My friend Dominik Parisien is a disabled writer, editor and poet; in the latest issue of Maisonneuve he talks about his childhood experience with a faith healer, and draws this, shall we say, pointed parallel between that sort of quackery and the magical thinking people engage in with the disabled: “These misguided attempts at healing aren’t just carried out by religious people or practitioners. […] Disabled and chronically ill people are constantly told our conditions exist because of a lack of belief, or effort, or willpower. A better attitude will cure you, or yoga, or a new diet. Abled people, religious or not, remain convinced they can heal us, and will try to do so, whether we welcome it or not. This happens everywhere from houses of worship to doctors’ offices, rehabilitation centres and care homes, to places entirely unrelated to treatment like schools, parks and restaurants.”
We’ve both installed the COVID Alert app, even though it’s not fully functional in our province (so far it’s just Ontario). We can’t report a COVID diagnosis, but we can get notified if someone from Ontario we’ve come into contact with does report a positive COVID test result. Since we live near the Ontario-Quebec border, and sometimes have to cross into Ontario for errands and such, there’s already some value in installing it.
It can’t run on older phones (on the Apple side, older than an iPhone 6S or first-gen SE) because of hardware limitations, I believe. It makes use of the Apple/Google API, which has strong privacy protections: the only things it shares with the server or with other phones are anonymous tokens. The privacy protections are such that Michael Geist is comfortable installing it, which is something.
It’s in that context that I have to look really sideways at a CBC article that suggests that some people could be identified by the COVID Alert app.
I imagine that everyone with a serious or chronic illness knows the date of their diagnosis. Mine was January 13, 1998, which is to say 22 years ago today.
The diagnosis was by that point a formality. I’d known something was up since June 1997—I was in constant pain and I had trouble walking and sleeping—and had been talking to doctors and undergoing tests. The previous month I’d received results from a bone scan that suggested a possible diagnosis of ankylosing spondylitis—a disease I’d never heard of before, though it turned out that there was a family history of it. The rheumatologist reviewed that family history, the symptoms and the test results and concluded that I had a “textbook case” of AS.
(As it turns out, my case is not so textbook, or at least the textbook has since changed. A 2012 MRI revealed no evidence of spinal fusion after 15 years, which made a different rheumatologist wonder whether I had AS at all. She retracted that doubt at a later visit when I arrived in flare and she saw how I walked. I suspect that what I have is non-radiographic axial spondyloarthritis, which is similar to AS and is treated the same way, but doesn’t involve spinal fusion and doesn’t show up on X-rays. I’ve yet to run my theory past a rheumatologist, though.)
I’ve been living with that diagnosis, with modifications, for more than 22 years. I’ve always been open about my illness (much to my mother’s horror) and I used to talk about it a fair bit—I even ran a blog about it for a while—but lately I’ve been talking about it a lot less. That’s not because I’m doing better, because honestly I’m not (though there still seems to be no sign of fusion). It’s because talking about my illness is, even after all the elapsed time and the care received, still a potentially hazardous activity. Even under best-case conditions, talking about my illness requires a tremendous amount of emotion work.