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Know One Thing, Spina Bifida

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Dear spina bifida,

We got along pretty well at first. I could deal with the fact that I couldn’t do certain things, as long as I had some control over my body and knew what to expect from day to day.

Now, I feel as if I’m in a constant battle every single day. The pain comes and goes, and with it, my energy level ebbs and flows as well. There’s never a day without some kind of pain, and taking a pill every time some random part of me hurts is just getting old.

I miss being able to walk and walk and walk. I miss independence. I miss feeling confident getting on a bus and going wherever I want whenever I want. I appreciate the freedom having my wheelchair allows me once I’m actually out of the house, but I feel as if I’m inconveniencing everyone in my life by needing it.

I miss being able to go out for a meal without worrying whether my bladder or my bowels are going to rebel on me before I’m finished eating. My social life is all online nowadays. At least if I have to clean up, no one will see my embarrassment.

Know one thing, spina bifida. You have not won. I do not surrender. I will find a way to overcome these obstacles. I will find a way to live my life again. I will regain control over my body, because I am in charge. Not you. Never you. Even if these things never change, I will get my life back. I will get me back.

Middle finger primed,


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Originally published: March 17, 2015
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