Notes from a Changed Life
Essays about disability, family, identity, adaptation, and the strange business of being alive.
THE TRIP WAS WORTH IT. MY BODY STILL SENT THE BILL.
from the VAULT The first accessibility failure of our family road trip happened about an hour and a half outside Oshawa. We stopped at an EnRoute along Highway 401 so I could use the washroom. I went into the accessible stall, closed the door and discovered that the lock did not
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WHAT FEELS IMPOSSIBLE TODAY?
from the Vault: A woman wrote about her husband living with progressive MS. He had spent years being misdiagnosed. Years knowing something was wrong while being told, in one way or another, that it was not what he thought it was. Now the diagnosis was real.
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I AM ALLOWED TO LIKE MY LIFE.
from the Vault: When I say I am allowed to like my life, I think I am pushing back against pity. The idea that because I am sick, everything about my life must be tragic. That because MS changed my body, I am only allowed to talk about loss. That every good thing needs a sad
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CARE IS NOT WEAKNESS
from the Vault: MS has a way of stripping the decorative bullshit off a life. Before my body changed, I could still believe some version of the independence story. Work hard. Push through. Be useful. Stay strong. Keep up. Then my body stopped letting me pretend. Suddenly care was not an abstract idea. It was not a political word. It was not...
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MS TOOK A LOT. IT DID NOT TAKE EVERYTHING.
from the Vault: I want to say something for the newly diagnosed people. Especially the ones sitting there with that fresh diagnosis still ringing in their ears. I am a 17-year MS vet. I have secondary progressive multiple sclerosis now.
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