I was watching The Daily Show with Jon Stewart the other day, and he had a guest who had written a book called "The Book of Mormon Girl". The author, Joanna Brooks, spoke of how she had originally self-published her tale of life as a young Mormon who began to question her faith as she got older and how the book was ultimately picked up by a legitimate publisher.
At that moment, I experienced a long-forgotten feeling in my heart. I believe it's called...
I have also self-published a book... several, in fact. But there is one in particular that I want to be remembered for when I shuffle off this mortal coil.
It's called "Put On Your Parky Face." It tells the story of my first decade as a young guy with an old guy's disease, and how I volunteered for an experimental surgery that, at the time, I needed like a hole in the head.
Two holes, to be exact.
I was diagnosed with Parkinson's disease in 2000, about three weeks after my 45th birthday. Seven years later, really just beginning to experience real adverse effects of this slowly progressive neurological affliction, I was a writer/editor at the National Institutes of Health (America's Hospital!) in Bethesda, Maryland.
A big part of my job was doing radio features about the importance of clinical trials in the prevention and treatment of diseases. I started to feel a little guilty about having this perfectly good disease that I wasn't doing anything with, so I began searching databases for ongoing clinical trials that I would fit into. Most of the trials I looked at involved people who had more Parkinson's than I had or less. There was one that was a perfect fit.
It was at Vanderbilt University Medical Center in Nashville. I would have to pay my own way to and from to participate. I would have to agree to two eight-day stays in the Clinical Research Center during which time my Parkinson's medication would be withheld and my symptoms would be documented.
Oh, and there was a 50 percent chance that I would have to undergo deep brain stimulation.
This is the cover of my personal contribution to science that nobody seems to want to buy.
See, they needed 30 participants in this trial. The purpose of this "phase 1 clinical trial" was to see if people would sign up for such a trial, stay with such a trial, and -- if randomized to the surgical group -- could survive the surgery."
Deep Brain Stimulation had been being performed for years and was FDA-approved for late stage Parkinson's. What this study ultimately would like to demonstrate is that DBS done earlier in the course of the disease would not only be easier on the surgeon (the so-called "sweet spot" that needs stimulation is easier to find the younger a person is), and -- assuming the surgery didn't kill us all -- they figured it would be a boon to the Parkinson's community to have this procedure made available earlier rather than later in the course of the disease, giving the patient more years of mobility before the ravages of the disease completely set in.
It made sense. My neurologist agreed. So, I signed up. I was one of the 15 randomized to the surgical group. And needless to say, I lived. So did the other 14. In fact, after the five year study concluded, we only lost one person -- someone in the control group who left because of job requirements.
I thought this would be an interesting story, so I took my blog entries along with reminiscences of the days before the surgery and wrote a book. I thought I would have no trouble finding an agent, especially since the book is written in a light-hearted, humorous tone of voice. Very self-effacing and funny if I do say so myself.
I sent out query letters. Crickets. I sent out more query letters. More crickets.
So, in 2010, I published the damn thing myself, with a major update in 2011 carrying the reader through to the day I retired from the NIH.
After hearing Joanna Brooks' story, I began to hope again that somewhere, someone, somehow, might be interested in representing or publishing an uplifting story of hope where there is little reason for having it, of the joy of waking up every day even when your body doesn't even want to get out of bed.
I've sold a few copies. A few. It's available as a paperback for $15 and an e-book for $5 on my website.
But if you know of a literary agent or a publisher who might be interested in taking on a project that can't help but be seen as a winning proposition, I'm all ears!
Five years -- to the day -- after my June 13, 2007 surgery -- I gave the following presentation to a group of congressional staffers and lobbyists on Capitol Hill in Washington at the invitation of my friend and Vanderbilt neurologist Dr. P. David Charles.
I gave away a box full of books. I think I've given away more of the damn things than I've actually sold.