It was only through an accident that I became aware of the sensual possibilities my body offers me. Until then, however, it was a long and arduous journey.
When I first had sex with another spoonie, a person with chronic pain, my body was a wreck. I had been hit by a car three years earlier. After the surgeries, not only did I have to learn to walk again, I also learned that I would be in pain for the rest of my life. Together with my partner I spent weeks crisscrossing the USA. Everything hurt, I was exhausted. My partner put me next to our little campfire and asked me if I wanted to have sex. She had broad shoulders, rods in her back, and a shaved head. “Yes,” I said.
While we slept together, I asked her to hit me. She took heated stones from the fire and burned me with them. She pulled my hair and pressed my face into the earth. She worked my vagina wildly. I literally begged her to make it harder for me – and she fulfilled my wish. Of course, all of this took place within our previously defined limits and with defined safe words. So I consciously chose the pain. And this decision was like a revelation: I turned my suffering into pleasure and pleasure and no longer let the pain determine my life.
When I recently entered “Chronic Pain and Sex” on Google, I read on the Mayo Clinic website of the American nonprofit organization that the fun of sex is often lost when you suffer from chronic pain. But I could find my sexuality again despite my illness. The conclusion when the big media reports about chronic pain is usually something like this: You have to defeat the whole thing, you must not let it get you down.
But what if I now understand my body better because of the chronic pain? Despite Mayo Clinic’s opinion and despite the general desexualization of people with disabilities, the pain neither killed my fun nor took my life. I don’t fight my pain to rekindle my desire to have sex. No, because of my chronic pain, my sex is now queer, more unusual and more intimate.
I have not always been a spoonie. I wasn’t physically restricted until I was 22. But then the accident happened and I became an athlete who dropped out of college and went back to living with her parents, who couldn’t walk or go to the bathroom without help. I felt ashamed and became depressed. I barely left my darkened room and rarely spoke. I searched through all seasons of the series Law & Order: Special Victims Unit. I raved for the main character Olivia Benson while my body was destroyed by the terrible pain and sadness. I can’t remember much more.
Then a friend gave me the book Brilliant Imperfection: Grappling with Cure by Eli Clare. Clare is a poet, lecturer on disability and a trans memoir writer. In Brilliant Imperfection, he writes about how disabilities are always placed in a medical context and how our society is obsessed with curing and eliminating all illnesses – including disabilities. He examines how it all relates to gender transition, sexuality and queer sex by people with disabilities. He asks what happens if we not only accept our suffering, but also deal with it very confidently. His book shouldn’t show me how to deal with my negative feelings and injuries. It was my justification to be the person my accident made me: a disabled lesbian. It was my justification to rebel against my internalized anti-lesbian and hostile shame. Clare was the only person who told me that my self-esteem did not depend on me feeling better and no longer in pain. I have read the book over and over and cried again and again.
Several months later, I learned to walk again. A month later I met my current girlfriend. On our first date, my partner noticed that I was limping and adjusted wordlessly to my speed. We had sex that same evening. As always during the first year of our relationship, I had to cry again and again during and after. “You’re safe with me,” said my friend, “I’m staying here.” In the arms of my partner, I realized that my queer identity had prepared me for my illness. Because I heard these words again and again from my sexual partners and mentors during my turbulent coming-out. Other friends didn’t want to have anything to do with me because of my sexual identity and later because of my disability. A whole series of lesbian and queer women, on the other hand, strengthened my back in my weakest phase.
As my healing process progressed, I developed a strong urge to have fun in my body again through good sex. But now I have to get creative and fully enjoy my “indecent” attitude towards sexual intercourse, which I discovered through my sexual orientation and my pain. Pain frees me from the normal. Pain is my gateway to the hottest and most intense queer sex I can imagine.
If I compare my life before and after the accident, I’m happy to see how chronic pain deepens and extends my sex life. I used to have thoughts that hindered me during sex – for example, “How does that feel to you?” or “Am I doing everything right?” It was a relief when it was all over. And I only had fun when my partner got her money’s worth.
My chronic pain brings my world of thought to a standstill and gives me more physical and sensual options. These options make me a bottom and often include special requests and sometimes absolute submission. Before that, I always assumed that I would make myself too vulnerable as a bottom, that my wishes would come across as selfish and that my kinks would be embarrassing. With less thought, however, my submissiveness enables me to concentrate on my body and my sexual preferences for a long time. The pain has brought my sexual pleasure to the fore. And that feels like a cure.
For me the ideal sex is always a “fuck you!” towards the structures that keep queer spoonies like me small. Chronic pain did not herald the end of my sensuality, but made it more queer, more unusual and more complex. I was forced to explore my pain threshold. I found a deep gratitude that my body can feel anything at all. Without chronic pain, that might never have happened.