"Sometimes When I'm in the Middle of an Attack, People Think I'm Making Fun of Them"

It happened for the first time when she was 15 and a half. Tali Breyer was then burning up with a high fever of 104, alongside a streptococcal throat infection she was suffering from. As she lay on the couch, almost fainting, her arm and leg suddenly began to twitch together in a strange way that she had never experienced before: "I didn't understand what was going on, it felt so right and okay on one hand, and so strange on the other. It was as if my body needed to release stress somehow, and this was the way to help it. Only later did I realize it's stress that others don't have and my body is releasing it."

Tali, now 25, is diagnosed with Tourette Syndrome. In her personal life, she is the second of four children, raised in a religious home in Petach Tikva, and studied in regular schools. While the syndrome has a genetic component, no one in Tali's family has ever suffered from it, as far as they know.

Besides that, Tali is also a student at Bar-Ilan University, studying comparative literature and humanities, and works as an assistant at a school for low-functioning autistic children. For her, the path to diagnosis was long and unbearably difficult. She endured significant humiliation: a girl, walking around for nearly a decade with a disorder that appeared out of the blue and caused her anxiety, without anyone believing her story was real. "I have been suffering for years from complex PTSD due to ongoing sexual abuse in my childhood, and in the past also dealt with anorexia. So when the 'tics' characteristic of the syndrome began, everyone around me, including the doctors and psychiatrists who treated me, were sure I was making it up for attention. One day a friend who knew me and suffered from a similar tic disorder saw me during an attack. He immediately believed me and said I had to see a neurologist for diagnosis, recommending the neurologist treating him."

About two years ago, she met the neurologist whom she considers to have saved her life, an expert in Tourette Syndrome, who diagnosed her immediately and provided a name, and also alleviating treatment, for her long-standing suffering.

Was it difficult to suddenly receive a diagnosis for a syndrome you'll have to deal with all your life, and understand its implications?

"Despite all the pain, I am still immensely grateful, it was like a weight lifted off my heart. Suddenly it had a name, suddenly someone believed me, and gave me a life-saving treatment."

"I Live in Constant Life-Threatening Danger"

So what exactly is Tourette Syndrome? It is a neuropsychiatric disorder exhibited by repeating motor and vocal tics at an irregular pace. The motor tics include blinking, jaw movements, neck, shoulder, or limb movements. The vocal tics involve actions like sniffing, throat clearing noises, and grunts.

Tourette Syndrome has different levels of severity. In more severe, though much rarer levels, the tics cause self-injury, like self-harm or biting, and vocal tics containing obscene verbal content, curses, and insults toward others.

The appearance of tics is influenced by factors such as stress, anxiety, excitement, and fatigue. Some activities temporarily eliminate the tics, usually those requiring attention and fine motor control, like reading aloud, playing music, and sports.

In Tali’s case, it's one of the more severe ones. "Most people with Tourette's don't have it like I do. Most have mild Tourette's characterized by very mild tics, and there are those with a severe degree, like mine. You can't get any further from me," she jokes. "I suffer from motor tics, vocal tics, chest-upward tics, tics of all kinds, including those that harm me and threaten my life, dislocating joints, causing concussions, and even displacing the crystals in my ear leading to balance issues."

For treatment, she uses medical cannabis, which she claims has significantly improved her quality of life and reduced the frequency of tics – but also led to other physical harm. "There is no cure," she explains. "There are only things that can relieve it, like cannabis and antipsychotic medications that can calm, but for me, they also paralyzed, they increased the tone in my whole body, today I walk with a cane because of them. I had to re-learn how to walk, really work on my walking to get back to walking like everyone else. I've also made medicinal changes to less harmful medications, but it's still about choosing the lesser evil." Additionally, and surprisingly, Tali describes that when she pets animals, like her black rabbit 'Tar', the attacks vanish entirely.

How does it affect your life?

"I have to vaporize medical cannabis every hour and a half, or it could lead to a concussion due to the intensity of the tics. I need to be surrounded by cannabis and medications from every angle and always be on guard that an attack could happen during the day. So I'm living a normal life, but alongside it is always the danger of an attack over my head."

Are there things that worsen the Tourette's?

"If I'm stressed, not calm, anxious, or in an unsupportive or excited environment – then my Tourette's worsens. Besides, there are generally no tics during sleep, that's rare, but I have them because I have to be rare and special," she laughs, "sometimes I even wake up from it and sometimes not. In the past, it was dangerous because I'd hit my head, but they found a medication to stop it, and my bed itself is padded."

"I've Learned to Laugh at My Tourette's"

And there are also the different circles in Tali's life, similar to many other sufferers, that Tourette Syndrome affects deeply. One of the most significant and difficult ones is the social circle. For example, in the past, she lived with roommates, but when her Tourette's worsened and she was in life-threatening danger – she needed a safe and padded place for severe attacks, so she returned to her parents. Since then, though her condition has improved, she chooses to remain living at her parents' house, who are already familiar with the syndrome and accept it. "Tourette's is a family member, they're used to it," she describes.

But when leaving home, in spaces where the syndrome is less familiar – there are quite a few costs, and she encounters harsh, not to mention offensive and sometimes threatening reactions. "On buses, in clinics, and malls, they curse at me, mock me, stare at me, and wish me all sorts of 'great' things. Today less so, because today more people know me in Petach Tikva, the city where I live, but once it was really bad, all the time they would curse at me and mock me. Today it still happens, but less because there's more awareness. Today it's mainly staring."

Among the many embarrassing situations she has faced, there are a few she particularly remembers, like a whole line at the supermarket that just chose to imitate her and laugh at her; a difficult situation where she suffered severe verbal abuse from a bus passenger; and also a situation where it was right in the middle of Yom Kippur, in the synagogue, and she felt deeply embarrassed. "Everyone was standing and praying, preparing to sing 'Next Year in the Rebuilt Jerusalem'. There was silence, a sense of sanctity in the air, and suddenly my Tourette's yelled out a juicy curse... and everyone looked and burst out laughing, it was an embarrassment I'll never forget."

How do you cope?

"With humor, with cynicism. I've learned to laugh at my Tourette's, otherwise what good would it do if I cried about it? It also helps me not to get hurt by people's reactions around me. Even though it hurts, I do it with a smile. Besides, I always explain, every day, that it's a syndrome: I was born with it, I can't control it, it's neurological, there's nothing to be done. People sometimes apologize, go quiet, sometimes they're embarrassed, it depends on the person. Many times they apologize when they realize they misjudged me."

And she has another significant way to cope. Tali describes discovering writing at the age of five, before the Tourette's, and it became her constant therapy. Since then, she has published a book of poems about two years ago, called "Recipe for Broken Cookies", mainly describing her struggle with the sexual assault she underwent. These days she is in the process of publishing a second book, which she chose to dedicate to her experience with Tourette Syndrome.

Along with coping, what are your dreams?

"To be a mom, and to teach a class. I've dreamed of being a mom since birth..."

Do you see positive sides in this struggle?

"Thanks to my Tourette’s, I’ve learned about sensory regulation and how to help other children and adults with Tourette’s in the area of sensory regulation and balancing them, with the help of an occupational therapist I know. Besides, I also help mothers of kids with Tourette’s, giving them hope. When they meet me, they understand from me that it's possible to live with Tourette's in any degree of severity. Maybe initially I wouldn't have chosen this struggle, but today it is totally a mission for me, and I wouldn't trade this with anyone else's."

Tali Breyer was interviewed for the program "Travel Diary", hosted by Hani Lifshitz. The full recorded interview will be published soon.