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Introduction

 Chuck was waiting for me at the bar in a little bistro called “The Ketch.”  I'd never been there before, but Chuck, my graphic artist and all around creative associate, had given me directions and I'd managed to follow them without getting screwed up. So here I was, and there he was, sitting at the bar in “The Ketch.”

People were moving all around Lexington for the first time in three days.  Ten inches of snow had dropped three days ago and, in Lexington, Kentucky, ten inches of snow might as well be a nuclear holocaust. Everything comes to a grinding halt. But now the roads were scraped and most people with shovels had cleared paths to their autos, and as a result the world was at work again. And so we could get together at the bar in “The Ketch,” where the brews are cold and the seafood is ... well, the seafood is probably good. I don't know. I ordered ribs.

My second napkin was about exhausted when Chuck asked, “So, what are we working on?”

“A book called FLAKE,” I said.

“No doubt a novel about a social indigent,” Chuck said.

“Wrong. A real memoir about my life (so far) with psoriasis.”

“Sor‑righ‑a‑what?”

“Psoriasis. A pain in the dermis chronic skin condition. Look.” I showed him a lesion on my forearm, another on my calf. Found a nice nickle-size flake just begging to bust loose on my calf lesion, so peeled it off and gave Chuck a good close look, much to his disgust.

“Cheez!” Chuck exclaimed. “Is it contagious?”

“No. You're safe and it appears to be mine for life.”

Relieved, Chuck turned his attention back to his blackened redfish. Between mouthfuls he managed to utter: “So what's the book about? I mean, what's the purpose?” Already I could tell Chuck was alarmed by what I might ask him to illustrate.

“There's no cure for this. You got it, you live with it. I'm lucky, Chuck.  My psoriasis didn't manifest until I was in my late thirties. There are children out there who manifest at birth. There are a few million psoriatics who only manifest mildly — I mean little lesions on their skin that come and go with the seasons and are a minor irritation. But there are others who, like me, or worse than me, suffer outrageously with 70% or more of their skin effected.”

“Oh, I get it,” Chuck said. “We're on a mission from God. Where are your sun glasses and cigarettes? I got mine!”

“No, Chuck,” I said, sighing. “The worst thing about psoriasis isn't what it does to your skin, it's what it does to your self-esteem and your attitude. There was an advertisement years ago in which the phrase was coined, 'the heartbreak of psoriasis'.  That was the first thing I thought about when I was diagnosed psoriatic. 

“But, you know what, Chuck?  Psoriasis hasn't broken my heart.  It's been irritating and at times painful, and has cost me a lot of money, but because of a couple dozen friends, and my family, I've learned not to carry it around like some humiliation.”

Chuck paused from shoveling seafood into his mouth long enough to ask, “How about your love life?”

I just grinned (Chuck has this uncanny sense of my priorities) and said, “Chuck, read the manuscript.”

“So this is going to be a joke book?” Chuck asked.

“No. It's going to be a ‘memoir’ in the true sense of that term. It's going to talk about how psoriasis has affected me and what I've done about it.”

“You're on the verge of a cure, then?”

“No. No cures. Not even a prescription. This book is purely anecdotal.  It's just my story, but I think other psoriatics who read my book will find connections, and that's like holding hands. That's friendship. That's familiarity—”

“So we want to establish this fraternity of psoriatics? Hmmm.  Graphically we need to come up with a park-like setting—”

“No, Chuck. That's not what we need—”

“—and then be thinking about bumper stickers and everything.”  

No bumper stickers, folks. No park-like setting. And again, no cure, not even a prescription. There are people out there who think I am a fool because I refuse to subject myself to some of the systemic treatments known to help psoriasis.  (I refuse to endanger other organs in an attempt to help my skin — but that's admittedly a very personal choice.)

In 1993, I spent six months undergoing thrice weekly ultraviolet light treatments. This is like patronizing a tanning salon except that to do so to get a tan costs about $15 a session and to do so through a dermatologist (I'll often refer to them as “derms” in this text) costs considerably more. These treatments ended with my being burned to a crisp and my derm concluding “this isn't working.”

The weekend after this prognosis I was cloistered with in‑laws in a lovely lake‑front house in south‑central Kentucky. The wine and the beer were flowing freely. One of my cousins‑in‑law was a derm. “Why can't you wise guys cure psoriasis?” I asked at one point.

“We can,” he said. He proceeded to tell me about one client of his, a young man in his early thirties, who was about 50% affected upon his first visit but, through a regimen of oral retinoids, light treatments and tar applications was “completely cleared.”

“How long has he been cleared?” I asked.

“About a year now,” my young in-law said, oozing pride.

“You'll be back to the drawing board in six months,” I said, “and hopefully not looking for a liver transplant.”

I divorced my wife and lost that set of in-laws before I could learn if my prediction was true. But I'd bet money that young man has flaked again since his derm and I had this conversation. No current treatment of psoriasis is a “cure.” My in-law derm was merely being argumentative.

The disease is brilliantly resilient, noted for its ability to persist regardless of any specific treatment regimen. Sure, some things work for awhile. But until there is a cure — probably at the genetic level — psoriatics will continue to be psoriatics.

Now I've heard stories — we've all heard stories — about psoriasis in complete remission (if I can borrow that term from the oncologists). My favorite story is about the fellow who gave up drinking, started going to church regularly, and never flaked again.

I don't doubt for a moment that this is a possibility. Something about the way we live triggers our psoriasis. The lesions on our skin wax and wane based on something. Maybe, if you can figure out just what the triggers are, avoid them altogether, you can beat the condition, more or less permanently avoid flaking. Would you change your career to stop flaking? Maybe.

I listen to these success stories, like you do, and can't help but dig beneath the obvious. The guy who stopped drinking probably fell in love and got married to the woman of his dreams. The old codger who flaked through thirty years of a nasty job probably retired and started whittling on his porch every day. Find a lover, lose the boss. Who knows just what triggers and UNtriggers our psoriasis?

Fact of the matter seems to me: if you have a proclivity to flake, sooner or later you're going to flake. You might be able to postpone it; undoubtedly you can find a regimen to control it — for awhile — but if you're psoriatic you're going to flake. This book is for you.   

I finally found a derm with the guts to tell me I was into psoriasis for the long haul. “Fool an insurance company with a prescription plan into accepting you,” he said. “‘Cause you're gonna make some pharmacists wealthy over the course of your lifetime.” He was right and my contribution to the gross pharmaceutical product gets more impressive every year.

I'm not a derm and this is not a book-of‑cures. As I sit here writing this, I'm scratching lesions, flaking all over the azure blue carpet in my office and wondering if I've got a new bag for the vacuum cleaner. Don't read this book expecting handy advice for how to deal with your psoriasis. I'll tell you about some of the things I've tried, but that's not to imply they'd work for you — or even that you should try them.

Chuck finally asked me, “Why are we doing this book?” All my pontificating up to that point hadn't quite answered that question for him. 

I licked my fingers, turned a third nap­kin into confetti,  smacked my lips, sighed, and said, “The derms tell us we're lucky. It's rarely a fatal condition. It's incurable — so far — but we survive in spite of it. We can grin and tell our families and friends that flaking is unfortunate but not deadly. We can wear long-sleeve shirts on the beach. We can either avoid Caribbean vacations altogether or go on them khaki clad and appearing eccentrically overdressed. We don't threaten the human race with a contagious condition. We make love as passionately as possible. As long as there are vacuum cleaners we can clean up after ourselves.

“I don't want to form a club or a union, Chuck ... but I want somebody who flakes to read this book and go ‘Whew! It's nice to hear from a simpatico!’”

Chuck said, “We need to think about Cabbage Patch Dolls™, too.”

I said, “What?”

“Yeah. Let's do dolls with skin lesions and sell them to the dermatologists....”


 

I settled the bill and left “The Ketch.” Nice place. Good ribs. Probably good seafood, too. I'll try it next time.

 

Cabbage Patch Dolls™?

 

I don't know.

●●●●●

Ed’s Postscript (11/25/2007):  My friend Chuck did design the book, Flake: Confessions of a Psoriatic, and regrettably, very little of that design will transpose to this on-line version with updates.  However, the original “logo” for “FlakeHQ” was Chuck’s responsibility because it was on the cover of the book. 

I appended the “HQ” about five months after Chuck and I had lunch at The Ketch, after the book had been printed, advertised in the National Psoriasis Foundation’s magazine, and when I launched FlakeHQ.com.

Flake: Confessions of a Psoriatic went on sale in October, 1996, and sold a couple thousand copies before I stopped sales on April 30, 2005. Sales were bolstered at the onset by a favorable review of the book by the National Psoriasis Foundation in October, 1996.  (You can read excerpts from the book review by clicking here.)

I have always been a sporadic diary and journal keeper, and most of the chapters in Flake derived from journal entries I wrote between 1991 and 1994. This was right after my psoriasis was correctly diagnosed (finally) and during its explosive spread from under 5% coverage (scalp and face) to over 30% coverage (all of me). Toward the end of this period I was also feeling the first symptoms of psoriatic arthritis.

In 1994, at age 43, my second marriage ended badly (I was left sitting in a two bedroom condo with only a bed — everything else had been removed while I was on a business trip). The prospect of trying to invent a new relationship with another woman — the first relationship I’d attempt from scratch as a flaming psoriatic — was most depressing. I buried myself in my office and busied myself turning journal entries into book parts. I felt at the time my psoriasis was a significant hurdle to be overcome before I could date again. Writing about it, editing what I’d previously written about it, was therapeutic and, in a modest way, empowering.

I started work on the companion web site — today’s FlakeHQ.com — before I held a finished copy of Confessions in my hands. I approached the web challenge with two goals in mind: promote the book and build a community of folks with psoriasis who appreciated humor.

Why did Flake: Confessions of a Psoriatic go out of print in 2005? I realized that psoriatics today occupy a different world than I had occupied in the early 1990s. Most of the truly EFFECTIVE drugs in use today to combat psoriasis were approved for sale in the late 1990s or after 2000. It’s what Confessions doesn’t say that, I felt, made its omissions dangerous. The following reproduction of Flake Confessions is only palatable in my mind because I will, in my postscripts, describe or hyperlink to descriptions of what the chapters omit . –Ed

Contents of Flake: Confessions...

www.flakehq.com
 
©2008 Ed Dewke