VOICE! Winter '97

The Battle Within

By Heather Frese & Jaime Wellman

Originally published in Youth Allied By CFIDS, Winter 1997

I’ve 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 he’s delivering a Christmas package that was lost for many months. Maybe it’s a heart-stopping romantic gift from some secret admirer. Maybe he’s got Ed McMahon in there, ready to jump out and tell me that I’ve just won a million dollars. Okay, so that one’s highly unlikely, considering I’ve 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 find… 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 guy did 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 trip 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. I’ll 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 on, girlfriends!

The CYA/Voice Dictionary

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, when…" (Obviously the word "airport" was eluding her.) Usage: "Rebecca, you’re skipping again!"

Inventive Speaking, n, phrase. When two or more words are meshed together forming a word incomprehensible except to the PWC’s family members. Example: "Could I please have my blippers?" Translation: "Could I please have my blue slippers?"

Familial Interpretation, n, phrase. The ability of the family to understand its PWC’s vigorous gestures and inventive speaking as he/she struggles to communicate during moments of brainfog or skipping.

The Voice Lettitorial: The Battle Within

By Jaime Wellman, 16, sick since August of 1995

When I first started to get sick, a very 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 myself.

After coming to the conclusion that "yes, I 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, I’m not sure that I’ve totally accepted it yet.

I used to think that it wasn’t fair that 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."

Don’t get me wrong, I do not like being sick, and I do not want to be sick. That’s 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 that "long, hard battle" in front of me, I already know that in the end, I am the one who will come out victorious.