Gripping the Pen: On Writing and Death by Kaleigh Trace

But this is starting the story at the end. There is a different beginning somewhere, or several wheres. One could be in 2014. I’m a blogger. (I cringe! It’s like copping to having loved the movie Garden State, or having worn Ugg boots with my “going out shirt”!). I am blogging about sex and disability and shame and blow jobs. I am working as the education coordinator at a feminist sex shop, running classes on dirty talk, butt stuff, and sex acts of all sorts. I am good at my job and I am thriving. I’m offered a book deal, based on the relative popularity of my aforementioned blog and I take it. At 27, I write a tell-all memoir about my sex life as a queer, disabled femme. I am Icarus and I just got my wings, baby! Fuck the sun, I’m flying so high! No shame, no regrets! And at this moment in time, the sun relents. My waxen carrier does not melt away on me, I am not plunged into the sea to my death. My book is relatively successful and I tour the country speaking about the desirability of my disabled body, of all disabled bodies. I get some good reviews, win an award, have excellent sex and earn very little money. The death part comes later.

Another beginning could be August 1995. My family and I are in a car accident that changes my life. I sustain a massive spinal cord injury and become a paraplegic. For a part of my childhood I am in a wheelchair, and then miraculously, I am not. As I hit puberty my body heals and I move from my chair, to a walker, to a cane, to what I still have now, a careening gait, inimitable. I learn a lot through these years. I learn about what it means to live in a body that has been marked as inherently less than other bodies. I learn to respond to others’ judgment with a defiant self adoration. I come to trust my body unconditionally. In some ways this is a happy story. Girl survives car accident! Our hero walks again! Through suffering comes growth! As a narrative arc it works. The death part comes later.

The year 2022 could be called the three-quarter mark, or maybe the beginning of the end. I’ve traded in dildos and the buttplugs and become a couple’s therapist. I’ve completed graduate school. I have fallen in love. I have a dog and a cat, and I have built up a private practice that sustains me. Have, have, have—I notice the repetition of the word in this descriptor. I had it all. I’ll admit to being cliché—I practiced non-monogamy and punch needling; I wore beaded necklaces and linen pants and thick plastic-rimmed glasses. I read books about attachment injuries, childhood trauma and sexual healing. I was quite happy in my life, and did not mind the banality of it at all.

It was in this year that my publishing house reached out to offer to republish my memoir, Hot, Wet & Shaking, as a ten-year anniversary edition. I’ll admit to some ambivalence. I wrote a memoir about my sex life at 27! I wrote about pissing on a lover (not planned, not consensual)! I wrote about biting a cock mid-fellatio (not planned, not consensual)! How would this land for me as a 37-year-old professional therapist? What if my clients read it?

I deliberated but in the end could not resist. It’s either because my rising sign is Sagittarius, or because my parents instilled in me great confidence, but I love an audience. I liked the idea of touring my little book again, of being older and wiser and revisiting a semi-fictionalized version of me. I agreed, signed a contract, and sat down to edit my younger self.

One month later I received a call from my doctor. There had been some signs that I had cancer. We were running biopsies and scans and attending to this possible danger. I was alarmed but there was no reason to be alarmed, the oncology team kept saying. We had many means of possible defense at our disposal, and besides, cancer is commonplace now. But the doctor had called with bad news. The cancer was there. Not only was it there, in the treatable organ that we had suspected, but it had already spread, fast and undeniably. I asked over the phone: “Will I die?” The doctor said: “ Frankly, yes. Will you be comfortable for a while? Sure. But you will die.” He estimated I had about two years.

It seems almost funny now to ask if I would die. Of course I will die! We all will! If not by cancer then by bus, plane crash, broken heart, or old age. But we let ourselves forget this inevitability while we are in the throes of living. I had let myself forget. My life felt so good, so complete. I felt as though I couldn’t and wouldn’t lose.

But! But. Things change. I set about the work of dying. I closed my practice. I put my affairs in order. I started chemotherapy, which, if you’ve done it, you know that it feels like death. And I edited my book. It’s either because my sun sign is in Virgo, or because my parents instilled in me great confidence, but I like to get a job done. It felt important to have a tenth anniversary edition published as I was on my way out of this earthly plane.

The vertigo of reading the voice of my young, vibrant self while grieving and preparing for death is indescribable. She was so bright and I was so sad! The point of Hot, Wet & Shaking had been to write erotic joy on to my disabled body. At that younger age I had felt so hemmed in by narratives of pity, illness, and pain. I was disabled and I was alive! My body was beautiful and sustained me and I loved it! I was acutely aware that it was because of my disability not despite it that I could access great pleasure. And my memoir was about this—the joy in difference, the delight available to each of us if we trust ourselves. It was a celebration of living! How strange to read as I was actively dying. How strange and how wildly freeing. 

“The vertigo of reading the voice of my young, vibrant self while grieving and preparing for death is indescribable.”

Disabled people know about death. Our bodies and our illnesses bring us close to it. And knowing about death helps us to really feel into being alive. It’s the knowing that this is all temporary that brings us closer to exaltation. When I wrote Hot, Wet & Shaking I was not writing about my death, but rather I was honouring my presence. When I edited it ten years later all I was doing was dying, and being in this conversation with this remarkably alive version of me was a gift. It turns out this is all the same coin, that actively dying and being deeply, presently can only exist in relation to the other. I was reminded that grief is symbiotic to joy, that death is  inevitable to life, that we live between these states, each of us. The ten-year anniversary edition came out June 18, and I am still here, even though I wasn’t sure I would be. I get to tour it again, and be disabled and proud and vibrant and here and dying and sad, all in community. 

When I found out that I was going to die, my first response was a great gripping. We’re at the end now. I am dying. Cancer continues, and the amount of time I have left is unclear. But when I remember that we are all dying, what was a grip becomes an open palm. There’s this interview with Maya Angelou that I’m living by (or more rightly, dying by) and she says: 

“Once I really admitted that I would die, that it is the one promise I can be sure will not be reneged upon, once I understood that then I could be present, and I am totally present all the time…”

The interviewer responds:

“Now that could be a dangerous philosophy if you think that you’ve got to live every single moment because you could be greedy…you know ‘take everything I can, now, now now’…but you don’t mean that?”

And Maya Angelou says:

“No, maybe just the opposite. Give everything you’ve got! Not take, I mean, what is that? Give everything, all the time. It’s great fun. And it is liberating, absolutely liberating.”¹

My palms are spread open. No shame, no regrets! Give, give, give! 

1. Angelou, Maya and Nicholson, Mavis. Original video source unknown, posted on Instagram by Dailystoic on April 15, 2024. ↩︎

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Kaleigh Trace is a writer and therapist living in Toronto. In a previous life she made sex education her business. Her first book, Hot, Wet & Shaking: How I Learned to Talk about Sex was published in 2014 and won the Evelyn Richardson Non-Fiction Award. The 10th anniversary edition (2024) includes new essays and an afterword from Christa Couture. Kaleigh’s work has also appeared in Toronto Star, Toronto Life, The Coast, Shameless Magazine, and on CBC Radio’s Tapestry. Kaleigh has a Masters of Science in Couple’s and Family Therapy and passable punch-needling skills.

Photo of Kaleigh Trace by Hannah Zoe Davison.