Adaptive Rope - How we kept our world kinky through cancer

education guest blog

September 09, 2022

Tom and I met in February 1991. He gently and carefully offered me kink, and, after a few months of trepidation, I jumped in with both feet. Our marriage saw us living and working all over the world, and we had an enviable and joyous sex and kink life that never seemed to dim through all those years.

April 2014 the world changed. In December 2013 he was doing a rope tasting and injured his shoulder. The end of 2013 through March 2014 saw him increasingly disabled. I became resentful and hurt as our rope and sex disappeared, and he got annoyed that I pushed him to see the doctor when what he needed was rest.

I finally did get him to the emergency department in April and he was diagnosed with Multiple Myeloma, a blood cancer that attacks the bones. He hadn’t been pulling muscles. His bones had been breaking. He had 5 fractured vertebrae, 12 broken ribs, both clavicles were broken, and he had a fist sized hole in his right iliac that soon fractured. Everything we thought about our lives and the future was put on hold.

Wondering whether he’d live erased the question of whether we’d ever do rope or have sex again from our minds for a while. Yet what we learned about navigating his illness and my fears helped us regain a joyous, healthy, vibrant sex/kink/rope life regardless of what was happening physically.

In sports, the word ‘adaptive’ is used to describe dealing with physical limitations like skiing blind, or running with a prosthesis. We called learning to live, tie, and love with cancer Adaptive Kink. I don’t want anyone to think the ideas below apply to everyone, or that it’s a recipe for ‘winning’ chronic illness. These are the things that worked for us. Take what resonates with you and leave the rest.

Your body is not the enemy

When dealing with chronic illness it’s so easy to fall into the ‘warrior’ metaphor but then aren’t we fighting our own bodies? Tom lived with cancer. He was certainly sometimes frustrated with the changes in his body, but that’s different than fighting it. Fight your body and you can only lose. If something didn’t work, he’d back off and regroup. That might be a meal that suddenly wasn’t working for him, or a planned scene that we had to unplan or replan on the fly.

Tom’s cancer was the enemy, his body was not, and whatever his body was able to do on a given day we enjoyed.

Assume Good Intent.

Before his diagnosis, I’d been getting pretty salty about our dwindling sex life. In my head, he just wasn’t doing his PT or he was exaggerating the severity of his pain. I began to nag and felt rejected. He felt pressured, and, of course, he was in vastly worse shape than either of us knew.

In the early stages of his treatment, he was on high doses of steroids, and everything you’ve heard about ‘roid rage is true. He thought I was sabotaging his treatment, or deliberately making his life harder. It wasn’t him. It was the drugs, but it was hard for me to fully believe that.

We sat together and agreed that no matter what, we would each do our very best to help the other, and we’d chose to believe that we were both doing our best. We stopped taking things personally when something went wrong and, even when we were angry, we gave each other as much grace as possible.

Adapt or Die

We had always had excellent communication and could often seem to read each other’s minds, but cancer shook us. We needed new ways to interact. He was fully disabled for months. He could walk, a bit, to get from the bed to the chair and back, but even getting himself a glass of water was impossible. He was very touch oriented, but couldn’t hold me with all the broken bones. It was always hard for Tom to express his needs and now feeling helpless didn’t make that easier.

We created our own rituals. I’d sit on the floor with my head on his knees. He could stroke my head or wrap his legs around me. We both got the touch we needed, and we created a space where he could comfort me when I was frightened, and he could safely tell me what he needed. I think if you’d told us before he got sick that we’d be doing this we’d both have laughed, yet we adapted, and it worked.

Tom went in and out of remission over the course of 7 years before his death. We adapted to the big stuff, but we also adapted to the daily changes that happen when someone is operating on limited energy. Plans were always tentative, and if they got cancelled, we’d assume good intent and not dwell on it.

Enjoy What You Have

In October 2014, Tom was starting to go into remission but still pretty sick. We were invited to audit an intensive, but had no plans to tie. We hadn’t tied at all since February.

At one point the instructors gently handed Tom a hank of rope.

Tom wrapped the rope around me, sitting in the chair, and I wept. There were no knots – he had neuropathy in his hands and couldn’t tie. It was my husband, and his rope and intention and connection, and that remains one of the most powerful and intimate times I ever experienced in rope.

As he got better, he kept a rope kit and a stick next to his chair. He’d crook a finger, and I’d come over so he could throw rope on me and whack me a bit without having to stand up.

We began to realize that what mattered was us. Finding joy together mattered, 12 transitions in 40 minutes of suspension didn’t. Sometimes our rope would be pretty much like it was before he got sick. Other times it was a hank of rope wrapped around me in front of his chair. Whatever it was, we were able to enjoy it rather than think about what we used to do. Focusing on what we lost would have meant losing all the joy we were having.

Forget Your Egos

When we went back to events and started doing rope in public, it was no joke hard. We had always been a bit, if not show-offs, at least proud of our rope. We did cool things, where others could see us doing them, and that was part of our fun.

We had started doing things differently with cancer. Tom would usually stay seated, and direct what body parts he wanted. It was like ballroom dance. He led, I followed. He’d tie the main structures from his chair with me on the ground, then stand when he needed to run uplines. To our delight and surprise, one of the local rope spaces kept a rubber mat and a chair handy so they could cover grass mats and give Tom a place to sit.

We continued to take classes and go to intensives. It was easy for outsiders to think we were doing things wrong. When the bottom has limitations that’s more accepted now but when it’s the top there still seems to be more stigma. They’re supposed to be all rugged, tossing the bottom around and hauling them up.

Several times we got side eye from other students and criticism from the instructors because of the adaptations we’d made. Tom needed to conserve energy, but he wasn’t visibly disabled.

We just kept tying our way, and if people didn’t like watching it they could look away. Old sick people tying. Nothing to see here. Move along.

Laugh. Laugh a Lot

It’s in both of our natures to find humour in things. We took serious things seriously; it’s just that they went down smoother if we could make them funny.

When Tom needed a lot of care, we created a Minion/Evil Genuis dynamic. Neither of us liked D/s, and we never had a power dynamic, but he’d snap his fingers and I’d bounce around making Minion noises and get him what he needed. It turned the ugly truth of his disability into something we found funny.

If we’d gone a while without shenanigans, I’d say “Good sir, I would appreciate sexual congress at your earliest convenience.” Then I’d let it go and know that he’d start saving the energy he needed to jump my bones in a day or two.

The last month of his life, he was in hospital for a few days, and I was able to stay with him most of the time despite Covid. I discovered he was stealing the insulated plastic mugs from his food trays! He chuckled and said “these will be great on the boat!” He knew he wasn’t getting on the boat again. We laughed, and I took them home and made a little donation to the hospital. Now they’re my boat mugs.

Leave Nothing on the Table

Cancer taught us to take nothing for granted. It drove home with full force how lucky we were to have each other and how easily it could all disappear.

When he was in remission we traveled, we tied, we played, we enjoyed.

When he relapsed, we traveled, we tied, we played, we enjoyed.

How we did those things changed depending on our abilities. In remission we flew to Israel, Italy, Greenland, and did long road trips through BC and Alaska. We took the boat out and did suspensions on islands. We went to play parties and frolicked. In relapse when he was sicker and we were tied to an infusion schedule we did day trips. We tied in the family room in front of his chair. We pulled out the massage table at home.

Being fully present in the moment and thankful for what we were able to do meant that when he died, we truly felt he’d lived his best life and I had lived mine.

Someone commented at a party a few months ago that they were glad to see me out, because I had given up so much when Tom was ill. I was stunned. I hadn’t given up anything as far as I could tell. I’d still had rope and sex and the love of my life, and I had those things without compromise even if they’d had to change.

- Lisa (Tame Lioness) is a queer kinkster who organizes and manages online community spaces for rope bottoms and event producers. You can find her on Twitter at https://twitter.com/tame_lioness