The fact that doctors still don't know what causes the illness, which affects some 400,000 American adults, or agree on how to treat it, has helped foster what may be the unkindest cut of all for CFS sufferers: public misperception that theirs is somehow not a "real" disease. Hogwash, says Michelle's father, Bob, a psychologist in her hometown of Seattle. "I have worked with chronic fatigue patients myself and it has cost them jobs; it's caused a lot of depression," he says. "[With this illness] you learn to live in the here and now."
These days the moment is looking considerably more attractive to Akers. Training for the first U.S. women's pro league, scheduled to start next spring, she is also preparing for what she hopes will be her life after soccer: community outreach designed to strengthen both body and spirit. Sitting in her second-floor loft apartment in an Orlando suburb, Akers talked with PEOPLE special correspondent Don Sider.
IN JULY 1994 I WAS PLAYING IN A sports festival in San Antonio when I became delirious on the field. I would wander around, people would pass me the ball, and then the ball would get stolen. Halftime came, the team went off the field—and I stayed out there. They had to come get me. They gave me IVs afterward, and they were saying, "It's hot. She's been on a hellish travel schedule." Two days later, the same thing happened. After a couple of times more, I said, "I'm not just tired. I'm sick. There's something wrong."
For about two years I'd gradually been going downhill in health and performance. When I returned home from the '91 World Cup in China I was extremely tired and listless. The symptoms of the fatigue worsened—every month it was tougher and tougher for me to get on the field and train. I became dizzy, light-headed, my gastrointestinal system was real upset all the time. Then I started getting feverish at night. Still, I was in denial. It was like when you have these nightmares, and you know there's a monster in the closet. You know you should look, but you don't. So you continue to be fearful of the monster but you try to ignore it. That's how I was with this illness.
After my collapse, I saw an internist. First he diagnosed me with mono, and told me to take a month off. I came back a month later, worse. He diagnosed me next with chronic Epstein-Barr virus, and told me to take three or four months off. I tried that and came back again, worse. Finally he diagnosed chronic fatigue syndrome. I was kind of relieved to have a name for it. But if I had known the future, I probably would have been frustrated and hopeless.
The very worst was total debilitation—just this bone-weary exhaustion. You can't escape it. Sleep isn't even restful. I had migraines that would last for days, and I would just lie there and wish I would die. I've been to the point where I'm saying my prayers and asking, "Take me now. I can't handle this anymore. I would rather be dead than have to go through another day or hour like this." I compare it to the 24-hour flu—only I had it for five years.
I was never panicked. It's more confusion and frustration, sometimes anger, sometimes immense grief. I cried a lot. Nothing that I had relied on in my past was there for me anymore. My strength, my stamina, my energy, my self-reliance and independence—all gone. This thing just ate it up. During the worst period, which was probably the year and a half before the Olympics, there was not one moment's respite. It was literally just my mental tenacity that kept me going. I made myself get out of bed, made myself do things until my body just collapsed. And then I would go home and literally lie on the floor in my kitchen, because the floor felt cool, and just sleep there.
Once I got the diagnosis of chronic fatigue syndrome, I started reading everything I could about it. What inevitably happens is you get this shotgun blast of different information, but eventually you start to pick out stuff that might be able to work.
And so I began with a change in my schedule, my priorities, so I could devote the strength I needed to heal my body. Roby [soccer coach and former pro player Roby Stahl] and I decided to get a divorce; after four years we had decided we weren't good for each other. I think my illness definitely exacerbated the situation. I saved every ounce of energy I could for the field and to put into my teammates. And once those hours were over, that was it. I couldn't do anything else.
About six months before the '96 Olympics, I was in training camp in San Diego and I was struggling big-time. I was coming in from practice sessions and crying in the shower. That's when I decided to contact Paul Cheney, a doctor mentioned in a book I'd read, and try this diet he had developed. It's a terrible diet—no gluten, no beef, no caffeine, no sugar, no dairy, and the juice of two pounds of carrots a day with a supplement to help you metabolize your food. It was disgusting, but I didn't care. I said, "I'm doing whatever it takes."
Within two weeks, I noticed the change. I knew I could play, that I had another chance. And then the team doctor thought that if I got two IVs of electrolyte replacement solution after playing, that this would help me recover. It was amazing. Once he got one bag in me, I was coherent. I stopped crying. I stopped having a headache. And then when he got the second one in me, I felt a lot better, and I could actually sleep that night. The diet and the IVs were major.
Then I found another doctor, Jesse Stoff, in Tucson. His theory is that you've got to treat body, mind and soul in order to get well because each one affects the other. The first thing he told me was that I would have to alter my schedule drastically: less traveling, less work, more play, more prayer and quiet time. He put together a pretty intense regimen of diet and supplements to help heal my body. I've been with him almost a year and have seen incredible improvement.
As a Christian, you know that things don't happen without a purpose. And you know, even in the hardest of times, that God is doing something and you've got to trust that. In fact the illness brought me back to Him. I think the challenge is to take these difficult and painful times and turn them into something beneficial, something that makes you grow.
Most of the time now, I feel good. I'm not totally healthy yet, but compared to last year at this time, I'm 100 percent better. But I've still got a way to go. There's no magic bullet. One of the messages that I have for people who are sick or going through tough times in other areas of their lives is, do not give up. This is not about running sprints; it's about running a marathon.
As 80,000 fans went nuts, Michelle Akers raced to embrace her teammates on the victorious 1996 U.S. women's Olympic soccer squad—a gold-medal moment she had all but despaired of experiencing. It wasn't her age—30 that August evening—or the ER's-worth of punishment her body had suffered over the years, including 13 surgeries, several major concussions and a few dislodged teeth. What had nearly sidelined the star often called the Michael Jordan of her sport was chronic fatigue syndrome, a debilitating illness which has dominated her life since 1991. "The more you know, the more impressed you are," says Colleen Hacker, the Olympic team's sports psychologist. "She just has a warrior spirit about her."