For six months of 2015, my wife and I wondered if I was going to die. And then during a few months in 2016, we wondered some more. Here’s the story in which I nearly died:
It started with a vasovagal episode in early summer. In case you’ve never encountered a vasovagal episode, here’s what happens. The Vagus nerve goes from your brain through your heart straight to your gut. If there’s an anomaly that affects your guts — extreme stress, excruciating abdomen pain, a sharp drop in oxygen or even blood sugar — your Gut tells your Brain, “Hey Brain! Something horrible has happened! It’s awful! It’s the worst! DO SOMETHING!”
And Brain says, “Don’t worry, Gut, I have an idea: I’ll shut down Heart.”
And then Heart says, “You got it, old buddy.”
Which is about the time your whole system resets.
From an outsider’s perspective, this ends up looking something between an overreaction — swooning or fainting — and a full-blown epileptic seizure. Depends on the severity. Mine can be pretty bad — bad enough that my nurse of a mother thought I was just seizing. I’ve scared a great many of my friends and relatives over the years with these vasovagal syncopal events, that comatose stare and rigid body, and kicking feet that testify, “Sorry, friend, but no one’s home. Come back later.”
My magic 8-ball stare that reads Ask again later.
Adrenaline kicks in and Brain starts rebooting systems. First the essentials: Heart, Lungs, Pancreas for delivering insulin and getting some sugar stored up in cells. Once the nerves are online and delivering messages to the subconscious side of my mind, the brain starts resetting the conscious sides: first with the lizard parts — tingling, dizziness, anger or sadness, some smells, a chalky taste, sound like explosions underwater, and then the fuzziest light that comes into focus but has no linguistic representation.
Finally, like the light of God, I become a rational human again. I regain that existential mystery we call “consciousness” and try to reckon myself with the reality of my own existence. It’s in those moments that my whole being mirrors an existential crisis: I wonder not where I am first, nor when I am, nor even who I am, but rather what am I and to whom do I belong? Eventually I reckon with my humanity and work my way back through spatiotemporal questions and memory (method of loci helps) until someone explains, in response to my questions, that I had a seizure.
I remember those.
How silly of me.
Of course, I’ve become accustomed to these enough that, for instance, in 2013 I had two in the morning in the bathroom after feeling severe pain in my bowels and woke up with blood on the floor. As I said yesterday, it turned out the porcelain trashcan I’d been holding over my foot (for vomitory purposes) had fallen as my grip slackened, had hit my foot, shattered, and sliced a huge gash along my toes. Which was good because ain’t nobody got time for a GI bleed that massive.
It was massive because, as said previously, my bloody foot went to kicking.
And I mean that both ways.
After another battery of tests that I wasn’t scheduled to have until I turned 50, tests of the U.F.O. variety involving probes and orifices, I learned I didn’t have Crohn’s but rather some severe IBS and lactose intolerance. The night before, after doing a 7-food-only fast (the one from the book Seven), I had come back to my unhealthy lifestyle in a furry consuming, no less, a full plate of fettuccine alfredo, two cheesecakes, mozerella-encrused broccoli, cheesy potatoes, creme brûlée, etcetera. My small intestine was, quite literally, a balloon about to burst.
Thus saith the trauma surgeon: “Go home and fart. A lot.”
Actually he had more words, but like I said, I talked about that yesterday.
Flash forward to six months ago. A different trigger and I collapse from the standing position — talking — to on top of my wife who had been laying in bed listening to me rhapsodize about something… I don’t know, I forget what it was. Something insignificant. Probably the irony of flying squirrels, which is boring, so my body livened it up a bit. She panicked because she’d never seen one of these. Even though I’d come close to seizing in front of her and even though a couple episodes had happened since we’d first gotten together, she kind of approached it like a cried-wolf phenomenon. Honestly, I don’t blame her: I too might have taken the “toughen up” approach had The Almighty reversed our fortunes and given me the type-1 diabetes and given her the parlor trick greeting of “Sometimes I have fainting spells.”
Suffice to say, after she’s seen me in that condition there remains no doubt in her mind: whatever caused it was pretty severe.
Imagine all of your brain’s consciousness firing at once to get all the muscles moving simultaneously — every bicep and quad firing at full power in contradiction to one another — and you’ll start to understand the sensory overload and the extreme exhaustion upon waking.
In a weird bit of providence, I sympathize deeply with her low blood sugars.
I went to the hospital twice that month: that night and once again in Barnes and Nobel where I felt pain in my chest (probably a panic attack, but potentially not) connected to a literal swirling, swishing feeling in my brain — intracranial pressure and pain and… yeah, swishing’s the best word. Not a headache or a migraine. Chest pain accompanied it — as if my very nerves were on fire, like my skin was burning or freezing. Whatever it was, it was something… else. Sean Walsh was there with his son Liam. I scared half of Writer UnBoxed:
“Hi, nice to meet you Liam. I’m going to the hospital.”
Did I mention I’m horrible at first impressions? Because I am the worst.
A few weeks later we talked to my Filipino friend, an older man named Vi. Vi had some scar tissue that triggered a vasovagal response from his body a few years back. They didn’t find it until they ran him through the MRI machine. So I asked the neurologist for an MRI. This is how that meeting went down:
“Hey Dr. Nangia,” I said.
He looked at my wife. “How old is the boy?”
Dr. Nangia scribbles.
Tara and I look at each other.
Dr. Nangia asks, “Any history of seizures?”
“Yes,” I said, “I—“
He looks to Tara. “What seizures, mom?”
“Yes, his mom. What seizures.”
Tara giggled. “I’m thirty. I’m his wife.”
“Thanks?” I suggest.
“Well what seizures,” he asks me.
We go through the medical history. It’s interrupted several times by him belittling my suggestions and self-assessment. He’s the doctor. He’ll make the suggestions.
Look, I respect specialists, okay? I respect that we need experts. I don’t respect the severe lack of colleges in our country that use humanities as a base. I don’t care if you’re a good doctor. If you’re a bad human being, by definition, you’re a bad doctor — doesn’t matter how many cases you get right. What makes Gregory House likeable isn’t his competence alone. It’s the story behind why he’s a jerk — it’s finding out that he’s a real human. Humanity. Same with Sherlock. True specialization — and true experts — only arise after thorough training in life wisdom and virtuous character, in logic, in rhetoric, and grammar.
Rudeness isn’t a virtue.
Rudeness isn’t even good argumentation.
Or proper grammar.
Especially in doctors.
Anyways, he went on and gave me some write ups for some tests. We did half of them already, another was for the MRI, but there were some on a script he never handed me. So we bickered about that at the second appointment — about how we’re having an appointment to get the script he didn’t give us. He charged us for that appointment — the appointment to talk about the things we talked about at the first appointment and oh yeah here’s the script. Then we did the tests and had a third appointment scheduled where he didn’t receive any of the tests. I refused to pay for that one.
After the fourth appointment, we traveled down south to the other office and met Dr. Krishna. Krishna’s a boss. Krishna’s office gave us an excuse to eat at the Ocean View Café which serves straight-up Russian goodness. Tara and I got in a lot of walks in that time — from Brighton Beach to Coney and back. It was cold. I prefer cold beaches, I think — they encourage introversion and writing rather than frivolous activities. Niagra was like that: a frozen beach. Coolest thing I ever saw. Found out from Krishna in that time that Dr. Nangia’s a pediatric neurologist. Thus the whole assuming I was Tara’s son thing. I preferred talking man-to-man with Krishna.
When I say a “battery” of tests, I don’t use that because people use it often. I use it because I have this image of my mind of the hordes of medicinal hell launching a battery of arrows tipped with explosive incendiary devices that, upon impact, expel a confetti rain of vital charts and graphs. A battery of tests. MRI, EEG, EKG, X-Ray, CAT-scan VNG, Intracranial Doplar — let’s just say I learned a lot of useless acronyms. I’m reminded of Elon Musk’s email: Acronyms Seriously Suck.
Somewhere in the midst of the battery of tests, Tara put us on Whole 30 which cut out all sugar and legumes and really anything inflammatory. My back pain virtually went away. My migraines went WAY down. And I got the best sleep I’d had since I was like 18 or something — it was awesome. I highly, highly recommend trying it for a month. It’s just a month of your life and then you can go back to eating all of that awful food you indulge in all the time. But maybe — just maybe — it changes your life. It did mine. Plus there’s meal plans out there that make it STUPID easy, so yeah. I recommend trying it.
The brain pain went away for a little bit.
Then we went back to typical crappy food and it all came back.
Met some nice people along the way — like the lady who let me rush home to get my new driver’s license I’d obtained after a three-day application process at the DMV (Acronyms Seriously Suck). I came back to the diagnostic lab with something like ten minutes to spare before The Tech got off work — nice dude, fan of Terry Prachett and Neil Gaiman. Told him my name, showed off my map, maybe he’ll be a reader some day. He told me nothing was wrong on his end.
Got a lot of those in this time — lots of negative or non-conclusive tests. Wasn’t a stroke. Wasn’t cancer. Wasn’t a parasite… that they could find (still possible, I guess). Wasn’t a fractured skull. Wasn’t a ruptured heartery. And so it goes.
Then I went to the sleep study place.
Now first, you need to know that they sent a car and the guy was a Russian driver. Fantastic experience. It’s like ten at night, my wife’s going to bed, and this big burly Russian dude is taking me to God knows where in order to let me spend the night in the underground bunker of a warehouse in deep Brooklyn.
I was having doubts.
Like SVU-scale doubts.
At one point, the guy was blaring music and pulls over in Park Slope. It’s gotta be close to quitting time for most of you Park Slope families around that time. He turns to me. “Do you want a coffee Starbucks?”
“Okay, I want a coffee Starbucks. I am going to get one. You stay here — don’t go anywhere.”
“I will be right back.”
Right back was fifteen minutes in an empty Starbucks. The Russian music still played. I sat and tweeted about it or something, I don’t remember. The guy returns.
“Can I borrow your phone?”
“Um. Yes?” I hand him my phone.
He talks to his wife first in English, then in Russian. There’s shouting. There’s sweet nothings. There’s laughter. There’s an, “Okay bye bye.” And the big guy presses a big thumb to the red hang-up button. “Ah thank you.” And we’re off again talking about stroganoff and Brighton Beach.
(You see, kids, wide-ranging life experiences come in handy).
We made another stop that night to pick up another lady for the sleep study. We waited for another fifteen minutes outside her house and she eventually came out with a son at her side and a walker at her front. Mind you, we’d pulled up to this house right about the time I’m supposed to be arriving at the diagnostic lab. She was a sweet lady, if quiet.
We got there and the guy opened up for us. Nice Hispanic dude, hooked me up to more wires than Neo in the Matrix. He explained the drill. I tried to turn on the first democratic debate to no avail, look at the TV and said, “You’re dead to me.” And turn it off again for a few more years.
Come to think of it, that was in 2015. It was the last TV I watched.
That’s probably not true, but it sounds really good and maybe even ominous if we say “that I would ever watch,” so we’re going with that. This guy explains the process while I’m filling out a form for the symptoms of sleep apnea.
Those symptoms included a racing heart…
— in the second grade, I would have these episodes where my heart would race so fast, my RN mother couldn’t count my pulse. I wore a heart monitor for the better part of a semester to no avail. Some kids called me frankenstein to which I, even in the second grade, replied, “It’s Frankensteen.”
Those symptoms included day terrors…
— in that same year, the heart racing was accompanied by me waking up and seeing visions, an overlay of images upon the world. I could still see some things, but it was like the vision was set at an 80% opacity in Photoshop: the vision was the more prominent than the reality behind it. The first one featured lanes of a highway stretching onto infinity, all with NASCARS on them, me as a nine-year-old kid strapped in the seat and watching this crazed lunatic accelerate us to two-hundred miles an hour and then, like a dementor, fly out the window into the air. Parallel to me, I saw other cars on the other parallel roads and knew my friends were there — friends like Taylor and Andy and Chase and Darren — and from their cars flew other dementor men. And I knew, though I was a second grader, I would have to take control of the car but I couldn’t take control of all of them. And then I snapped out of it with my mother over me, rocking me. And that’s just one of a dozen or more of these vision things. If you want more, ask in the comments and I’ll let you know, but we’re getting on the long side of the average blog post and on the average side of my own typically long blog posts, so I’m going to wrap this up soon.
Those symptoms included sleep talking and sleep walking…
— in the third grade, I once stayed the night at Jonathan Stremsteffer’s house. We’d spent most of the night watching scary movies like Leprechaun and eating Christmas tree popcorn and pranking one another. I remember doing the old feather on the face, shaving cream in the hand trick and it worked really well on some of them. But I have always been an early riser and an early to bedder so I was one of the first asleep. They tried dipping my hand in warm water, but it didn’t work. They did the shaving cream thing to me — I think it was Cole Bredar, wherever he is these days. Last time I saw him, he had long Brad Pitt hair and was perched atop a brand new, leather bedecked Harley. Anyways, I had a lot of fun with Cole back in the day and he did the shaving cream thing and I started whining, “Mommy.”
“What?” Cole said. “Are you crying for your mommy?”
“Mommy, Daddy. It hurts. It hurts.”
They realized it had gotten in my eyes and were trying to get it out with a pillow case.
Then I shot up in bed, looked right at them, and crawled out of my sleeping bag. I went out from the sun room — which was awfully cold, it being winter. We all insisted on “camping in the cold room.” Well I walked out and went towards the TV in the living room, which was attached, the tree nearby. The boys were following along. I took a right through the saloon doors, dropped my drawers right in front of them, and starting peeing in an IGA grocery bag.
“WHAT? STOP STOP!” They shouted.
I wouldn’t stop. I just kept peeing into the trashcan.
“WHAT ARE YOU DOING? WHY DID YOU DO THAT?”
I turned at all those boys, pants still down around my boyhood ankles and said, “Cause I got good aim.” Then walked past them and went to bed.
There were other sleepwalking instances, but that was the most vivid.
Sleepwalking, day terrors, irregular heart rates, all of the brain stuff, digestive issues, the list went on and on.
Turns out your body needs oxygen. Who would have thought?
He plugged me in, confirmed in about an hour or so that I was choking about eleven times in an hour. Put a nose cannula on me, which didn’t work, then went full-bore Darth Vader.
Not that far, blog gnomes. A little less Vader. More like just the mask.
Thanks, that’s better.
I went to sleep with that full mask CPAP and woke up with the guy coming into the room again.
“Did you forget something? Need to change something again?” I asked.
“Nope, good morning. You slept through the night.”
“You slept through the night.”
“Welcome to the real world, buddy.”
Of course it took awhile to get supplies and get my mask hooked up — New York is a nightmare when it comes to getting access to medical supplies and Tara and I have a little podcast miniseries showing how ridiculous it is. BUT we’re still grateful for the Affordable Care Act because without it, I would still be suffocating at night and Tara would be dead: we’d have like $300,000 in out-of-pocket expenses every year just to stay alive between the two of us, particularly because Tara has two preexisting conditions — being a type one diabetic and being a woman.
And there was the time where we couldn’t get supplies for months.
And my dog literally ate half of my mask.
So I was wearing a mask held together with masking tape at the start of 2016 and the brain pain came back, so I almost died again. Luckily, I’m related to some pharmacists back in Southern Illinois and while home, they were generous enough to give me some supplies at cost and some other supplies for free. Really generous.
THANK YOU AGAIN, BANDY FAM — AUNT PAM AND UNCLE STEVE AND ERIC AND ADAM.
Anyways, point is I’m not dead yet.