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He salvages what he can of his teen-age years by keeping in touch with friends through e-mail.
Subject: Birthday BashDate: 5/21/01
From: Cameron
To: Mina
"I had my b-day party yesterday. It was great. I feel really, really crummy today, but it was worth it."
For Cameron Williams, the decision to indulge in his own 16th birthday celebration was a calculated risk.
There was no wild party. Just a few hours of fun with cake and presents, he knew, would ravage his body.
He'd spend days recovering--battling muscle aches, fever and exhaustion.
"But I can't waste away in bed," said Cameron, who suffers from chronic fatigue and immune dysfunction syndrome.
The mysterious disease causes unexplained fatigue and flulike symptoms that can't be relieved by rest. It affects as many as 800,000 people in the United States, according to the CFIDS Association of America. There is no known cause or cure.
Cameron was happy to make the birthday tradeoff. It was a luxury he did not have when he first got sick more than two years ago.
Back then, he spent all day in bed, leaving his North Stafford home only for doctors' appointments.
He was so ill that his mother, Rebecca Whittington, worried he would try to commit suicide. "I found myself going to the door in the middle of the night to make sure he was just sleeping," she said.
Although CFIDS seems to be loosening its grip on Cameron, doctors don't know if he will ever fully recover. Meanwhile, the disease has forced him to leave school and give up normal activities.
E-mail helps him keep in touch with a handful of teen-age friends--friends whose lives are now much different from his own.
Subject: Turkey Day
Date: 11/21/99
From: Robert
To: Cameron
"Things have been pretty busy. I'm so happy! I got a B+ in Geometry!Hope to see you soon, and if I find a moment to breathe, I'll call you."
Cameron's life was once as busy as Robert's.
He was active in band, the chess club and schoolwork. He read books, rode his bike and hung out with friends.
That changed just weeks before his 14th birthday.
On the way home from a springtime pool party, Cameron told his dad, Gary Williams, that he felt like he was coming down with the flu.
"Usually, I still go to school when I'm sick," Cameron said.
He never made it back to eighth grade.
When the freedom of summer break failed to pry him out of bed, everyone--including Cameron-- knew he didn't have the flu.
Sitting up made his chest pound. He slept as many as 20 hours a day but never felt rested. He struggled to stand up, and he took showers lying down.
"I'm watching him fall asleep trying to sit up and eat a meal," Whittington said.
His head pounded and his eyes hurt when he tried to read. He needed a wheelchair to leave the house.
"Going to the bathroom, which was just down the hall, was really a struggle," he said.
Next came a blur of doctors' visits, false diagnoses and dead ends. Cameron fought to keep his eyes open as oncologists, rheumatologists and other specialists poked and prodded.
They ruled out mononucleosis and Lyme disease. He didn't have hepatitis or cancer.
If the confusion was hard on Cameron, it was torture for Whittington, who became obsessed with finding out what was making her oldest son sick.
She took a year off from work to care for him. She turned the dining room table into a research center and spent whole days there, making appointments, setting up referrals and downloading information.
"I would put his symptoms in [the computer] and come up with 360,000 sites," Whittington said, eyes brimming.
"I really believed if I just worked hard enough, if I got up early enough and read enough books and magazines, if I called enough people, if I just pushed hard enough, I'd find an answer."
By the time a neurologist suggested CFIDS, Whittington already had stumbled across it in her own research. She had dismissed it, though, as something that couldn't possibly be as debilitating as what was robbing her son of his teen-age years.
"Maybe it's better finding out the reality of this disease a little bit at a time," she said.
Subject: Four Day Weekend
Date: 5/27/01
From: Cameron
To: Mina
"Man, I'm going to need a weekend to recover from this weekend! I was finally recovered from my birthday party, and we went to see 'Pearl Harbor' yesterday. We didn't know it beforehand, but it was three hours long! Way too long for me to be up at one time, but it was a really good movie, better than I expected. I went to bed last night at 7:45, and I woke up at about 10:00 this morning."
Cameron's symptoms have subsided in the past year. He can fix his own meals and concentrate on schoolwork for up to an hour at a time.
He even makes it to an occasional movie. "When he comes out, he's pale, weak and running a fever," Whittington said, but it's worth it. "It is such a big deal for me to see him go to a movie."
Other than his colorless complexion and slight build, Cameron looks like a healthy teen-ager. He's tall and clean-cut. "He's been grown since the time he was 5," Whittington said.
But he sleeps until noon and naps during the day. When he isn't in bed, he's slumped in the boy-shaped hollow his body has carved into the living room couch.
He has to be horizontal most of the time because his blood pressure plummets and his heart rate soars when he sits or stands. The condition--called orthostatic intolerance--is common in adolescents with CFIDS.
"When I get up, it feels like weights are attached to my arms," he said. "When I breathe, it feels like someone's pushing down on my chest."
He leans back in a reclining chair and rests the keyboard on his lap to surf the Web or send out e-mails to friends like Jenn "Mina" Craighead of North Carolina and Robert Poetta of Stafford County. He eats lying down instead of at the table.
His 11-year-old brother, Jordan, helps by delivering meals to his door, toting laundry and straightening his room.
"He makes up for it by trashing it," Cameron said with a grin.
Subject: Halloween
Date: 10/31/99
From: Cameron
To: Robert
"as for trick or treating, no, I am not going to. Don't be sad though, I got some candy from my grandma and aunt, and my mom's friend, besides, I don't eat a whole lot of candy."
If missed holiday festivities and teen-age milestones weren't enough, Cameron and his family must deal with the mysteries that surround his disease.
Since CFIDS can resemble other disorders, like mononucleosis, multiple sclerosis and fibromyalgia, doctors often misdiagnose it.
A host of viruses, bacteria and toxins have been studied as possible causes. Scientists are looking into theories that the illness is brought about by a neurological disorder or by immune system abnormalities.
Friends, who hear "fatigue" and think "tired," have a hard time believing CFIDS is a serious medical condition.
Whittington turned to Lydia S. Segal, a doctor of alternative medicine, after seeing a string of traditional physicians who knew little about her son's illness. The family has stuck with Segal because she is willing to try new treatments and to do research on her own.
Of the dozens of CFIDS patients Segal has seen, Cameron has the most severe case. Yet, since the cause is unknown, she can't cure it. Instead, she suggests treatments with herbal supplements and light therapy.
She's encouraged by Cameron's recent improvement and believes that eventually he will recover. "There's no way to know whether it will be full," said Segal, who manages complementary and alternative medicine for Kaiser Permanente's mid-Atlantic region.
"He may fatigue more easily than the average person, but he should be able to graduate from high school, get a job, get married, do all the things that other people do."
Cameron isn't looking that far ahead. He hopes to be well enough to take a couple of high school classes this fall and to get his driver's license soon.
"I feel like I'm being left behind by people who are younger than me," he said. "It's not good."
The uncertainty of his future has been the most difficult part of dealing with this disease, said Whittington, who is now active with the CFIDS Association.
"My focus has changed from my son to hundreds of thousands of people who have this," she said.
She still fights back tears when she notices other teen-agers hopping into their cars, playing their stereos too loud and having fun.
But she holds on to hope.
"He has a life waiting on him," she said. "I know that."
For more information about chronic fatigue and immune dysfunction syndrome, call the CFIDS Association of America at 800/442-3437 or visit the Web site at www.cfids.org.
