Now that I feel mostly well, the times that I don’t mean that I, along with that trusty, timeless text on human anatomy, wikipedia.com, are up until 2am “diagnosing” the autoimmune epistemology of critical conditions like “rash”, “indigestion” or “groggy”.
In the early days of December, I returned to my beloved New York after five weeks traipsing through Madrid, Hong Kong, Tokyo and Seoul. I was delighted to be home. I was overjoyed to almost need a winter coat. I was acutely aware something was amiss.
Seoul does offer a nice view, however
A comprehensive, after-midnight Google investigation gave me the answer I was looking for. At the tenuous age of almost 32, I’d obviously developed lactose intolerance. It obviously stemmed in part from my Grave’s Disease, and in response I would adjust my diet accordingly and start living my best life. Happy new year!
Several days of non-improved misery later, I went to the real doctor – a gastroenterologist with degrees – and he said, “This isn’t your fault. It’s likely a bug you picked up somewhere. Have you been traveling lately?”
What you probably know about this blog is that it documents my experience with Grave’s Disease. What you probably don’t know about this blog is that the idea for it came to me while I was in the bathroom.
A year ago, on sick leave and at my cousin’s house in the suburbs, I was freshly diagnosed and 100% miserable. Kind of like 100% Diesel, but the exact opposite. My cousin was kind enough to let me wallow around in her house for a week and do very little, except sweatily watch movies and drink decaffeinated coffee.
It was on the third day, sometime in between the First Nap Of The Afternoon and Googling the chances of my hair falling out, that I padded into the Torrey household hall bathroom, looked at my hollowed face in the mirror and shouted Eureka!
I would write about this. I would share this story and see if it resonated with anyone else. I would live it, and write it, and it would be the way to make sense of it all. There was something there, something below the sad surface, that knew this was going to be OK. Something that knew, a year later, I’d be back in my cousin’s bathroom, staring into the mirror with full cheeks and a stabilized metabolism. (Who doesn’t dream of such things?)
I was scrolling through old photographs on my phone and arrived to ones taken in June of 2014. It’s my face, but the red rims around the eyes give it away. I see a sick person now, in those photos. I see the watery, staring eyeballs, glazed and huge, and remember what was going on behind them. I doubt a stranger glancing through the pictures would notice the difference. But I do.
Also, I spend a lot of time in my cousin’s bathroom.
I have a nightly habit of writing in a journal whatever I’m feeling at that time. It doubles as a process to pen through the stuff and write some kind of resolution to what’s going on in my head. Sometimes I read through old entries and my thoughts sound poetic. Mostly they are just embarrassing and after I cringe and put the notebook away, I vow to never go back and reread entries. From July 14, 2014, in scrawling green pen, is this question:
Why don’t I feel well?
The words are printed in bold, whiny letters and the ink bleeds through to the next page. When I run my finger over the lines, I feel it dented three pages deep. I remember the day I wrote it because I remember ripping the drawer from its track to take the pen out. I didn’t have the answer.
There are some 50 million Americans with autoimmune diseases and most of them begin their illness in the dark, fumbling through protracted bouts of insomnia or depression or nerve pain, until finally, a lab comes back or an infection lasts too long and a diagnosis is pronounced.
The early signs of autoimmune disease are more subjective – they can be described as an overheated 30 year-old lamenting to her journal that she doesn’t feel well, plagued by obscure joint aches. Sometimes it’s nothing you can SEE. It’s nothing you can measure. You’re presenting yourself as a classification of person where there’s vaguely something wrong with you but you’re also kind of OK. Like Nicholas Cage.
(Sorry, Nicholas Cage).
I don’t know what happens next.