Dear Cape Breton. Thank-You.

As the calendar page turns to close September and open October, a few things are worth noting. Firstly, the beautiful Fall colours are on their way and the parade of picturesque photos from all over Cape Breton will be finding their way to social media sites and shared all over the world. Secondly, the memories of how hot this past Summer has been will be quickly forgotten as thermostats will be cleared of dust and cobwebs to help take the chill away as the mornings grow cooler. Finally, the smile on my face continues with the realization that my pride in the people of Cape Breton and beyond has not been shaken.

With the negativity surrounding a number of topics that hit close to home hitting our senses via TV, Radio, and Social Media, I probably have to explain why I am smiling and why I feel so proud. 

You see, every cause and topic seems to have "it's day" on the Calendar, while some have a complete month dedicated to it. For example, October 1st is Treaty Day here in Canada, National Day in China, and Child Health Day in the US. But it is also International Coffee Day as well as Balloons Around the World Day. See what I mean? Anyway, I bring this up because September holds a special place in my heart and not because my kids start back to school or because the Christmas decorations are back in stores. It's because it is Dystonia Awareness Month here in Canada. While you may not know what Dystonia is, you may have unknowingly been introduced to it thanks to some amazing individuals I have had the pleasure of meeting and others whom I have already known. With their help, this past September has, without a doubt, been the most successful Dystonia Awareness Month I have ever experienced. Here are just a few reasons why.

In early September a photo appeared on my computer screen that inspired me, it was Toronto's CN Tower illuminated in blue, the colour chosen for Dystonia Awareness. Some courageous individuals and some kind-hearted people with influence had taken it upon themselves to help "shine a light" on the little known neurological disorder by simply changing the colours of digital lights to blue, thus starting what would be a remarkable month. Having heard countless stories from people who have battled for years to be properly diagnosed, struggling to be taken seriously, and pushing aside the ignorance from those they have looked to for medical help while others have lost their lives due to complications. I decided to channel my frustrations into supporting those who have been hit so much harder by this disorder than I have. With the endless support of my wife, Amber, and my two amazingly resilient daughters, Sasha and River, I re-started a journey I began years ago with the determination and goal of ensuring people would finally recognize the word, Dystonia.

Please, trust me when I say that this was not a journey I took lightly, nor did I feel it would be easy. With past comments and accusations of being an alcoholic and a drug-addict tossed at me from Medical Professional when Dystonia decided it was time to take a firm grip on my health, I admit, I was scared and apprehensive about putting myself on display or intentionally drawing attention to myself. Please also believe me when I say that the response received from the public was not something I was prepared for in spite of past experiences.

Drawing inspiration from the photo of the CN Tower, I decided to attempt a two-pronged campaign. With a successful, yet small, Twister Challenge fun day at the Robin Foote Elementary in Westmount a few years ago, I decided to steal from the ALS Ice Bucket Challenge and adopt the help of my kids to release a cheap looking video, released on Facebook, issuing a challenge to anybody I could think of in hopes it would catch on. Disappointingly it did not gain traction with single digit responses. That being said, it was ultimately viewed thousands of times and was shared all over the world by Dystonia Support Groups and Advocates but without any sort of Celebrity endorsement, it fell flat. 

However, the second prong of the campaign, again inspired by the photo of the CN Tower followed by the Calgary Tower and BC Place Stadium also being illuminated in blue, was a game changer. With the mindset of, "the worst they can say, is no", Amber and I decided that the logical first step would be The Big Fiddle. Everybody knows The Big Fiddle, and with tourist season, there would be elevated levels of traffic. I quickly fired off an email to some Representatives of the Port of Sydney detailing who I was, what Dystonia was, and how I felt they could help support the cause. Remarkably, just 16 minutes later, yes, 16 minutes, I had a reply from GM Paul Carrigan acknowledging my request. Just 3 minutes later, Administrator Samantha Ash was in touch to set up a meeting. After all the negative experiences and fights we have endured just to be seen by Doctors, I could already tell this was going to be different. A few days later, and just a few short minutes into a meeting with Ms. Ash, all my preparation and expectations crumbled. The Port of Sydney would not illuminate The Big Fiddle for a night in September. They would, instead, allow the iconic Fiddle to be adorned in blue for the remainder of September to help raise Awareness. I did not have to fight, I did not have to explain, and embarrassingly, I teared up. There was no judging, just compassion and the will to do something kind. For that, I will be forever grateful to Samantha Ash and the Port of Sydney. You helped spark something in me I haven't seen in many years. I've faced many scary things in my life but have never had the courage to step forward in my 19 year battle with Dystonia. I've always had my amazing family with me fighting privately, but in just 2 short minutes, I received the shot of courage I needed to fight publicly. Thank You.

With this amazing gesture, Amber and I felt a boldness. That was easy, what can we do now? "Let's think big!" said Amber. And we did. And while we did not accomplish all we had set out to. We did succeed in accomplishing so very much.

In the days that followed, I began receiving messages and email from patients and family members of people who have been diagnosed with Dystonia. Administrators of Support groups from across Canada, The US, as well as a worldwide group known as Voices of Dystonia began sharing photos and videos. Even James Sutliff, a UK Model, Personal Trainer, and Disability Coach asked to share our video and thanked us for raising awareness. 

Here in Cape Breton, the message continued to get out as people began asking "Why is the fiddle blue?" On the morning of September 20th, 101.9 TheGiant's Rob Calabrese (RobCee) was kind enough to discuss Dystonia during the morning show after talking with Amber the day before. He would bring it up again days later after another development.

That same night, during the opening of the Highland Art Theatre's absolutely amazing performance of "Mary's Wedding", Wesley Colford showed how big his heart is in discussing Dystonia during his introduction for every single performance while the stage was draped in blue lighting. 

I believe the reality of how well things were going was lost on me until a conversation I had with a wonderful lady with the Fortress of Louisbourg resulted in her asking, "are you the fiddle guy?" At that moment, I truly felt that we were actually reaching people. Still, Amber encouraged me to push forward.

This push led me to thinking of ways to help introduce Dystonia in alternative ways. We continued to share every mention of Dystonia. From Elementary students colouring printed fiddles blue, to King's Eiffel Tower being illuminated in blue, to high school senior Breanna Strange being named Homecoming Queen at South Lyon High School in Michigan, to the announcement of the Niagara Falls being illuminated blue on September 30th, we shared it all.

On September 25th we received word that one of the largest goals would actually come to fruition. With the help of Federal MP, Mark Eyking, we would be taking Dystonia to the Federal Political stage. In his address to Parliament, and live on CPAC, MP Mark Eyking, in the midst of embattled trade talks with the US, actually took the time to forward a message along from a single Cape Breton constituent. There he was, on national television, telling the country about Dystonia. I couldn't believe it. 

Has all this really happened? It doesn't seem that long ago I was being labelled a drug addict and watching a Doctor stand, perplexed, not knowing what to do, calling Doctor's in Halifax to see what to do because he had no idea what Dystonia was. And now, over the course of 20 odd days in September we were seeing iconic landmarks across the country dressed in blue, being discussed on radio shows, Patients being voted Homecoming Queen instead of hiding in a room at home, being discussed at public events, being recognized not just on a tiny island, but around the world and by elected officials. 

 

Amber, my rock. Thank you for standing beside me, and for standing up for me. Thank you for the push I needed.

Sasha and River. You worry I know. But your courage to stand up in front of your peers and call me a hero, or fight away tears while talking about Dystonia so that people know what it is and why we need to talk about it just blows me away. You are the true heroes.

Nigel. Your initial push in early September showed me it was okay to open up and ask questions. Thank you, my friend.

Samantha. I only met you once, but that one meeting set off a chain of events I never thought possible. Please know that kindness is always rewarded.

Stefanie. You openly brought the victories on our little island to the national stage. Your guidance and appreciation did not go unnoticed

Wesley. There were no benefits to what you did other than knowing you were showing compassion and kindness. So glad to have you back home in Cape Breton successfully doing what you love.

RobCee. Your willingness to do what Medical Professionals were reluctant to do means more than you will know. To look, listen, and discuss sounds simple, but for some, it is like moving mountains.

Ms. Morrison. You took time to find fun ways to educate students on Dystonia. Thank you so much for supporting our Emma.

MP Eyking and Staff. Thank you for showing that your constituents matter. Kindness doesn't have to take a lot of time and effort, and it is not representative of a political party. You did a great deed to help 50,000+ Canadians, only 30 of which you may represent. That takes class.

My Friends and Family. Your phone calls, email, messages, texts, comments, likes, and shares helped spread our message. I know you are probably sick of hearing and seeing Dystonia related items. But you continue to support. On behalf of my 30,000+ twitchy friends, I thank you.

My heart beams with pride for our little gem of an island. I've always been proud to be a Cape Bretoner. There are so many people who need to be mentioned but I fear I will leave somebody out. If I do, please know it is not intended for, without all of you, the successes of September would not have been possible. From the bottom of my heart, thank you for everything.

Most Graciously,

The Fiddle Guy

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Nigel Kearns Follow Me
This is awesome Jason! I'm mean " Fiddle Guy" as I said to you before, the picture of you in front of the big blue fiddle is one of strength and leadership! You sir are the one that rocks here! Bravo!
Jason Young My Post Follow Me
lol...Thanks, Nigel. I have to be honest, all I could do was stand and stare at it, it was surreal. I don't like to show emotion but it was hard to not get caught up in it, especially since I had just left the Highland Arts Theatre after hearing Mr. Wesley Colford on stage. I am truly humbled by the entire experience.
Dave O'Keefe Follow Me
Hey "Fiddle Guy".....Great job on promoting awareness of dystonia......quite a commentary you posted here. Keep up the good work, Jason
Jason Young My Post Follow Me
lol..Thanks, Dave. I was just telling Amber that I can't carry a conversation to save my life but put me behind a keyboard and you can't shut me up. Thank you and cheers, my friend.

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