So Imma be 49 any day now. And the longer I live, the more I don’t understand why. Why I’m still alive, or really why I was born in the first place. I’ve always struggled with the meaning of it all. The point of everything.

Facing your own mortality since you were a kid will do that to a person. Being involved in making life and death decisions about your own medical care since you were like 12 gives you a certain Existential Darkness that stays with you.

And lately I can’t help but think of all the people around me who have died with, or directly because of, Spina Bifida* And I think of the friends who are still with us but who are currently going through hell.

I think about the friend with SB who has cancer that has spread to her brain. (Edit May 21, 2025…”had.” Had cancer.💔) Or the beautiful soul with SB, a newlywed, who was going along living their best life 6 weeks ago and now lives with the knowledge that they have metastatic, aggressive, stage 4 bladder cancer. There’s the one who died after her heart stopped while she fought the flu. She died from extenuating circumstances but the SB didn’t help. My mind then turns to the friend with SB who died months before turning 51. Or the friend with SB who died at 24 from cancer. The former friend with SB, who I regret not reconnecting with, who died at 40 because the physical pain from “not letting their disability stop them” was just too much to deal with and they coped in unhealthy ways and it ultimately killed them.

Or the friend, brother, and mentor who made it all the way to 58, almost 59 before dying, and I thought, “At least they got to grow old.”

“Grow old.”

58.

“Grow old.” 😐

I think of them and I wonder, “Why am I here, doing relatively ok, save for a broken brain that among other things constantly keeps me awake writing blog entries like this one, and for a recent spill that has me using a walker again, while some of them aren’t here anymore and some of them struggle with life changing diagnoses? Why am I, a nobody, walking around relatively ok while these smart, strong, amazing advocates and mentors, these beautiful people, are struggling so much or are dead??”

Now, understand, I’m not saying my life is easy. My life has its struggles too. As we all do. I mean, as a soon to be 49 year old man with Spina Bifida, and as a soon to be 49 year old man with Spina Bifida who is also a caretaker to someone with such intense stuff going on as renal failure and doing home dialysis, my life is not easy.

So I’m not saying I don’t have struggles. I do and it sucks.

But I also don’t wanna be the guy who has struggles but who says, “I’m grateful because it could always be worse.” I mean, it’s true, it could always be worse. And I’m grateful. And maybe I should stop there. Maybe I should just be grateful that I’m relatively ok and move on.

But that’s not me. That’s not what I do. I’m tortured with a brain that thinks too much, a soul that feels too much. A mind that lays awake at night, always trying to figure “it” out.

The problem with introspection is that it has no end.”

~author Philip K. Dick

But also, I can’t help but feel icky because that phrase -It could always be worse- is very “inspiration porn” and that’s gross. I’m certainly not saying, “Well at least I’m not them!” (Topic for another day.)

So, I dunno. I don’t know what I’m saying. Not really anyway. I think I’m being all “existential crisis” in part because that’s just what I do. See aforementioned “dealing with your own mortality at 12” thing. And I guess with 49 being just days away, I’m still that kid who just

Thinks

         Too

               Damn

                        Much

I suppose The Reason, the Answer to Everything, is not only “42” (#IYKYK) but also maybe the answer is that everything is random, and the universe is a cold, cruel place, indifferent to our suffering.

I dunno. Whatchall got? Discuss in the comments. Someone give me all the answers to everything! 🤣🤣🤣….. 😐

Ultimately, I’m still here. 48 years more than doctors gave me. 25 years longer than I thought I’d be here. And 11 years longer than I should’ve been ; I am still here. And that’s gotta matter. That’s gotta mean something. Right? I mean, right????

TL:DR I’m thinking too much, possibly having an existential crisis about why I’m still here (It’s not a midlife crisis if you’ve thought about stuff like this since you were 12 🫤) and maybe the reason is that everything is random and nothing matters, so you might as well try and be happy while you’re here. 🤷‍♂️

Happy birthday to me.
Est. 1976 and beating the odds since 1977.

For reference, the docs only gave my parents a year when I was born. Here’s me with my Forrest Gump lookin’ braces, about 6 months after they predicted I’d be dead.

So. Am I the only one? Is it just me that thinks about these things, just me that has had these thoughts most of my life? Am I alone in my lifelong existential musings? Or am I just the only one writing about it?

*now would be a good time to mention that one of my favorite people is a 77 year old bad-ass with Spina Bifida, and I do know people in their 50s and 60s living with Spina Bifida and doing ok. I wanna be like them when I grow up.