The following personal essay was first printed on the Huntington Society of Canada’s website. The author, Diorama Party co-founder and Little Sister’s manager Janine Fuller, agreed to let us repost her piece here. For more information about the party, see below.

 

When I was about 10 years old, I was at home looking through a drawer on a writing desk that I had always adored, which sat in our living room.

Pulling out the gold-laced drawer I started reading an article about a disease that I had never heard of, but it seemed odd to me that my mother would have it folded up inside this drawer. Now, my mother was a psychologist, and communication was never something she didn’t thrive on, so this was beyond strange. Finally, when she arrived home in the darkness of a faded fall afternoon, she talked to me and my brothers about this article.

It was then that she told us that my grandfather (her dad) had very possibly had this disease known as Huntington’s chorea (or Huntington’s disease). While he did, my mother did not, so, with luck, as my father reassured us, it would be a legacy my two brothers and I would not have to imagine.

Well, fast forward to going on holiday and my mother not being able to pack the trunk and her soon after diagnosis and disease. Eventually, my father retired early to look after my mother and, eventually, in a home after breaking her hip in Sunnybrook Hospital. My mother died the summer after the Little Sister’s court case against Canada Customs went to the BC Supreme Court.

My older brother also tested for the disease. I don’t think he was even 30 when he tested positive. Not just positive, but he actually had the disease and, unlike my mother, he was way more “jerky” and very physical with his movements. He died one day before his 55th birthday.

Then my twin brother also tested positive and, over the last few years, has developed what I’d call full-on Hungtington’s with, what are to me, the tell-tale signs of the disease (can’t swallow, choking and horribly anxious). He is now on long-term disability.

Over the decades I have talked about Huntington’s whenever I could as I gained visibility through the bookstore’s court struggles and different issues. But it wasn’t until I got an honorary doctorate degree at Simon Fraser University that I spoke about my older brother. I also talked about my personal upcoming challenges dealing with the disease.

Now, as I approach the 25th anniversary of the Diorama Party, the fundraiser that my partner, Julie Stines, and I started first for the bookstore’s court case, then evolved to help many more charities, the time has come to pass the torch for new folks.

Losing Jim Deva this year — after all the assistance and heaps of support that he and his partner, Bruce Smyth, at Little Sister’s bookstore have given us with the Diorama Party over the years — was also a tremendous blow.

After much consideration, this is Julie’s and my last Diorama Party.

The time has also come to raise money for a disease that too few people know about but that has made every part of who I am.

It is time for me to step forward into the spotlight of Huntington’s disease. I do that with a great sense of reverence and pride and for those with HD in the world, and especially for my twin brother, Joel.

This year’s Diorama Party proceeds will be shared, with 50 percent going toward research and 50 percent for services for all those suffering with this truly relentless disease.

So, with much urging and love from Julie, my partner of 26 years, I’ve agreed that it’s time for this Diorama to raise money for Huntington’s. Not easy but so important.

 

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