VOICE! Spring '96:
Originally published in
Youth Allied By CFIDS,
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
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
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."
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!!!!!"
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.
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.
Sometimes when I'm stuck sitting here
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
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
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.