WRITTEN BY Darrin Rein
Winter was always my favourite time of year. I grew up spending a lot of time on the ski hill. Some of my best stories are set at Sun Peaks. It was definitely a way of life for me, and my family too. I spent most of my summers wishing it was winter. Now times have changed.
I was born and raised in Kamloops and have lived here my entire 46 years. I have worked in Kamloops and Sun Peaks as a computer geek since 2001, and continue to do so. Since I lived at Sun Peaks for many years, I still think of myself as a part of the community up there. I enjoyed golfing, hiking, a little bit of biking, but my favourite thing was snowboarding.
Man, I miss those days more than you can imagine. Actually, I miss a lot of other things too. I have neuro-degenerative disease called Spinocerebellar Ataxia, referred to commonly as SCA. To say it is a rare condition is an understatement. SCA has many similarities to Parkinson’s Disease or Multiple Sclerosis. The most notable difference is that there are no medical treatments at this time.
The winter season brings me a certain amount of anxiety these days. With SCA, your balance or gait is severely affected. If I had to walk through a couple of inches of snow, it wouldn’t be pretty. I only manage to get around with a lot of planning. It is important to know that I can still walk, sort of. I refuse to use a walker or a wheelchair until I absolutely have to. Those days are coming sooner than I care to admit, but I will suck it up with my cane for as long as possible.
My challenges getting around town are likely dwarfed by those confined to a wheelchair, but we share many of the same obstacles.
I can still drive, but parking downtown on the street is awful. Add a few centimetres of snow, compact ice or snow banks and it can be an invitation for problems. I can’t make a big stride over a snowbank because the only place I will go is on my butt! Usually I have to hobble my way slowly to where the snow has been cleared enough for me to get to the sidewalk. The City of Kamloops does not charge for parking on the street for those of us with a disabled parking pass, which is great! However, they fall short on the availability of street parking specifically for disabled people—the only spot that I am aware of is on 3rd Avenue between Victoria and Seymour Street. I use metal spikes that I put on my shoes to help me around. I can also put a spike on my cane to help with traction.
The big problem for me is my balance. If there is anything foreign underneath my feet, it just feels wrong. I also need to be aware of where I am going, because certain surfaces are more of a slipping hazard than a help to me. Sometimes alI I really need is a shoulder to hold on to.
I have to assess my situation and plan things out when I get there. I always look for the easiest path to take and anything that I can grab on to for support. If you live or work in a place that has more than two stairs and no railing, I will enter another way, or likely won’t visit you.
Going out in public can be embarrassing. One of the symptoms of SCA is the appearance of intoxication. I sometimes sound drunk when I speak, and since my balance is so awful, I look like Captain Jack Sparrow when I walk. I probably sound like Scrooge when I say this, but the best part of the Christmas season is when it’s over. My yearly ritual to escape the chaos of the holidays was to go snowboarding.
That does not happen anymore. Christmas is quiet for me, and I am good with that. I still love the social aspect of the holidays. I am pretty open with the progression of my condition, but am not a fan of going into a situation where people may not be aware that I talk and walk a little funny. I might seem a little antisocial, which I am not. In most social situations, once I am situated, I don’t move, and two things are on my mind: what’s the easiest way out of here, and where is the bathroom? I am a lot livelier around people I am more comfortable with. Those that know me well understand that, although I have a lot more challenges, I am the same guy I always was.