#disabled relationship

Dec. 21, 2025

******

For a long time, I’ve had this Thing about death.

Hospital kids will relate, but I’ve faced a lot more mortality in my 26 years than a lot of people do till they’re many decades old. Medical trauma is something else. I lead a full life, truly. But I almost died a dozen times before I could drink, and that does shit to a person. Changes your worldview. It’s hard for it not to.

I’m terrified of it. I’ve written about it, including on here. But for years, the fixation has specifically centered Stella Young, this comedienne with Brittle Bone Disease—my same impairment—who I just adored. She was brilliant. So fucking funny. Career journalist and activist. Taught me what ableism and inspiration porn actually mean.

But see, Stella Young died. She was 32 years old. It wasn’t even violent, from broken bones. She was at the height of her career, and she just. Died. In her sleep one night. At home with her family.

It makes pretty much everything nauseating when you have that clock on your dashboard. Because no, your 20s aren’t supposed to be perfect—my generation has had SO much stacked against us economically, tons of struggle we shouldn’t have had to face, plus Trump has been President most of that time for me. But people will say, “Oh, I wasn’t happy in my 20s either, things get better, I didn’t make it as a writer until my 30s/40s/50s etc, early rejection is normal, you’ll find your people, you’ll find love, it’s never too late,” and I used to think, “That’s real nice.”

“But Stella Young died at 32.”

“And she didn’t see it coming.”

She had a worse type of Osteogenesis Imperfecta than I do, I have a fairly decent prognosis and medical care, lots of people with OI make it a lot longer than 32, and I’m diligent with at least that area of my health. But honestly? It still hangs over me.

This trip South for the holidays, my partner gave me a rainbow tie-dye hoodie of theirs to take with me. It’s a crop top, because they know those fit my little torso better; rainbow, which reminds me of the more accepting home that’s waiting for me; and covered in butterflies, one of my favorite animals. Each thing a moment of thought and care. There’s a big orange Monarch butterfly front and center, fluttering over my chest. Monarchs—Appalachian natives just like me, who fly this same route every year—only live as adults for 2-5 weeks. They’re born, pupate, metamorphose, mate and fly—braving incredible dangers for such a short time, burning bright and beautiful farther than ever should be possible.

Usually when I travel to see family, I feel dwarfed by the enormity of it all. The complications of the South, bigotry its own royalty; my cousins—who, despite being younger than me, often have their accomplishments celebrated threefold more; frequently a dire lack of wheelchair access. It’s not all bad, but I end up dissociating through much of it.

All this madness and sadness, and Stella Young lived 32 years. Monarchs fly 2-5 weeks.

This winter, though, I’m finding it haunts me a little less. For the first time in a decade, I feel truly supported in a community of friends who love me. My brother and I have an apartment of our own, a home we made and love. After a lifetime of unhappy relationships and rejections, I was brave this summer and admitted feelings for my lesbian best friend. We’ve been dating for 3 months, and for all the horrible (unrelated) chaos that’s happened in my life this fall, our relationship so far has been a better love story than I ever thought to write, much less hope for. I survived young love and found myself with someone you can build a real home with.

I think what used to scare me most about death is that I hadn’t really lived, yet. I have so much to live for, so many more dreams, and I hope I get many more years to enjoy it—creativity, community, and all this love I’ve pollinated along my way. This week, living totally alone for the first time in more than 6 years, my friends and partner all took such wonderful care of me; I advocated for myself and did some awesome work with theatre friends; my partner and I fall more into caring love with each other every day; and all of them reminded me of that. But I am less scared, now, of death and bigotry, or whatever may come. Because I have lived, loved, made great art, and been loved deeply.