Written by Alexandra Boutte
I married my husband in Paris. It was like a dream: cobblestone steps, baroque architecture, and the flakiest croissants in the world.
I wore a bright pink pair of kate spade high heels paired with a champagne-colored vintage-style wedding dress and lace veil my mother and I dyed to match using tea bags in my bathtub. Newly recovered from limb-salvage surgery and officially cancer-free, I said I do, thinking we had already survived the most significant challenge our relationship would ever see. Five years later, sudden news of a cancer recurrence and the decision to amputate my right leg above the knee rocked our world in ways we never expected.
Individually and as a couple, we had to accept that things would be different. I would need my husband to be more than just the occasional shoulder to cry on; he would become my caregiver through the recovery phase and my support system for the rest of my life. Despite the skills I was taught in the hospital by the occupational therapist and the mobility devices I took home, I felt ill-prepared for how many things I couldn’t do on my own. I felt stripped of my independence, and I worried the weight of it all would be too much for my husband to carry. Although I had a reasonably positive outlook and attitude, there were moments ( and there still are) when my frustration affected my mood and mental health in ways that undeniably spilled over into my relationship. Asking your partner for help getting in the tub after an argument over how irritable you are is uncomfortable. You feel so wrapped up in your own feelings that you can easily forget to ask the other person in the relationship how they are feeling. I quickly learned that I couldn’t expect him to always be there for me if I wasn’t going to be there for him and allow him the right to have feelings about all of it.
While I put my healing and recovery first, I had to make a conscious effort not to let my relationship fall too low on my priority list. It, too, deserved to be nurtured the way my residual limb had been in the months following amputation. We made date night plans on pain-free days, and when I didn’t feel confident enough to go out, there were movie nights at home and cuddles on the couch. The patience and adoration I recieved from my partner allowed me to rebuild my self-love and ultimately helped our intimacy grow to new levels. He saw my scars the way I wanted to see them, as a story of my strength instead of imperfections. If he hadn’t been who he is, if he hadn’t stepped up the way he has, and if I hadn’t considered his feelings, we wouldn’t have made it.
Those of us living with a disability come with a few modifications in tow. There is a fine line between openly discussing the elephant in the room and allowing it to become the third wheel in the relationship. We are both still learning how to find the right balance as I communicate my needs and make sure I feel understood. Since the first day, when all the nurses were finally gone, and it was just us left to deal, I have felt thankful for my partner. I don’t ever want to take for granted the fact that this could have happened when I was with someone different, and there is a genuine possibility that my self-esteem could have been on the floor. Although your self-worth should never come from others, the wrong partner can hold a powerful weight over you as you try to stand tall, and walking away is hard enough when you don’t have a disability.
I can’t tell you what it’s like to be in an unhealthy relationship as an amputee. I won’t pretend to have ever been made to feel like my residual limb makes me less sexy or that my wheelchair is an embarrassment to my significant other. But I do know that healthy relationships with disability exist because I’m in one. I can tell you that if you don’t feel appreciated right now, there is still a chance with the right person. There is way too much inequality out in the world to let someone you love make you feel small when you get home. Don’t settle. Expect to get what you give and deserve, and love yourself first. The rest usually falls into place a lot more smoothly than a prosthesis slides on.