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Deb and Shooter |
I live with Behcet's disease, a rare autoimmune disease where I'm in constant pain (the pain began 12 years ago when I was 15, the diagnosis for the pain wasn't solidified until I was around 23). Medication and exercising through walks usually help me keep the pain at a manageable level. There are some days, however, where wearing even the loosest, softest, gentlest clothing is excruciating (some days, I can't even be touched or touch myself) because my nerves are so sensitive and no amount of medicine can even take the edge off.
When people suggest a person with a disability is better off dead (having been aborted), it is a slap in the face because they're telling me I would be better off not existing. Yes, life is hard. Yes there are some days I feel so low I don't know what to do or how to feel or how to cope. There are some times where I have to take it one day, one minute, one second, one breath, one heartbeat at a time....but that's part of the human experience.
If I didn't have the low parts of life, I wouldn't be able to fully appreciate the high parts. If anything, my disease has helped me more than hindered me. I'm more compassionate and empathetic than I was before the pain started. Yes, it's made my life more difficult but it's also been the epitome of creating beauty out of tragedy and brokenness. I am like a glowstick: once dull and grey at the beginning or my life, then broken (with my disease) to become vibrant and beautiful.
Don't define me by my disease. I am more than my disease. And my disease has made me more.
My disease does not define me or decide my worth.
Read more:
The people whose lives you suggest aren't worth living? They can hear you. Secular Pro-Life Perspectives, May 24, 2019
Lucky to Be Alive: Zika Coverage, Ableism, and the Terror of Disabled Bodies, Huffington Post, February 5, 2016The people whose lives you suggest aren't worth living? They can hear you. Secular Pro-Life Perspectives, May 24, 2019
How the Pro-Choice Movement Excludes People With Disabilities, Rewire News, October 17, 2014
"Didn't you get tested?" Salon, April 28, 2013
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