Sometimes I forget that I’m living with a disability
What seems completely normal to me may not be to everyone else
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For me, growing up with Gaucher disease involved a dichotomy of sorts. I did all the “normal” things kids do, but at the same time, my parents and doctors would tell me to be careful and remind me that I was disabled.
I never had the privilege of experiencing life before my diagnosis with type 3 Gaucher disease.
People often say things that remind me of my condition. When I was a young girl, my classmates would ask why I blinked so much. When I was a teenager, my driver’s ed teacher pointed out that I did “a weird jerky thing” when I moved my head. Of course, those around me noticed my slower eye movement.
The symptoms that may be obvious to others can fade into the background for me because I live with them every day. For example, I was recently going about my usual morning routine: I woke up, went to the bathroom, brushed my teeth, applied moisturizer, and put in my contacts, only to realize I had forgotten to take them out the night before. I had forgotten that, thanks to Gaucher disease, I don’t have 20/20 vision.
So what is it like to forget you’re disabled, only for the world to remind you? Honestly, it sucks.
The reminder often comes out of nowhere. A few months ago, I was helping to plan a social event, but when the announcement went out, I realized the chosen venue wasn’t accessible. Suddenly, I was slapped in the face with the reminder that, as a wheelchair user, I can’t go to all the places the people around me do.
Five minutes earlier, I hadn’t been thinking about my disability at all. I was focused on my friends and enjoying time with them. Then Gaucher disease once again took center stage.
These reminders don’t always come in the form of inaccessibility. Sometimes they come through simple conversations. Having to explain my lived experience is often a wake-up call, reminding me that what seems completely normal to me may not be normal to everyone else.
It’s like everyone else is talking about their favorite celebrities while I’m explaining quantum physics. Sometimes I forget that the only person living in my reality is me. The rest of the world doesn’t experience things the same way I do.
It’s not that disability isn’t a huge part of my life. Because I haven’t known life without it, to me, it’s just normal.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
