NY Times 10th Jan 2018: In My Chronic Illness, I found deeper meaning.

[Countrygirl]

https://www.nytimes.com/2018/01/10/...s-i-found-a-deeper-meaning.html?smid=fb-share

In My Chronic Illness, I Found a Deeper Meaning

Elliot Kukla

DISABILITY JAN. 10, 2018

CreditDadu Shin
I became disabled overnight in a car accident. The car accident was a dream, but the disability was real.

I dreamed I was driving through the ravaged streets of Oakland, Calif., at the end of the world. I turned the corner and careened inescapably into a white chemical blaze. I woke with a start, the white flash still burning behind my eyes, the worst headache of my life piercing my left temporal lobe. I remembered my mother having a brain aneurysm years before and knew the “worst headache of my life” was not to be ignored. My wife and I hurried to the hospital, expecting life to change forever. Once at the emergency room, things moved quickly: CT scans were ordered, crystal clear spinal fluid was drawn from my back. Eight hours later, I was told I was perfectly healthy.

What they meant, but wouldn’t say, was that they didn’t know what was wrong. Over the next weeks and months, it became obvious that I was far from well. The terrible headaches continued, I developed burning nerve pain all over my torso, I was wrapped in a thick brain fog, I sprouted mouth ulcers, I was crushed with exhaustion. I would open my mouth and be unable to speak. I could get lost in my own house between bedroom and bathroom, and forget my wife’s name. I started having seizures.

By then, I had discovered that I was no longer trusted by my doctors about my own body or experiences. I reported odd, terrifying and sudden physical changes; they recommended cognitive behavioral therapy and Weight Watchers. I felt exiled from the world of the well, isolated by thick walls of suspicion. I’m used to feeling like an outsider; I’m the first openly transgender rabbi ordained by a mainstream movement (Reform Judaism). I am used to being rejected and told I should not exist. But nothing prepared me for the outsider status of being chronically ill.