Reflections on an Interabled Anniversary
Three years ago, on our very first date, Pepo asked me a question no one had ever asked me before- “Are you still disabled in your dreams?” In retrospect, I suspect he doesn’t even remember asking that question, but it was what made me realize (on hour two of our six-hour-long first date) that he was the one. It was the first time that someone had been willing to ask me a question so direct and intimate about my disability without being afraid of offending me. In the past, it was something people sort of ignored, waiting weeks or even months before cautiously and awkwardly broaching the topic. My disability is a huge part of who I am, and you can’t get to know me without knowing my disability. They are too inextricably linked. Before we even sat down at that candlelit dinner table, he already knew so much about my health issues; he is a proficient internet lurker and had used my Instagram posts as a jumping off point to learn everything he could about Ehlers Danlos (“I did some reading- did you know there’s some evidence to suggest that high-dose vitamin C can be used to regenerate collagen?” You know, normal first date conversation). So, he knew, before even really knowing me, what he was “getting into” and he never shied away from it- on the contrary, I’ve always felt like my disability was something he’s truly embraced and been proud of.
One of my favorite authors and disability activists, Shane Burcaw, wrote the following in his book Strangers Assume My Girlfriend Is My Nurse:
“I live with the firm belief that an able/disabled relationship can be even more satisfying than your average romance… I believe romantic fulfillment comes from true intimacy and that deep closeness in an able/disabled relationship blossoms from the process of teaching one partner to ‘care’ for the other… Because of my disability, I’m forced to show vulnerability right away, and our relationship is that much more intimate from the get-go.”
I read this book several years ago, but I think about this passage often because it resonates with me so deeply. There was never space for bullshit in the early days of our relationship. Where other couples might still be too nervous to have the “what are we” conversation, a month into our relationship, he had already seen me at my worst- in screaming, agonizing pain, taking me to the emergency room at 5AM. There was no saving face, no putting on airs and trying to look my best. I was what I was, which was a mess, and he never missed a beat. There is such a feeling of security in knowing that someone has seen you at your lowest, knowing that those lows will continue to get lower over the years, and loving you unequivocally. Pepo has been there through countless appointments, procedures, surgeries, and recoveries and he has done whatever I’ve needed him to, no questions asked. If you’ve never had your partner carry you to the bathroom and help you use the toilet in post-op, you’re missing out (I’m only sort of kidding).
All this is not to say, however, that interabled relationships are always easy. I deal with a LOT of unnecessary guilt and shame, mostly centered around the feeling that I am a burden and holding him back. I often wonder how much easier his life would be if he didn’t have to be a partner and a caretaker, to help support me financially, to bear the emotional turmoil of watching someone you love suffer. And although, as I mentioned earlier, he “knew what he was getting into,” I still often feel like he didn’t really know how bad things were going to get and fear that he feels trapped. He has reassured me to the contrary hundreds, maybe thousands, of times over the years, but I think those feelings are just the consequence of internalized ableism and living in a society that sees disability as a burden (and Dr. Phil spreading ideas like this probably doesn’t help either).
Life would certainly be a lot simpler if we were an abled couple, but we would certainly be less “us,” and I wouldn’t change that for the world. Happy anniversary, my favorite animal, my number one fan, my very best friend. I love you always.
