“Spina Bifida is the most common permanently disabling birth defect still compatible with life”
The above quote has been rattling around in my head almost as long as I’ve been learning, and teaching others about Spina Bifida (and disability in general) so roughly since my teenage years. It’s kind of a lot to digest. If it’s new to you as someone with Spina Bifida, or if you’re completely uninitiated, I’ll break it down for you.
Spina Bifida, literally “split spine”, is a neural tube defect present at birth in which a portion of the spinal cord is exposed to some degree. In my case, Spina Bifida (spine-uh bif-id-a) Myelomeningocele (milo-meh-ninja-seal), my spinal cord was fully exposed through an opening in my back between my fourth and fifth lumbar. I know that’s heavy. Pause here if you need to.
As for the rest of the quote, “still compatible with life”, means Spina Bifida is the most severe birth defect that is survivable to adulthood. These are words I have been sitting with (no pun intended) for years. At first, I’ll be honest, they terrified me. I couldn’t wrap my head around my diagnosis being fatal. Past that, how was it I avoided that fate? And why?
The latter of these questions wouldn’t come up until several years after I’d first found the quote. I didn’t spend middle school grinding about my purpose on this earth. That’s what college was for!
Sarcasm aside, these words have meant different things to me throughout my life. I went from being completely unnerved by the revelation, to hell bent on making sure my life meant something to somebody. Recently I realized my understanding of the quote has changed again.
I now identify very strongly with the “still compatible” bit. I won’t belabor the details of things I’ve written about in other posts, but suffice to say I’ve struggled the last few years. I can’t go so far as saying I was ever actively suicidal. But the idea of just not existing has been extremely attractive on occasion. Thankfully I am in a much better place at present (at the time of writing, a literal blanket nest actually). Because of the energy and efforts I am putting toward staying in my current state, I can honestly say I believe the quote. I am still compatible with life, and I have every intention of keeping it that way.