It’s not our job to make non-disabled people comfortable
So, I made the reel. And then I got a comment from some guy — actually, multiple comments.
Clearly, what I had to say really upset him.
He told me that I was overreacting. That people can’t help where their eyes go. That I should have used humour to put her at ease — that it was my job to help her feel more comfortable with my disability.
Read that again.
He was literally telling me that when someone stares at me for the way I walk, I should be the one to help them feel better about it.
this wasn’t the bridal experience I dreamed of
I’ve spent most of my life noticing how people react to my disability. It’s a sixth sense that most of us with apparent disabilities have developed over time.
The awkwardness. The stares. The polite-but-weird energy that forms when we enter the room.
And when I got engaged, I felt it again.
what to do when the future feels uncertain
Living with a progressive disease like Charcot-Marie-Tooth disease (CMT) means living with uncertainty.
I don’t know exactly when things will get harder or how much my body will change. I just know that it will.
This is the part of having a progressive disease that people don’t talk about enough.
Not just the physical changes, but knowing your future isn’t in your control.