On falling down and getting up

Living with something there are no answers to.

We’re pretty sure the first time I blacked out was when I was 7 or 8. At least, it’s the first one I remember. 

My dad was taking my sister and I somewhere we never made it to, on the train in Chicago, and we were running around, climbing over seats, playing “conductor.” The old train cars used to have this little cab in the front from a time when a person was needed to drive the train, and we liked to stand in there, hang upside down from the plastic chairs, make a lot of noise. And then I woke up laying on the hard plastic, not knowing how I’d gotten there, and I screamed and screamed.

The next time was when I fell off a friend’s backyard jungle gym. Then there was the time I went for a run in the snow, jumped in my grandpa’s hot tub, and sprinted through the cold into a hot shower. Got out, got dizzy, and hit the kitchen floor hard. There was the time I was getting my blood drawn in the doctor’s office. The time on a roller coaster for a school field trip. The time I missed a medicine ball someone had thrown to me and ended up with a bloody nose, then slumped over in the chair, holding a Kleenex to my face, and woke up on the floor.

Each time was followed by an explanation, a trip to the doctor, sometimes an ER visit. Each time I was declared otherwise healthy. It was just an accident, a fluke, kids do crazy things.

But at some point the doctors run out of plausible one-off explanations for what could cause a loss of consciousness—heat, dehydration, head trauma—and we have to confront the fact that the blacking out just is. It isn’t the outcome of something else. I am not simply accident-prone. It is its own defining thing. 

Sometimes I pass out, and then I get up. 

The vagus nerve is the longest nerve in your body. It starts in your brain and travels down your neck, branching out to carry information to your internal organs, regulating and controlling various automatic and involuntary functions: digestion, heart rate, breathing, reflexes like coughing, sneezing, vomiting. Some of those nerve signals are sent to the vasomotor center in your medulla—where they manage cardiac electrical activity, blood vessel dilation. Most of the time all of these things work the way they’re supposed to and you don’t think about them. But sometimes you have to think about them.

Have you ever tried to consciously slow your heart rate down? Just by staring at it on the doctor’s screen and thinking slow thoughts. Once, during all of this, while laying on a hospital bed, I got it down to 38.

Vasovagal syncope—syncope is just the medical term for fainting—is actually quite common. At least in the mildest form. It’s what happens when a trigger causes the vagus nerve to over-react and send panic signals throughout your body. Heart rate and blood pressure plummet. Lightheadedness, crazy sweating follow. And, if you’re unlucky, a brief loss of consciousness.

Studies have found somewhere around 35% of people will have one vasovagal passing out episode in their lives. It accounts for the vast majority of fainting incidences and for a huge number of pointless ER visits—because it is terrifying and terrible and if it’s never happened to you before then you go to the ER. Mostly, now, I don’t go to the ER anymore.

Perhaps the most well-known example are the people who pass out at the sight of blood. But that’s not the only thing that will cause the vagus nerve to misinterpret the situation. Common triggers include: needles, aforementioned blood, stress or fear, bowel movements, extreme pain, heat, standing up too quickly, GI distress, trauma.

Common triggers I’ve found that make my brain think I’m dying, and then try to kill me, include: sometimes needles, often turbulence on planes, small boats, stomach flu or food poisoning, things that already made me feel slightly sick to my stomach, any amusement park ride, that moment after an accident when the flight or fight finally recedes and everything is going to be OK—that’s the moment when I pass out.

The majority of people who have a vasovagal syncope episode will never have another one. There are theories about why it happens, but no concrete medical answers. Personally, I subscribe to the theory that says your brain is telling your body to prepare for physical trauma: decrease blood flow, lower heart rate. It just misunderstood which trauma was about to hit. Most people will never have it happen again, maybe because their brain learns and adjusts after that first time. Of those who do have a recurrence, just over 80% will have only one additional episode in their lives. As the number of recurrences go up, the percentage of people it happens to goes down. When it gets to those of us who have had four or more vasovagal passing out episodes, we’re a fraction of a percentage of the population. 

I’ve had 12 or 13.

Plus a whole other dozen times where I learned to stop the passing out, where I willed my whole being at one spot on the wall, on the back of the airplane seat, at the clump of dirt in the rain on the sidewalk as I lay on my side and stared at it, white and drenched in sweat, breathing and clenching my fists and pushing back against the blackness around the edges of my vision. It’s hard to say how many times. Eventually, it becomes a little tricky to keep an exact count.

None of the research says how many people there are like me in the world. Probably a hundred thousand, maybe more; I’ve just never met them. One study, testing techniques to control the vasovagal syncope, described its subjects as people who had between one and 200 episodes of fainting. So there’s at least one person who has passed out 200 times. 

The thing they don’t ever tell you on TV, when someone passes out at the sight of blood for comedic effect, is it’s not the fall, it’s the landing. Hitting your head has consequences.

Instead, I was watching a movie a few weeks ago where Jennifer Lopez kept jumping right back up. She never panicked about where she was. She never paused to put together what exactly had happened. She never came to in the act of vomiting on herself. Did anyone tell her that coming to after one of these episodes is nothing like waking up? That you can feel the hardness of the floor under you while you’re still deep in some wildly dark alternative reality. That you have to drag your consciousness back to the moment, through a thick haze, and then in an instant you’re awake but nothing is where it should be. It’s like one of those dreams when you’re up and getting dressed and ready for work and then with a jolt you wake up in bed again, and you couldn’t swear that this one isn’t the dream. It’s like that except with pain and nausea.

In retrospect, it was probably the passing out in the middle of the high school training room that finally did everyone in. That’ll really freak people out. And so I found myself as a teenager carted through a quantity of tests and hospitals normally reserved for kids featured on St. Jude’s commercials. Nothing makes you cool in high school like carrying around a shoulder bag heart rate monitor.

This included the aptly named tilt table test, where they strapped me to a table and tilted it upside down to see what would happen when I passed out. My body revolted, though, against these men who thought they had so many pretend answers. It refused to black out. Now, I would tell you it was because I knew it was coming, that my subconscious prepared and my brain never really thought trauma was imminent, but back then they told my parents it was all probably just some teenage girl thing, hormones and female hysteria and what have you, I’d grow out of it.

I was declared otherwise healthy.

Here’s a lesson I learned too young, a lesson some people never learn but you should: You have too much faith in the system, you’ve watched too many episodes of House, you think there’ll be an answer but mostly there aren’t answers. Mostly, there are overconfident best guesses and then you get on with it.

The doctors were right about one thing (among a great many things they’ve been wrong about): I did mostly grow out of passing out. In my 20s, the only female cardiologist I’ve ever had finally taught me the super official technique for vasovagal syncope. This the best that the best and brightest minds have come up with. Are you ready?

You’re supposed to cross your arms and legs and squat. 

There you go. In case it ever happens to you, that’s it, that’s what you should do. Scientifically, this forces a kind of muscle tensing and raising of your blood pressure. Anecdotally, I’ve found clenching and breathing and sitting down work just as well. I’ve learned to feel it coming, to manage it.

At some point in my 20s it also became clear that I had a very occasional electrical arrhythmia in my heart. It’d be illogical to think these thing aren’t related, to not recognize that they’re overlapping Venn diagrams of my central nervous system gone crazy. So naturally, we just did the same tests again, and again declared me otherwise healthy.

Cardiac technology has come a long way recently, though. The things they have now to monitor and track your heart’s activity are the size of a battery, nothing like the purse with wires I carted around in high school. And what they can do now with that information is mind-blowing. As long as you have a fairly standard problem, a heart attack or something statistically significant.

A few years ago, my newest cardiologist made the bet that I would fall within those stats, that’s why they’re called odds. With all this new knowledge we have, he thought I must have a standard tachycardia. This would explain everything, somehow, he said, never mind the parts of my story that didn’t fall within the diagnosis. The doctors make their best guesses.

His best guess was that we should do an ablation—a procedure where they go up through the artery in your groin to your heart and burn (or freeze) small spots to remedy the electrical misfiring. It was supposed to maybe fix everything. It was also supposed to last two hours. It went on for six instead, while I was strapped down so that if I passed out I wouldn’t flinch and cause their micro instruments to sear the wrong part of my heart. Mostly conscious, I listened to Hamilton on repeat until my phone died.

The guesses turned out to be wrong. For weeks after the ablation, things got much worse, with no medical explanation. Then they got less bad, and eventually they just went back to what they’d always been. The doctors say there’s nothing structurally wrong with me, with my heart or my brain, nothing that puts me at risk for complications, no comorbidities, it’s mostly under control. I could do another ablation, but I don’t see what that would answer. Every so many years something triggers a bad episode I can’t control. I’m otherwise declared healthy. 

There’s a phrase the doctors use that I hate. They call this all just a “quality of life” issue now. Which is really what everything is, if you’re not going to die. Short of death, everything else is just quality of life.

There is no real cure for vasovagal syncope. Maybe I should have led with that. There is no cure, so please don’t ask me. You’re probably making that face right now, the concerned face, and you want to say something like “you should really be careful.” As if the plurality of my episodes haven’t happened in hotel bathrooms. What am I supposed to do. Not go the bathroom? Or just not stay in hotels? And if you know me personally, you probably want to text me right now. Don’t.

I mean this in the nicest way possible: There is no input you could have on this that I want to deal with. When people say they don’t want to talk about something what they mostly mean is they don’t want to accommodate other people’s emotions and reactions and input to their talking. Unless you’re that guy who has blacked out 200 times. You, I want to talk to.

There’s a famous Maya Angelou quote that writers and athletes and people who are prone to quotes use all the time: “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

This is actually true for everything. You aren’t going to remember the details of what I’ve said here. Even my mom gets my details wrong. But you will remember your vague general feelings about it.

People mostly don’t understand why I’ve blacked out 12 or 13 times (hard to say exactly), or why sometimes I have to walk in circles until my heart rhythm becomes normal again, or how come I am terrible at elevation and never going scuba diving and generally avoid small planes. But they do know that they feel like I have a lot of issues, a lot of accidents, and so it all becomes vaguely lumped together. “It’s always something with Kelly,” they say. It makes me seem flaky and unreliable, because it is flaky and unreliable. I don’t know for sure when it’ll happen and so it feels to other people like things go wrong at random. It feels like it must somehow be my fault or my personality or an outcome of my choices.

A few weeks ago a friend shared this essay someone wrote about the existential crisis of dealing with one vagal episode. And it pissed me off. They were going on about how the worst part is the fear of missing out, the theoretical anticipation of what could happen if they ever passed out again, at the same time I was dealing with the actual literal fallout of that happening: a bad concussion after the first really bad episode in many years. 

I couldn’t figure out why exactly I was so annoyed, though. He can feel however he wants to feel about his experience. Until I realized what he was saying was this: The worst thing they could imagine was ending up with my life. What if you black out while on assignment for your first big cover story or traveling at a work event in France or just while you’re out before a dinner meeting. What if.

Those are all real examples. And the answer is: You deal with it when it happens. Not every hospital visit comes with a moral. The worst part isn’t the fear unless you make it the worst part. The worst part is when there are actual injuries and pain.

The last time I blacked out before this most recent time was three years ago when I was flying into Denver for the final interview for a big new job. The turbulence can be bad coming over the Rockies—it has something to do with the way air pressure and wind work on the mountains—and I felt it coming on: the blackness around the edges, the pressure, the cold sweating. But I couldn’t stop it this time and I came to vomiting on myself. If you’ve never regained consciousness while in the act of throwing up, the major issue is that you have no control. It goes everywhere. The flight attendant handed me a cocktail napkin.

As we taxied to the gate, I panicked, covered in vomit and nearly in tears. How could I take a job where I’d have to fly in and out of here all the time. What if I blacked out half the flights. I couldn’t do it. No way. How was I going to fly back home in two days. How was I going to do any of this. How was I even going to make it to my interview.

And then I went to the airport bathroom and changed clothes and washed my face and texted that I’d be 20 minutes late for dinner. What other option in your quality of life is there.