Introduction

There are two kinds of people.
Those who’ve gotten sick and those who will.
The odds of surviving the show without a substantial medical setback along the way are slim to none. Disease is business. Most of us will get cancer or have a coronary, almost as if that makes it easier. Let’s see a show of hands if you know what I’m talking about. Cancers gets one-out-of-three right out of the gate. If you missed the boat, relax, there’s more than enough in Pandora’s box for us all. There’s so much we don’t know. What’s clear however is that it’s a hard world. Nobody ever said it would be easy and nobody ever said it would be fair.
What I’ve got is an immune dysfunction syndrome about dead center on the continuum between Multiple Sclerosis and HIV. A syndrome is a collection of symptoms that is consistent among a broad base of the population with no known cause or cure. It can’t be a disease yet because researchers haven’t pinned it down. Around here it’s mostly called chronic fatigue syndrome, but I hate that. I hate it because a majority of the medical community has determined that CFS is solely the mass fabrication of hypochondriacs and malingerers who’ve been influenced by an aggressive media. Goaded by insurance companies, they profess to think that hundreds of thousands of Americans have created this level of infirmity as a form of psychiatric ploy, and a devious plot to waste valuable medical time and resources. As a result, the road to recovery is booby-trapped with red-flags and road blocks and terribly ill people are made far worse and that stinks.
I was first diagnosed with a post-viral syndrome that could have been activated Epstein Barr or Chronic Mononucleosis. The doctor was specifically vague. Some called it Post-Polio Syndrome, or Polio without the paralysis but not enough to warrant the attention that would deserve. In England and Japan it’s called Myalgic Encephalomyelitis, or M.E.. There are dozens of names. My favorite is Yuppie Flu. Some bristle at that name because it’s demeaning. I like it because it’s not nearly as offensive as the name chosen and because it sports cultural charm.
Many of us are no strangers to the adversity that comes with chronic illness in the family. Life is disrupted. Whether it’s MS or Fibromyalgia, Lupus or something weird from the Gulf War, it doesn’t matter, unless you die. That matters. There’s a whole bunch I wish I had understood early-on, like definitions, stages of behavior, and coping strategies, but I never expected I’d need to know any of that, because when I was first sick, acceptance didn’t exist. For those who travel the same road, if I could write this in giant line drawings with a big magic marker I would. It screams to be remedial. And, I guess the bottom line is that if I can make a difference to someone at the beginning of their journey, there’s a reward somewhere and I’ve gotten the warm fuzzy shit out of the way. There.
This book is a personal account. There’s no other way to tell the story. It’s about who I was and the issues and events that shaped my character. It’s about how I got really sick and the circumstances that lead up to that. It’s about the epic duration and endless scourge of malaise that is disease and how those difficulties have been reconciled and even resolved. I was born at the height of the post war baby boom and while there’s no intention of this being a ‘coming-of-age boomer thing’, I do follow that time line and ‘boomer’ history is a clear influence. The first two chapters are biographical from when I was healthy. They are a personal history to put the rest in perspective. Whether or not you share my attitudes and philosophies is irrelevant. What’s clear however is that what happened to me was a direct result of who I was, socially, culturally, politically, and emotionally. Hindsight is 20/20, cart before the horse and all that. Medical professionals will dismiss this text immediately because it’s anecdotal while others will grasp it’s importance because it comes from my heart. I can’t change either one.
And finally, this is a book about that mysterious illness called chronic fatigue syndrome. Did I mention how I hate that name? I hate saying it and I hate writing it. It stinks. Beyond the personal experience is a history of the disease as we know it, a look at the science or lack of science, the cultural progression, the politics and the personality disorders that block the road to better health for us all. No industry is immune to egocentric jerks.  We're not in Kansas Anymore is a kiss and tell look at the medical-insurance-pharmaceutical conglomerate that rivals the legendary military-industrial-complex in power and scope. They’re so out of control that all I can be is cute, and then get on with my life. Take that. You bastards. Smooch.
And finally,... this is something I have to do. If I don’t, no one else will, and If I don’t do it now, it will never get done.
The materials collected themselves so it’s meant to be.
If I saw a shiny dime I’d pick it up and it would be my lucky day.
What’s that I see sparkling in the grass?
Our story begins...