VOICE! Winter '96:

I'm Not Alone

By Heather Frese & Angela Fowler

Originally published in Youth Allied By CFIDS, Wrinter 1996

Greetings from Voiceland, everyone! It's great to be here in Youth Allied By CFIDS. For those of you who didn't get CYO News, here's a quick recap of what the "Voice" column is all about. If you have CFIDS, it's just in the handbook that certain things are going to get under your skin and bug you like crazy. Doctors, teachers, parents; some people are just imbeciles. Add that to the frustrations of a limited lifestyle and sometimes you can simmer to a boil. That's when I want you to pick up a pen/typewriter/keyboard and send me a letter. I've always found writing to be very therapeutic, so I figured, hey, share the joy. So send me lots of letters!

Anyway, before we get to the usual Voiceletter, I want to toss off a few of the many definitions that have been rattling around my head for a while. Some of them came up during pen pal chats and others are just the offspring of my overactive imagination.

The CYA/Voice Dictionary

Decision Crisis n. The way you feel when your mother asks if you want chicken or fish for dinner and it's like the fate of the free world hangs on your answer. Your brain frantically hops back and forth, chicken-fish, chicken-fish, chicken-fish, until finally you break and scream, "I DON'T KNOW!!!" Example: In response to your mom's question about dinner, you calmly and rationally say, "I am having a decision crisis now, please proceed without me."

Flatback v. After the expenditure of energy, this is the state of total flat-on-your-back rest you must have. Example: "Oh, I'll be just fine if I flatback for a couple of hours."

PWOC abbr., n. (Pee'-wok, like those fluffy little Star Wars guys) Person WithOut CFIDS: Those disgustingly healthy people who have never experienced even a stuffy nose yet feel qualified to comment on our state of health. Example: "That teacher who told me 'just push yourself and you'll feel better' is such a classic PWOC." Note: this term can also be used in a derogatory way when muttered under the breath or yelled loudly. Nobody outside the CFIDS community will get it. Example: You are going through the mall in your wheelchair and notice some uggo people staring rudely. Either mutter or yell, "What are you looking at, you freakin' PWOCs???"

Our Voiceletter comes from my own Buckeye State; thanks for the input, Angie!

VOICELETTER!

By Angela Fowler

Dear Heather,

I'm 15 years old and I have CFS. I really enjoy the "Voice" column. I decided that I wanted to do a little spiritual spring cleaning for myself -so here goes.

Well, it all started two years ago when I started getting strep throat almost every month. I would have severe headaches that would bring tears to my eyes. My glands were swollen and extremely tender and my muscles felt as if someone was taking a knife to them. And most of all, my mind was wandering - I was confused and suffered from memory loss. I would be at school trying to remember where my locker was, what class I had next and how to spell my name. My energy ceased to exist. I couldn't get up the strength to walk or feed myself.

I went to doctor after doctor, had test after test. I missed many days of school. I lost many of my friends "because I wasn't any fun." I was told I had psychological problems and that I was a hypochondriac. I would cry for hours, at times in the presence of doctors. I felt as if the world was against me. No one would listen. I felt so scared and alone. But mostly I felt sick.

I couldn't keep up at school. I missed day after day - I was late all the time because I would wake up with such severe headaches I simply could not get out of bed. The school even set up court dates because they considered me to be an "unruly child." I was even suspended for being tardy all the time. Everything was happening all at once. I felt like I was in a room with no windows or doors and it was slowly closing in on me.

I finally found a doctor (an allergist) who simply told me, "You have CFS." I was really relieved in a sense, but I knew the road ahead of me wouldn't be easy. I spoke to others about it. I contacted every organization that I could. I tried to make the best of a painful situation.

I still don't feel well enough to do much. I don't go to parties, football games or those wonderful high school dances. Hey, I don't even feel like going to the mall or talking on the phone! But I'll have my good days and I'll have my bad ones.

The school is still being difficult. I've already missed 14 days this year. I've lost my friends, and I've lost what are supposed to be the greatest years of my life. I'm hurt and I'm angry. But you know, I also think I've gained something. I found a strength in me that keeps me assured that I'm not alone and that I can beat this thing.

But, I am so thrilled to have found an organization that really cares. You have put in a feeling - a warm, genuine feeling that sure hasn't been there for an awful long time. Thank you for caring so much.