Tourette Syndrom Awareness Month

Tourette Syndrome Awareness Month is May 15 to June 15, 2019, named after Dr. Georges Gilles de la Tourette, the French neurologist who, in 1885, described children and adults with specific tic movements.

I’ve had Tourette’s since age 10-11, starting within a year after my family moved from farms to city life. It was an extremely emotional, disruptive time in my life to leave my close friends and country life behind.

I’ve always believed it was that stress which precipitated my tics, but now understand there is a genetic component. Most of my life I’ve been embarrassed and ashamed to admit I have Tourette’s. Nor did my parents know what to do about it. I was initially mocked, but quickly learned to hide or camouflage the tics with movements that wouldn’t be recognized as readily. Though I can successfully “hide” the tics, they have to have an out and are worse when I’m out of the public eye.

I diagnosed myself after reading a letter in Ann Landers’ column in my mid-20s. What a relief to give my affliction a name! Still, I only shared this information with my husband and closest family. Though embarrassed to watch myself in a family video, I have not let Tourette’s control my life or employment. I was 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 somewhat. But, I’m also thankful they are considered “simple” tics.

Just as I’ve been ashamed of my movements, so my husband was ashamed of being legally blind growing up. 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, and become ashamed of who they are… with too often devastating effects. It’s up to us as adults, and even children, to be aware of the issues others around us are dealing with. If we provide the support, acceptance and encouragement as The Network promotes, we will see ourselves for who we truly are, uniquely created in the image of God.

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 in my mind only, and more. I have an arthritic bony prominence of my collarbone from life-long shoulder shrugs, and thoracic spine pain/arthritis from prior movements. The tics wax and wane, change muscle groups at whim, and become much worse under stress.

Though the tics have never gone away, they often subside, albeit briefly, when I’m fully absorbed in something like singing, or sleeping. 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.

Tourette Syndrome is a neurodevelopmental disorder with typical onset in childhood or adolescence. Considered genetic, there is no cure, but there are some treatment options. About 30 years ago, I was officially diagnosed by a neurologist and prescribed medication. Unfortunately, the dopey side effect for me was worse than dealing with the tics, so I have 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, 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 (me!), attention deficit/hyperactivity disorder, and learning disabilities.

Guidepost magazine has featured contemporary Christian music singer, Jamie Grace, also diagnosed with Tourette’s. Reading the article about her, I burst into tears just to know that someone else has it and has overcome it, too. I always felt so alone, never knowing anyone else with Tourette’s until I recently opened up on Facebook about it.

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. More often than not, as we go through the trials of life, that’s when we learn how to trust and rely on the Lord the best. For He uses us and our difficult circumstances to reach others who may be dealing with similar issues, bringing His love to them in a way that’s as unique as we each are individually.

This blog was originally posted on the “Network” https://network.crcna.org/disability-concerns/tourette-syndrome-awareness-month , the online resource of the Christian Reformed Church of North America.

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