4

I have friends that love their birthdays – they look forward to it, talk about it and plan celebrations. I feel much more neutral about mine.

But I have my own significant dates that I celebrate. Rather than marking the day I was born I mark the dates that I didn’t die. My diagnosis anniversaries.

For years I silently observed the anniversary of my diabetes diagnosis every year. All day I’d remember my time in the hospital. I’d remember learning to count carbs and take shots and test my blood. I’d remember sitting in a small room waiting for nurses to bring me my scheduled snacks of crackers, cheese, and diet ginger ale. My mom and I were supposed to watch educational videos where puppets learned about diabetes but instead we watched Disney’s Tarzan. I’d remember coming back to school and having to explain it all to my friends.

As I sat with these memories each year I never knew quite how I felt. Sad but also relieved. Lucky to live in a time and place where insulin is readily available but also a bit robbed of the ease of a normal life.

Then one year I decided that I was going to change my perspective. I decided that my anniversary was a day to celebrate. Like a birthday, it was a date to mark the psssage of another year. But with more significance than a birthday because it meant I had survived another year – and not by accident. I work hard every day to stay alive and to stay healthy. I’m kept alive artificially through medicine, the health care system and a tonne of effort on my own part. And I feel like that’s worth celebrating.

So every year I treat myself on that day. I buy myself a gift that I wouldn’t otherwise spend money on, or I take the day off work and do whatever I want – thrift shop, sit in cafes, read, go to the art gallery… It’s like a private birthday where I get to do whatever I want.

Four years ago I gained another day to celebrate. February 4 is the day a doctor first said the words myasthenia gravis while looking at me.

Diabetes feels like a mainly private disease – the calculations happen inside my head and it’s rare that any symptoms are visible – so I usually mark it on my own. But myasthenia is a different beast. It’s wild and visible and disruptive and it involves a lot more people in its management. And my celebrations are similar – usually ordering in pizza and hanging out with friends (including 5 loud children).

I can’t find the reference now but I read once that before modern treatments were available for myasthenia gravis the life expectancy was 3 to 4 years from the date of onset. (Now it’s a normal life expectancy and rather than killing all of us only 3-4% of us who have the disease will die from it.) So this year feels significant. Four years.

I’ve been thinking a lot about funerals and documenting my needs in case I’m ever unable to advocate for myself, and maybe I’ll write about that another time, but right now I’m looking forward to going out and having a proper little party to celebrate the fact that I’m here and that I can.

Happy anti-death day to me.

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