Notes on a Personal Health Crisis During a Global Health Crisis During a Democracy Crisis
2019 was such a horrible year that at the time, it felt like it was the worst year of my life. While 2020 didn’t exactly start as I wanted it to (something involving plane tickets, Iowa, and uncharacteristically poor romantic decisions), I still had reason to believe that this year would redeem the experiences that befell the previous one. And yet, here I am, memorializing what’s in my brain to try and make sense of 2020.
That was a lot. And I realize it. This push and pull of melodrama and self-awareness align with most of my reflections from the past year. I am stuck consistently between anxious musings about where I go from here to immediately scolding myself for making my significant personal health situation about me. It is a daily whiplash between wanting to pamper myself and wanting to scold myself. I am brave and beautiful but also totally normal and have no reason to feel special, obviously. And, of course, real life mimics this dichotomy.
Professionally, I feel years ahead of where I ended 2019, and I am endlessly grateful for it. I worked with some of the smartest people in politics, was a part of the greatest team I’ll likely ever work with, and challenged myself more than I ever had. But between the early morning zoom calls and late-night edits, I was waking up even earlier to make it to 7 a.m. doctors appointments and scheduling medical tests during an open break in the afternoon. The context here is that in September of 2020 I had what appeared to be an seizure, so was in the process of undergoing a series of medical tests.
October was a blur of tests, scans, and pity parties I’d throw for myself and mandate my unsympathetic boyfriend to attend (he had witnessed the original seizure, and thus was running my appointment schedule like the Army). At that point, I was most anxious about the sheer logistics of it all, managing a program on a presidential campaign doesn’t come with ample free time. I was inconvenienced but not scared: believing in sincerity that in the end the issue would be relatively minor to, at worst, epilepsy (my dad is diagnosed with it and we were having similar symptoms).
The doctors themselves were beginning to confirm this theory. My last neurologist appointment in late October ended with the doctor wanting me to take one more EEG test before labeling the diagnosis as a seizure disorder, most likely epilepsy. I left that appointment feeling relieved — I could finish the campaign with no additional appointments or health scares lingering. Not to make light of epilepsy, but it ran in the family and better to face the evil you know (right? idk).
So I turned my focus back to work and the global pandemic. Two weeks later on the evening of November 3rd (Election day — very chill) I received a voice mail from the Cardiologist I had done a few tests with asking me to call them back to discuss results.
Certainly, not the all clear voicemail I had expected, but it was Election Day, and the issue was with my brain and not my heart. I was certain I knew why they were calling so I wasn’t worried and didn’t call back.
A few weeks prior, my neurologist had recommended I see a cardiologist and get an EKG test done to rule out all options. When my EKG results came back totally normal, the cardiologist PA suggested I wear a heart monitor for two weeks just to be comprehensive and for peace of mind. She assured me my EKG results were textbook and raised no alarms, that the heart monitor would just be attached to my collarbone for a few days. What was the harm? I’ve always had health related anxiety, specifically about my heart, and was eager to prove to myself that I had no reason to be anxious anymore. They put the heart monitor on me that day and sent me home.
The monitor recorded a relatively uneventful week with one major exception: I fainted while getting bloodwork done. After hearing that voicemail, I felt confident they’d obviously seen some weirdness from that day and I would simply inform them I’d fainted and it would explain everything. I went to bed that night only thinking of Election results.
The next morning I again received a call from a local number. I answered and recognized the woman who left me a voicemail earlier. She informed me that the Doctor was currently present in the office and asked if I could be there within the hour.
Fully recognizing at this point that they believed something serious was going on, I agreed to come in. I would just have to explain to them that I fainted, I kept telling myself, they said my EKG was textbook, remember? My boyfriend, Seb, was quick to repeat calming affirmations and assured me that calling me in like this doesn’t necessarily imply something bad. That was when the gravity of the situation started to sink in; he isn’t a good liar.
Walking into the office an hour later all but confirmed my concerns. As soon as the receptionist saw me, she immediately ushered me into a separate lounge by myself so I could be comfortable. I sat on a couch and stared at a 12 inch tall plastic heart model as Michigan was called for Biden. Inside me was a growing feeling of resentment: I have spent the last 3 years of my life working towards this Election — and now it’s here I can’t even process the excitement of the inevitable victory to come. It felt, and still feels, deeply unfair. Before I could continue my existential spiral, the PA walked in. She explained to me that while I had fainted my heart stopped beating for a period of 3, 8, and 10 seconds. I very vividly remember making a joke about how crazy that was (she didn’t laugh). She continued on to say that it was important to her that she could come see me before the Doctor did so she could prep me for what’s to come.
“What is to come, exactly?” I remember asking, still not fully understanding. My heart stopped? Like, completely? Shouldn’t I be dead, then? What does that mean?
She went on to say the incident was very serious, and the head cardiologist is recommending I undergo surgery to have a pacemaker implanted in me immediately.
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I’ve put a lot of thought into how I want to write this, specifically the day I found out. There are a lot of drafts laying around, most of which I had only gotten around a paragraph in before deeming the entire piece completely insufferable and giving up. Everything up until this point was easy enough: a historical review, recalling facts. Now comes the processing, the details of exactly what’s happening to me and what my life is going to look like next. And truthfully — I don’t really know how to discuss that. I don’t even really know how to feel that. We can then, I suppose, return briefly to the facts: we don’t know why my heart stopped. The incident(s) are directly linked to episodes of vasovagal, a fancy word for losing consciousness, AKA fainting. Apparently, a common reaction in the body to a stopped heart is a jerking, convulsion like movement in an attempt to get blood to the brain — commonly mistaken as a seizure. The pacemaker would make sure that my heart continued to beat during any episodes. They do not believe this is an isolated incident, but also feel like the pacemaker is largely preventative, a procedure that would be helping out 40 year old future me. Admittedly, I have caught myself thinking “but what about 24 year old me?”.
Back to the processing struggle. I want to talk about getting on an all staff call an hour after leaving the doctor and facing my team who looked to me to set the tone on election results while I was still reeling from my news. I want to talk about winning the Presidential election after 18 months of work and feeling hardly anything. I want to talk about the anxiety and panic disorder that developed alongside this diagnosis. I want to talk about what it was like to have to pick up the phone and deliver this news to my parents, to my sisters, to the extended family who left me voicemails because I didn’t have it in me to return their calls. I want to talk about the surreal feeling of watching my mom teach my family CPR over Facetime. I want to stomp my feet and scream about how fucking unfair this is after the last two years I’ve had, after how hard I’ve worked. At its darkest points, my anxiety tells me it is selfish to write this because by all accounts I am okay and will continue to be okay: it’s just surgery, right? How do I express these sentiments during a global pandemic that’s taking over 1,000 lives a day in America? How do I process my personal grief alongside a country who is refusing to process its own?
I have spent my entire professional career fighting for ideas and concepts not necessarily out of lived experience, but because of shared core values, one of which being: the belief that access to affordable healthcare is a basic human right. My health situation this year has suddenly made this incredibly personal. In a global pandemic, I now find myself with a pre-existing condition and am placed squarely in the high risk category (COVID has a history of not faring well with unhealthy hearts, unfortunately). I am watching my coworkers and teammates discuss next steps and potential jobs while I move home to Houston to get additional medical opinions and, eventually, recover from the pacemaker implantation. I am continually being told I am lucky because I am young, healthy, we caught it early, and will be fine. I am struggling to merge these two realities: one where I’m young, healthy, and lucky, and the other where I’m getting a pacemaker at 24.
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July, 2021
This was written in November when things felt deeply scary and out of my contorl. It was my desperate attempt to process in real time the things that were happening to me. I am memorializing this mainly as a way to solidify that me having those feelings of anxiety, grief, and heartbreak are okay. Even amidst everything that was going on in November 2020. I had (and am continuing) to learn to be gentle with myself.
The most significant update from that time to now is that, after working with an incredible medical team in Houston (the medical testing process is truly a post for another time), I do not currently have a pacemaker. Instead, I am on medication that I take twice a day to raise my blood pressure & regulate my autonomic system, as well as being told to quite literally quadruple my daily sodium intake (“eat more french fries”- my doctor, verbatim). Eventually, I will have to get a pacemaker or another equally invasive procedure, likely in my 30s. If you are still here, I appreciate you sticking through whatever this thing is with me. In January, I got the all clear to move to D.C., get a non-campaign job, etc. At the end of July, I will return to Texas for my 6 month follow up. 2021 for all of us is the year of figuring out what exactly the new normal looks like — and for me in more ways than one. & that’s okay. I am incredibly grateful for the care I received and my personal community who supported me. Endings are weird.
