VOICE! Summer '96:
Friend or Not
Heather Frese, Chelsea Berns & Vanessa Matthews
Originally published in Youth Allied By CFIDS, Summer 1996
Well folks, it's about that time of year
when the dreaded "S" word begins to surface: School. Whether you are
part-time, full-time, homeschooled, attempting one course or just too sick to
think about it, school is always there, looming in the back corners of your
mind, ready to cause stress. Whether it's brain fog, friends who misunderstand
or a body just too sick to keep up, chronic fatigue and immune dysfunction
syndrome (CFIDS) is sure to make "The Best Years Of Your Life" really darn
But whether we like it or not, the
sharply brings into focus our interaction with our peers and society at large.
We find ourselves face to face with legions of shiny, healthy people, seemingly
without a care in the world. For them missing cheerleading practice or having a
bad hair day is a crisis, so we begin to disassociate from them and search for
those who understand. In a way this is a positive thing - look at all the things
young persons with CFIDS (YPWCs) can accomplish when we put our heads together.
However, we also start to realize that some of those shiny, healthy people may
have a lot in common with us, too.
No one is problem-free. I think that
big step in understanding and accepting the PWOC (person without CFIDS). It's
important to find that sense of balance, which is why I am so pleased to present
this month's Voiceletter by Vanessa Matthews. First things first, however:
here's the "CYA/Voice Dictionary," chock-full of school/brain related
definitions, all submitted by Chelsea Berns. Enjoy!
The CYA/Voice Dictionary
cognitive day that is not so neato. When your brain is incognito you may find
yourself saying things like, "Gee, that bright is really light," or get stumped
spelling your own name. Example: While throwing your socks in the toilet and
trying to flush the clothes hamper, you smack yourself on the head and say,
"Man, am I incognito today!"
n. This is
the phenomenon that occurs when you are tired and speak strangely, kind of like
Yoda from Star Wars. Example 1: "Chelsea, I'm sure what you are saying is very
wise, if only I knew what you were talking about!" Example 2 (from Heather): I
wanted to say, "Mom, could you please put up the barrier so the dog can't get
into my pink room?" What came out was, "pink dog room stopper." Dad has further
elaborated to tell me at times, "Heather, you're speaking Yodish."
n. The feeling
that you have never done any of this before (opposite of deja vu) - used when
trying to remember how to do the simplest things during brain fog.
The VoiceLetter: Friend or Not
Friend or not - that is the question!
you're like me, it's really easy to feel bad about other people even when it's
not your fault. Being ditched isn't fun. Hearing, "but it's just so hard to hang
around you," hurts. When people accuse you of being a snob, when you're really
too tired to talk, stinks. People telling you that you get special privileges
that you don't deserve is awful. Being told that you are lazy reeks. But through
it all I think we just have to remember two things.
1. When things like this happen, it
that we are trying to associate with people. It shows that we are trying hard to
stick by our friends and not let CFIDS get in the way. It shows that we don't
want to be secluded, we want to stay out in the world. For most CFIDS patients
remaining a part of the world is a major feat and takes incredible bravery.
2. While these instances say only good
things about us, it points out the worst in others. It shows their outright
ignorance and total inability to understand. It shows they aren't doing their
part to be a friend. It shows that you don't need them as a friend.
In the end, even though these things
hurt, I think we should be thankful that we know who not to associate with
unless we want to get hurt. Life is full of important lessons - I think
remembering the two rules and using them is a very valuable one.
Thank you, Chelsea and Vanessa, for
making this the
most interactive "Voice" ever!