Today, I’m sharing something close to my heart. I’ve shared this before, but it bears repeating because I am not alone. Tourette Syndrome Awareness Month is May 15 to June 15, with the annual Tourette Syndrome Awareness Day on June 7, 2023. Tourette Syndrome was named for a French neurologist, Dr. Georges Gilles de la Tourette. He was the first to describe children and adults with specific tic movements in 1884, publishing his study about this syndrome in 1885.
I’ve had Tourette’s since age 10-11, starting within a year after my family moved from farms in upstate New York to city life in Clifton, New Jersey… the city where I was born and my dad grew up. It was an extremely emotional, disruptive time in my life to leave behind my close friends and the country life I loved… and preferred.
Always believing it was that stress which precipitated my tics, I now understand there is often a genetic component, though I have no idea who may have had it in any older generation. Most of my life I was embarrassed and ashamed to admit I had Tourette’s. Nor did my parents know what to do about it. I was initially mocked, and quickly learned to hide or camouflage the tics with movements that wouldn’t be as readily obvious. I am constantly “on alert”. Though I can generally successfully “hide” the tics, or so I think, they have to have an out and are worse when I’m away from the public eye or under stress.
I’ve called the tics “my habit”, but never had a diagnosis until reading a letter in a Dear Abby or Ann Landers column in my early 20s. Self-diagnosing from the apt description in that letter and response by the columnist, I felt such a relief to give my affliction a name! Still, I only shared this information with my husband and closest family. Though embarrassed and ashamed to see myself with tic movements in a family video, I have not let Tourette’s control my life or employment. I was also afraid of passing it on to my children, but I wanted and was blessed with a family. I’m aware of the tics, and am able to control them… but only somewhat. And I’m also thankful they are considered “simple” tics.
Just as I’ve been ashamed of my movements, so my late husband was ashamed of being legally blind growing up. (He read and approved this when I initially wrote it.) He couldn’t see the school blackboard with his limited vision, even sitting in the front row, and would not ask for the help he needed. Kids don’t want to be different from their peers. When they have a noticeable difference, they are too often teased or mocked like my husband was, and become ashamed of who they are… sometimes with devastating effects, like suicide. It’s up to us as adults, and even children, to be aware of the issues that others around us are dealing with. If we provide support, acceptance, and encouragement, we will see ourselves for who we truly are - uniquely created in the image of God, and very loved.
While subbing one day, I was surprised by a young student who kindly asked, “Do you have Tourette’s?” Seeing no point in denying the obvious to those sweet innocent eyes, I replied, “Yes, I do. But how do you know about Tourette’s?” She’d watched a show. As kids often do, they talked amongst themselves and others began asking me questions. This led to their teacher setting aside time so I could share what I knew about living with Tourette’s. I answered their many questions with several adding they knew someone with Tourette’s, too! It was an informative session, endearing these students to me for their kindness and understanding. They simply accepted me for who I am, just as I accept each of them.
Tourette Syndrome is one type of tic disorder, meeting certain medical criteria of involuntary, repetitive movements and vocalizations, lasting for specific lengths of time. My “simple” tics include, but are not limited to, sudden brief, repetitive movements of certain muscle groups like hard eye blinking or scrunching (the first symptom for most, including myself), facial, mouth, and head movements, shoulder shrugging, arm, hand and finger movements, head and shoulder jerking, leg and foot movements, throat clearing, repeating words or phrases verbally (or in my mind), and more. I have an arthritic bony prominence of my collarbone from decades-long shoulder shrugs, and thoracic spine pain/arthritis from prior movements. Tics wax and wane, change muscle groups at whim, and become worse under stress.
Though the tics have never gone away, they often subside, albeit briefly, when I’m fully absorbed in something like singing, sleeping or designing paintings. Totally absorbed while playing intently with my toddler son years ago, my step-mother commented that my tics had totally stopped during that brief window of time. That was the first time I realized there really were times when “my habit” stopped!
Tourette Syndrome is a neurodevelopmental disorder with typical onset in childhood or adolescence. Chemical imbalances in the brain, environmental factors, or genetics are considered causative factors. There is no cure, but there are some treatment options. About 35 years ago, I was officially diagnosed by a neurologist and prescribed medication. Unfortunately, taking just half a pill of the smallest dose, the dopey side effect for me was much worse than dealing with the tics, so I declined further medication.
I do not have “complex” tics which include distinct patterns with multiple muscles and movements, hopping and twirling, head banging, and more. Vocal tics can include sniffing, throat clearing, shouting, saying words or phrases, and repeating what was heard. Though swearing and unacceptable language are found in a small percentage of Tourette cases, the media often describes coprolalia as a more common symptom. My heart goes out to those with this more severe and disruptive range of tics, some of whom may qualify for disability benefits. Many with Tourette’s also have other diagnoses including obsessive-compulsive disorder, hyperactivity (possibly me), attention deficit/hyperactivity disorder, and learning disabilities.
Guidepost magazine once featured contemporary Christian music singer, Jamie Grace, sharing her diagnosis of Tourette’s. Reading the article about her, I burst into tears just to know that someone else has it, but has not let it stop her from living a full life, too. I always felt so alone, never knowing anyone else with Tourette’s until I opened up about it a few years ago on Facebook.
Looking at this from God’s perspective, I find it comforting to know He sees me for who I am, Tourette’s and all. He has a greater purpose for our lives as we bring honor and glory to Him in all that we do, even with our limitations. Often, as we go through the trials of life, that’s when we learn how to trust and rely on the Lord the best. In overcoming our own problems, God uses us and our difficult circumstances to reach others who may be dealing with similar issues, bringing love and comfort to them in a way that is as unique as we are each gifted individually.