By Xenia Slabina
Photos by Mason Trinca
Standing between two large brick columns in front of his house, 18-year-old Jordan Britton stumbles to the right, hitting his knee against the hard concrete. “Ouch, I bricked my knee,” Britton says, watching a drop of blood trickle down his leg. Then he giggles, adding, “I’m used to it, you know.”
Although Britton has experienced physical tics like these since he was seven years old, just looking at him, few would guess he is one of the 200,000 Americans who have been diagnosed with an extreme case of the rare neurological disorder known as Tourette Syndrome (TS). The disorder is characterized by repetitive involuntary physical tics, much like Britton’s stumbling, tripping, and hand and head shaking. Britton also experiences the most well-known symptom of TS: vocal tics, or corporalia, which cause him to utter words against his will. “I can say random things, really inappropriate things. My classmates are not supposed to laugh, but even I laugh,” he says.
Unlike his peers at Thomas Edison High School in Beaverton, Oregon, Britton doesn’t go to movies often—he says it’s difficult to suppress the tics for two hours in a quiet theater. It has become a habit for him to repeatedly apologize for his behavior. “Sometimes when I tic, it’s like there’s another person in there controlling my brain. It’s like I can’t really do anything about it, but I try to fight through it,and even though it’s tough, I do my best,” he says.
To raise public awareness and to make sure no one is offended by his tics, Britton carries with him little cards provided by National Tourette Syndrome Association (TSA) and hands them out to people who seem disturbed by his occasional outbursts. Each card communicates the following message: “Why do I act this way? Because I can’t control it. I have Tourette Syndrome—a medical condition. It causes me to make loud sounds, have twitches and say things I don’t mean. I can’t help it any more than you can stop a sneeze or cough. I’m sorry if it bothers you—it bothers me more.”
Tourette Syndrome is a neurological disorder with an unknown cause and no known cure. Studies suggest that TS is the result of abnormalities in three important brain neurotransmitters—serotonin, dopamine, and the stress hormone norepinephrine, which transmits impulses between nerve cells. Norepinephrine is known for its adrenaline-like qualities, such as a triggering excitement and rapid heartbeats. Imbalances in norepinephrine can lead to overactive releases of dopamine, a chemical messenger regulating emotions and movement. Normally dopamine only sends messages to the body when performing an action is necessary, but in people with TS, dopamine keeps telling parts of the body to move, causing random nerve twitches.
In Beaverton where Britton lives with his parents, Genee and Chuck Britton, he struggles daily with his tics, often during activities others may take for granted. When the family gathers around the dinner table, Britton’s mother situates two chairs with pillows on either side of him in case a tic throws him out of his seat. Britton also uses plastic silverware because his arm tics may cause him to accidentally hurt himself. Tics that make Britton throw things up in the air have caused him to stop using knives while eating and pencils while writing. Genee says sometimes her son does his homework lying on the floor because he cannot sit at his desk for long periods of time. Walking long distances and going up and down the stairs can also wear him out. “He gets tired really easily,” Genee says. “Because of his tics, his body moves four or five times more than all of ours. We don’t even see all the little movements.”
Britton has an outgoing personality, and unlike many who have TS, he is not ashamed to speak about his disorder in public. To learn how to better talk about his disorder with others, Britton became a member of the TSA’s Northwest Washington and Oregon Chapter, which provides information to families and individuals struggling with TS, as well as educates agencies, legislators, healthcare professionals, and educators, about all aspects of TS. In the fall of 2009, Britton was nominated to be a TSA youth ambassador. The following spring, he traveled as a TSA representative to Washington DC and learned how to advocate for people with disabilities and how to speak about TS. There, together with Oregon state representatives and state senators, Britton talked about how he coped with TS. Genee says the primary goal of TS advocacy is to raise public awareness and to put a face to the disorder with the hope that the public will become less judgmental.
After returning to Oregon, Britton was joined by his mother and Northwest Chapter Vice Chairwoman Erin Farrar while he gave speeches about TS at Century High School in Hillsboro. In 2012, Britton was asked to speak at the annual Thomas Edison High School breakfast, where in front of a 400-person audience, he tried his best to help them understand the difficulties people with TS endure, what his personal struggles with the disorder are, and the challenges anyone with a disability faces. “Advocating for TS helps me a lot because it gets my stress out and tells people about me as a person,” he says. “It helps people know more about Tourette’s. If they see this disability, they won’t judge right away.” But despite the efforts of TSA and members like Britton to raise awareness, many people still express bias against the disorder. In Britton’s last year of middle school, Genee says his teachers at a small private school near Portland asked him to leave. Britton was the first student with TS at the school, and his mother says because he didn’t fit into “the box,” it was just easier for the school to remove someone who was different, even though his classmates cherished him and he had many friends. “Students loved Jordan; he is very magnetic,” Genee says. Now, he is finishing his senior year at Thomas Edison High School, which caters to learning differences.
Like many teens, Britton is into music, and he has his own music mixer and deejay turntable. He says his favorite pastime is spending time outdoors with friends. “It calms me down and gets my focus off my Tourette’s. When I’m being social, you wouldn’t really be able to tell that I have TS,” he says.
Britton says there are times when he feels stressed from not knowing what to do about his tics, although there are moments when he can almost forget about them. He believes being around people and pets helps him relax. “When I’m with friends, there are no tics. It’s like a therapy. When I’m doing something I like or when I’m with somebody, I don’t feel pressure,” he says, adding that he also enjoys petting his golden retriever Sadee. “When I’m with an animal, it seems to soothe me.”
Britton also enjoys playing sports like ultimate Frisbee and basketball. “It’s hard for me to walk, but I can run when I’m focused,” he says. Britton’s father, Chuck, finds it strange that while Britton has difficulty walking and standing, he has no problems with running. “Once he starts running, he can sometimes run like the wind,” he says. “We kind of draw an analogy where there are other people who stutter, but they can sing beautifully.”
Occasionally as a person ages, the frequency of tics decline or TS symptoms can disappear completely. It is estimated that 1 million Americans may exhibit mild symptoms of TS, and in 20 to 30 percent of cases, their symptoms disappear entirely when they reach their twenties. Beginning at age three and lasting until he was 12 years old, Eugene resident Azoulas Yurashunas experienced symptoms of mild TS. As a child at Santa Rita Elementary School in Los Altos, California, Yurashunas says his tics manifested in blinking and crossing his toes often. “Because I was a little strange, because of the blinking and all other physical tics that I might have exhibited, I was somewhat a social outcast. Nobody wanted to associate with me,” he recalls, adding that he remembers feeling self-conscious about doing something that might be noticed by the other children. “It was very frustrating, which contributed to lower self-esteem because I felt I was failing to be my own master.”
Although Azoulas, who is now 25, did not treat his TS symptoms with medication, they eventually subsided. It has been 13 years since Azoulas has experienced an uncontrollable tic. “When I reached the age of 12, the TS stopped; I became more confident, got more friends, and started having a more normal childhood. I don’t even think about it anymore,” he says.
For some, Tourette’s can be complicated by other disorders: TS is often associated with attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD). According to Chris Mason, author of What Makes Me Tic: Living with Tourette’s Syndrome, about 30 percent of children with TS in clinical populations meet the diagnostic criteria for OCD. The medications used to treat TS, called dopamine blockers, are from an antipsychotic class of drugs that block messages sent by dopamine. The blockers are meant to prevent unwanted signals from reaching other parts of the body. Mason, age 43, has been living with OCD and a severe form of TS for most of his life.
Mason is thankful there are medications that have lessened his symptoms, which include shoulder shrugging, swallowing, making fists, coughing forcefully, grunting or clearing his throat, curling his fingers and toes, and biting his fingernails. Mason describes the emergence of his tics like this: First, an area of his body starts getting tense, and it’s impossible to ignore. Then, the urge to tic appears and stays until he performs the tic. The longer the tics are suppressed, the more severe they become. “There is no way I could have lived with the tics. I wouldn’t really be living, since I wouldn’t be able to function at all,” he says. Mason started having TS symptoms at the age of six, but he wasn’t officially diagnosed with the disorder until 14 years later in 1990, when his mother unexpectedly learned about the disorder from a medical program she was listening to on the radio and realized it was her son’s condition. At the time, Mason lived in Walnut Creek, California, and TS was not well known. Neither he nor his doctor had heard of it before.
At the age of 20 Mason was prescribed a medication called Orap, which he still takes today. On the fifth day after initially taking the prescription, Mason’s tics were gone. At the same time, he was also put on Prozac to get rid of the intrusive and obsessive thoughts that are common with OCD. Although Mason stayed on Prozac for only four years, his OCD has completely subsided.
But along with removing his tics, Mason’s medications cause serious side effects. Besides making him gain about 60 pounds within the first three months of taking the drug, Mason says the medication also makes him extremely tired. “I sleep whenever I lie down. I would sleep all day if given a chance. I have what is called ‘cognitive dulling,’ where my brain works very slowly, and I often don’t have clear thoughts or a clear mind. I also feel like I have a bad hangover all day, every day. I have had that hangover every second of my life for the past 23 years,” he says. Mason believes that being on medication is only a little better than not being on it.
The side effects of the medication, Mason says, have caused him to either not be hired for jobs or to be fired shortly after being hired. During his lifetime, he has held more than 30 part-time or seasonal jobs, although he says he has applied for about 130 part-time and full-time positions. Because Mason’s disorder has kept him from maintaining steady employment and a regular salary, he says there were times when he was homeless living in his car or in a board and care home. Mason admits the side effects from the medication are so severe that he’s fallen asleep while driving. In addition, he is now in danger of developing diabetes because he is overweight, out of shape, and doesn’t eat healthy. “The medication makes me too tired to exercise, but I’m also always hungry. It’s a catch-22,” he says.
“I don’t think there’s ever going to be a chance of me losing the weight I have gained because I am probably always going to have those problems.”
Instead of being physically active, Mason spends his time writing about TS. He lives in a residential hotel because that’s what he can afford with the disability payment he receives each month. “I wish I would have known about it and applied for disability 20 years ago when I was first eligible. Then I would have always had money coming in and I never would have been homeless,” he says. But optimistic by nature, Mason says in some respects, his experience has been beneficial because it changed his views about people with disabilities. “I have gained a greater respect and understanding for disabled people. I know what they go through because I have walked in their shoes,” he says.
In February 2011, Mason published an anthology called Touretties featuring 21 short stories authored by people with TS. His own story about what it’s like living with TS, titled “Halfway to Hell and Back,” was also included. He’s also working on publishing a memoir and a children’s picture book, which will include three stories about people with TS. “There are so many people who think they understand it, but they don’t. This leads to stereotyping, discrimination, ignorance, and the spreading of false knowledge,” Mason says.
Like Mason, Britton has also taken medication to treat TS, but now he is experimenting to see how his body will operate without it. Living with TS has certainly been challenging for Britton and his family, but his parents have learned to adapt to their son’s way of life to make him feel more comfortable. They say Tourette’s has given them an opportunity to know more about other people who have disabilities. “Although TS caused a lot of difficulties and struggles in our lives, it really opened my eyes to a world I wouldn’t have known about had Jordan not gone through what he is going through,” Genee says. “It makes me realize there are people and families out there who need help more than we do.”
Chuck says TS taught the entire family to be more compassionate towards others. Despite his son’s youth, Jordan has embraced that compassion and begun volunteering and helping with food distribution every Saturday at Sunshine Pantry in Beaverton. He has also started volunteering for the Boys and Girls Clubs of America in nearby Sellwood.
“All I honestly wish is for people to be more understanding,” Britton says. “If you have any questions, do not be afraid to ask somebody because it’s totally natural. You may be afraid to ask somebody about their disability, but you know, they want to explain—they want to open up and talk to somebody. I’m really social and I want to open up and talk to people if they have any questions.”
