring, so her parents will move in with us. For Nicole, this means getting the constant social interaction she craves, and help around the house and with the kids as she finishes up her degree in counselling and takes on a practicum soon. For me, it’s a chance to balance my family’s needs with my own—a chance to crank out that Master’s thesis and start teaching. Our lives are perfect in their own imperfect way. “Supposed to be” was never the goal anyway.

What really helped was the work Josh did to release the anger and trauma of his injury. It was amazing how we were able to be more intimate after we let all that go.

Josh and I met at staff orientation at a ski resort we worked at. We were on and off friends, but nothing serious at that point. We were both pretty young. We dated, hung out, did our own things, but it was only after Josh’s injury that we really got together.

It wasn’t until the day I heard about his accident that I really let myself feel things for him, and realized that I cared for this guy. I was already going to see him in his home town, so I just got on the bus to go be with him at Vancouver General Hospital. A lot of people were thinking, “who the hell is this girl?” I know it was pretty big and bold to jump in right after his injury and I didn’t know what I was getting into. I just knew I was there to help a friend.

My initial thoughts were just really practical: I was going to move to Vancouver so I was closer and I could help every day. I could get a job, probably stay with my aunt. I ended up not leaving his bedside.

To be honest, in that moment both Josh and I felt like we were reborn, like we were kids again, living in the moment. We weren’t thinking about the future at all. We were just dealing with the immediate questions like, “how do we  go to the bathroom? How does he transfer?”etc. We were young and free and we enjoyed each others’ company and learned together. For the first three months, most of our relationship was about care giving.

Josh was a real treat to be around post-accident. He had really accepted it. The doctors warned us that it wouldn’t last long, and to be prepared that his feelings about it might change, but we really rolled with it for a long time. We liked being around each other, and right from the get-go we built this trust and loyalty to each other. We felt completely comfortable with each other.Dealing with all that stuff is easier when you’re not alone.

We looked at everything like a journey or adventure we were on together, equal parts experiencing it. We loved exploring, challenging situations, both coming from a sport background, challenge was something we enjoyed. This was something we didn’t choose but really bonded because of it.

How did you find a “new normal” after SCI?

Honestly finding a new normal had a lot to do with his sport. Josh didn’t really have any downtime until post-2010 Paralympics. He kept himself busy with goals and moving forward, so it was easy to not focus on his disability. After the 2010 Paralympics he didn’t have sport or goals to focus on, and all of a sudden his disability and all of those things that he hadn’t dealt with were very apparent.  I felt like he had so much he was dealing with [Post-2010 Paralympics], I don’t want to put anything on him. But eventually it gets to a point where you have to talk to someone about it.

For me, honesty was the best thing – to just say “hey, I’m not satisfied with our sex life” – he knew it. We were just in denial. It’s a touchy subject. I feel like more people are willing to talk about it now, but back then it wasn’t something people talked much about. The Sexual Health Rehab team were huge in helping us out. We always felt comfortable talking with them – they never forced us or told us what to do. Whenever we got to a crossroads, they had suggestions to try – Viagra or the pump. They didn’t work but the prostaglandins worked for us.

What really helped was a one year counselling program Josh did that went really deep and dealt with past struggles and fears. It was therapy work that Josh was willing to do to accept his disability and trauma and even some of the anger he’s experienced about his accident. To know that it’s okay to feel that, and learn to accept it in order to let it all go. It was amazing for Josh and I how we could become more intimate and close to each other after we were able to let all that go.

It all comes down to community and to being open with your partner that you’re struggling. Until you’re able to be open and ask for help, people aren’t going to prod. You’ve got to be your own advocate and say you need help! I’m very lucky to have a close family, my mom and sisters, that I could be open with. That’s been very helpful. Even today I feel like I could talk to someone who’s not family. I’ve never had support on my mental health specifically, and I’m lucky my family’s always been there because Josh’s accident insurance company hasn’t been willing to offer me any help.

What questions did you have in the first while after injury related to relationships, intimacy, etc.?

I think the biggest question a lot of people have and are too afraid to ask or think about is how will his penis work?  Will he ejaculate, will he enjoy sex the same, can he have kids?

I remember having to have some deep contemplation about the kids scenario. I knew I had to be ok with the fact that we might not be able to have kids, before we tried. I didn’t want to go through the process and have so much emotional weight on the outcome.  We both wanted kids- we knew we wanted to have them together but we were open and very practical about our situation, there was a very good chance it might not have been possible, and I was ok with that.

What would you say to another person going through SCI with a partner?

Partners are always there, taking the burden of the caregiving. Specifically in our situation, I’ve been there since day 1, doing this together with Josh. I’ve been very fortunate to have yoga in my life – that’s been HUGE in helping me. I’ve been able to find stillness, manage anxiety that’s come up. And just to recognize that there’s so much more to my emotions and not letting them get the best of me. I’m lucky I had that support network.

At the end of the day, it comes down to communicating with your partner. You have to be able to say “I’m not feeling good about this. I’m not going to continue.” – you have to stand up for yourself, own your own emotions and your own pain. I think it’s also growing up and being with a person – geez – 15 years now. You grow up together.

Josh and I as a couple love putting ourselves in situations that are a little uncomfortable. We are courageous and out of our comfort zone, that’s where the magic lives. But if you’re too much in chaos…  there needs to be a balance.

How has it changed things since the kids came along?

The kids came along in the midst of the therapy and difficulty. There was a lot going on! Josh had broken his back a second time. He’d retired from Paralympics, he was in the X Games. His disability was becoming super apparent – on the road in a travel trailer that wasn’t accessible, no routine, going from one job to another. It was really risky living. Now all of a sudden we have a daughter and responsibility. A close relative got cancer. We were supporting family and ourselves. It was extremely stressful.

At that point, the momma bear in me came out. I put my foot down and said, “this is what we’re doing, we’re moving back home and looking after ourselves.” That’s when the therapy came and we decided to make a change. Parenting has been a process of figuring it out, day by day. Parenting is not easy whether you’re disabled or not! It’s hard! There’s so many beliefs that are different. It comes down to communicating, making sure that we see eye to eye on how we want to parent our children, big picture. We want them to be adventuresome, and expose them to that kind of living. It’s not always easy but we have each other and support each other.  Josh is trying to figure out how to be a dad with a disability. There’s a lot of things he can’t do physically – so he’s thinking about how he can figure out how to do so emotionally, and figuring it out day by day. We’ve found we have to be willing to look at the bigger picture and be willing to try and to fail, and say ”Oh right, that didn’t work, let’s try again.”

What’s really cool though is that kids are so intuitive – our toddler doesn’t usually take off with Josh, he knows he can’t come after him. He takes off on me all the time! It really does take a community to raise children, and you really recognize that when you are parenting with a disability.

Any advice for partners?

The whole self-care part has been pretty huge for both of us. He had a bladder surgery to give him better control and that was a real help. He was using condom drainage and a leg bag before, but there was always a smell. There were times I had to tell him that he smelled like pee. The leg bag was a big issue for us – every time we wanted to have sex, he’d have to have a shower, take the leg bag off, it was a bit of a process. Sometimes we had to say “we have to make time for this, we’re doing this now.”

The bladder surgery really helped.  He’s more confident, there’s no smell to deal with. He’s always been really good with self care. Some of it would probably be the same without a disability – he’s an active guy, he should shower more!

The accident may have happened to Kev, but it also happened to me.

Everything changes with a call. There has been an accident, says Diane [Kev’s mom]. ‘Don and I are driving out to Kamloops,’ she says. ‘Will you meet us there?’ For the first time, I realise he could die. He could actually die. How can this be happening to him? To us? To our life together? This is not how it’s supposed to be.

…

‘I love you, Kev; nothing will change that.’

‘But what if my back really is broken and I am paralysed? You said you could never be with a disabled man.’

Shit! ‘I said that almost four years ago. Anyway, I say things I don’t mean all the time — stupid things, you know that.’

I had not thought of the blithe conversation in years, but since his fall, Kev has thought of little else. He paws the oxygen mask from his face and it hisses faintly into the tangled hair of his throat. ‘I didn’t want you to see me looking all messed up, didn’t want to freak you out … I just kept thinking how you’d never stay with me if I was paralysed, so I had them take out this tube in my throat that made me look really bad.

Stepping outside into the hall, my composure breaks. Suddenly I feel hot, my throat raspy as if recovering from a cold, and I’m breathing irregularly as though hyperventilating. I’ve never felt panic as acute as this. I feel like I’m going to throw up. What the fuck? What the fuck? What the fuck? I want to find a little box somewhere to crawl into: a warm Goldilocks bed where I can pull the covers over my head and pretend this is not happening.

…

Kev’s spine has snapped as clearly as a stick snaps under force and for it to spontaneously heal, for the break to vanish, is almost impossible. He assumes we are on the same page but I am still chapters behind. I haven’t even accepted the break.

I hate seeing him so vulnerable because he’s always been the strong one, he’s always calm when I am a tempest. I also find it hard to accept the concept of forever. My young, strong boyfriend has suddenly become weak, frail and injured. How will my perception of him change? He’d been capable of skiing with me on his back, of lifting heavy stuff, of hiking and biking all day — capable of so much. What is he capable of now?

Am I going to find him attractive now that he’s disabled? And what about sex? Is that even possible? I’d said in the invulnerability of youth that I’d not signed up to be with a disabled man, but the declaration I’d made so emphatically four years previously was not quite that simple now that I knew I loved him. So many relationships barely survive day-to-day life, let alone the paralysis of one partner; how are we going to deal with this? The accident may have happened to Kev, but it also happened to me.

…

Shielding him from hypothetical judgement and looks of pity or disgust consumes me — looks, I fear, I may once have shot him in different circumstances. Any acknowledgement of his accident threatens to release my anger because deep down, smothered by decorum and sensitivity, I too am mortified.

After a time, the sitting exercise evolves to clapping his hands, then holding arms outstretched and finally to catching a ball. The ball-catching exercise frustrates him by showing his frailty but as much as possible he has a pragmatic positivity and does not often wallow in the depths of self-pity, instead dealing with each additional challenge or setback with quiet dignity and resolve. And I love him for it.

After he graduates from the cushioning mats, Kev tackles the concrete curbs and I watch, cringing, from between spread fingers. Initially he falls with every attempt, dusts off his hands, then painstakingly climbs back up onto his feet into a crouching position and tries repeatedly to get back into his wheelchair on his own, until he slumps over, exhausted, with shaking arms and damp hair and reluctantly asks for my help in a small, defeated voice.  Over time, he occasionally begins to sail up onto the curb like a teenager on a BMX bike and as his successes become more frequent, he becomes cocky and overconfident and one more is ejected disharmoniously. Check this out’ he’ll say, charging at a curb that seems higher than the Berlin Wall and a slow involuntary groan escapes me.

By the time I ask, ‘Kev do you really think that’s a good idea?’ He’s kneeling on the curb with scraped palms and knees, an overturned wheelchair cupping his bottom and swearing like a drill-rig worker. I don’t want to wrap him in cotton wool, and as much as it hurts me to watch him struggle I know the pain of seeing him give up, of watching his shoulders take on a defeated slump and his eyes acquire a passive kind of acceptance like a long-caged wild animal, will be much worse. I choke back cautions when he does things I know he will fail at, or get hurt doing, because I know that one day, one day he will succeed. It is no more in my nature to baby him as it is in his to accept it.

…

After walking Kev back to G.F., I make my way back to my apartment passing a ‘women only’ sex shop called Honey and I duck inside. It is a lovely surprise because it is run by women, for women, stocking tasteful items such as sensuous massage oils, delicate sexy lingerie and elegant feathers, candles and books, among other items. ‘Hello,’ says the attractive lady behind the counter, raising her eyes from her book ‘If you have any questions, please let me know.’ I browse the shop for some time, smelling oils, caressing soft lingerie fabric and flicking through the many books. Eventually I buy Kev a beautiful Indian silk-bound copy of the Kama Sutra (which unfortunately does not have a wheelchair section). Perusing the book, I think of the flamenco dancer and her blatant sex appeal and of her fluid, languid movements and dark, sultry eyes. To her, I assumed, sex was like a fine red wine and had only improved with age. However, these days, to me, sex feels like a foreign country: fraught with fear and misunderstanding and disaster.

‘Why do you want to have sex with me?’ Kev asks. ‘My legs are disgusting, it’s creepy and weird.’ He cannot accept that I want to have sex with him and I cannot accept that he wants to have sex at all.

‘Well why do you even want to have sex with me? Can you even feel it with your dulled sensation?’ I ask, on the verge of tears. ‘I’m hurting you.’

‘No, it’s not you … my back just hurts all the time. Of course I like it … it feels different but still great.’

I am so conscious of every expression that crosses his face, and assume I’ve caused every grimace. ‘Should I stop? Are you sure you’re okay?’

‘Yes, yes I’m fine.’ But he is not fine.

His back aches constantly and the spasms rip through him torturously. He’s hurt and fragile and less able to roll about than before. Sex feels like something I am doing to him instead of something we are doing together. We are at odds, acting like nervous, awkward virgins, unsure of how to please each other and at the same time, so desperate to please. ‘That part of my life is over,’ Kev had said melodramatically three days after his injury and, at the time, I felt that too. The first time we had sex after Kev’s injury was when he was still a patient in Vancouver General and was visiting my apartment. He attained an erection and we had quick, awkward sex, with me terrified of hurting him. As we lay together on my bed, Kev suddenly began to urinate and, stricken, he grabbed his shirt and bunched it over his penis to stop the flow. Traumatised, we barely spoke of it.

Still… With time, Kev learnt an effective system to manage his bladder to prevent such mishaps, but the incident burned deep and it took a while before we had sex again. GF Strong Rehab Centre offers sexual health information and we are given numerous pamphlets demonstrating positions suitable for a recently injured paraplegic man and his partner, and patients are encouraged to experiment with sex as soon as they feel physically able. On the spinal ward is a room that is set up essentially as a hotel room, with a double bed and bathroom, known as the Living Room. Patients book a stay accompanied by their partners, giving them a glimpse of how life will be when they go home but with the safety-net of nurses just a call-bell away. Between the Living Room and visits to my apartment, we snatch moments of intimacy and trying, yet failing, to take mishaps less seriously and laughing instead of crying. The nurses tell us to keep trying, that it is early days, and with ingenuity, modification and practice, sex can again be great.

Thanks Emma K White for allowing us to excerpt her book, Broken: A Memoir, about a road trip around Australia with her boyfriend Kev while he was recovering from spinal cord injury. It’s worth a read!