Over the past 5 years my family has seen a lot of change. I have lived in British Columbia, Saskatchewan, Manitoba, Ontario and Alberta by the time I was 15. I’m accustomed to life being unpredictable.
But when I was quite young my Mother and I met her true biological Father. We welcomed an amazing, strong-willed Navy man and all of his family into our own. And they were awesome. We loved each of them instantly, and they loved us back.
With this new reunion also came the knowledge that we were at-risk of inheriting Huntington disease, something I knew nothing about at that age. It wasn’t long before my Mother began to show symptoms of HD. Being an only child and living out West while the rest of my family was on the opposite end of the country was difficult. Each visit I would make out East would compound the impact of her progress for me.
But from afar, I began to see how diligently she educated herself. She met with Dr. Guttman, who encouraged her to participate in the very first clinical trials over 20 years ago. Her physiotherapist also suggested Karaoke to help maintain her speech. In her exact words, ‘when you live with a Neurological Disorder, as we are doing, HSC is your best and constant partner.’ The fact is, while we were separated by a large distance, we were both connected to the same community.
As I grew older, the obvious question about ‘should I get tested’ always came up. What an extremely personal question. Even members of my family have different outlooks on it. But perhaps one angle not often discussed is about how it affects our partners.
Should I have HD, my girlfriend, Kaitlyn, wanted to know what she was signing up for. So I reached out to the University of British Columbia via Linda McLaren in the Calgary office. For nearly two hours Kaitlyn asked about treatments, what to expect from me, what she can she do, how hard would this be on her, where are we at for a cure and it went on for so long and so detailed I was afraid that maybe this was all scaring her away.
But it wasn’t. Being her magnificent self, she declared that she would be willing to put up with all of that… FOR ME! I soon proposed and we had a beautiful wedding on my Father’s land in the foothills of the Rocky Mountains.
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But the story goes a little deeper. I had spent the majority of my life as a musician of some sort enjoying varying degrees of success. I’ve written hundreds of songs and released quite a few of them. I’ve been lucky enough that one album had nearly every track placed in television and film with songs charting on the radio. I’ve been blessed to meet hundreds of characters and play on incredible stages from Virgin Festival to New York Fashion Week.
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Somewhere things changed and I decided to leave the band my friends and I had created, the Fast Romantics. I assumed I would start my own career as a solo artist. But instead I found myself constantly dealing with health issues. Depression set in and I didn’t touch my guitar for nearly two years.
One day I just decided to do something about it and I was introduced to Shannon MacKinnon, Resource Centre Director, at the HD office in Calgary. Her eagerness to help was beyond anything I had experienced before. She got me to open up and realize that I needed to play again. Beyond that, the benefits of playing an instrument or simply using the creative mind is beyond valuable, it’s a necessity for those of us brave enough to try it. And so I did. I haven’t stopped for three years since.
As a result, I’m currently in mid-album production with my producer Russell Broom and am anticipating an early 2018 release. With this album is a song for my wife. She had once told me that her emotions can be like a lost boat at sea. I related. Sometimes we just need a tugboat to bump us in and that we can be each other’s tugboat. This is where the song “Tugboat Beau” came from.
When the album is done, I’m really looking forward to sharing this song with everyone in the HD community because it’s happy and it’s about the beauty of unconditional love. It’s what I had wished I would always say to her if there came a time that I couldn’t say them. And I wouldn’t have done any of this if I hadn’t of asked for help in the first place and for that, I am thankful for Shannon and the Southern Alberta Resource Centre.
When the album is released, I will be donating 100% of the royalties earned from this track to the Huntington Society of Canada for the gift they have given my family. From my Mom singing Karaoke to me plugging in that guitar for what felt like this first time all over again. I will also be doing a tour of 3-4 cities across Canada and will be donating all of my earnings to HSC as well. Dates to come, so please stay tuned to my website at www.matthewkliewer.com.