My ALS Challenge

June was ALS awareness month. During this month I did a number of activities both participating and contributing to raise awareness for ALS.

June 2 was Lou Gehrig Day. ALS Canada invited me and my family to attend the Blue Jays game at the Rogers Centre in the Blue Jays Community Cares box where we were joined by other people living with ALS and their families. It was a great day, we met many new people, and the Blue Jays won!

June was ALS awareness month. There were many events to raise awareness about ALS such as Lou Gehrig Day put on by Major League Baseball on June 2^nd. Other events consisted of many sites – the CN Tower, Niagara Falls and Toronto City Hall – lighting up in purple to show their support for ALS. In addition, ALS Canada conducted their Walk to End ALS fundraising events across Ontario throughout the month.

My family and I were able to participate in many of these events. We were able to attend the Toronto Blue Jays game on Lou Gehrig Day. I also participated in the Walk to End ALS, which took place in Whitby on June 22^nd. But I also went one step further by changing out the exterior lights on my house to purple. I figured if the CN Tower and Niagara Falls could light up purple well why couldn’t I? So, I swapped out the exterior lights on my house for purple ones. When my neighbour found out why we had purple lights they followed suit and the next day had installed purple lights as well.

In continuing to raise awareness, I gave a couple of presentations on ALS. I also had an opinion article published in the Toronto Star newspaper talking about my experience from being diagnosed with ALS, how I reacted and my decision to do my Virtual Mobility Ride once I accepted my diagnosis. The amount of positive feedback I received regarding both the presentations and the article was amazing.

As a matter of fact, ever since I started writing my blog, and making the decision to share my story to raise awareness, I have been amazed by the support by everyone I have encountered, not only from friends and family. I get comments from people telling me they didn’t know that ALS had no cure, or that most people die within 2 to 5 years of diagnosis. The support I have received has been fantastic, but it has also been a constant reminder that I live with this disease that has no cure.

One story that I think stands above all the rest, though, makes it all worthwhile. The TIME program I attend to help maintain my mobility for as long as possible is taught by kinesiologists. During the school year they will have fourth-year kinesiology students doing co-op placements. During the last session the co-op student had told me at one of the last classes that her and her classmates were going to get tattoos to celebrate graduating. Of course, I asked what tattoo she was getting.

Her response: “Lemons!” I was speechless.

I finally asked why lemons? She said that my story had inspired her so much that when people ask her why she had a tattoo of lemons she could tell the story of me and bring awareness to others. But it was not just awareness of ALS, it was that no matter how difficult your circumstances are, there is always Lemonade to be made by the Lemons life gives you. I definitely shed a few tears, but it was well worth it!

I must admit that it is getting more difficult to do various activities. For example, this blog post I am writing using voice to text. I find it difficult to write this way as I have to think of what I’m going to say first before speaking it as opposed to typing it as the thought comes into my head. It is definitely a different way of writing and one that I am still trying to get used to. I am thankful that this technology exists which allows me to continue being functional.

I am also thankful for the random messages I receive from various friends, colleagues and acquaintances just to say they are thinking of me and how me sharing my experiences have helped them learn more about ALS. They have also reminded me to take time to rest and not push myself too hard. It is something easier said than done but it is also something that I’m trying to do more of, but it is hard.

Another thing that I am becoming more aware of is the need to let go and accept help from others. Again, this is not easy for me to do but something I am trying to do more of. I know friends and family want to help but, honestly, when asked I don’t know how to respond because I do not know what I need help with or how best they can help. I am learning too.

So, with June now gone I have realized there have been multiple types of awareness:

1. Raising general awareness of ALS
2. Directly connecting with somebody and having and having them bring more awareness about ALS, and
3. Self-awareness of the things I can and cannot do, but also the realization that I need to accept help from others and take time for myself.

As I said, I have been told my ALS diagnosis is slow progressing though there is no timeline associated with what that really means. All I can do is take advantage of whatever time remains, make sure I get enough rest, take care of me, and continue making lemonade out of whatever lemons come my way!