Drinking was not a lifelong coping mechanism for me, which is something that’s very important to my story. When I was in my thirties, I started using alcohol. It was a way for me to deal with what was happening with my physical and mental health.
It is important to understand that in the U.S. hereditary hemochromatosis isn’t something for which we routinely test. A lot of women aren’t diagnosed until they’ve gone through menopause because that’s when their natural phlebotomy ends. In fact, most medical professionals I’ve spoken with seem to know very little about HH. And we—those blessed with the HFE genes—just think we’re going crazy.
The short story is that this disease fucks with a person’s head and heart. It also affects the liver, spleen, bone marrow, pituitary, pancreas and the central nervous system. Excess iron in your heart affects the heart’s ability to circulate enough blood for your body’s needs. Hemochromatosis can also cause abnormal heart rhythms (arrhythmia) and congestive heart failure.
Hemochromatosis. In the U.S. we don’t routinely test for this inherited defect — people at risk often get diagnosed very late. We start getting sick with things that can be written off as mental issues. It’s not uncommon to turn to alcohol to self-medicate. I’d started overly self-medicating when I made the journey from the Bay Area to Nevada.
YOU’RE AN ALCOHOLIC, YOU’RE AN ALCOHOLIC, FEISTY’S AN ALCOHOLIC!
After I died and forgot who I was, people kept telling me I was an alcoholic. I couldn’t remember anything else about who I was. I literally prayed every day that I would die. Drinking quickly became an innate part of what was left of whatever I’d been. I was overwhelmed with fear. I didn’t want to feel or care. I was totally alone. I had nobody. I had no family. No money. No memory. No car. No license to drive a car. No home.
People constantly told me things to my face. They started sentences with the words “Jane said.” This made me want to drink myself into a grave as quickly as possible. I wasn’t a mother anymore. I wasn’t a writer. I wasn’t a wife. I was an alcoholic. With severe brain damage. I was no longer — I was no longer. The end. But nothing was actually ending.
I didn’t feel like any of the people who expressed concern about my drinking actually cared about me. Michelle. Feisty. Whoever she was/is. There were only two people who seemed to care from a genuine perspective, and that wasn’t enough. Also, I was fucking brain dead and nothing anyone said made any fucking sense. I couldn’t remember what people said to me, so what I lived with was how it made me feel. A (sometimes) walking corpse.
And then, later, in Dallas, I was hospitalized in a semi-coma due to hepatic encephalopathy from ammonia poisoning.
And then, some indecipherable time after the hepatic encephalopathy coma, someone called. They just wanted to s ay hi and see how I was doing. At this point I’d been on heart drugs for some time. I was explaining to this person that I’d been taking meds for my erratic heart. Since then, I’d been a lot more…calm. I hadn’t been craving xanax and/or vodka, which, for me, had become an increasingly constant and overwhelming want.
My friend said: “You started drinking heavy when you started getting sick, in your late 30s. You’re not an alcoholic. You’re someone without health insurance. Or family. Or a home. Or help. Also—you’ve always been fuckin’ nuts.”
So, in 2018 +/-, I stopped drinking. Even though I could only get the medication for my heart for a few months, it had showed me that I hadn’t been imagining anxiety or a fast/erratic heartbeat. Meditation doesn’t cure iron overload. Neither does vodka.
My name is Michelle and I’m Feisty. I’m a crazy, disparate, sad, terminally ill, infinitely scared, sober person. Who knits. A lot.
P.S. After I posted this bit of writing, a British journalist sent me this very relevant article. It’s a good read.
Originally published on Medium.
Michelle O’Kane 