My ALS Challenge

It has been a while since my last post. I was finding that since I reached my second anniversary of diagnosis last December that finding topics which are not overly negative or sounding angry were more difficult to think of. The last thing I wanted to do is sound like I am complaining when I have spent a lot of effort trying to be positive and move forward despite this terrible disease.

This past June, I was given the opportunity to once again speak multiple times regarding my lived experience with ALS. As you may or may not know, I work for the Ontario Public Service, i.e., the provincial government. I was asked to speak as part of my work’s annual fundraising campaign, called Federated Health Charities, which supports 21 different charities through its fundraising efforts. I also did presentations to the Rotary Club of Whitby-Sunrise and the Knights of Columbus. I talked about my experience when I was first diagnosed, how we made the decision to take the lemons ALS had given us and make the best lemonade we could. What I found out as I gave these talks was that my words had been making a great and positive impact. I received several messages indicating how inspirational my talks were and that people learned so much more about ALS that they did not previously know. 

A group of my co-workers also took it one step further to help raise funds specifically for ALS through two different events. The first event was a bake sale where all the treats were lemon based. This bake sale raised over $1,200 which was absolutely fantastic. The second event was an ice bucket challenge for Andrew, named so in my honor, where people could submit their video and be eligible for prizes. These events really went to show how, despite my less than positive feelings lately, I truly have been able to take the lemons and make lemonade. 

Knowing that I am still able to help educate and advocate about ALS reminded me that not only have I been making a difference but there is also a long way to go. It also reminded me that even though I received several messages on how I was inspiring to them, it is really those people that inspire me. It allows me to know that every effort I take to help raise awareness continues to have a positive impact. I also realize that it is okay to feel down and angry about this disease. What is more important, in my opinion, is not to internalize but to share what the challenges are and what needs to be done to help overcome them. 

I know this disease will not be cured nor treatments developed overnight.  I also know that treatments, or a cure, may not come within my lifetime. As I have always said, I am okay with that as I have personally come to terms with this disease. What I can continue to do is make sure this message continues to be delivered in a way that allows us to move forward and not just sound like I am complaining. so, join me in helping to share this message by continuing to raise awareness of how this disease just takes and takes and never gives back until one day maybe soon there will be treatments that will help give back hopefully more than just a little.

As the Canadian rock band Trooper sang, ” We’re here for a good time, not a long time, so have a good time, the sun can’t shine everyday… ” https://www.youtube.com/watch?v=xiL8e_dPt0U