Who is Sarah?
Gillian Lacy says she never doubted her daughter Sarah who has Chronic Fatigue Syndrome. Sarah Lacy, 18, of St. Catharines finds solace in her paintings since she was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia at age 12. She painted this self-portrait of herself at St. Joseph’s Hospital in Hamilton as she underwent a sleep study last December.
She was once the brightest kid in her class. Her school marks were always way above 90 and by Grade 4, she was in a gifted program. In Grade 6, she had the highest grades in her class; a year later she enrolled in French Immersion. She danced ballet, at one point up to 12 hours a week. She was even accepted into the National Ballet’s summer school. She was driven. Motivated. Bubbly. And she enjoyed life. Then it abruptly ended.
Sarah Lacy went to bed one night in January 2001 and woke up three hours later with a headache and sore throat. She felt dizzy and sore all over. Her parents, Paul and Gillian, thought she had the flu. Only, it didn’t go away. One week passed. Then two. Sarah wasn’t getting any better. The girl who could dance for two or three hours in a night, had suddenly become too exhausted to stand in the kitchen and put away cutlery. It took a while for a diagnosis. There were blood tests, a CT scan and referrals. Doctors ruled out everything from cancer to diabetes and lupus. But eventually, Sarah and her family heard the words: Chronic Fatigue Syndrome. She was 12 years old.
Chronic Fatigue Syndrome, or CFS, is a serious neurological condition affecting the brain and central nervous system. It’s also called Myalgic Encephalomyelitis. In the 1980s, it was poo-pooed by the medical community and largely dismissed as the “yuppie flu.” Times have changed. These days, CFS is recognized by organizations such as the World Health Organization, the Ontario Human Rights Commission and the Ontario Medical Association. The National ME/FM Action Network has developed guidelines to help doctors better diagnose and treat it.
It’s thought to be about five times more common than AIDS. CFS affects all ages, all ethnic groups, all socioeconomic levels. It’s more common in females. Its hallmark symptom is an exhaustion so debilitating, everyday tasks such as showering or getting dressed are too demanding. It’s been likened to feeling weakened every day by a severe flu. And for Sarah, life never returned to normal after that night five years ago. Says her mom: “Everything just stopped.”
Sarah missed weeks, then months of school. Her grades slipped. She struggled to keep up in subjects she once excelled in. She always had to ask for more time to do assignments. She stopped dancing and suffered from bouts of depression. The kids at school called her names like Sick Girl, Dying Girl and Sleepy. Many of her friends ditched her and labelled her a fake. People told her to just “suck it up” and quit begging for attention. She had to sit on the sidelines at gym class. And at school, the place where she felt so at home, she suddenly felt ostracized. She doesn’t drive or go anywhere by herself. This summer, she’s going on a vacation to England with her family and will need a wheelchair to take her through the airport. On a recent trip to the Art Gallery of Ontario, her sister Rebecca, pushed her around. Last fall, she had her first seizure. She sometimes feels lonely. Isolated. A burden to her family.
She doesn’t go to parties like other kids her age. She can’t. It would take too much energy. And this past spring, at age 18, the brightest kid in the class became a high school dropout.
A teacher from the District School Board of Niagara had taught her at home during the first term (a service that has helped her in the past). But none was available for the second semester. The only other option was to return to school, and Sarah knew she wouldn’t be able to keep pace and her health would suffer. So, she decided to quit. But she’s not giving up. She needs seven more credits to graduate and is determined to earn them. She plans to once again apply to be home-schooled, so she can start working on some credits in the fall. And if all else fails, there’s the Independent Learning Centre.
That’s just how she is. Still determined. That’s why she continued on with French Immersion through high school, even though everyone else was skeptical. And that’s why she will graduate. One day. She thinks about her future. Her friends – the true ones who have stuck with her – are off to college and university in the fall. She wonders if she’ll ever be able to leave her parents’ home and live independently, work, marry or have children.
Often times her life seems ruled by medical appointments. Sometimes, she has to stop and ask herself an important question: Who is Sarah? “I have to remind myself that I am not an illness,” she says. “I feel invisible to it. “It’s like a monster sitting in the middle of our family and everything has to revolve around this monster or it will turn around and bite you.”
On this day, Sarah and her mother are sitting on their living room sofa of their St. Catharines home. Sarah is bright, articulate. She does most of the talking while her mother listens.
She is slender, pretty. Long brown hair frames her face. In fact, she looks healthy. Like any teenager. And therein lies one of the biggest battles for people with CFS – to be believed. Marjorie van de Sande, an adviser with the National ME/FM Action Network, likes to quote Dr. David Bell, a renowned pediatric specialist from the United States. He once said: The question should not be, “How can someone who looks so well be so ill,” but rather, “How can someone who is so ill possibly look so well?”
Exhaustion is so debilitating, even the very name “Chronic Fatigue Syndrome” cheapens the condition, says van de Sande. People are not tired or fatigued. They are completely and totally exhausted, she says. She much prefers myalgic encephalomyelitis, or M.E. Other symptoms can include: extreme joint and muscle pain, headaches, severe problems with thinking and memory and a depressed immune system.
It often begins suddenly, and in a third of cases follows a respiratory, gastrointestinal or other acute infection with flu-like symptoms. Other cases may develop after an emotional or physical trauma. There is no known cause or cure, although researchers have their theories. Recent studies have pointed to genetic abnormalities in the immune system that make people more prone to CFS. Anything that puts stress on the immune system can be a trigger in people who are predisposed. Viruses, toxic chemicals, heavy metals, immunization, physical trauma and ongoing physical and emotional stress, are among them, she says. And even if they don’t trigger CFS, they could weaken the immune system so that a virus could trigger it.
Many people with CFS have about 70 per cent of their blood circulating, she says. They may feel weak, and without enough blood and oxygen going to the brain, their thinking ability is impaired. Says Sarah: “This is real. It’s more than just being tired. It comes in and it completely destroys your life. “Some days, I wished I was dying so that I’d know there was an end to this,” she says. “It sounds so horrible, but I’m looking at the rest of my life feeling like this.”
On good days, Sarah has about half the energy she once had and describes the feeling like walking around in a fog. On bad days, she can’t get out of bed. And on really bad days, she wonders why she’s alive.
“What’s the point?” she has thought, during her struggles with depression.
“Why was I even born?”
When she was attending school, there were mornings when she’d expend all her energy getting ready, so that when she finally arrived she’d be so exhausted her mother would simply turn around and drive her home. Some days, reading and simple math were beyond her ability. Words blurred together and she struggled to understand what they meant. She’d resort to using her fingers for simple addition.
“It was frustrating. I knew I was smarter than that.”
In children, the severity of symptoms can vary wildly, even from hour to hour, says van de Sande. At worse, some children are bedridden, too weak to bathe themselves, even brush their teeth. At best, they can’t participate in all the regular activities of childhood. They may not be able to attend school or even go to a friend’s house to play. Gone are the everyday kid dreams of dating, dances, university and careers, she says. “Many simply lose their childhood and much of their identity.”
Sarah is determined not to lose herself to a disease that can easily take control. She writes her thoughts in a journal. “It helps me from getting stuck in my head,” she says.
And she paints. “It’s a release for me. It’s something Sarah the human does, not Sarah the disease.” Even then, there are days when her fingers are too sore to hold a brush.
She wants people to know that while she may look healthy on the outside, her body is waging a war on the inside. “This is not all in my head,” says Sarah. “I’m not doing this because I want attention. I’m not doing this because I’m scared of school. “I am really sick.”
“The problem with CFS is you either believe in it or you don’t.”
Sarah has no choice. She believes.