Professional painter Liu Fusheng had the distinction of winning a prestigious Young Artist Award in his native Singapore. Both museums and private investors have collected his work, and he’s been the subject of solo exhibitions in China and the US. Liu’s distinctive glasses, decorative crystal, and shoes hint he also might’ve made a compelling rock star or fashion designer. But a serious health condition that struck early in life almost derailed him. Here he talks about his journey:
I was seven years old in my backyard playing soccer when I first noticed it. And all of a sudden I fell down. I start hitting myself and screaming. And every night I saw a spirit. In fact, it was a dark shadow from a long time ago, many thousand BC.
It was a Chinese silhouette holding an axe and chains, and every night he whipped me until I cried. And when I woke up and told one of my parents, they said, “What do you mean?” I said that the spirit “was holding an axe and chains to take me away.” Singapore has four races: Malay, Chinese, Caucasian and Indian, and my father thought I was like Chinese children who, in the daytime, play too much, and at night are haunted by their dreams.
They thought it was just a nightmare. But it happened every night. So they went all over the country, and some Chinese people said: “Maybe take your son to see a medium, maybe pray and that might kill it.” But that got me more scared, because sometimes in Chinese stories the spirit went to a person, and he became sick. To heal me, they took a sword and a chicken and cut its throat right in front of me. This spirit that was haunting me was supposed to go into the chicken and be taken away.
One time we went to Indonesia, and they said there was someone who could cure me. He was four times my size. So he’s going around and around me. Then he started pulling my hair, and when I wanted to run or crawl away, he overpowered me. He sat on my back like I was a horse. He chanted and pulled my hair. I even went to a church, and the pastor said I was possessed.
By second or third grade, I was considered too tense to attend school. I took medication, which they increased. I went through so much, but I didn’t know what was going on.
THE GHOST HAS A NAME
It wasn’t until 1995, when I was studying in Tasmania, Australia, and “disturbing the other students” that I was told to go and see a psychiatrist. That doctor finally diagnosed me as having Tourette’s syndrome. (See sidebar.) He told me it was congenital. I said that’s bullsh*t. “Why can’t you tell me that there are ghosts that came into my body?” He said, “Doctors don’t believe in ghosts. It’s a medical condition.”
And of course, I was very resistant to the idea. It was very painful for my parents to see me go through this. No one wants his or her child to be ill. But we had to fight against it, that was the only way.
I realized that if I accepted my diagnosis, my life could be colorful. I was so used to being depressed. Growing up, I had no friends because I felt that they might not be able to accept me. I always felt inferior and alone. I always looked down at the floor instead of facing people. I felt so strongly that no one would ever love me.
What made me blossom was dancing. I love to dance. Of course I tried to talk to the ladies, and of course I wanted a partner on the dance floor and in life, but I didn’t know how to have a partner.
I always wondered if I had a future. Because I have a normal body, but I have jerky movements, and I was always hitting myself, being noisy and shouting. With Tourette’s you have to have courage to overcome it.
I told myself that God is crazy. Not in a bad way. God is fantastic. But God will make you move. He will shine through you and put you on a path… God doesn’t want anyone to take his or her life; He wants you to face your life.
To overcome the pain. If you stand in it firmly, people will start to change their minds and look at you with new eyes.
‘I WOULD CUT MYSELF’
I used to hit my own cheek. It would be bruised and black and get callouses. I wanted to be like everyone, talk softly, and not make obscene movements, like hitting my bottom or other parts of my body. I used to use my finger to poke myself until I bled. When I hit myself, I got tense. When I got too agitated, I would cut myself more, so I try not to get too agitated.
When I’m shouting, sometimes I’m trying to tell myself to stop hitting myself. People with Tourette’s may say vulgar things, but I don’t. When I say vulgar language, it’s because I’m angry. But my mom says it all stops when I sleep. She tells me: “The best thing that you have in your life is sleep because then you don’t make noise. So can you sleep more?”
They would give me drugs to slow down portions of my brain. But the side effects made me sleepy. I couldn’t even see straight… It was painful and didn’t work. It slowed me down and made me tired.
My parents would say, “How come our bloody son always wants to go to the bed? He will become a lazy bum.” My mom always says that I don’t belong on this planet. I say, “It’s true, I don’t.” But I’m here, so what do I do now? I can’t go back. If my spaceship passed over this planet, and I dropped down, how come I’m here? What’s my purpose?
I heard this little boy with Tourette’s say to his mom, “This condition is so ugly. Will someone love me when I grow up?” And she said, “Don’t worry. If nobody loves you, I’ll love you.”
I told her, “No. You’ll kill him. Let’s say one day when you leave this world, he will say, “The one who loved me is gone.” You should tell him, “There’s nothing wrong with you, and someone will come into your life that will love you. You have to believe that, despite the fact that you have this.”
Recently a woman proposed to me. A lot of people have said—even my parents, and past lover—”No one will marry you. You are just bloody noisy.” But sometimes people will stay with you, be your partner. Your partner has to face a lot of obstacles too; because of the way people look at her because of your condition.
HEALING POWER OF ART
When I’m dancing, I don’t jerk at all. I used to jerk when I was painting, but it stopped. A mentor once told me,
“When your brush jerks, leave it in the painting.” Some people at an artists’ residence in Singapore complained I was too noisy and wanted to ask the National Council to make me move out of my studio. But my mentor was quite powerful in art circles and also filthy rich; he had the authority to talk to them and told me, “Don’t be frightened by the National Council. Whoever tells you you are shouting and screaming, just tell them it’s God screaming and God shouting, not you.” That’s a good answer.
In the mid-90’s, I won a painter of the year award. I would paint almost every day from afternoon until 4 or 5 a.m. The moment when I stopped, I would pray; “God, let me be like a child playing with my toys. Even though it’s a brush, it’s a color, let me treat it like a toy. Let me have no commercial thinking, realistic thinking, and greediness. Let me take it all the way. Let me paint in peace. Let me believe that my work is all guided by you.”
In 1997, I was invited to this very important artist colony called Yaddo, in Saratoga Springs, NY, which is upstate. I believe I was the only artist with Tourette’s to be invited. I had no idea this place was so important in the art world. I was given a place to work, live and paint. They wanted to know about me.
I once painted a series that a Singaporean bought. Before the gallery opening, he said: “How many pieces did you paint? I will collect them all; I will support you.” That’s how I was able to buy a small house for myself.
I just keep painting. It’s not easy. After my appendix ruptured during grad school in Australia, I could’ve died. But I believe God let me live for a reason. I had to have two operations. I felt like the doctor believed it was hopeless. The moment you’re in a very dangerous situation, the only “person” who can pull you up is God. I prayed and got cured. Food had been stuck inside my body for seven days. It was very dangerous.
After I got better, my godmother asked me to do some volunteer work with people who have visually conditions. From there I started to gain confidence and was shocked to find they were so happy; so why shouldn’t I be happy, despite my condition? I gained strength from them, mingling with them, being their friend and learning their spirits.
And now God has given me a woman who wants to marry me, so I have no complaints. People reject things and call them ugly. Everything can be beautiful if we just say to them that they are beautiful. That can change a mindset. In fact, I’ll just live life to the fullest and try my best to create as God calls me to do, praying he’ll send the angels, touch my work and bring it to the public.
“Don’t cuss, call Gus. He will cuss for all of us!” Gus may even be of Nobel descent.
Actually, it’s a common misconception that spontaneously blurting out swear words is a prominent feature of Tourette’s syndrome. In 1885, Dr. Georges Gilles de la Tourette, a French Neurologist, described the disorder in an 86-year-old noblewoman. A detailed account of the syndrome is available on the website for the National Institute for Neurological Disorders and Stroke (ninds.nih.gov)… but here are a few highlights.
Tourette’s Syndrome (TS) manifests in early childhood, gets worse into the teenage years, and then begins to improve throughout adulthood in most who are afflicted. It is three or four times more common in males than females, and approximately 200,000 Americans suffer from the most severe form. However, about one in 100 people may have a mild “tic.”
Symptoms range from an occasional facial twitch or vocalization, like a barking sound or blurting out an obscene word (coprolalia), to complex bending or twisting motions involving the entire body (simple vs. complex tics). Simple vocal tics may include sniffing or snorting or just clearing the throat. More complex tics may involve movement in several, but a limited number of motor groups and even be combined with a vocal tic; for example, clearing the throat, turning the head and shrugging a shoulder all at once. Many sufferers describe an urge to complete the tic prior to doing so, and this can only be relieved by its completion. Tics are often worse when the person is excited or anxious and better when they are relaxed or asleep, though they are not absent in sleep. They may also be triggered. A tight collar may precipitate a tic involving neck movement, or hearing another person clear his/her throat may precipitate the same in a Tourette’s patient with that particular tic.
While tics are involuntary, some people can suppress, control or camouflage their tics temporarily to limit the social disability. However, those who do, usually report a buildup of tension relieved only by an occurrence of their tic. Most individuals with TS also experience some sort of pre-tic sensation just before a tic starts (such as a feeling of flushing or energy in the area), although identifying these warning signs may require some training.
The exact cause of TS is not known, and given its myriad of manifestations, it is likely to involve many and varying brain structures and neurotransmitters. There appears to be a link between TS and other neuropsychiatric disorders such as Attention-Deficit Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD), both of which occur more frequently in people with TS than in the general population. Diagnosis of TS can sometimes be missed because people with TS (and their families) may not realize that the repetitive actions or vocalizations are tics until someone knowledgeable about the condition points it out or they read about it.
Treatment of TS often involves the combination of medications and specific behavioral therapies. If the tics are mild, do not cause injury and do not cause substantial interference with the individual’s educational, social or work performance, then effective treatment with behavioral therapies and without medication may be possible.
A variety of medications are used in the treatment of TS, affecting different brain chemicals. Most medications used for TS were initially developed for other neuropsychiatric or medical conditions, but then secondarily found in research trials to reduce the symptoms of TS. The choice of medication is often guided by whether there are other neuropsychiatric conditions (such as ADHD or OCD) to treat concurrently. Finding the best medication (or medication combination) for a particular individual may require trial of a few different agents, as well as careful adjustment of doses.
Behavioral therapies for TS can greatly reduce the severity and frequency of tic behavior. They should be undertaken with a therapy professional that is both knowledgeable about TS and trained/experienced in conducting the specific type of behavioral therapy being used.
The most thoroughly studied behavioral therapy for TS is Habit Reversal Therapy (HRT). This treatment is divided into two main components: 1) developing tic awareness and 2) creating a competing response. During tic awareness training, people with TS learn to identify all their tics; notice their tics are occurring and become aware of the pre-tic sensations warning them a tic is imminent. During competing response training, people with TS choose (in collaboration with their therapist) a new behavior to implement when they start to feel a tic coming on. The key is to choose a behavior that is incompatible with the tic behavior. For example, if the tic involves shrugging the shoulders, the individual might choose to cross the arms in front of the body. Since the brain cannot initiate two opposite motions at the same time, with practice the new behavior can replace some of the tic behavior.
Another behavioral therapy approach that has recently been developed and studied is Comprehensive Behavioral Intervention for Tics (CBIT). CBIT includes HRT as one component, but also includes strategies such as relaxation training, education about TS for the individual and family (and sometimes others, such as teachers) and assistance in identifying and altering environmental triggers that worsen the tics. For example, if tics are particularly bad in a specific class at school, the therapist might help the individual determine why and develop a plan to reduce the stressor (e.g., discreetly moving the child’s seat away from a stressful social group or arranging tutoring if poor academic performance is increasing the tics).
by E. Thomas Chappell, MD and Gillian Friedman, MD