For most children, the thought of playing hide and seek is exciting. But as a child, Esha Alwani’s vocal tics would soon betray her, and the classic play fueled her shame and grief over her neurological condition.
At the age of two, Alwani’s parents began to notice that she was pinching her nose and making high-pitched beeps. Five years later, she was diagnosed with Tourette’s syndrome, a condition that causes involuntary sounds and movements called tics.
Over the years she tried various drugs to suppress her symptoms, but some gave her hallucinations, and one even led to short-term paralysis. “I remember the specific moment it happened,” says 20-year-old Alwani i† “My mother came to wake me up and as she opened my curtains I tried to get out of bed. I could turn my hips off the bed, but when it came to my feet touching the floor, I couldn’t move.
“I started flipping. My mother tried to help me up, but when my legs felt the weight of my body, I felt a piercing pain. After that I was in a wheelchair for three weeks.”
A number of drugs are used to treat Gilles de la Tourette, from antipsychotics to Botox injections — none seemed to work for Alwani. But she now realizes that the medication that can help her tics has been around all her life: music.
Alwani remembers making music at a young age, but it wasn’t until she was 12 that she realized the impact it had on her life. “Looking back, I understand that the reason I was so obsessed with music was because it made me feel serene. It still does,” says Alwani who opened as a performer for Alicia Keys. “I fell in love with music very quickly and from an early age. I’ve always sung or played instruments.”
She first performed publicly in 2015 at a school talent show, where she became one of two acts to take the stage at a graduation event. It was then that she realized that not only her family and piano teacher liked her music. “I love performing because it’s the only experience in my life that can put me in a stressful situation without even tapping once. I feel so in control of my body.”
Alwani notices that her stress level rises before a performance, but the stress-free period on stage and the calming nature of singing make it worth it.
She’s not the only person with Tourette’s who finds music therapeutic. An article published in the Journal of Neurological Sciences concluded that active and passive participation in musical activity reduced tic frequency, with the greatest effect for those performing. The most important factors in symptom management appear to be the use of fine motor skills, focused attention, and goal-directed behavior.
In the UK, Tourette’s affects one in 100 schoolchildren, and 300,000 adults are living with the condition, which often goes hand-in-hand with OCD and ADHD. But many people have never heard of it, or believe that the main symptom is involuntary swearing, which affects only a small minority with the condition.
Musician Jesse Jett, 33, who also has Tourette, would experience a “fit of tics” for an hour before taking the stage when he first started playing at age 14, but he wouldn’t tic once if he put on a show. He was officially diagnosed in Florida when he was 13 years old, after several years of exhibiting symptoms and noticeable tics such as opening his mouth wide and his face grinding.
“It was hard to explain to other kids, and frankly adults too,” said Jett, who lives in West Michigan with his wife and five-year-old son. “The best response I’ve ever had was that it was like I was trying not to blink. You can stop for a while, but eventually you have to blink and then you may have to do it a few more times because you put it off.
Jett’s symptoms started to subside when he was a teenager. Now he only experiences tics well when he is stressed. “There are still a few that I do every now and then, but they’ve become such a subtle part of my mannerisms now,” he says. ‘They are not only cathartic, but also a little comforting in a strange way. Mainly because it was such a big part of my childhood.”
From the age of eight, music has been a haven for Jett, as it is the only time he is 100 percent tic free, and he has been performing his entire adult life, both as a full-time or part-time job.
Music has a strong healing power, even for those who only listen to it. Studies have shown that music increases the amount of dopamine in the brain, a neurotransmitter that plays a key role in cognitive, emotional and behavioral functioning.
Unlike Jett, Alwani has not seen her symptoms diminish with age. But making music has helped her live with it.
“Music gives my body and mind a break,” she says. “I still can’t play hide and seek, but I’ve learned to accept it and find an option that works for me. I understand that this is who I am and that Tourette’s is not something I can change.”
Tourette’s Awareness Month runs from May 15 to June 15, 2022
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