From The Sidelines

(excerpted from the Fall 1998 issue of the WI - CFS Association "Lifeline" newsletter)

by Chris Kraus

Ah, summertime! This is the time of year when I can actually figure out how to work my own microwave. I know, without thinking about it, where we keep the coffee cups. I can even participate in some exercise-like activities. I can sit on the back of our tandem bike, not working very hard, as my husband pedals us along miles of wonderful bike trails.

Sometimes, when I’m feeling quite well, notions come to me that are uncommon the rest of the year—ideas about how my time should best be spent. I feel like a kid being asked, "What do you want to be when you grow up?"

When I was a little kid, I was insanely jealous (okay, that may be a bit strong), rather "somewhat envious" of kids who had an obvious gift. One girl could sing like an angel and got to do all the solos in our class programs. I was asked to sing "very softly" in the chorus. One kid could ice skate backwards and do figure 8s, and another boy was a very accomplished whistler. I tried to be good at something, at anything.

So I went through phases. I got a book on ventriloquism, and for a while thought maybe that was the ticket. But even after months of practice with a pathetic little sock puppet, I didn’t show the slightest knack for it. I also remember spending many, many recesses practicing running fast, but I could barely beat my own little sister. A few talents eventually emerged on which I was complimented, but they seemed so obscure. For instance, I could walk for a very long time on stilts. And one time, my dad said that of all the kids, I was the healthiest. Not much to hang my hat on. (Of course, now being the healthiest—well, wouldn’t that be wonderful!)

When I was a teen, I was sure I’d be a drummer in a band. Unfortunately, I never took a lesson or worked at anything musical. As a young adult, I thought in terms of jobs that I might one day have. I thought I’d make a good criminal psychic (but I’m not psychic.) I also thought I’d be terrific at designing sets for movies, but Wisconsin is not exactly the Mecca of Hollywood movie work. These ambitions may not have been practical, but the idea of no limits and "who knows, maybe some day" were fun and free.

Now, post-CFS, I don’t think in terms of jobs anymore. With "well" time so precious, I try to honor the "special talent" part of me by exploring how I can best put me to use. That unique combination of having a talent, and having the tools or environment or circumstances come together so the talent can be used is so rare, especially with CFSers. Something enjoyable, something that makes me feel the most like me is special.

I have been fortunate. I went through college as an art major but then didn’t do much with it for the next 20 years or so. Now I have rediscovered my love of art. I do silk screening which is something I learned about six years ago (with a CFS brain, no less), and I’ve been loving it ever since. Weeks go by when I can’t do a thing, but then, when I feel better, the talent is there to inspire me and encourage me like an old friend, ready to take my hand and go for a walk as soon as I’m able.

I have lost so much, made so many compromises and had so many lost days that to find a gift within myself that enriches my life makes me so grateful. Oh, by the way, I think I could still do a pretty mean job with a pair of stilts.

Okay, so far we CFSers have a secret sign (the big "M"), a secret song ("I get knocked down, but I get up again. They’re never gonna keep me down") and our motto ("Maintain). Now we need to recruit new members. I’m thinking we just need to post signs with the top 10 reasons why most of use became CFSers, and there will be a stampede to join the ranks of MAC (Maintainers’ Anonymous Club).

Here’s the Top 10 List - why people find CFS so enjoyable:

#12 - I know I said top ten list, and this is actually #12, but most of the time these little details will slip right by without you even noticing. What a pleasure not to have the brain power that so burdens most of society.

#11 - Become a brilliant conversationalist. When people ask, "How Are You?", you can really go to town and hold up your end of the conversation.

#10 - You will become an enigma, a mystery to yourself and others. You will have the thrills and chills of venturing into unknown territory. From day to day and year to year, your symptoms will change, wax and wane, come and go, and best of all, almost no one will understand.

#9 - Think of all the money you’ll save because now going shopping is something you’ll rarely feel good enough to do.

#8 - Even if you are only in your forties, you can grab the really great parking spots because you get to use your handicap sticker.

#7 - Your vocabulary skills will improve as you learn words like "gastroenterology" and "neuroendocrine."

#6 - You get to sleep in whenever you want because you no longer have a job to go to.

#5 - You’ll know where every bubbler and bathroom is in every medical facility in the county.

#4 - You don’t have to worry in the middle of the night about missing something important because chances are you’ll be awake anyway.

#3 - You will be able to relate to older people. Your body and brain already feel 80 years old so it won’t be any big transition into old age or even senility.

#2 - You will never have to hassle with answering machines because all of your fellow CFSers are always at home. They may be too sick to talk, but at least you know where they are.

#1 - In case you ever climb into a tower and start taking out people in white lab coats, you have a built-in insanity defense. Doctors have been telling you for years that you’re crazy.

Until next time, I’ll be watching and sometimes cheering from the sidelines.