“Why are you doing that?”
“Why are you making those faces?”
“Stop making those noises.”
“Get a tissue already.”
These and many more were the comments my nine year old self had to endure as my Tourette’s Syndrome (TS) became more and more pronounced. What made it worse was that each of these questions and comments had the same response – “I don’t know”. It was like I had no control over my body. It would move when I wanted it to be still and make noise when I wanted it to be silent. It was almost a relief to be diagnosed with TS as I could then answer the questions thrown at me in a way that I could not before. Why did I make that face? I have Tourette’s. Why did I make that noise? I have Tourette’s. Do I need a tissue? No, thank you. I have Tourette’s.
As I learned more about this disorder, I was able to give more meaningful answers. I was able to explain what TS was and how it causes random physical movements and vocal outbursts. I could explain that they are unsure of its cause and that there is no cure though researchers believe the condition to be hereditary. I even joined a support group with other kids my age so I could see that I was not alone in trying to learn to live with TS. This helped me in that I could see that others out there had this disorder also. Yet I still felt alone. I felt like an outsider in the group as I was the only girl. Twenty-two years later, I have yet to physically meet another female with TS – though I have seen some on documentary videos and YouTube.
Growing up with Tourette’s Syndrome
Growing up with TS can be a harrowing adventure. It can be full of ups and downs that can make or break you. Dr. Gary Shady – a psychologist with MATC who has been working with children and adults living with TS – has stated that, since he first heard of TS in the 1980s, he has found that the ordeals that his clients have gone through – such as bullying and misunderstandings – have taught him what true courage means. Since that time, it has become easier to treat and relate to TS patients as more has become know about this disorder but some older people with TS did not have the advantages of TS youths today. They were raised by parents who did not understand the disorder – or even know about it – and thought their children were merely acting up or restless. This caused much conflict in families with TS pre-1980s.
First reported in 1825 by Dr. Itard and described in 1883 by Dr. Georges Gilles de la Tourette – after whom it is named – the disorder has become better known in recent years due to breakthroughs in TS research – aided by such fundraisers as the Wogie Golf Tournament (no longer active) and the Trek for Tourette (for more information on this event go to https://tourette.ca/ways-to-get-involved/donate-fundraise/trek-for-tourette). From the later part of the twentieth century until today, children are able to be diagnosed earlier and given resources to assist in learning to live and thrive with this disorder. A small percentage of children with TS can even lose their tics in adulthood to the point that their disorder is almost non-existent.
Tics often become intensified in situations of high emotional stress or sensory stimulation – though people can control the unwanted noises and movements for a time. Exerting the will to stop a tic, however, can not only make the tics worse, it is also taxing physically and emotionally. A cousin of mine with TS stated it in this way:
“Imagine holding your breath. After a while, your mind, body, and lungs all begin to scream out for oxygen. And then you inhale…and you feel relieved. That’s what it feels like. [It is that] feeling, but in, say, your shoulder. It feels like it is suffocating until you move it. It might hurt to move it in the way your body wants it to, but you crave that feeling you get when you do tic. It’s as relieving as taking a breath.”
Even though allowing your body to tic can be as pleasurable and necessary as breathing, it can also be very damaging. Most tics are small or inconsequential – more annoying and uncomfortable than anything else. Some tics, however, can place the individual at risk of physical danger – whether directly (punching yourself in the face; banging your head against a wall) or indirectly (getting distracted by a tic and walking into traffic; saying or doing the wrong thing to the wrong person). Some tics can even put other people in danger such as grabbing a steering wheel while someone is driving. According to Dr. Shady, these types of tics are rarer but have been known to occur. Some tics can also be quite scary to the individual involved. For example, over the years I have had a periodic tic in my diaphragm that would not allow me to catch my breath. Because of having almost drowned once in my youth, I have an inherent fear of suffocation and, as such, experience moments of terror when this tic occurs and am grateful that it does not come more frequently or last very long.
“You Can’t Even Tell”
When I tell people that I have TS, one of the comments that drive me crazy is, “You can’t even tell.” This statement causes me to grind my teeth because I can tell – I know each and every time that my body does something that I do not want it to do. My tics feel so big and obvious that I believe others must see them and I cannot help but respond to this comment by stating, “Yes, I can tell.”
Perhaps one reason that my TS isn’t as obvious to others as I feel it should be is because their misconception of what TS is. Many people when they think of TS will immediately think of excessive, compulsive swearing. This is a stereotype that is spread through such Hollywood movies as Deuce Bigalow: Male Gigolo (1999) and The Pest (1997). The reality is that only an approximate 5% of people with TS have coprolalia (the excessive and uncontrollable use of foul or obscene language).
“Flawed for a Purpose”
Like many people living with TS, I have suffered most of my life with self-esteem issues. I always felt that there was something wrong or defective with me and that my friends only tolerated me and my tics because they felt sorry for me. I believed that God must have hated me or I must have done something wrong to have been “cursed” with this. Some people that I have spoken to regarding their TS have shared that they felt their disorder brought them closer to a God who loves all his creations and accepts all equally, while others shared similar sentiments to my own.
It was about eight years ago, that I was finally able to accept my TS as a blessing rather than a curse and it all began with my sister offering to go through The Purpose Driven Life with me. Over the course of the next forty weeks – one chapter a week – we came to understand God and purpose in a different way. For me, the beginning of understanding came in Chapter Two when Rick Warren says that God doesn’t make mistakes and that he “left no detail to chance.” Later, in Chapter 35, he encourages his readers to accept that they have a lot of flaws and imperfections because “your weaknesses are not an accident.” God put our weaknesses, flaws, and imperfections there for a reason – to be used to his glory.
As I meditated on this book, I was reminded of John 9:2-3. The disciples asked Jesus who sinned for a man to be born blind and he replied that “This happened so that the works of God might be displayed in him.” This reflection led me to see that God gave me TS for a reason and that it does not make me different in a bad way but in a special way. I feel blessed when I look back on my life and imagine what a different person I would be without TS. It has caused me to have a compassion and understanding of differences and hidden difficulties that I might not have had. This understanding has led to blessing in life, family, and friends, and allowed me to be able to help my son when he began to exhibit symptoms as well.
By Herta Neufeld
Winnipeg, Manitoba, Canada
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