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
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...