VOICE! Spring '96:

Making Contact

By Heather Frese

Originally published in Youth Allied By CFIDS, Spring 1996

Hello everyone! Welcome to "Voice!," the column for you, by you, about you. Here's the deal: you send me letters and I print `em. Write about whatever you want pertaining to the lovely experience we all share called CFIDS. Since this is being written before I've had a chance to get feedback on the column I wrote for the Winter issue, the Voiceletter will be taking a short leave of absence. Don't worry, I expect it to make a strong comeback in the next YABC.

That makes this column a jumbly mix of definitions, editorials and anything else that may pop into my head. Scary, huh? Let's start off with the continuation of the CYA/Voice Dictionary, now a regular feature, and glide into the editorial part later.

The CYA/Voice Dictionary

EQ abbr., n. Energy Quotients: the units persons with CFIDS (PWCs) use to measure the amount of energy in their bodies at any given time. EQs can be eaten up quickly by activity, stored for future use by flatbacking (see "CYA/Voice" dictionary in the Winter newsletter), or bottom out suddenly, leaving you in a state I call "Unplugged" (totally disconnected from any energy source). Example: "I stored up a week's worth of EQs just to walk through this store, and now I can feel them dripping out of my body one by one."

Bad Stick n. Anyone who takes daily shots has experienced this phenomenon. You can go for weeks sticking the needle in your leg/arm/behind with little or no pain and then suddenly, WHAMMO, one day it hurts like the devil for no known reason. Example: "Ouch, bad stick, BAD STICK!!!!!"

Shootin' Up v. An alternative way of saying that you are doing your shots right now. If it's a particularly Bad Stick you can take your mind off it by singing to the tune of "Breaking Up is Hard to Do." (It's an oldie; ask your parents.) Just replace "Breaking Up" with "Shootin' Up." Example: "Get away from me, I'm shootin' up!" Note: you might want to be careful to whom you say this. It can have negative connotations if you don't specify that you're shootin' up with B12 and not something illegal.

VOICELETTER!

By Heather Frese

This column just doesn't feel complete without some kind of YPWC input, so I thought I'd write my own combination letter/editorial. Call it a lettitorial. It has a title and everything. See what happens when you give me a keyboard and turn me loose? Okay, on with the show.

Making Contact

Sometimes when I'm stuck sitting here in my room all winter I start to feel like some sort of alien, surrounded by people who are nice, but not from my home planet. In my case, PLANET CFIDS. I begin to wonder if somewhere out there a great Mothership lies waiting, stuffed to the gills with PWCs like me who telepathically understand other PWCs' feelings without their having to say a word.

So, I start trying to phone home, by writing letters and making calls, and I discover that I am not alone. Still, everyone is so far away. Then out of the clear blue sky drops a girl, who will be known only as Ernie, into my home and my life forever. We discover the telepathic bond usually reserved for twins and psychics and resolve to make contact more often.

Sharing a brain is a bummer if you live a couple hundred light years from one another. Soon I don my jet pack and drop into Ernie's home and daily life. There I discover more citizens of Planet CFIDS, all of whom I bond to instantly like Krazy Glue. We talk, laugh, have deep discussions, go out, or sometimes just lie on the floor together. We find that our disease is just a starting point to a common bond and a deeper kinship.

My next goal is to get everyone together on the Mothership and have a big old party (in our pajamas, of course). Now that I'm back in my room some loneliness lingers, but I have happy memories, future plans and good friends. I know that I'll have several someones to reach out to when the isolation gets to be too much. Making Contact is one of the best things I've ever done, and has proven to me that with friends beside us, reaching for the stars is entirely within our grasp.