So this is 48. And with Spina Bifida, feels more like 60+
(Yes “Spina Bifida years” is a thing. I can tell you all about it in a future blog post.)
But yeah, 48. Exactly twice as long as I thought I would live when I was a kid. Why 24??? Dunno. 🤷‍♂️ Just figured we, people with SB, all die young. Advances have been made since I was growing up in the 80s, but back then I remember I would get the Colorado SBA newsletters and I’d read that this 12 year old died or that 14 year old died. And so I figured that would just be me too. 🤷‍♂️ When that didn’t happen in middle school, and then high school, I just thought “ok. 24.” (And not for lack of opportunity! I had 8 surgeries from 7th to 12th grade!) And why 24??? 🤷‍♂️🤷‍♂️🤷‍♂️ And now here we are, twice as long as that. And 10 years, almost to the day, longer than my latest, uh, “big ugly thing” (because the last half of 2013 sucked and it caught up with me in 2014. Also, my brain is broken. And stupid 😐)

But I’m still here.

So is Life a gift? Is it a punishment? Is it God given? Is it a random happenstance of millions of years of evolution? Are we just a fluke? Why are we here? Why is Anything?

I don’t know. My faith in any of the aforementioned theories is sadly not strong enough for me to be sure of any of them.

“From childhood’s hour I have not been as others were.

I have not seen as others saw.”

~Edgar Allan Poe

I think too much, I feel too much, I ponder too much. I’m sensitive. I wear my heart on my sleeve. People I love and who love me have called me everything from “a big Sally” to a straight up “tortured soul.”

I’ve never felt like I was good at Humaning.

Existing.

Being alive is not really my forté.

And I feel like I’m the only one out there that ponders Existence as much as I do. But then I found at least 3 other Weirdos™ in our community who constantly think, “Why am I here? Why am I alive? Whats the point of it all?” as much as I do. Like it’s going outta style.

I don’t know why. But I have a feeling this is just something that happens when

you’re forced to face your own mortality over and over from such a young age.

I dunno.

But it’s nice to not feel so all alone in my nightly pondering.

I don’t know why I’m here. But here I am. Husband, son, caretaker, friend. And in honor of people like Tom. Michelle. Eric. Jen, Sara, and little Eli, and so many others who were born with this thing and died from this or with this thing, I will keep going. For my wife, Kischa, who needs me now more than ever. Fighting my own physical issues and mental demons to keep being here for her. I want to see her get stronger, get a kidney, and get back to some semblance of the life, the energy levels, the activity she had. I want to see that. Man I wanna be here for that. ❤️

For my beautiful mom, who would be devastated from my absence no matter what the cause.

So. Ok. Life goes on. Trying to get healthier, trying to get my bones stronger after being diagnosed with “severe osteoporosis” at 47.

–Nobody knows why. As far as anybody knows, osteoporosis isn’t inherent in Spina Bifida. But then again nobody knows jack about squat when it comes to adults with SB because up until the late 1950s, most of us died before we reached adulthood!

But yeah, apparently there’s a reason I took a relatively mild spill and broke my back last year. Apparently there’s a reason I fell and broke my knee 2 weeks before I was scheduled for the initial 2nd CoVid vaccine in late 2021. Hell, osteoporosis might’ve even been the reason I took a light tumble from a puddle of water in a hotel bathroom and broke my wrist in 2008, but nobody thought to check for osteoporosis on a 32 year old!!–

So, yeah, I go to the gym to strengthen my bones. I do the daily shots in my belly that they prescribed, and I lift the weights they said would help bone density, so that maybe next time I fall, I don’t break anything. Fortunately I had already lost 38 lbs before my osteoporosis diagnosis, during the year after my wife’s ESKD diagnosis. Sure it’s mostly from stress, anxiety, and increased activity from all of her new doctor’s appointments that it happened, and yeah that’s probably not the healthiest way to get back to the weight of my early 20’s, but, y’know, whatever. 🤷‍♂️ Now that I’m here Imma try to keep it off! Keep it off so I can stay ambulatory as long as I can, and to build bone density so I stop breaking bones every time I slip on a random patch of ice!

And so life goes on. And I don’t quit. And I won’t quit. Because my wife needs me. And because I want to see where the gym gets me. And because I want to see my friends. And because there’s a musical coming in August that I never get tired of. And because I want to keep watching Colbert.

Whatever keeps me around.

Here’s to 48 and hopefully a few more. For Tom, 58. For Michelle, 50. For Jen, 40. Sara, 40, Rayleen, 24, and Eli, 12, and for so many others with Spina Bifida who didn’t get the 77.5 average American life span. I’ll keep going for all those reasons and more.*
Happy birthday to me.

Cheers 🍻

*Disclaimer: I know a 76 year old with Spina Bifida and several people, in real life, in their 50s and 60s. So, y’know, hopefully I can be like them.