This is a letter to my disability. I haven’t done it for everything that’s wrong with me, but I need to. It might make you feel like you have some power and control over your life.
Dear spina bifida,
You and I 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 with some part of what you’ve done to me 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 go 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. 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,