Living with Tourette Syndrome is hard.
Being different is hard.
Standing out from the crowd from unwanted attention is hard.
Hearing the words, "Tourette Syndrome" escape the doctor's mouth, your mind is instantly filled with questions like, "What does this mean?", "Is there a cure?" and "Will it go away?"
None of which have an answer.
My name is Seamus Evans, I am 32 and was diagnosed at age 10. All this meant for me and my family is that we now had a name for my "Habits" as we affectionately called them.
I still remember it as though it was yesterday, we walked out of Brisbane's Mater Hospital and into the La Vazza Café across the road. Having been there after every appointment with the doctor for the past year I grew an affection for my favourite meal. A ham, pineapple and cheese open melt sandwich with a chocolate milkshake.
I had always liked the idea of being a regular at a café and saying to the wait staff, "I'll have the usual thanks". As we lined up patiently in the queue, finally it was my time to shine and the words, "I'll have the usual thanks" Shot out of my tiny mouth looking up at the lady behind the cash register.
Catching my mother off guard she embarrassingly ushered for me to politely ask for what I wanted off the menu. Thankfully the young waitress had remembered me from the previous visits, she looked at me with a smile and said, "Ham, cheese and pineapple open melt with a chocolate thick shake?"
I was over the moon, I felt like I was Leonardo Di Caprio in The Wolf of Wall St. My prepubescent face lit up with a smile and my little chest puffed out. I thought I was the local 'cool guy' with a reputation about town.
That was the day I got diagnosed.
After that, there were no more visits to the doctor and I never stepped foot inside that café again. It was up to me from then on to deal with these uncontrollable tics I didn't choose.
You can’t order your life off a menu!
"You cannot control the cards you are dealt with in life. But you are in control of how you play the hand."
It took me many years to learn the second part to that saying.
Being disengaged in class, having Tourette Syndrome and ADHD, I failed school. But I had high hopes, big dreams and even bigger aspirations. I wanted to be a TV star!
I know what you’re thinking, "No way could that EVER happen".
As luck would have it, at 18 I landed my first TV gig with Network 10 on a kids show. However, due to these uncontrollable tics from the diagnosis 8 years earlier, trouble stood in the way.
We had to cut perfectly good takes because I was ticcing, dragging out shoot days way longer than scheduled.
After some hard words from management and extreme self-doubt, my dream career was about to be flushed down the toilet. That is when I learned the second part to the cards saying.
"You are in control of how you play the hand."
I decided from that moment on, my adversity will never stand in the way of my goals. That I will never let a diagnosis determine my future. That I will not let my Tics control me, instead I will control my Tics.
Afterall, we are the authors of our own life. We cannot control the twists, but we can rewrite the plot line.
Days, weeks and even months went by experimenting with my tics, trying new ways to "scratch that itch" satisfying my brains messages to the body, getting the "stone out of my neurological shoe".
My head flicks became tummy rolls, my shoulder shrugs became butt clenches and my excessive blinking became one big solid blink.
Turning my grunts into throat clearings, my squeals into low hums and words into mimes seemed impossible, but I knew I couldn't stop trying.
Why? Because I had something driving me, a burning desire and a sense of purpose. To be the best damn TV presenter the world has ever seen. Move over Karl Stefanovic, Seamus Evans was in town.
As time went on, we weren't cutting takes during filming anymore and my tics were being disguised. I learned how to redirect them into other areas of my body that wasn't seen on camera.
My TV career lasted a total of 7 years. If I had given up after that first week, I would have been on seek.com the very next day looking for a job that my heart wasn't in.
Years later, I came to learn this is a technique called, "CBiT". Cognitive Behavioural Intervention Therapy. I never learned it from a doctor or a professional, I just rolled up my sleeves and did some good old-fashioned emotional labour. With tremendous amounts of trial and error but most importantly, resilience.
I went on to host breakfast radio shows all over the country and had an amazing media career for 14 years.
Now I am an ambassador for Tourette Syndrome Association Australian and share my story all over the country at conferences, businesses and schools inspiring people to overcome their adversity and build resilience to chase their dreams just as I did.
All the time I get asked, "How can I live with my diagnosis?"
Wow, what a hard question to answer in front of 2000 watchful eyes. Unfortunately, my honest answer is never well received. "Adversity never goes away, it can be a flaw or a strength, that part is up to you. The good news is, you have a lifetime to figure it out".
No one has a magic wand, life is hard. Everyone struggles, no one's struggle is more or less. Struggle is struggle.
How do we climb a mountain? One step at a time.
How do we live our lives? One day at a time.
How do we eat an elephant? One bite at a time.
And how do we live with Tourette Syndrome? One tic at a time.
Life is one giant pool and we are all in our own lane, so in the words of Dory, "Just keep swimming".