Spina Bifida Awareness Month Continues. And So Do I…..

When I was growing up, I would receive our local SBA newsletter and I would read about how this 12 year old or that 9 year old with SB died suddenly.
That sticks with you.
I never thought I’d live very long. I thought I’d be dead in my teens. I mean, if that 12 year old died, why wouldn’t I? And when that didn’t happen, I thought I’d die by 24. Why 24? Dunno. Why not. Now here I am, 43 and still alive. Albeit with health issues, both SB related and non-SB related. And both physical and mental health issues. But I’m here. So. That’s cool.

And yet, my friends and fellow people with SB continue to die. Kidney failure, compressed lungs from their messed up spines, inhibiting their breathing. Or the infamous pressure sores that they couldn’t feel until they’d get down to bone and caused sepsis and ultimately death. Friend of mine died a couple years ago at 40. A little girl with a family I used to be close to died at 6 because she was dealing with flu and shunt failure simultaneously, and her little body couldn’t take it.

And we’re coming up on a year since one of my best friends and favorite people on this Earth died. Tom Baroch. Dear sweet wonderful kind-hearted Tom. Kicked my ass when I was being dumb, and fiercely loyal and protective when he felt people were being unfair. Was his death SB related? No I suppose not. Not directly anyway. Spina Bifida exacerbated it, but either way 58, a couple months from 59, is way too young in this day and age. Don’t get me wrong, I’m trying to get to 58, and hopefully a decade or two more than that. We’ll see. But it’s sad.

But on the plus side, I know people my age and older, oldest one being 73, who have Spina Bifida and are still well. Quite well, in some cases. All their faculties, still walking around, doing fine.

Don’t really have a point. It’s 1am and not being able to shut my brain off is sorta my thing. Just never know when it’s your time to go I guess. Nobody knows, I get that.

Still. Some days it’s overwhelming knowing the odds have been stacked against you since birth.
*goes back to holding his wife, for which he is grateful.*


#BifLife #BiffinAintEasy #ProfessionalPatient #SpinaBifida #Myelomeningocele #ThisIsWhatSpinaBifidaLooksLike #Hydrocephalus #TooMuchBrainToContain #ChiariII #ChronicIllness #Spoonie #TheMidlifeBifLife #IDidntChooseTheBifLifeTheBifLifeChoseMe #DamnItFeelsGoodToBeAGangsta🤘

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