I Fly Under the Radar

Posted 9hrs ago
by Jill Metcalf

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by Jill Metcalfe

I was thrilled when Tourettes Action asked me to share my story. I love being a part of this community.

I’ll start by saying that so many people with Tourette syndrome (TS) suffer greatly and have so much more to contend with than I do. You have my respect and my admiration. I have mild TS, so I can ‘fly under the radar’.

This is my story.

In 2000, we lived in Sydney, Australia. I was in my 40’s and worked as an editorial coordinator at a medical publishing company. One day, I had to phone the Tourette’s Association of NSW to update their details. That call changed my life and answered some lifelong questions. As I spoke to the then president, she said: ‘A lot of people don’t realise that TS can manifest with simple tics like throat clearing, sniffing and coughing.’

I’d had a life-long habit of all three, as had my father and grandfather. When she said this, a chill ran up my spine. I knew I’d been given life-changing information. You see, I’d unwittingly masked my tics and quirks my entire life.

I stayed late at work and did some research. When you know there is something ‘different’ about you, you’re always looking for answers. What I read blew my mind. Not only did I see parts of myself, but parts of my father and grandfather. I also saw a lot of comorbid stuff amongst family members.

I took information home that night for my husband Laurie to read. He read it and agreed with my ‘self-diagnosis’ that I had TS. The next step was to have a professional assessment carried out.  I was referred to a preeminent TS expert, Professor Preminder Sachdev.  So, on the 16^th May 2000, after a long consultation, Prof Sachdev gave me a diagnosis of mild TS. Boy did that diagnosis explain a few things. Finding out changed my life and gave me a gift.

Post diagnosis, I was on the fundraising committee of the then named Tourette’s Association of NSW. During that time, I met some amazing people with mild, moderate and severe TS. I am in awe of how those with moderate to severe TS cope with their lives. I know that the love of their family and friends is a big part of that, but it is their courage that gets them through. Speaking of courage, I loved the movie “I Swear.” It encapsulated the strength and courage of John Davidson and many others.

When I was on the fundraising committee, it saddened me to see how distraught parents of newly diagnosed children were. To help them understand and explain TS, I wrote Harry & Honey – Two Unlikely Friends, as a ‘gift’ to all children (young and old). You can find that story under ‘Books’ on my author website.

Over my life, I’d been referred to as ‘quirky’. I’d had people say ‘I see you still have that annoying throat-clearing habit’ and ‘Jill, relax, slow down, don’t get so excited’. Now that might not sound like a lot to deal with but remember, for over 40 years I heard this. I had no idea I had TS. I just knew that I had to ‘sit on myself’.

I’m prone at times to becoming overstimulated. My take on that is that TS has given me what I can only describe as a gift, a vision of our world which is spectacular. I’m constantly in awe of the beauty I see. Okay, on the downside, I can sometimes acutely feel things that aren’t too nice. I see it as a trade-off.

I now realise that having TS was the reason I’d always struggled at school. Not excelling scholastically has never held me back career-wise. I’ve had three career changes in my life and I found each highly satisfying, with one being a well-paid, managerial position.

My compulsions – I thought everyone counted stair steps as they walked up them, read numbers on trains and car number plates, checked to see if the door was locked – 3 times. I’m hyperactive at times, and I have ADHD and a touch of OCD. The list goes on but I’m sure you get my drift. Sleep disturbance is another negative. I’ve learnt not to fight it and at times when I can’t sleep, I get up and write, sketch or paint. My cat loves my crepuscular risings. He loves my company.

I’m an author and I’ve written two novels in the Hunter Valley Mystery Series – Ice Valley and Operation Glass. The series follows Pip Mason a neurodivergent woman living with Tourette syndrome. I wrote these novels to both entertain readers and to demystify TS by giving people with TS a voice. I’m over having people say to me when I tell them I have TS – ‘Oh, you aren’t going to swear at me, are you?’ or ‘What’s Tourette’s?’ The links to my author website and both novels are below.

Since 2000, my eccentricity now has a name. I have mild Tourette syndrome and I’m proud to acknowledge this. I not only accept my TS – I embrace it.

You can visit Jill's author website here

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