My Bleeding Ink

Ruth was a genuinely good person.

From the moment we met in high school, I remember her kindness. And as a disabled kid who didn’t feel too good about himself, finding kind people was essential.

Over our high school years, her kind soul continued to shine through. She’d write me letters when I was in the hospital having yet another shunt revision. She’d call the hospital and talk to my mom to see how I was doing. She’d give the biggest hugs when I’d come back. Her smile and her laugh, the way she’d call me “Gabrielie”, watching her perform in “Fiddler” and “Flowers for Algernon” night after night.

A lotta good memories over those 4 years.

We were inseparable the summer after high school. She and I and a couple other friends, “thick as thieves” as they say. Spending random weekdays and many weekends together. Going to movies, going to the park, hanging out at each other’s homes. Terrified of what the future would bring. Wondering if we’d still keep in touch in college or whatever our plans were.

And we did. For a couple years in college, we still kept in touch. We wrote letters. I’d drive up to UNC and hang out. She’d come down here, and our little friend group would do something. We stayed close.

And then, well, and then we weren’t.

Years later tho, after growing and learning more about myself, understanding how wrong I was, I said some stuff, she said some stuff, and to no one’s surprise, she showed grace and forgiveness. We never regained what we had, never had that closeness again, but I’m grateful for what we did regain.

It was lovely to see updates on her boys on Facebook. She loved her boys and her husband. She was so proud of her sons. It was always “Paul Joshua did” this and “Isaiah completed” that.

She loved her husband, she loved her boys, and she loved God. Her faith was strong. She loved the Lord and inspired so many people with her faith. From Day One, 14 years old in high school, I could see her love of God and admired how she found great comfort in her faith.

My heart goes out to her husband, Wayne, to her boys, and to everyone who loves her and will miss her so much.

Kischa has her own memories of her dear friend. Singing in choir together, sitting together on the bus while sharing laughs on the way to various choir shows. And having Sunday service at a friend’s home, with Ruth’s dad giving the sermon. She will always carry those memories with her.

Thank you for being you. Thank you for the kindness, humor, laughter, and grace you always showed me.

Thank you for your example of Christ’s love.

May your family and friends find comfort in the fact that you are with Him.

I leave you now with this song. The summer we were “thick as thieves” she and another best friend of ours were hanging out at my house, all of us struggling with what the future held, and she had a surprise for us. A serenade of sorts. She had the music on cassette (it was 1994!) to two songs, each specific to each of us, and she sang this song to me. She had a beautiful singing voice, as anyone who knew her will tell you, and she sang Mariah Carey’s “Hero” to me. It was a reminder to believe in myself. A reminder to not be so hard on myself. That I can get through things. That I had already gotten through a lot in high school, so many surgeries, complications from those surgeries, whatever else, and that I could get through other things. I can be my own hero. She believed in me, and helped me believe in myself.

It meant a lot that day and, sitting here thinking about it, it still means a lot that she cared enough to try to help me believe in myself.

Thank you for that, my friend.

(Tis been a lifelong struggle. But I’ll never forget that 30+ years ago she cared enough to try ❤️)

I am so grateful we reconnected and I will miss you, but I will always have the memories. ❤️💔

              Suzanna Ruth Simon, née Zal
December 18, 1975 – December 31, 2025

So y’know that thing where people say their spouse saved their life? Sometimes metaphorical or symbolic, sometimes literal.

Well this is the story of how my wife literally, not figuratively, saved my life. With a subplot about how I was an overachiever when it came to sleep apnea.

Within literal days of first sharing a bed, we’re having breakfast one morning and while we’re enjoying eggs and toast, with a side of home-made salsa (because everything I eat has to have a kick!🌶️) she says the words that started quite the journey.

“So hey. Did you know you stop breathing when you sleep?”

I’m sorry, what??

“Yeah. You’ll be snoring, then do this thing where you kinda catch your breath a little bit, like a gasp, take a few breaths in and out, and then just…stop. You just stop breathing. Five, six seconds. Sometimes 10 or longer. And then take the deepest breath in! Like a deep gasp! And you’ll do that several times a night. It’s a little terrifying. 😳”

*confused look on this author’s face*

“You didn’t know??”

Uh, no!

No idea. Not something I’d ever felt, not something anybody ever said, not something I or anybody ever noticed.

By that point I was in my mid 30s, and my days just were what they were. Tired a lot. Constant naps, dragging all day. Some days less than others but, I dunno, you get used to sleeping habits. *shrug*

But when she asked, me within days of first falling asleep together, if I knew I stopped breathing, well, it scared me! Then she brought up sleep apnea and suggested I get a sleep study done.

I’d heard of sleep apnea, I knew about the CPAP machines people would wear. But I didn’t think that applied to me.

Still, I agreed it would be a good idea to get checked out.

So I made an appointment at National Jewish, one of the best respiratory hospitals in the nation. I suppose I didn’t have to go to that extreme, I suppose any hospital would do, but I made the appointment at National Jewish.

I walk in (with my own pillow that I ended up forgetting after the test was over, dammit!) on Friday morning. She asks me background questions. Are you always tired? Do you yawn a lot? Do you take naps? Do you constantly feel sluggish?

And do you ever feel like you’re constantly sucking in air at night, and waking up?

Yes. Yes to all of those. But the “constantly waking up at night” thing, constantly sucking in air, I thought it was from bad dreams! Or in my imagination! Or, I dunno, “just the way things were.” 🤷‍♂️

I asked if that’s apnea, and she said that’s what we were there to find out.

She connects all the sticky sensors, you know the ones, to various parts of my body including my legs to test for Restless Leg Syndrome. She explained that the sensors will measure my heart rate, my breathing, my oxygen levels, just all the things. And for the first half of the test I would just try to sleep. Just my normal habits. No mask, no nasal cannula, just try to sleep. This is when they’ll verify apnea and the specifics of apnea. How often I wake up per hour (85 times, by the way! Per hour!) And the second half would be with a mask and would measure how much air pressure is needed to prevent the apnea (11, by the way.)

I fell asleep soon enough. It helped that I was exhausted. I don’t remember the rest of the night but I remember waking up with a mask on my face.

Sleep tech comes in the following morning and says we’re done. Says the specific results will take a few days to a couple weeks, but yes, I had sleep apnea. I woke up to varying degrees 85 times in one hour. And it was central sleep apnea as opposed to obstructive sleep apnea. She explains the difference, saying that obstructive is more common and is where your throat physically gets blocked from taking in air, whereas central is where your brain “forgets” to send the signal to keep breathing! And given my history of Spina Bifida she nonchalantly says, almost as a throwaway comment, “it probably has something to do with that.”

That’s it??? “It probably has something to do with that.” No specifics. I mean, “probably has something to do with that,” how????

I’d been to several national Spina Bifida conferences by that point. 9, to be exact. And I learned a lot about a lot of things. But nothing about apnea. Surrounded by experts in the field of SB, wonderfully dedicated and smart people that helped me figure out I had a learning disability I never knew about until my first conference in 2003. (Discussed at #26 here.)

But nothing about apnea. 😐 (EDIT: The comments are coming in, and apparently there were sessions where docs recommended “everyone with SB should get a sleep study” because of apnea. You don’t know how sorry I am I missed those sessions!!)

Not that I blame anyone. My generation, Gen X (with a few years from the Boomers thrown in) are the first generation of people with Spina Bifida to survive to adulthood in large numbers. Large enough numbers to be studied. Large enough to finally begin to know what happens to us as we age. They call us “Pioneers” in that regard.

Adults refer to ourselves as guinea pigs. 😐

So ok, I had the apnea. Central Sleep Apnea. “Probably has something to do with your SB.”

……..ok 😳🤷‍♂️

I’m reluctant to get the mask. I mean come on, nobody wants to fall asleep with a mask. It’s uncomfortable, cumbersome, and you feel stupid wearing it.

So I didn’t get it. Not for weeks.

K wasn’t terribly happy about it but, “I can’t make you do anything.”

But then she says it got worse. Snoring louder than I already had been, which I already knew was pretty loud! And I was even more tired, stopped breathing at night. It was all getting worse and I was exhausted all the time.

So I finally got the damn mask.

Big thing, covered my entire face. Not really, but it felt like it did. And I tried. I really tried. Different positions, different full face masks. I just couldn’t get used to it. I couldn’t sleep with this thing on my face! So after a couple months, I gave up.

If you’ve come this far, thanks. 😊 I shall reward you by getting to the bizarre part of the story.

I gave up on the mask and life went on.

Cut to May 2013. Wife and I had just made it official a month or so earlier and got married. Life was pretty great.

Then I got a headache.

Not a bad one. Not particularly excruciating. But constant. New and constant. And then throat issues. Some coughing. All this stuff that I thought would be another sinus infection that I had been prone to.

I figured I should go to urgent care before our family vacation. He’ll tell me I have a sinus infection or something, I’ll get antibiotics, and everything will be fine.

PAGE 2

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.