by CHARLES HARPER
Charles Harper wrote this as the first column for his local newspaper in Sedona, AZ. It is a series of articles on discovering the sacred and the profane in the everyday nouns of our lives. It appeared in the Fall 2007 PXE MemberGram.
This particular epiphany began with a phone call. Specifically the people of True Entertainment called me and asked if I’d be willing to be featured in one of their TV programs called Mystery Diagnosis.
This is a program that features people who have life changing disorders that were hard or impossible to diagnose. They trace the subject’s journey in search of an explanation and, if they’re lucky, maybe a treatment or a cure.
After some discussion, I said “No, thank you”, and hung up.
It was the hardest “No!” I’ve said since I turned down 25% ownership in a nightclub in New Haven, Connecticut when I was a student at Yale Divinity School.
You see, in the first place I suffer from ADD. Also known as “Applause Deficit Disorder.” It began because I was one in a family of six and to add to my anonymity I was a twin. That may sound glamorous to some but you try sharing your birthday, the one day of the year when you’re supposed to be the center of attention, with someone else. In any case, my mother was a nightclub singer and is a writer, my Dad is an artist, and every one of my siblings is in one of the performing or studio arts. I myself am an artist, teacher, and preacher, all of which are good for scratching my ADD. We all needed to find a stage where we could feel the heat of the spotlight, feel the blessings of our parents, and ultimately take our bows.
But Mystery Diagnosis runs on the Discovery Channel. I’m not sure I even get this channel although my granddaughter’s babysitter assures me I do. Nevertheless, I know and you probably know that Mystery Diagnosis has a teeny weenie demographic that Nielsen can’t even find on its techno-wiz spyglass. I had about as much likelihood to find fame on this program, as I would sunbathing by the Beverly Hills Hotel swimming pool. Actually less, since I’m no Raquel Welch. So I said “No”.
Before I said “No” I asked about the money. I have two daughters in college, a granddaughter in pre-school, and a coffee jones that is only assuaged by the tourist- priced coffee of our local bakery. If I wouldn’t do it for the fame, I just might do it for the fortune.
Well almost. After I had mentally spent my SAG/AFTRA* scale payday check and before I had counted residuals for re-runs, I learned that it was not their practice to pay people like me for appearing on their show. After all there were no advertisers spending super bowl sums on a 30 second spot.
I kid you not. This is how miniscule the production budget was. The True Entertainment execs said they had to do a lot of their filming in LA and they didn’t want to spend the money for a crew to stop in Sedona. So as a concession to me they’d pay my travel expenses for a three-day shoot in LA. Okay, that could be fun. I’d get my wife to take a break, we’d get a room at the “W” eat at some of LA’s finest, and while they poked their camera in the nooks and crannies of my life at least my wife could get a peek-a-boo at some Hollywood glamour.
The problem was they totally limited my expense account to $600. Three days plus transport back and forth.
Forget about it. I’m not going to do it. No fame or fortune.
There was another reason for taking a pass on this script.
I’m telling the world, or at least an anthropologist in some far off time, that I was a creature on this planet with a little known genetic disorder called pseudoxanthoma elasticum (PXE) that was diagnosed late in my life. I lost some of the sight in one of my eyes and was in danger of losing sight in the other so every few months I get a needle in my eye. Chances are I’ll be fine but you never know. I did not want this disorder to define who I am or who I was for others. This PXE chapter was a part of my story, but certainly not the whole book. Not what I want on my tombstone. Forget about the anthropologist, what about a potential employer? Would he turn me down knowing that I might have to wear bumper shoes to work?
So I said “No” for three good reasons.
Here’s the thing, two days later I said “Yes.”
I called them back and said I’d do it.
I’d like to say I did it for PXE International. There are so few of us with this disorder the profit driven ‘pharmies’ aren’t exactly racing for cures. So we have to raise our own dough to piggyback on other research. Like right now I get a shot in the eye with this stuff that was used to treat colon cancer. How’d they figure that out? Ass medicine to eye medicine? Better than water to wine. Maybe not.
But here’s really why I did it.
You see I work with young people who are in crisis. I don’t like to use the words counseling and therapy instead I say I’m a “life coach”, “ spiritual director” for young people in crisis. Parsing like that may sound Sedona-esque but that’s what I do.
It’s my pleasure and privilege to listen to the stories and struggles and revelations of young people as they begin to make their journey. I hear my own story in a lot of their stories and that can be illuminating in its own right. I can feel their feelings in their own distress and happiness and that can be exhausting and exhilarating. But I don’t get to tell my story much. At least not this one.
Now my diagnosis wasn’t easy to accept. I went through and still from time to time go through a period of grief over my slow fade to blur. And during my time of grief I remembered Shakespeare urging us who grieve to “Give sorrow words.” I think this is true and it was time to give words to this new part of my life. I know that when I speak or write my sorrows they are transformed from furious and free-floating specters to a message from the gods.
So I arrived at the LA studio in the early afternoon and then for three days I gave my sorrow words. I told them everything as if I was talking to Sigmund himself as if I was channeling every patient with whom I had ever worked. Walking, talking, feeling, around the events that began with the recognition that I was not going to see the faces of my children or grandchildren anymore. That my art studio would gather dust or be transformed into something new.
"Give sorrow words!” I took it literally and I gave all my sorrow words. I cried. I laughed. I sighed sighs too deep for words. I “raged against the dying of the light.” And when it was done, when I had come back here to Sedona, I slept a deep sleep. And I could feel the weight of this thing go. I could wake up again, not every day, but on some days as if I had wings on my soul.
I could be normal again. So on August 20, 2007 at 10PM I was featured on the Discovery Channel’s Mystery Diagnosis.
While I’m waiting for my five minutes of minifame I’ll try to turn the road rage of tourist jams on Rte 179 into a personal growth experience.
But that’s another epiphany.
*SAG/AFTRA – Screen Actor’s Guild/American Federation of Television and Radio Arts
Charles F. Harper is the Co-Founder and Principal of The Zia Transition Home, an in/outpatient recovery program for teenagers in crisis and their parents. He can be reached at firstname.lastname@example.org