Athletes, CFIDS, and the News

Hi, gang! This is me, your intrepid reporter. As a general rule I prefer to leave the editorializing up to you all; but the stories of Michelle Akers, Peter Marshall and, more recently, Amy Peterson, are exceptional in many ways, and I decided to throw in my two cents' worth.

(Background for any of you who may have missed it: Michelle Akers is a member of the U.S. women's Olympic soccer team, which won a gold medal at the Games in Atlanta. Peter Marshall is a British World Cup soccer player. Amy Peterson is a three-time Olympic gold medal winning speed-skater. All three have been diagnosed with chronic fatigue syndrome, and all three have made spectacular comebacks after two-year absences from their respective sports.)

These stories strike a powerful chord in all of us. When a fifteen-minute trip to the grocery store represents such an enormous investment of energy that you have to plan it carefully, weigh the possible consequences, and proceed only with caution -- well, under circumstances like those, to hear that another person with CFS has just placed first in an Olympic trial simply boggles the mind. It's as unexpected and bewildering as seeing a headline that says," Chronic Fatigue Syndrome Discovered On Mars." You shake your head, blink your eyes, and say, "What??"

And the next thought, following hard on the heels of the first, is, "Oh, no. I've had so much trouble making people understand that I truly am ill as it is. Now they're going to say, 'But Amy Peterson has CFIDS and she's an Olympic skater. Surely you can hold down a simple job.'"

And somewhere between the shock and the chagrin is the question, "How on earth does she do that?"

Well, brace yourselves, folks, because PWCs all over the world may be asking themselves those questions pretty soon. Amy Peterson has won three Olympic gold medals in speed-skating before, and rumor has it that, despite the agony of skating with CFIDS, she is skating better than ever. And if Amy wins another gold medal, you're going to see "Olympic Gold Winner Has Chronic Fatigue Syndrome" plastered on newspapers, TV news shows, and magazine covers all over the world. If it makes you nervous just to see it in cfsmail, or even USA Today, just wait until it's a front page story everywhere.

It's a dilemma. You can't help but admire Amy Peterson's courage and stamina. We, of all people, understand why she cried from sheer fatigue after she won that last race at Lake Placid. We know how she feels every day in training, pushing and pushing and trying to draw the line between doing her best and doing too much. And even though we know those ignorant comments are coming -- "But if Amy Peterson can win an Olympic race, then you must not be that sick either" -- even as those stupid, cruel misperceptions are ringing in our ears, we still must remember that Amy Peterson is one of us. However incredible her achievements may seem, we must never allow ourselves to blame her for the ignorance of others. She fights the same battles every day that we do.

I don't know about you, but I'm planning to be glued to the TV set for the coverage of these Olympic games. I have no idea how Amy Peterson is pulling off this miracle, but I do know the price she is paying for it. I know it all, from the first twinge to the final collapse. I know it in my bones. I have been there, and been there, and been there. And she is doing it in front of the whole world. Fighting my battle out there in front of the whole world. I want to be there to see it.

Because, you see, the problem is not really Amy Peterson's success. The problem is the vast, agonized majority of us with CFS/FM whose stories go unheard, even sometimes by those closest to us. You can't sell newspapers with stories about people who try and fail, and try and fail, over and over until they finally realize that the battle can't be won.

All of us have those memories of struggle and defeat. And when we hear about a Peter Marshall or a Michelle Akers or an Amy Peterson, it almost seems as if their success invalidates our own battles. As if some voice was saying, "You see? If only you'd tried a little bit harder. You aren't really disabled. You just don't have the right attitude."

But we know that's not true. Each of us carries the truth of this disease within us: in our pain, in our numbing fatigue, in our confusion and heartache and struggle for sanity. And in the memory of those who committed suicide because they could not live with the defeat.

It is in that truth, that incorruptible, undeniable truth within each one of us, that our victory lies. Each of us, in the fact that we go on living and loving and hoping and trying, has brought the triumph of life from the ashes of defeat. We are all torch-bearers, every one of us. And our truth can never be extinguished by ignorance, by prejudice, or even by cruelty. Our truth is our lives, and we are still here, alive. Breathing.

Undefeated.