My ALS Challenge

In Shakespeare’s play ‘Hamlet’, Hamlet asks himself this question after his father was murdered by his uncle on whether avenge his father’s death or do nothing. ‘To be’ or ‘not to be’.

No, I’m not writing a high school English class book report. As my best friend Steve, who I have known since high school, could attest, I did not really pay all that much attention in my Grade 13 English class (yes, that was a long time ago when Grade 13 still existed), and I was known to give a few soliloquys of my own when asked to answer a question. But that’s another story…

So, why am I referencing Hamlet? Well, in my last post I had written about how my hands, amongst other things, have been causing pain and cramping. This pain and cramping increased the more I used them. This started me wondering how long will I be able to work as I do a lot of typing which, by the end of the day, can cause a lot of pain and cramping? I resumed taking some pain medication that I had been prescribed, which was helping, but still only provides some relief.

The other week I got this nasty bug.  All I did was sleep and watch a lot of TV for several days. I did not use my hands at all. The pain subsided. Or, at least, my hands weren’t hurting. What a nice feeling. And it got me thinking… which is always dangerous.

I have continued to work since my diagnosis and will continue to work for as long as I am able to. I have thought about how long I will be able to effectively work for.

Two years?

Five years?

Longer? Hopefully.

Is it a question that will end up being driven by how I am able to continue functioning – both physical and mentally? I don’t know. Nobody knows. Life expectancy for 80% of patients after diagnosis is 2 – 5 years.

Do I want to, or will I be able to, work that long? I don’t know. Do I think I am in the 20% that will survive beyond 5 years? Well, I have been told by my health care team that my symptoms are progressing slowly, so I certainly hope so.

Regardless, I have accepted my fate and I am comfortable with it. ‘To be’ or ‘not to be’ was never a question; it has always been ‘to be’. The only real question is how will I choose to use my time going forward?

I recently read a social media post that talked about the most important part written on a headstone is the ‘dash’ between the dates. The post author had a unique perspective in that the little dash represented the life lived. It represented both the good and bad times along with all the memorable occasions gathered over a lifetime for others to hold on to.

I think of what will the rest of my ‘dash’ look like? Have you considered what your ‘dash’ will look like?

I will continue striving to make a difference, making memories, and continuing to take life’s lemons to make my lemonade. As I journey towards the end of my ‘dash’, I will continue raising awareness of ALS to others, in the hopes of providing greater support to the ALS community and one day hoping a cure is found.

My wife’s late grandmother, Grandma Carm, used to have two sayings that I recall:

1. Do everything in moderation, and
2. Getting old ain’t for wussies.

Well, Grandma Carm, I think Shakespeare could’ve learned a thing or two from you.

As for me, I will continue ‘being’ and making the remainder of my ‘dash’ as meaningful as possible but doing so in moderation to extend that dash as long as possible.  As for the ‘wussies’ part, I hope I’ve put that one to rest.