Author | Photo Jana Sabath

Disabled Sexuality: Relearning Sex and Intimacy After a Stroke Changed My Body

This essay is part of a twelve-part series of sex positive essays sponsored by Womanizer—the world’s best sex toy. Submitted by guest authors, the essays explore and celebrate desire, pleasure, self-love, intimacy and personal discovery. Like us, Womanizer believes that everyone deserves to feel confident about their body, and their sexuality; we celebrate all types of love, and encourage women and non-binary folkx to explore their bodies, and enjoy their sex life. If you want to learn more (OH, you do), go here

I guess I fancy myself something of a storyteller. Before COVID-19 shut down in-person events, I used to co-host a semi-monthly sexuality and relationship-oriented storytelling event called Tell Me Something Good at Glad Day Bookshop. After six years and change I figure I’ve gotten pretty good at sharing deep, personal things about myself with a solid narrative structure.

At the beginning of so many of my stories over the past 5+ years (whether at a speaking engagement, a party, or really anywhere someone asks me why I have a cane) I give a quick backstory for context:

In May 2015, I did something to my neck (doctors posit it was likely stretching or dancing) and caused an imperceptible tear in my vertebral artery. Unbeknownst to me, I then had a small stroke which led to no lasting symptoms except that I sometimes failed to make new memories — I figured it was just because I was really busy. On May 21st, I had two much more severe strokes in my cerebellum and medulla oblongata and wound up in the ICU, spending a little over a week in the hospital, over a month in inpatient rehabilitation, and the better part of a year doing intensive outpatient rehab. The strokes left me with profound balance issues, sensory changes, weakness, and paralysis. I had to relearn how to lift my head, stand, walk, speak clearly, use my arms and hands, eat and drink. It was a lot.

Now I walk with a cane, I have to close my bad eye to read properly, sometimes my hands don’t work the way I want them to, but whatever. I’ve made peace with my limitations and most of the day-to-day realities of my disabilities are perfectly fine.

It’s been a much bigger challenge to deal with some of my sensory issues.

Every stroke is different, but one of the hallmarks of my kind of stroke is loss of sensation all over the body. For me, it’s the left side from the neck down as well as my right hand and the right side of my face. I’m basically split down the middle in terms of what I can feel. And yes, this goes for erogenous zones, too.

It’s not that I feel absolutely nothing, but it’s a loss of any gentle sensation and a bizarre rewiring of more intense ones. My partner’s cold feet feel like a knife and the first time I accidentally cut myself while making dinner after the stroke, I started sobbing in agony over a fairly minor injury. I’ll just say it: orgasms feel weird now. They’re still orgasms, but there’s a definite twinge of pain I’ve had to work through.

My balance issues and fatigue persist, meaning that I go through life feeling a little untethered. It’s like my head is a balloon and I’m holding it by a string — its length varying depending on the day. This, coupled with the fact that I can’t really feel most things, means that I feel incredibly detached from my body.

I used to work in sexuality, doing education, writing, speaking, and sometimes coaching. Sexuality and sensuality have always been important to me. They have always been integral to the way I experience the world, and this distance from physical embodiment is hard to overcome. Plus, there’s a vicious cycle where my lack of bodily connection leads to a lack of desire that has been challenging to break. Really, it’s just hard to feel sexy. 

My attempts to figure this out have led me to mindfulness, somatic sexology, counsellors, and occupational therapists. Through these sessions, I became more aware of my breathing, accepted some things about my new appearance that have held me back in other areas, and learned about scheduling sex for whenever I have the most energy, which I now also use for chores and writing. 

I cobbled together some good ideas and practices, but nothing has really cut through the simultaneous fog and grief I feel when I really focus on what my relationship to my sexuality has become. Mostly I try not to think about it.

It occurs to me that, if I had access to one person who saw sex as a valid rehabilitation goal, I might have had a very different outcome. Often disabled people are seen as non-sexual, but occupational therapists deal with so much to do with energy, positioning, strength balance, and dexterity… Doesn’t that apply to sex as well? As much as I have tried doing things for myself, the most impactful thing I’ve done has been to hope that other people in my position won’t have to feel uncomfortable broaching sexuality in a healthcare space.

Because of this, a thing that has really helped me is working to make sure those who are more likely to work with disabled people, especially newly-disabled people, see the value in being open about sexuality with their clients. I’ve been able to speak at conferences, schools and professional settings, championing a sex-positive attitude for occupational therapists, physiotherapists, even speech language pathologists.

I even had the chance to co-author an article in the American Journal of Occupational Therapists (with my wise and wonderful friend, Natalie Rose) which essentially charted my journey of trying to find anyone who would be willing to talk to me about how sex and sexuality had changed for me in the early months after my strokes. As far as being a sexual storyteller goes, it’s by far my most intimate exploration of my own sex life, so of course it happened in academia!

Among the many changes in my post-stroke life, I’m now a matchmaker and dating coach. After a few years of working at it, I actually bought the company I worked for, so I get to spend all of my day helping people find love. A big reason for this career change is that I found love shortly before I had my strokes and saw how genuine care and support from a partner can make all the difference, especially when up against such a big challenge.

It’s important to point out that our sex life is still not just good, but great. Maybe it’s not as frequent or adventurous as it used to be, but it fosters so much intimacy. Despite my transition from working in sexuality to focusing more on dating, my career orientation has always been towards relationships, specifically creating connection. While sex is so often framed as a physical act, so much of it has come to centre around forming and deepening our bond. This evolution is different, but welcome.

Though I’ve told countless stories about individual exploits over the past few years, I’ve held back from telling the story of my experiences of disabled sexuality more broadly because there’s no happy ending. It’s perhaps sad to say, but I keep waiting for things to somehow change. In the beginning, I felt like I was working towards something with my protestant work ethic and rehabilitation mindset, but it’s been important and good to work towards accepting my limitations when it comes to sex, too. Hope springs eternal until it doesn’t. Maybe I can tack on an epilogue to this some day, but it’s okay if I don’t. I’ll continue to explore things on my terms and hopefully get to a place of peace with my (relatively) new body.

Read more personal essays from our partnership with Womanizer here, and check out our Womanizer x Shedoesthecity Boudoir shoots too.

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