I spoke at an ALS fundraiser event in Richmond recently.  Here is a transcript of my speech:

I live in the small mountain community of Revelstoke, it’s a very outdoorsy kind of place, most people who have moved there have done so for the many available outdoor pursuits. I spent most of my time hiking, skiing, mountaineering, and mountain biking. I took my mountain biking very seriously and I was a professional for nine years, culminating with winning the provincial championship and 2nd in Canada. I went to the gym 4-6 days a week, 11 months of the year, for nine years. I was very proud of the strong legs that had that propelled me down the mountain at breakneck speeds or helped me summit many mountain peaks in my area and abroad.

However, I don’t know if it’s a throwback to my childhood where Barbie was one of the first girl figures that I knew, that even though I had these great strong legs that let me do wonderful things, I kind of always wished that I had those long skinny legs that you see in magazines. You know legs a mile long, they look great in short shorts. Well, sometimes you have to be careful what you wish for, because now I’ve got those skinny legs, but they’re not the legs that I asked for. I can’t run, I can’t jump, I cannot walk for more than a couple blocks without getting tired.

Another thing is that I fancy myself somewhat of an artist and am a graphic designer by trade. I always wanted to be different from everyone else. I notice here in the city black is the predominant color of choice and what people are mostly wearing. Not me, I’m the one out there wearing the bright colors. That’s another thing that I have to be careful of what I wish for. Now I am truly different. I am probably the only one walking down the street using a cane in my small community of 7000. I’m the only one with ALS. Of all my friends I am probably the only one who doesn’t downhill ski, cross-country ski, hike, mountain bike, and so forth, the list goes on. I truly am different but it’s not the different that I asked for.

But it’s not all bad, ALS has brought me some wonderful things in my life. When I was diagnosed by my neurologist he told me, If I were you I would quit my job and go do all of the things that I wanted to do while I still could. So my family and I took those sage words of advice and went on a series of adventures. We traveled to the North to show our eldest daughter where she was born in Yellowknife and the aurora borealis that she is named after. I got to pilot a dogsled, I was able to go helicopter skiing with my husband for a day, we took a vacation with 18 other family members down to Mexico, and as the pinnacle, my family and I ventured to China and lived there for five months and then spent the next six months traveling around the world visiting friends and family in countries that we had never been to. It was the trip of a lifetime. Probably one of my proudest moments was watching my three-year-old climb the Great Wall of China and my five year old summit a 4000 foot peak with us. The experiences that we had in that year will be lasting memories for my daughters, even for the little one, how could they not be with 10,000 photos and 30 hours of video!

So ALS has brought me great joy, it’s brought me an opportunity to see the generosity of the people around me, the generosity of my friends, family, coworkers and complete strangers who helped make that trip possible. Also in my community there is a proposal forming to help us rebuild our house to be wheelchair accessible, this in turn has brought Habitat for Humanity to our community, a really valuable charitable organization that helps provide affordable housing and renovations to those who need it, something that has been in the making for nine years but to no avail. So I’m grateful to be able to help my community and those who will need the aid of Habitat for Humanity in the future.

I truly have many things to be grateful for. I am grateful to be living in this century, or even this decade, where we are on the cusp of some amazing breakthroughs in the research of ALS. I am grateful to be living in BC, the province that leads in research and facilities for ALS patients. Through your generous support the ALS society of BC helps families affected with ALS in many ways, easing the burden of a difficult time for all involved.

We never know what life may throw at us, so I have learned to value each day, and keep a positive attitude. It could be you, your sister, your cousin or best friend in this position, young or old, so I am thanking you for your support, for myself, for those that have passed, and those who are yet to be.