the words spoken
on May 12th 2005, in Burlington VT.
(Thinking) Maybe I need Gil Grissum (portrayed by Billy Peterson) from
CSI to figure out what I’ve got, ‘cause I’ve been
Living with an I C I (an Invisible Chronic Illness) for Fifteen years
and THAT is a CRIME!
Grissum, “I’m Sick and Tired of Feeling Sick and Tired.”
Grissum would then quote me something like, “Dietrich Bonhoeffer
once said, “Who am I? They…tell me I bore the days of misfortune
equably, smilingly, proudly, like one accustomed to win.
Am I then really that which other men tell of?
Or am I only what I myself know of myself?
Restless and longing and sick, like a bird in a cage.”
A Bird? Yes, that’s exactly what I feel like Grissum. Only, I
also feel like a Guinea Pig/lab rat that’s been through many laboratory
tests. “Can you help me solve this crime of inhumanity?”
“Why is solving this crime so important to you?”, he questioned
Well Grissum, You guys at CSI solve so many crimes every week, I figured
you’d be MY MAN. I replied.
And besides you know that damage to the body causes a lessening of the
self, which is further magnified by debasement by others.
I have an ICI (Invisible Chronic Illness) and no one can see it,
nor identify it. So, they deny it and that just hurts me and makes me
angry. It hurts all of us who have an ICI.
You would not believe it, but, our doctors, our families, our friends,
none of them see it, even you don’t see it, do you, Grissum?”
“Tonia, I can see it in your eyes. I can tell by the way you walk,
talk, and even hold yourself.”
Then, Grissum hits me with another quote:
-Henrietta Aladjem once said, “I want to be well. I’m willing
to fight, but…” “But what?” I asked. “But
I must know what I’m fighting. I must have a name for this illness
Grissum, it doesn’t have a name….it is undefined, doctors
say it could be this, or it could be that. I could go on and on with
you about my own myriad of nonmeasurable symptoms, and the diagnostic
dilemmas I’ve been put through by medical doctors, over so many
years, but I won’t, because quite frankly it makes me sick to
I know you don’t need the info. anyway, because you’re a
“Thanks for the compliment, Tonia. But, there is one question
I do have.”, Grissum said.
“Do You demonstrate symptoms of “Battle Fatigue”?
You bet!, I said. Many times Everyday! As you know our country has been
at war, is, and will be for years.
This will be my fifteenth year Grissum, in my personal battle with CFIDS,
Fibromyalgia, an undefined connective tissue disorder or whatever names
you want to give it!
“Just remember this then,” Grissum said, (I’m thinking
to myself, God, please, not another quote already, this is overload
for my brain having this Invisible Chronic Illness)
He went on:
“-Dennis Potter once said, “It could be said that my illness,
although my enemy, is also my ally, my ally in that it removes me from
the hustle and bustle and makes me redefine myself. It makes me introspective.”
Yeah, it has surely done that Grissum. The fact still remains though
that there isn’t one mainstream medical doctor, who can give me
the comfort, compassion, or healing, or even “do no harm”,
as their oath says, and there is something intrinsically wrong with
that don’t you agree?
“Sure.” He said. “Don’t worry. I’ll solve
this case with my CSI team and we won’t need the CDC, the MD’s,
or anyone else who’s been hanging onto the bureaucratic red tape
for all these years!”
The next thing he said to me was, well…, yet another quote!
“Remember Tonia, -Rose Kennedy once said, “It doesn’t
matter what happens to you in life, it only matters how you cope with
Thanks Grissum. You’re the greatest! Too bad you’re just
a TV guy. Too bad you are MORE REAL than MY ILLNESS is to a lot of people.
“Yeah, that is a shame. It was nice chatting with you.”
He said as he left. Before my ICI, I was a thriving Nutritionist with
my own company. Before my ICI, I dreamed up an invention.
I was awarded a US Patent on February 24th of this year.
Because I have an ICI, I can do nothing with my Patent on my own. So,
I have an Agent, and HE IS REAL. His name is Richard Wantz, in case
anyone wants to know.
Now, I can get on with the little parts of everyday life that I have
left, like trying to maintain my remaining health and sanity, trying
to stay married to my wonderful husband and taking care of our two dwarf
house rabbits, Blackberry and Vincent.
A simple existence, I’d say. But, how many of you would you like
to give up your livelihood and trade places with me and have this illness?
life could be worse. I could have only one eye or leg, and I am very
fortunate to have all I do have…but those philosophies do not
solve the disease, do not get rid of the pain, the tears, the frustrations,
or the heartaches that come with the problems.My name is still Tonia,
but I am “redefined”, as a former Nutritionist, an Inventor,
still having an incurable ICI for fifteen years. If it weren’t
for my strong Catholic faith, I would not be here today.
I implore you medical physicians and politicians to get off your duffs
and do what it is you are paid by us to do. Yes, I do pay taxes and
I do vote like healthy people, even if it is absentee. YOU do whatever
it takes! Work with Medical Doctors of other countries, even where medicine
is practiced differently than what you are accustomed to. Get us the
drugs we need to be fully functioning members of society once again.
You owe it to us!
We’ve had to change our lives for what seems like an eternity,
and now, it is your turn to make the wheels turn faster than ever before,
for a cure! Thank you.