Stories: Brushes With Death, Or Not

Walking Out of Personal Trysts With Trauma

Shift the Country is doing “Stories” posts from people working to make shift happen. Stories are our humanity; they are who we are, were we came from, what we’re dealing with, and where we’re going. They’re also key to several of the 5 Things. Today’s story is from Shift the Country founder Vanessa Burnett. It’s a follow-up to medical emergencies in this post, and this one during the holidays. If you’re interested in guest-posting a story, let us know.

Terror, trauma, and fear look like so many things. I could list them here but that’s not the point.

I came here to talk about how I’m pulling out of my own accidental tryst with terror over the past month or so. It’s health stuff, but it’s also some deep fears about not getting this nonprofit off the ground after putting so much into it to get it stood up properly. More on that at the end of the post.

I write this post knowing everyone has their own trysts with terror. Well, maybe not everyone. But most. We’ve mostly all had at the very least a death-defying vehicle near-miss or survival; because that’s what modern life brings. But there are a zillion health trauma stories, and a zillion humans being awful to other humans terror stories.

Part of how we can get through them is by talking through it; asking people to listen. So thank you for listening to this one.

Why Tell the Story?

Vulnerability builds connection, but it also suuuuuccccks. I am not always great at the vulnerability. I grew up having to be tough; in a small town dominated in my world by the same kinds of people now who now up the Republican “base.” And base is the right word. But that’s not the focus today.

I also grew up with the idea that you keep your medical stuff to yourself (another part of why I don’t usually share much is that I don’t want unsolicited medical advice). But I keep going over and over things from the past six weeks, so I thought it might be cathartic to do something different and write it all out. Maybe it will help me to not keep going over and over the story. Plus, in the future maybe I can just refer to it here on the interwebs, rather than retelling the whole story? Worth a shot. And you never know if someone might read your story and find something they needed, too.

We walk forward together. So here goes.

This story starts in early December.

The month started okay. We had a family celebration on December 10; in the new-to-them home of some relatives. A small, low-key affair. It seemed nice. We had dinner. And then I had a weird sensation in my mouth; and some swelling like hives. I stopped eating, took Benadryl, and looked at the clock. My throat started aggressively closing about 20 minutes later (spoiler: I survived, since I’m here typing… so that part is good).

Back Stories

First anaphylaxis — to meds: I had had anaphylaxis for the first time ever after some burn treatment meds in the summer of ‘20. At that time, I happened to have expired epipens in the house for allergy shots I never got (due to logistics). Pretty exciting to have them handy, as my tongue was swelling up and I’m pretty sure my brain and body were slowing down. I’d never used an epipen, and it took a while to figure it out and then to get the guts to stab myself in the leg with it. Luckily, some friends had happened to stop to bring me food due to the burns. They took me to the hospital after I finally used the leg-stabber.

As a side-note, in ‘20 I’d been writing “try not to get dead” on Facebook a lot since the pandemic had started. My friends gave me a healthy ration of sh*t while we were on the way to the hospital for taking so long to figure out and then use the epipen. “You’re not trying very hard not to get dead!” Yeah, yeah. They weren’t wrong.

I’ve gotten better since then, but denial is a powerful force. I can see how denial has done so much damage to humans over the centuries. It’s hard to believe your body is actively shutting down in the moment.

Second anaphylaxis — to food: I had anaphylaxis again in the summer of ‘21; this time to food for the first time. That winter, I had some scary allergic reactions in December ’21 and January ’22 including a Christmas trip to the ER. So that’s nice. No idea what I’m reacting to.

I got allergy testing done with no clarity, so I basically spent most of ‘22 eating very few foods and being reasonably hyper-cautious about varying that since I’ve never been able to figure out what’s causing the “idiopathic anaphylaxis.” It’s a fairly unsettling way to live… and I’m really understating it.

This is the part of being vulnerable that I’m not good at — sharing the tough parts.

It sucks to be in a grocery store and to avoid something that looks good because you don’t know if you’re allergic, so it’s better to just say no. Same for Thanksgiving, or Christmas, or any party. Lots of folks have known food allergies, and that sucks. The unknown cause part makes food allergies even more “challenging.”

December 10

Back to this past December 10 at the family dinner. I thought I’d eaten all “safe” food, so I was really caught off guard when something started going funky. I tried not to freak out, and let the Benadryl do its thing. Then my throat started closing.

It was a very weird sensation, and different than my prior anaphylaxis-es. A feeling like your throat is trying to strangle you. I grabbed an epi-pen, and ran to the bathroom down the hall to use it (yeah, yeah… I should have just used it in the kitchen… working on trying not to get dead). Well, that was a frustrating experience because I forgot to take the blue “safety” thingy off the epipen and it wouldn’t work. I ended up trying different epipens, and didn’t remember about the safety thingy until the fourth stab. Yikes. The bruises were incredible. I’m a muscular person, and when I’m trying to get the epipen to work because my throat is closing… well, I was extra motivated.

My dad and I headed off to the hospital. While I was there, I asked the hospital to take the blood sample you need to check for certain disorders tied to allergies. Once you get to the hospital it kind of seems like overkill to be in there; because the emergency has diminished… but the risk may well remain. They fill you full of meds as a protocol, and steroids after just to be safe.

Other than recovering from the meds and having wicked-looking bruises, I was fine. Jumpy, but fine.

December 25

On Christmas night, we had a larger family get-together than the one earlier in the month. We were all hoping for not having an emergency room visit like last Christmas, or like the family thing earlier in the month. It’s good to have goals.

I was reasonably careful at dinner and only ate things I thought I’d eaten in the past month or that seemed “safe.” I was having a sort of desert as we were wrapping up dinner, and I got the sensation again in my mouth like on December 10. No hives this time. I stopped eating and watched the clock.

About 15 minutes later my throat did its thing again trying to aggressively close – and it was fast. I was scared. Again, but faster. With no hives this time, this reaction seemed to come on out of nowhere with no warning except for the weird sensation. What if I’d been asleep?

This time, I did the epipen in the kitchen; just on the other side of the counter from the family. I managed to stab a blood vessel, so my sister-in-law helped with the mess. Dad started the Jeep, and we were off to the hospital again. Started to seem like a routine. This time I had the mouth sensation again on the way… and a few minutes later in the emergency department waiting room my throat started to close again. I did another epipen in the bathroom, which was right there.

My freaking throat started to close again about 45 minutes later. By then, I’d already gotten all of the IV anaphylaxis meds… and had been moved to a location in the emergency department right near the nurses’ station in case things went funky fast. When they did, the doctor and nurse came running. In the moment I was thinking, “Ah. So this is what it’s like to be in a scary situation in the ER… where someone is watching your vitals in a high-pressure moment to make sure you stay alive.” And they did: and my vitals were fine. My oxygen stayed steady. The doctor was looking down my throat and making declarations as I was arched back with a tilted head to get a clear airway. At that point, they didn’t want to do more meds due to heart attack risk; and also my oxygen was holding. Basically, they coached me through it… with the idea that the meds should keep it from closing. The intense spasm lasted a minute or two; although time seemed to slow down as it sometimes does in a crisis.

Not long after, everything seemed to calm down a bit. We left the hospital eventually, and returned to the house where the family were all staying. Sheesh. Everything seemed fine; aside from being terrified because my throat had tried to strangle me three times in one night. But: meds. Better living through chemistry. Maybe?

Christmas Week

The next morning, we sat around the breakfast table and I thought all was well. Until it wasn’t.

I ate something… and the same pattern repeated. The sensation, and then the throat starting to close. It was slightly less severely than the night before. I threw my head back and coached myself through it. Since my dad had seen the doctor and the nurse coach me through it at the hospital, he was helpful too.

They’d said at the emergency department that the steroids should keep my throat from closing. It was too soon for an epipen, and I was on steroids. So, okay. That’s helpful to a point, but it’s still terrifying when your throat is actively acting like it’s going to close.

It kept doing that cycle in spasms for about 2 hours. I started to get the hang of sitting contorted in an tilted-head, arched-back position to keep my airway open. It was a holiday – so my doctor’s office was not open to help figure this out.

A few hours later, I tried to drink something I normally drank. Again, same spasm pattern. It lasted for 2-3 hours solid. We got more meds at the pharmacy per my prior discussions with a specialist in case my allergies ever ramped up; including Pepcid (it’s one of the meds in the anaphylaxis IV protocol used by the emergency room).

I tried to eat soda crackers, and had the same terrifying reaction… again for 2-3 hours.

I tried liquid Benadryl with no dyes or addititives, and had the same terrifying reaction… again for 2-3 hours. BENADRYL.

I tried to eat RICE, and got the same terrifying reaction… again for 2-3 hours.

And that’s when I hit deep terror.

As anyone who’s dealt with food allergies may be aware, rice is like literally the most neutral food one can eat. Ever. There are stories about people with the most extreme allergies basically surviving on rice and turkey and maybe bananas and nothing else.

I couldn’t even eat rice. What the actual hell?

That Monday night was pretty bad. I was terrified. Would I be able to eat again? Ever? You can’t stay alive long not eating. That’s just not workable. I was going through a hell of a lot of water, but that won’t do for the long term.

I was scared to sleep, too… with these near-throat-closing spasms. They’d lessened a tiny bit once I’d started new meds in the afternoon; but not so much that I could eat. I slept near where other family people were staying over even though I lived nearby. It didn’t seem wise to be by myself.

I tried to eat rice again on Tuesday… with the same result. Slightly lighter near-throat-closing spasms for hours. I was pretty terrified. I did manage to talk to my allergist’s office; they were an absolute lifeline. They put me on the post-anaphylaxis steroid protocol, and we waited for the allergy-related blood tests to come back from the hospital.

I didn’t eat anything on Wednesday. By then, I was in a sort of zombie state. Since I hadn’t tried eating, though, the spasms didn’t really happen Wednesday. It was a welcome break, but I was very out of sorts. I was basically in suspension; in a holding pattern. Without food, and not certain if I’d get to have some ever again, or anytime soon.

Thursday I managed to eat a bowl of rice without having a spasm afterward, and I was more excited than I could possibly explain. It’s not much, but it was also everything.

It was a sign that I had a shot at survival. That whatever was going on wasn’t so bad that I couldn’t at least eat rice. That’s a lot of double negatives but hey. Desperate times and all that.

Later on on Thursday I had one of these throat-closing spasms so bad that I went into an urgent care. SHEESH. It was competitive with the ones that I’d gone to the hospital for on Sunday. One of the urgent care doctors initially thought I should have already used an epipen, but I was on A LOT of steroids and not convinced I was in anaphylaxis. My blood pressure and pulse were shooting up, too. The second doctor said I’d done the right thing. The steroid prescription was, in fact, a lifeline protecting against anaphylaxis and he confirmed I shouldn’t need an epipen while I was on them.

New Diagnoses

I found out on Friday of the holiday week that what I’d had in December that drove me to go to the emergency department twice was not anaphylaxis. Holy %@*#.

My allergist called with that news that Friday night (December 30)… after looking at my emergency department blood test results from December 10 and December 25. It turns out that on those two trips, I’d not been in anaphylaxis. The science is the science.

The good news for that upcoming holiday weekend was that the two December emergency room visits and near-throat-closings weren’t tied to idiopathic anaphylaxis… and therefore the throat-closing spasms in the week since likely weren’t allergic reactions. In theory, it was instead likely related to acid reflux. The best news that Friday night before New Years’ was that I should be able to eat. I could theoretically eat at least some “safe” things through the weekend without anaphylaxis risk. Unbelievably helpful after five days without food. I still wasn’t sure about the spasms, but I had eaten both Thursday and Friday without a spasm immediately following. I’d been on Pepcid since that Monday… which was likely what had changed over the course of the week and led to that ability.

The week after New Years’ I was able to follow up with two doctors. I have since gotten updated diagnoses, and done a ton of reading on what’s going on with all the pieces and parts. I’m also deep into major lifestyle and dietary changes to mitigate damage. Also, definitely not looking for medical advice.

Just for the hell of it, here’s the big picture about what’s going on…

• Basically, I’m being treated now for gastroesophageal reflux disease (GERD), with associated laryngopharyngeal reflux (LPR).

• About GERD, from the Cleveland Clinic: “Acid reflux happens because a valve at the end of your esophagus, the lower esophageal sphincter, doesn’t close properly when food arrives at your stomach.” GERD is what it’s called when that becomes chronic and there’s been damage. “GERD can lead to more serious problems.” Yeah. I’m seeing that now.

• LPR is also called “silent reflux.” I can see why – I had no idea. I haven’t had the common symptoms of acid reflux or GERD, like heartburn.

• LPR also causes chronic pharyngitis,” or chronic sore throats, which I’ve fought since I was a kid. This is one big piece of this that I’ve figured out myself based on reading up on all of this. How on earth all of my many doctors over the years didn’t figure out that LPR could be part of my chronic sore throats instead of just allergies is absolutely beyond me. In prior coordination with an ENT doctor, an integrative medicine doctor, a family doctor, and allergists over many years… I’d gotten the sore throats to a manageable level with allergy meds. Apparently everyone (including me) just figured that’s the best I could do; but I didn’t know LPR was a possibility. I always fight sore throats.

• There are other voice box (larynx) damage symptoms, including “excessive throat-clearing,” and some hoarseness since this all essentially erupted for me the week of Christmas. I’m supposed to try to stop the throat-clearing, and to minimize coughing. Easier said than done, but now that I know this I’m working on it.

• The most notable larynx (or voice box) damage in all of this recent trauma seems to be the agitated vocal cords. Understatement. Okay the vocal cords seem straight-up angry, since they’re what’s been trying to strangle me recently. Or what it feels like has been trying to strangle me. It’s a condition called vocal cord dysfunction (VCD), or inducible laryngeal obstruction (ILO), or paradoxical vocal cord movement (PVFM), or laryngeal dysfunction. VCD is not necessarily tied to GERD/LPR/acid reflux, but in my case it looks like that’s the source.

• The throat-closing spasms appear to be called “laryngospasms.” Per the Cleveland Clinic, these are when “your vocal cords suddenly spasm (involuntarily contract or seize). As a result, your airway becomes temporarily blocked, making it difficult to breathe or speak. Laryngospasms are rare and typically last for fewer than 60 seconds. Even though laryngospasms are scary when they happen, they usually don’t cause serious problems.” Usually.

• A rare form of those things are called “paroxysmal laryngospasm.” NIH describes this as “a rare laryngeal disease that generally occurs secondary to gastroesophageal reflux disease (GERD). “Paroxysmal laryngospasm yields obvious dyspnea (see next)." Incidents are typically reduced by treating the GERD when it’s known to be associated to that.

• “Dyspnea, or shortness of breath, is the feeling that you can’t get enough air into your lungs. It might feel like your chest is tight, you’re gasping for air or you’re working harder to breathe.” Severe dyspnea can go along with paroxysmal laryngospasm.

• Unsurprisingly, anxiety can go along with all of this… and either be a result or a trigger. Anxiety about anaphylaxis after experiencing it is also known to contribute to or trigger other complications.

There are a few other health issues that may relate, but I don’t need my entire medical story on the internet. This is quite a lot — and it’s just on this one set of issues. I didn’t even go into some of the deeper risks tied to these issues; because this post is long and terrifying enough without all that ruckus.

The Situation Since

Overall, GERD is not unusual. Cleveland Clinic says “the condition and its symptoms touch a huge number of people: 20% of the U.S. population.”

The whole set of complications listed above that go along with GERD are less common. Once GERD is chronic, various kinds of damage can occur. For me, now that I know… I can work to minimize risk as much as possible, stay on the relevant meds, dig into some of the medical bits with doctors to assess the depth of damage, and hope it can heal and recover.

The apparent laryngospasms haven’t reappeared since that week after Christmas. The last one was that Thursday in the holiday week; where I went to urgent care for a major spasm and then had smaller spasms for about 8 hours after.

My mouth and esophagus have been messed up since Christmas; although less weird week by week. Now that I understand what’s going on with my larynx I can see how it’s a mess, too. So we’ll see what happens.

I’m calming down a bit, but I’m going through all the stages of grief. Lifestyle changes bite. Diet changes suck. So do health changes that make your systems feel off-kilter; and health developments with dangerous aspects to them. All of that’s on top of the feeling of being strangled repeatedly. And honestly — the idea that the laryngospasms “usually don’t cause serious problems” is not reassuring.

Clawing Back A Life

I don’t like to talk about it, but I was nearly disabled by health drama in my 30s. I’ve managed to claw my way back to a mostly-normal life since then up until now. My conditions were such that they could be turned around – and I had access to what became one of this country’s first-ever integrative medicine clinics. I learned through all of that that I had to take an active role in figuring health stuff out, too, because it’s all intertwined… and Western, allopathic medicine isn’t great at big-picture stuff.

I got my life back after all that. I’ve been grateful since every damn day for it. I rarely talk about it because TRAUMA SUCKS. It changes you. And it’s just too much stuff to even explain. All of that is part of why I have a huge aversion to unsolicited medical advice.

Having major life-altering health crap come into my life again now is part of why I’ve been going through grief and anger the past few weeks – while also attempting to get and stay functional. This is rough, and it’s scary. I think I’m getting my sea legs for this new journey, but I don’t know how stable they are yet.

Fear About the Nonprofit – Shift the Country

The other anger, fear, and terror I’ve been experiencing since this health stuff all started in December that’s extra frustrating because of this nonprofit, Shift the Country.

It was basically ready to go just before all this health stuff erupted. I’ve been working to stand it up since last spring (really since the winter of ‘18), so I’ve wanted to pull my hair out in frustration that I haven’t been able to do much with getting things rolling this month.

Shift the Country is ready to start doing stuff. To work with volunteers. To build coalitions. To fundraise. To start ginning up activity and action and new shift.

It hasn’t happened, yet, because I ran into this health wall. I did go overboard creating online webinar event call thingies, but we’ve gotten very few signups.

I’ve been, basically, terrified that we’re not going to get organization anchored and funded… and this new organization is specifically designed to help Democrats and other Americans fight an empowered authoritarian movement up in the US. There’s not another organization with this kind of methodology that we’re aware of. And we’re not doing a whole lot yet to deliberately fight authoritarianism. But we could.

We need volunteers and funding to get this shift to work. I’m trying to work at this as a full-time job, and right now that’s not working. I’d planned to start fundraising in late December — and I’m just now healthy enough to get to it (after all the event creation, too). It’s not the right time to give it up, but if we can’t bring in funding to keep it going the thing will die on the vine.

I’m hoping to avoid that. I’m trying to get a handle on that fear, too. In reality, I know we can work the problem. “We” is a key part of that, and I need to now get super good at asking for help.

I am confident we can help Democrats and a coalition of others to help hold this country together… using some things that haven’t yet been tried at scale. We should and could go for it. Those things are the 5 Things.

Counter Fear

Finally, I’ll add that I spent many years on the idea that we need to “counter fear” up in this country. I was so sick of dealing with post-9/11 terrorism driving so much in the US. Now the threat is from our own people… and it’s still all based in fear. Fear all around. We can do and be and create so much better. That’s what this work here at Shift the Country is.

Let’s drive a huge movement of loud, authentic, plaintive moral advocacy for the future we want – not just for policy specifics. Big shift. Big stuff. Big lives. Big equality. Big thriving. All the things.

Time for the rich to share. Time for us all to take care of humans. Time to counter fear.

Thank you so much for reading, and for your support in so many ways. Good health and good luck to you and yours as we all navigate this tricky planet.

Onward.