This will be the first in a series of posts about my life with dysautonomia. I’m a private person by nature and it’s something I’ve been reluctant to speak about until recently. Currently I’m working on a book (alongside a new novel) chronicling my twenty-five year struggle with the slow decline of my health, the difficulty I had in obtaining a diagnosis, the heartbreaking discovery that my daughter also has it, and the lifestyle I’ve developed to better cope with the symptoms and physical limitations caused by it. This first post sort of begins in the middle, but it explains how this all relates to my writing.
What is dysautonomia?
Dysautonomia is a broad-brush term for a array of chronic symptoms caused by an improperly functioning autonomic nervous system. It can affect heart rate/rhythm, blood pressure, digestion and other non-voluntary body functions. Symptoms of dysautonomia vary from person to person and can run the gamut from mild to life threatening. The cause is still unknown.
In the summer of 2014 I wrote my first novel, After and Again. A life of being an athlete, an adventurer, and an outdoorsman had ended. I was mostly bedridden. I weighed 118 pounds. It was believed by my doctor, my family, and myself, that I was on my way out. I had a body mass index of 15. I required assistance and a wheelchair to get to the bathroom and had to use a stool in the shower. If I stood up, my blood pressure and heart rate would both drop to the point where I lost consciousness. My long term prognosis was simply stated as “poor.” I was depressed and losing hope. I woke up every morning just wanting to stay alive long enough to finish the book.
After ten years of severely declining health, fruitless consults with countless specialists, several misdiagnosis’s, half a dozen or more ambulance rides to the hospital—some leading to long term stays at UCSF and Stanford hospitals—I had only just (and finally) received a diagnosis of autonomic dysfunction (dysautonomia). Three years earlier I had also been diagnosed with ulcerative colitis but the doctors couldn’t attribute all of my symptoms to the colitis. They removed my colon in March of 2014 . My doctors still have conflicting opinions on whether or not these illnesses were related. The popular belief among the medical community is no. My GP and I are both dubious. I only know I had symptoms of dysautonomia more than a decade before I noticed the first symptoms of ulcerative colitis. Ultimately the two together, whether related or not, nearly killed me…which is one of the reasons I’ve chosen to talk about this. Because if it weren’t for being so sick and knowing that my days may be counted in months or weeks, I might never have written that first novel I’d talked about since I was in grade school. Essentially, I owe realizing a lifelong dream to my illness.
I slowly improved after my colon was removed and the ulcerative colitis was eliminated from the equation. I still spent most of the following two years (and another completed novel) in bed, and an additional year mostly in an easy chair facing the window and my fruit trees. I still suffered (as I do now) from bouts of low blood pressure, low heart rate, orthostatic hypotension, heart rhythm issues, fatigue and digestive problems, but I’m alive, and I’ve learned tricks to mitigate some of the symptoms. I’ve carved out a life for myself, and I can even enjoy the mountains again. I’d like to boast about how strong I am, and how I’ve overcome a little understood illness, but that wouldn’t be true. It’s a simple case of “get busy living, or get busy dying.” Thanks for that one, Stephen. It’s always been an inspiration to me.