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How My Life With a Disability Differs From My Childhood Dream

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When I was a little girl I dreamed a lot of what my life would look like when I was “grown up.” I dreamed that I’d be the best nurse in the world. I dreamed I would rent an apartment in the middle of the city. I dreamed I would have two boys and a girl in between them. Never did I imagine my life as it is today.

Today I am a nurse, so at least Little Alex got that right. She may have imagined a doctor’s office instead of an ICU, but close enough. I live in rural suburbia where I own my own house with a huge yard for my dog to run around in. I have a wonderful husband who was mysteriously absent from my childhood musings. And although I don’t have kids yet; they are a work in progress. However, there will only be two — hopefully both girls. But the biggest thing I didn’t see coming was that I am most definitely disabled.

I have lupus which causes me massive joint pain, fatigue, shortness of breath and chest pain. When it’s not actively flaring, people don’t know I’m ill. When it is actively flaring, people still don’t know I’m ill, but I feel it. I’ve been using a cane for those bad days for a year and I recently upgraded to bilateral crutches. The difference those crutches have made in my life is astounding. I am actually able to leave my house and do something with my husband besides a doctor’s appointment.

I was reminiscing on my childhood dreams as I was looking up how to get wheelchair service for an upcoming flight. I’m supposed to travel 500 miles to visit my friends and family. It’s a distance I’ve driven at least once a year (usually several times a year) my entire life. However, I can’t handle it with my current health state. Since the crutches thing has gone so well, I decided to look into wheelchair service for the airport. I know that much walking will cause more pain and fatigue and since I’m forking over an extra $150 to fly since it’s easier, I might as well take advantage of all the services.

I never once thought about being disabled as a child or even as a teenager when I was diagnosed. In fact, it’s only an identity I’ve recently accepted and been proud of. I’ve hidden my illness from friends, from teachers, from coworkers. I’ve minimized its seriousness more than once. But as of late, I don’t want to hide anymore. I want to embrace mobility aids and whatever else I discover might help so I can keep living life. I want to be able to tell someone when getting up and walking is just too much instead of ignoring what my body is telling me. I want to take care of myself and live my life, even if that means I need two extra legs or some wheels to help me do it. My life may not be what Little Alex dreamed of, but it is pretty wonderful, disability and all.

Getty image by Hakase.

Originally published: September 11, 2018
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