October 2026 - Vol. 23, Issue 5

I met Todd online. I was tired of only having my romantic options be the other graduate school students in my PhD, an incestuous group who often had dysfunctional romances with each other. I gathered the energy to return to online dating, which I had used before to find queer women in my small hometown – a true challenge that necessitated technological assistance! – this time choosing Lava Life.

I’d promised myself that I wasn’t going to date anyone outside of my city, Edmonton; my graduate school friends and their romantic situations seemed exhausting, and I longed for something more straight forward. But I saw Todd’s profile picture  and was intrigued, despite the fact that he lived in Calgary. He asked thoughtful questions that far outpaced the typical “what you up to” I’d been receiving from other men.

Our conversation was fun, engaging, and flirtatious, and we agreed that Todd would come to Edmonton so we could go on our first date. The night of, he texted to say he was caught in traffic and would be late. I phoned my sister Caitlin to both tell her about the date and to complain about him being late. “Am I getting stood up?” I asked her, pulling my tights on and fixing my bangs. “No no,” she replied. “I’m sure you’re not.”

He finally got to the city and we met at O’Byrne’s, which sold itself as an Irish pub. I got a Guiness, both because I genuinely liked the foamy, bitter taste of it and because in my teenage years I’d gotten into a bad habit of trying to impress men with my ability to drink. I was in fact a lightweight and this strategy had ended in some terrible nights of me throwing up in front of the people I was trying to impress, but I hadn’t learned to shake the habit.

We moved to the back of the bar, where the noise was dampened. I was nervous. I hadn’t been on a proper first date in a long while. But the easy flow of our online conversation remained the same here. I got up to go use the washroom and considered my next steps.

I had assumed that I wouldn’t be inviting him back to the flat I lived in. Our toilet was clogged, and I didn’t want to expose anyone to that disgusting mess. But I was so taken with Todd that I was absolutely going to spend the night with him, functioning toilet or not.

In the weeks that followed, we texted, we talked through video calls, and he came to visit me. I was smitten with him. He was so kind, so funny, and so weird in ways that were incredibly appealing to me. But even as I was flush with the excitement and giddiness of this new relationship, I was haunted by my genetic status. When I was 20, I was diagnosed as gene positive for Huntington’s disease, a chronic, debilitating illness that impacts cognitive and motor skills. “Gene positive” means that I inherited the genes for Huntington’s disease from my mother and will likely become symptomatic at the same age that she had, in my late 40s or early 50s. I was living at home when my mother first showed signs of Huntington’s disease, and being pressed up close against the early stages of her illness had left parts of me permanently changed too.

When I was subsequently diagnosed as gene positive for Huntington’s disease, I kept churning over in my head how I would possibly tell people who I was newly dating. Too early disclosing the news that I would eventually be as shattered by this disease as my mother was – that I would share the slow but sure decline of physical and mental capacities - and I might scare them away. But I couldn’t escape the feeling that I had a responsibility to inform potential partners of the uncertain, difficult future I believed I embodied, particularly because I had a fifty/fifty chance of passing the disease on to children.

These same anxious thoughts buzzed in the back of my mind even as I went on fun, silly dates with Todd. Early in our relationship, I decided I couldn't hold off on the conversation anymore and I planned to broach it the next time he visited me. One night, when he’d travelled up to Edmonton, I sat him down on the lumpy futon in the living room. Both afraid to say it and desperate to get it over with, I told him about my mother’s Huntington’s disease in more detail than before, and about my own gene positive diagnosis. He hugged me, saying he was sorry and, “It’s okay. It’ll be okay. I’m not going anywhere. And we don’t know what could happen. I could get cancer.”

Though I felt relief at knowing Todd still wanted to be with me, a pang of worry and frustration still ran through me. To me, his quick acceptance both affirmed my trust in him and demonstrated his ignorance. “He doesn’t really know what he’s in for or what I’m in for. He can’t,” I thought to myself. He had never seen someone with Huntington’s disease, not in the way I’d watched it ravage my mother: the breakdown of the body, the loss of memory, the strange, frightening new symptoms that would emerge in my mother just as we were getting used to the last ones. And, though Todd’s insistence that no one was guaranteed health was true, there was a gulf between the hypothetical illness he may or may not develop and the certainty of my fate; I felt a flare of resentment at the implication that we were the same.

I wanted both to warn Todd off and to try to keep him as close to me as I could. I’d spent so much of my young adulthood with a determination to not worsen my family members’ lives, particularly when my mother became sick with Huntington’s disease and my father developed cancer. I was left trying to ensure I wasn’t a burden on anyone. And I felt like my genetics meant I would inevitably make Todd’s life harder.

Before I met Todd, I’d hoped to have a romantic partner that could take care of me when I got sick. But now, it felt like too much to ask from any person; it made my dynamic with Todd feel lopsided, like there was a future debt that I had to pay off. I’d watched what my father had gone through as my mother’s primary caregiver. He was devoted to improving her quality of life, but also didn’t leave himself time or energy for hobbies, for friendships or even familial relationships. I didn’t want that for Todd.

I felt compelled to tell Todd about the horrors of Huntington’s disease, like the time when my family was at a movie theatre and my mother and I went to the bathroom before heading home. My mother was unstable on her feet, but still able to use the washroom by herself – as far as I knew. When I left my own stall, the smell of feces hit me through the sterility of the recently cleaned bathroom. My mother wobbled out into the fluorescent lights, and I could see that her stall was covered in her own excrement, as was her outfit. The worst part was my mother didn’t seem to understand that anything was wrong, looking at me with her same gentle smile. In a rush of panic and shame I hurried her out, away from the stares of the other women in the bathroom and toward the parking lot where my father was waiting. As I held my mother’s arm to balance her as she walked, I felt how unfair it was that I had to navigate situations like these and wished for some adult, for my mother even, to take charge and spare me from it.

I told Todd these stories because in the comfort of his arms I could feel some relief from the grip of these memories. But I also revealed my trauma because I wanted to know if he was going to run or show himself to be ill-equipped for the life that was ahead of us.

At the same time, I wanted to hide us both away in the comfort of our new relationship, like the week that I spent at Todd’s place in Calgary. He came up with a list of activities he thought I would like until we finally realized that what we both wanted was to cuddle up and watch episodes of Friday Night Lights, the American football drama. Sitting on the black faux leather couch in Todd’s basement apartment, I felt a deep sense of joy at being my truest self. In times like these, my anxieties about Huntington’s disease faded into the background.

The push and pull of those anxieties continued as our relationship became more serious. Eventually Todd moved to Edmonton, and we started living together. We discovered a shared love of reality TV and would quote the contestant on Top Chef who threw shade at another contestant who cooked a lot of scallops: “This is Top Chef, not Top Scallop!” We worked through the complexities of a shared life, including the more mundane negotiations like who mows the lawn – Todd – and who takes care of the garden – me. One very average day when we were in our kitchen, Todd mentioned something about us getting married, sending through me a thrill of wonder at my luck. I tried to trust that he understood the life he was signing up for.

We talked about kids. At that point, we both said we wanted them. I was early enough in my own diagnosis as gene positive for Huntington’s disease that it felt like maybe there would be some kind of miraculous breakthrough, if not for me then for the next generation. One night, Todd and I speculated about whether we should speed up our hypothetical children plan. “What if you got pregnant …soon?” Todd asked, and I indulged in the fantasy. I was still in graduate school, but maybe I could be one of those people who has children while finishing their degree. And maybe it would be brave to choose to have biological children.

I recalled my sister Caitlin’s stance on the subject: “Not having biological kids is like saying that you and I shouldn’t exist just because we’re gene positive for Huntington’s disease, or like Teeny shouldn’t have been born.” Teeny was our cousin who had Down’s syndrome, a sweet, sassy fixture in our lives. Maybe I could be like my great aunt, who had cared for Teeny with love and good humour.

In periods like these, my attitude towards getting pregnant bordered on a righteous rage. As my mother’s illness took away bits of her at a time, my sorrow at the loss sometimes turned into anger at the world. That anger was justified by a society that dismisses the needs of disabled and chronically ill people and devalues their lives, but it also masked my own more complicated emotions.

It was easier than admitting that I struggled to know what to say to my mother as her memory failed, or that I sometimes dreaded visiting her – confronting the harsh realities of the Depends diapers that she wore, its white ridges showing above the waist of her blue jeans. At times I found my mother’s body – and what it meant for my own when I became symptomatic with Huntington’s disease – too difficult to look at.

Amidst this morass of fear, love, and guilt, anger had a clean clarity. I was ready to fight anyone who would question whether a person with Huntington’s disease could have a valuable  life. After all, I reasoned, after my mother got sick she’d still had friendships, grandchildren, and joyful moments, like looking through my wedding pictures. She’d point at an image of me and Todd and say softly, “Oh, I just love this one!” It felt powerful to commit to having biological children regardless of my gene positive status, and like this commitment would somehow erase any of the darker feelings I’d had about my mother during her illness.

There were moments, though, when doubt crept in on me. As I got older, I had enough perspective to better understand how difficult my life had been, particularly my young adulthood. While my friends were getting into petty teenage drama, I’d witnessed my mother’s difficult decline and received my own devastating diagnosis as gene positive for Huntington’s disease. At times, it seemed deeply unfair to get pregnant with a child who might have the same kind of life as I’d had.

Todd and I turned over the possibility of adopting. Part of me still clung to the idea of getting pregnant as some kind of radical political act, but increasingly it felt like a kindness to my hypothetical biological children to decide not to have them. “Look at my brother!” I would say to Todd. My older brother Brendan was also gene positive for Huntington’s disease and had stood firm in his decision to adopt his daughter. Todd and I speculated about adopting a child who could escape the health issues in our gene pools, including Huntington’s disease. “What if we adopted a kid that didn’t have bad eyesight?” I joked, gesturing to my own thick glasses and to Todd’s. “Can you even imagine?”

Though I didn’t always let myself dwell on it, lurking through many of these conversations was the awareness that I might not want any children at all, adopted or biological. I would visit my sister Caitlin, who had three kids that I loved deeply. But, when I visited, I would also get overstimulated by their totally normal behaviour. The toddler’s shrieks of joy would start to grate on me, or I would get distracted by my niece and nephew both trying to have a conversation with me at the same time. I would leave these visits grateful for the time with them and wondering how overwhelmed I might feel with my own kids.

During this period of uncertainty, Todd and I babysat our friend’s child, a one-year-old who spent most of the night crying. Eventually, I wound up on a rocking chair, shifting back and forth as the baby slowly fell asleep on my chest, with Todd on the couch next to me. Under the light of the nearby lamp, Todd and I made wild eyes at each other. He blurted out, “I don’t know if I can do this. This is crazy. And it was just one night!” Knowing by “this” he meant parenthood, I nodded in agreement. The sweet warmth of the baby couldn’t outweigh how worn out and on edge I felt.

Later, Todd and I debriefed in the quiet of our own home. I tried to find words for what I was feeling: “All the parents we know talk about how much stress kids created in their relationships with their partners, or like about how you get further apart because the kids take priority. And I don’t want to get further from you.” I felt a sudden surge of emotions, wiping at the tears in my eyes and pushing forward: “I want you to be the thing I stay close to and love the most.”

In moments like these, when I let myself imagine what life would look like without children, I would often be stricken with guilt. I’d spent so much of my young adulthood understanding caregiving to be the most important thing I could do, a role I had taken on – or at times felt forced into – through my parents’ illnesses. I knew I was loving and kind, and motherhood seemed the obvious next step. Who was I if I wasn’t tending to someone else’s needs? But, as I allowed doubts to seep in, I found whispering in my head, what if? What if I found other just as valuable ways of being in the world as motherhood?

When I completed my PhD, I felt that it was time to determine what the rest of my life would look like. Todd was leaning toward not having children, but was adamant that I had to make my own decisions without the pressure to appease him.

One day, I was in my therapist’s office, staring at the bizarre image of a patch of brown shag carpet she’d hung on her door to try to provide soundproofing for her sessions. She asked me to describe how I imagined my life with kids. With a tightness in my chest, I conveyed the vignettes that had floated through my head for so many years: me, pregnant, a shirt stretched over my swollen belly; Todd telling silly stories to our children in his dry, deadpan voice; another grandchild to add to our parents’ lives.

“Okay,” my therapist said in her calm, even tone, “And now what about a life without kids?”

I burst into tears.

“Where is this emotion coming from?” she asked.

“I’m happy,” I choked out, “I think I would be really happy. Going on road trips with friends. Reading a whole book in one day if I wanted to…I just…I’m so tired of taking care of other people, and I don’t think I want that to be my whole life. I want to be happy and have adventures with Todd while I’m still healthy.”

I breathed more deeply, slowing down and feeling my body relax into the chair. I felt an unexpected sense of relief. It was okay to say right out loud that I wanted to centre my needs. It didn’t make me less of a valuable person or of a loving, caring family member.

It’s just that my family was going to be a small one – me and Todd and a couple of cats – and that sounded pretty great to me.