It’s been a little while since I posted because I have been tired, tired, tired. Typing hurt my hands. My computer monitor hurt my eyes. My chair hurt my lower body. Depression took over, and I didn’t notice, until it was too late and I was miserable.

The depression is still lurking now, although I have adjusted some things to reduce my pain. However, there is legitimate grief and sorrow behind it. I’m worried about my sister, who’s been going through a lot recently, even as she has been happy. I am grieving for the life I had before my diagnosis, which will never come back, even if my symptoms go into remission long-term. It’s a long fight ahead of me to regain the muscle tone I lost during my recent illnesses and the lack of exercise due to joint pain, let alone navigate my career prospects in science. And then there’s that nasty internalized ableism to fight…but that’s the subject of a post that’s coming up soon.

Amidst everything, then, this is a thought I’ve had recently:

My sister is now more like me – she’s experiencing the rollercoaster of puberty. I am now more like my sister – I’m experiencing the frustrations of my body hurting and changing without my desire.

When she first moved into her own apartment, I didn’t call her very often. Lily and I, frankly, are very good at irritating each other, as so many siblings are! I was finishing my dissertation, and very stressed. I always know that I love her, and I often fiercely defended her or spoke highly of her, but I have had a period of time during which I just didn’t want to be around her very much.

In the last couple of months, though, I’ve been calling her much more frequently – at least once a week. I feel closer to her now than I have in a long time. It’s one of the best things about my current identity/medical crisis. Maybe we’re finally getting to know each other as grown-ups…


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