entry 007

10.18.26

Over the last few years, I’ve seen many specialists. I’ve been faithfully seeing a primary care doctor, a cardiologist, an electrophysiologist, a gastroenterologist, an obgyn, and a neurologist.

Let me back up.

The auras I’ve been having aren’t my only problems. This has been an adventure that seems to evolve with each passing month. Nearly every day for three years, I thought that I was going to die.

I’ve written countless letters. I’ve given my sisters my passwords and other important information.

I’ve been in a close, romantic relationship with ‘death.’

Now there’s a period on my social media I can look at, and every post during that time frame was under the guise of ‘this is probably my last post.’

I’ve been struggling with dysautonomia, focal seizures/auras, MCAS, hyperPOTS, endometriosis, and long-COVID-style symptoms. It’s a lot of hormonal/endocrine/neurological issues, and it’s just mind-bogglingly complex.

And while I think perimenopause kicked off the past few years’ intensity, I’ve struggled with these symptoms for a long time. I spent most of my 20s trying to treat this stuff. Most doctors I spoke with at that time really didn’t have much insight into hormones and hyperadrenergic POTS. Other than an endometriosis and panic disorder diagnosis, I was a mystery.

Panic disorder was wrong, however. I now know that those were episodes of dysautonomia and focal aware seizures. Really, I don’t think it is a stretch to imagine that this misdiagnosis happens often. I remember clearly explaining to my doctors that something happens in my body first— it’s not happening in my mind. When the episodes come on, I’m normally in a great mood, feel totally peaceful, and it just washes over me like a wave.

Before these last few years, I thought I knew how I felt about death.

But there’s a difference between how you think you feel about death and how you feel when you think you’re dying. I was pretty blasé about it, in theory. When I felt like I was dying, however, it was pretty terrifying and shocking. It felt like a ‘no, wait!’ But also with a simultaneous realization that it’s over. I mean, so many things run through your mind at once. You think about all the loose ends that live in the ‘no, wait!’ reaction. You think about all the things you might not be here for. The known knowns, the known unknowns, and even the unknown unknowns. I think even if you’re not the most enthusiastic person in the world— there’s this vague sense of leaving the party. It feels melodramatic. Like a child being taken to bed. At least that’s what it was like for me.

Going through all those countless instances of ‘dying’ gave me a lot of peace, though. The weirdest part is that each episode was different enough that it never felt familiar. I couldn't really grasp onto anything and say, ‘Oh, this is what’s happening; I know this pattern, and I just need to wait it out.’ Every time, there would be some foreign, unpredictable element that felt like, ‘Oh, this is the one where I actually die.’

It took me a long time to get here. Other than the extreme discomfort I feel during these episodes, I’m totally at peace with the outcome. I no longer have any adrenaline spikes or fight-or-flight reactions. I can calmly sit and observe what’s happening from both a first-person and metacognitive perspective, which, feelings aside, I think is a really cool opportunity.