My Bleeding Ink

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 realized, not something anybody ever said, not something any doctor or anybody ever noted.

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 sharing a bed, if I knew I stopped breathing, 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

“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…disability is an art. It’s an ingenious way to live.”
~Neil Marcus, 1993

When you’re disabled, you gotta figure out new and different ways to do things in a world that isn’t designed and built for you. That’s just life. Adapt or….well, or nothing, you just adapt. 🤷‍♂️

And when you have an injury and are temporarily more disabled than you already were, you have to come up with even more creative and even different ways to do stuff.

For example let’s say, oh I don’t know, let’s say your knee gives out and you fall on Sunday morning as you took the very first step out of bed. And you go to the urgent care because, given your osteoporosis diagnosis last year, you wanna make sure you didn’t break anything again! Then let’s say that by the grace of all the gods and goddesses, you didn’t break anything, but you sprained “pretty much every tendon and muscle in your inner thigh, and some on the outer thigh.” So then you can’t walk so good. So you figure out you now need a walker.

But that’s nothing compared to the even more important and more vital decisions you have to make, and the more creative ways you have to take care of your wife!

You’re the one who took the literal weeks of sessions to learn to hook and unhook her into the home Peritoneal Dialysis machine every night and every morning. And while she does watch you every night, she hasn’t done this herself ever.

So you panic, flip out, cry, panic some more. Mostly because you know that the last half of putting her on every night, and the entire part where you take her her off every morning, has to be sterile. And you can’t be sterile if you wash your hands but then have to hang on to a walker to get around.

And you pride yourself on the fact that you’ve been doing this every night and every day for almost 6 months without her getting an infection! Maybe it’s because you’re anal as hell about sterility. Or maybe it’s because your learning disabilities made you really, really good at following written instructions step-by-step while not deviating from those written instructions. Maybe it’s because the idea of doing anything that will cause infection and possible removal of the PD catheter and a return to in-clinic dialysis keeps you awake at night. Whatever it is, you have kept her infection free for almost 6 months.

And you know she can’t do this process, at least not all of it, by herself because her balance is still not great, and her left hand is still not as strong as it should be.

So then the first 2 or 3 nights and days, your wonderful mother –who is basically a saint– helps you do things. She masks up, she washes her hands for 2 minutes, she follows your directions, and she becomes invaluable those nights and days. ❤️

But then your mom decides that the vacation she’s been planning for about a year is still happening the next day. Rude. 😂 (I kid, she deserves all the breaks and all the vacations), so then you have to figure it out. Through some trial and error, through some extremely close calls with cross-contamination, (jury’s still out on whether or not Kischa’s ok, but seems just fine so far, so there’s that 🤷‍♂️🤞🤞) through a lotta ideas and help from some lovely and supportive friends that I talked to in the first couple days❤️❤️❤️, I think we got this down finally.

Takes longer, but what’s supposed to be sterile stays sterile. So. Yay.

Also, it’s me. I’m “someone.” I fell down and sprained all the things and can’t really walk without a walker. Enjoy this picture of my swollen left leg.

Here’s to figuring it out. “An ingenious way to live.”

Disabled friends, Spina Bifida or otherwise, besides using adaptive equipment the way it’s meant to be used, what are some creative/unique “ingenious ways to live” that you’ve come up with to make up for a world not designed for you?

TL:DR I really fucked myself up, and my disabled ass is now more disabled, and now I have to be even more creative and come up with an even more “ingenious way to live” at the moment, in order to take care of myself and my wife. 😐🫤