VOICE! Summer '96:

Friend or Not

By 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 tough.

But whether we like it or not, the "S" word 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 is a 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

Incognito n. A 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!"

Yoda Speak 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."

Vuja de 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! If 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 shows 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 really 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.

Vanessa Matthews

Thank you, Chelsea and Vanessa, for making this the most interactive "Voice" ever!