VOICE! Winter '97
The Battle Within
By Heather Frese & Jaime Wellman
Originally published in Youth Allied By
CFIDS, Winter 1997
Iíve always had a love-hate relationship with the FedEx guy.
Every time I see that van pull into our driveway, images start flying into my
head. Maybe heís delivering a Christmas package that was lost for many months.
Maybe itís a heart-stopping romantic gift from some secret admirer. Maybe heís
got Ed McMahon in there, ready to jump out and tell me that Iíve just won a
million dollars. Okay, so that oneís highly unlikely, considering Iíve never
entered his sweepstakes. But you never know, it could happen. So with all these
hopes in my heart, I eagerly open the door to findÖ another box of mail-order
medicine. With a snarl I sign the delivery slip, and grump back into my bedroom
muttering about how nothing exciting ever happens to me.
A few weeks ago, however, my FedEx
not disappoint. I admired the startlingly slim package he brought and marveled
about what it could hold; after all, it was a bit slender for those dozen
long-stemmed roses in their gold box with the big shiny bow. Finally, I tore the
envelope open and beheld with amazement its contents. It was not medicine. It
was not car parts for my dad. It was not surfing paraphernalia for my brother or
teacher stuff for my mom. It was two tickets to a warm and exotic post-Christmas
location where, best of all, I would get to see my friends. Rest assured, I did
not snarl at the FedEx guy that day.
As I write, I look forward to that
anxiously, but also with the knowledge that there will be an inevitable letdown
when I return home. Alone again, after a week of feeling the normalcy of friends
surrounding me, I will once more be forced to look within myself. Iíll have to
find the strength to strive on, in there somewhere, along with the hope of
laughter and light to come. This struggle is one we all face sometime, and is
expressed beautifully by our lettitorialist du jour, Jaime
Wellman in "The Battle Within."
But first, while Jaime was searching
inside, Catherine Matheny tossed the hamster onto the wheel of her mind and came
up with a definition about the things she puts inside, which would be pills.
Also, Rebecca and Katie Moore demonstrated sisterly telepathy while writing
about communication, CFIDS-style. Thanks Cat, Jaime, Rebecca and Katie, and roll
Pill Sin, n. Flagrantly disobeying your medications. For
example, by staying up until 5 a.m. after taking melatonin and several other
sleep-inducing drugs, you commit pill sin.
Skipping, n. When a person with CFIDS gets stuck on one word
or phrase, much like a skipping record repeats a word or a measure of music over
and over. Skipping allows the person with CFIDS (PWC) to pause without an
embarrassing silence, simply repeating the last word or phrase over and over,
while the brain rests and develops the rest of the thought he/she is trying to
express. Example: Rebecca preparing for a trip: "But when, when, when we, when
we, when we get to, whenÖ" (Obviously the word "airport" was eluding her.)
Usage: "Rebecca, youíre skipping again!"
Inventive Speaking, n, phrase. When two or more words are meshed
together forming a word incomprehensible except to the PWCís family members.
Example: "Could I please have my blippers?" Translation: "Could I please have my
Familial Interpretation, n, phrase. The ability of the family to understand
its PWCís vigorous gestures and inventive speaking as he/she struggles to
communicate during moments of brainfog or skipping.
The Voice Lettitorial: The Battle
By Jaime Wellman, 16, sick since August
When I first started to get sick, a
strange sensation set in, one which I cannot describe easily, yet one I know all
of you can sympathize with. Outside of the feeling of being isolated because I
had recently moved, I was also beginning to acquire a different type of
isolation. It was an isolation that was setting me apart from even
After coming to the conclusion that
have a chronic illness," something else arose. It was almost like someone had
just recruited me and I was now in for a long, hard battle. My coming to terms
with the realization that "yes, this is happening, and yes, it is happening to
me" did not happen quickly. In fact, Iím not sure that Iíve totally accepted it
I used to think that it wasnít fair
something like this had to happen to me of all people. Now I have come to a
point where I have realized that I was "the best person for the job."
Donít get me wrong, I do not like being
sick, and I do not want to be sick. Thatís not it at all. What I am saying is
that since I do have this illness, I am the best person for it. This is because
I am one of those people that will make the best out of it and turn it around
and MAKE good come out of it.
Even though I know that I still have
"long, hard battle" in front of me, I already know that in the end, I am the one
who will come out victorious.