Olympian Battles CFIDS
integrates CFIDS into game of
By Bruce M. Walker
When Vicki Carpman, editor of The CFIDS Chronicle, and I drove to the apartment,
I wasn't sure
what to expect. I was excited to meet an Olympian, someone who will represent the United States in Atlanta
this summer. As a former competitive soccer player, I envied her. But I also knew she had a debilitating
disease. As a healthy person, I wondered how we would find her when we knocked on her door. Too weak to
talk? Lying on the couch unable to answer the door? I just wasn't prepared for what to expect.
Michelle Akers is a world champion. She plays soccer. She lives in an apartment that
looks just like
the dozens of other apartments in her complex or any other complex in the Orlando area. She is a celebrity
and people in other countries clamor for her autograph, but if she passed you on the street you probably
wouldn't recognize her. She's tall, tan and has wild, sun-bleached, curly hair. She has an infectious
smile made brighter by her tan face. She's incredibly fit and incredibly sick. She has chronic fatigue
and immune dysfunction syndrome (CFIDS).
The weekend before our visit, Michelle had been in Washington, D.C. playing for the
U.S. Women's National
Team in the U.S. Cup final. It was hot and the announcers were saying how wonderful it was for Michelle
to be playing again. She scored the only goal of the game against China, winning the Cup for her team.
Michelle greeted us at the door before we even reached the top of the stairs leading
to her apartment.
She had just returned from practice and welcomed us into her home.
As we sat at her dining table, I noticed the fruit on her counter and the cookbooks
in her baker's
rack, but the one aspect of her apartment that struck me was how completely normal it appeared. There
was nothing to indicate there was anything unusual or unique about the person living there.
We made some small talk and found out she had been a highly energetic child growing
up in Seattle.
"I was really athletic, a tomboy. My mom put me in every sport to keep me on the right
track and funnel
my energy. I played basketball, baseball, tennis, soccer, anything with a ball."
Soccer became a permanent part of her life when she was
10, but she ran into trouble trying
to play sports with the boys. Her family helped her break through that barrier.
"My parents were incredible. The only time I felt resistance was in school. I would
want to compete
with the guys and my gym teacher would say, 'no, you've got to go with the girls to the park.' I would
throw a fit and get sent to the principal. My mom would come get me, and the next day I'd be playing with
the boys. I think if it wasn't for my parents and my brother, I wouldn't have had the courage to continue
on and be as competitive as I wanted to be."
Courage and a competitive nature were traits that would become essential for Michelle
in the years
to come. As she was developing her skills as an athlete of international recognition, her body was battling
an opponent no amount of training could prepare her for.
"In college, 1984-89, 1 experienced the neurally mediated hypotension (NMH) stuff [dizziness,
weakness, etc.], although I didn't know what it was. I wondered, was it the heat, my fitness or something
else? And then, in 1991 the National Team won the world championships. We beat Norway in the final. I
scored 10 goals in five games. I was named the best player in the world and I received all these incredible
As she spoke, I looked for the braggadocio that you see in the newspaper's sports section.
there. Michelle was stating a simple fact: She was the best women's soccer player in the world. Being
the best though, doesn't make you invincible.
"Right after the tournament, I was out
for three months. I was sleeping all the time, I didn't feet good. I went to a
doctor and said, 'this isn't right.' He said, 'You
just played a world championship. You're tired and you've been training
She rested several months and spent the next two years playing professionally in Sweden
to maintain a rigorous promotional schedule. She said, "I tried to continue to play, but in 1993 I
collapsed on the field at the Olympic Sports Festival in San Antonio. And that was the beginning of understanding
what I was up against.
"After I collapsed, I said something's wrong here. First they thought it was muscle
so I loaded up on carbohydrates, and two days later I went out and collapsed again. I was delirious. When
they called halftime, they had to come get me because I was wandering around on the field. One of the
trainers took me to a hospital in New York to have an echocardiogram because we thought it might be a
heart dysfunction. I was fine. I still couldn't play more than 40 [of 90] minutes in a match before I
was done. Then I came back [to Orlando] and hooked up with one of the doctors who was at the Olympic Sports
Festival. He tested me for mono and my Epstein-Barr virus antibodies were up around 700 and he said, 'you've
got chronic EBV' The next spring I saw an internist who said I had chronic fatigue syndrome.
"Before I went down, I was extremely energetic, I did everything. I was what I call
Now I'm 'high maintenance.' I could eat everything I wanted, could work as hard as I wanted, could be
on the field all day and then go out the next day. I never experienced any limitations in anything. My
philosophy was 'you get what you work for' and I'd always accomplished anything I set my mind to. Whether
it was in school or friendships or climbing a mountain or soccer. I accomplished what I went after.
"That's been the hardest thing--having those strengths taken away from me and trying
to figure out
who I'm going to be now. And, can I still contribute to my team, to myself to my family, to the world?
That has been the major struggle, even over the physical setbacks. So I think I had it prior to 1991,
but 1991 just broke me. That effort broke me."
She was beginning to realize she would not only have to fight the disease but fight
the image of the
disease as well.
"When I first started talking about it to the media, it was important for me because
I was dealing
with it and I wanted other people to know what it was, to recognize it as an illness. But I also wanted
people who have CFIDS to have some hope. So that was my motivation to talk about it. It wasn't so much
for me as it was for other people. Most of the reaction was positive, but there were some negative things.
I was accused of trivializing the disease."
Educating those around her became a priority. While some could be sympathetic,
others were naive
and she felt the hurt of ignorance.
"[Recently] I was in a scrimmage and I had to come out because I was having the NMH
symptoms. I was
on the sideline bent over, on my knees, and a guy came up to me and said, 'what are you, out of shape?'
I wanted to kill him.
"It was a long, hard process to get my teammates to understand, because I didn't understand
going on either. After being diagnosed, I went to the library and started reading about it. Eventually
I found out more than my doctor could tell me, which is common, I guess. So, as much as I learned, I kept
relaying that to my coach. My teammates would ask me questions and I was just open with them.
"Even now, they're gung-ho about this elimination diet I'm on. They want to have a gluten-free
They come over and we juice together. I know without my team I wouldn't have been able to get to this
point. I'm lucky; I've got 20 people within close proximity who will lift me up when I need it."
Friends, family and her teammates were one thing, but what about her trainers and team
"I'm educating them. I tell them how I feel, you know, 'I'm feeling all foggy today,
I can't get my breath, I'm going to pass out, I've got to sit out.' They know how to handle it now. It
doesn't scare them. It did at first, but now it doesn't.
"Our orthopedist, Mark Adams, has gotten more involved just because we're going to the
going to talk with Dr. Paul Cheney, saying, 'She's an elite athlete, she's going to be playing in 110'
heat. What else can we do for her?' Mark Adams will probably be giving me IV saline at halftime and after
the matches to keep me hydrated. I have a nutritionist that's helping me with my diet. I have a lot of
people contributing to me as a player."
Michelle had conquered adversity most of her life. It had to be hard to ask for help.
"It killed me. It's changed me totally, as a person. I was someone who held her emotions
hurt me. I said to myself, J can handle it, I can do it myself.' For me to have to say to one of my good
friends, 'I can't do this on my own, I can't make myself better. Can you drive to the store for me? I
can't do it,' killed me.
"What I've learned is that, by opening up and letting them in on your struggles, you're
too. They see you struggling and they want to help. By saying no or not asking them, you're slamming them
in the face and you're hurting yourself, too.
"My teammates ask me, 'what can we do for you?' I say, 'if you're going to the store,
ask me if I need
anything. If you're going to a meal and you notice I'm not there, bring something back.' They do these
little things that make a huge difference. They call me and ask how I'm feeling. It's like, 'Oh! They
remember me!' Because you feel so alone at times, and that's frustrating in itself, to be alone and to
feel that bad and then to be on the road and feel that bad."
Her typical training day is a full-time job.
"We train at
10:00 am and sometimes at 3:30 pm." After the two-hour morning session, "I come
back to my apartment and have lunch. If we don't have [an afternoon] training
session, I go back and I lift weights, so that's another hour. Plus I get
injured a lot. I just came back from knee surgery, so I'm 'rehabbing.' That's
literally all I do. I work out, eat, sleep, rest. Sometimes I get on the phone
or write articles. It's just a choice."
Coming back from knee surgery is hard enough, with hours spent with a physical therapist
the muscle, but when it's your whole body, the recovery is long and often incomplete.
"It's taken me three years to get back. When I first decided to take six months off
[in 1991] and tried
training again, I was in the weight room, like, 15 minutes, and then I could go on a five-minute walk/
jog. It's taken me three years to get my body back."
As a result, she cannot rest on her past honors of being the best soccer player in the
fighting for her place on the team every day she laces up her cleats.
"I never know who is going to show up on the field, who I'm going to be from day to
day So to hear
my coach say today that he's so proud of me, that they need me on the field to win, was good. I disappoint
myself so much because I know what kind of player I can be. But I've learned I can contribute in spite
of [limitations on] my playing ability."
Full-time athletes make sacrifices all through their careers. Michelle is different
in that she has
had to sacrifice more than most athletes to achieve her goal of playing in the Summer Olympics.
"I've eliminated everything besides soccer. I had to make a choice. My team can party
and go out to
dinner, but I don't. In D.C., I was supposed to go to the White House. I said 'no, I'm not going, I need
to rest.' So I make choices that will hopefully contribute to me being able to be on that field during
"To me, the cost of playing in the Olympics outweighs how I'm going to feet afterwards.
Not only because
I'm in the Olympics, but also to talk about CFIDS. I know that the media is going to be really interested
in me and what's wrong with me, because that's already increased tremendously. And also because I'm a
Christian. So when people ask me, 'how are you surviving?' It's because I'm a Christian. For those reasons
it's important to me to be on that field and play in the Olympics and not be worried so much about relapsing
Michelle has been able to draw a lot of her strength from her faith. "I've learned that
I'm not in
control of any of this stuff. There's a bigger picture involved here. Whether I'm sick or not, m special,
I'm contributing, I'm where I'm supposed to be. I can still make a difference in people's lives, which
is important to me. So, I kind of just give God all this stuff. He can have this body, because I don't
want it. And take all these negative feelings because they're not helping me get well and they're only
making things worse. I've grown in ways I never would have had the courage to grow in or wanted to grow
She's determined to not let CFIDS stop her. It may slow her down, but she understands
there is more
at stake than Olympic dreams, and she may be the perfect specimen for a field study
"My interest is in how this affects elite athletes, since I know we're different. So
I'm going through
a lot of tests for my own benefit and because I want other athletes to start speaking up and coming forward
and being used as guinea pigs. We've got these great bodies and they're being affected by this virus/
illness, so let's see the difference between an elite athlete and a typical person with CFIDS. It would
be interesting to find out how being fit or exercising might help you overcome some of this. Because they
tell you not to exercise, which is interesting, or to exercise in moderation. For soccer to be your job,
and to be told not to exercise...
"But I don't mind doing those tests. That's part of it when you have CFIDS, figuring
out how you can
contribute. This is one of my ways, to go through these tests."
After the Olympics, Michelle plans to take some time off from soccer. She'll visit with
and go to the mountains around Seattle. She plans to "relax and do what my body wants to do for a change,
instead of what my mind keeps telling me to do."
Michelle isn't the type of person to stay inactive for long. She now has a new mountain
to climb when
she's done with the ones around Seattle. She will be an active voice for the CFIDS community because she's
determined to overcome this obstacle just as she's overcome the many other ones in her life.
"I can help a lot of people by opening my mouth and telling my story because of my platform.
what I'm going to do and I'm willing to take the criticism for that. I know it's a real illness. I know
it affects people to different degrees. I have been in bed. I have lost my life. I'm regaining some of
it, but I will always be affected by this. I just think it's my responsibility to tell the world about
Bruce Walker is a North Carolina
freelance writer who has won awards playing soccer in the U.S. and
Michelle found another way to contribute to CFIDS awareness by submitting Congressional testimony, which
was presented at the May 17 House and Senate CFIDS Briefings. Transcripts of her testimony and that
of the other five Briefings presenters are available from the Association by sending a self-addressed,
stamped (78 cents), legal-sized emvelope to: The CFIDS Association of America, PO Box 220398, Charlotte
NC 28222-0398, ATTN: Briefings Testimony. It can also be downloaded from the Internet by sending
an e-mail message which says: GET CFIDS99B TXT to the e-mail address: LISTSERV@SJUVM.STJOHNS.EDU.