It is the first day of a new year, or at least according to our Julian calendar. In my mind, this is just another one of those artificial marker posts we, as human beings, seem to need in our life. Watching the calendar, especially in an agrarian society, is a significant and important task. This date, January 1st, while long being celebrated as the start of a new year in western culture, is as artificial as any other year. The closest thing we can attach it to is the winter solstice, a day when days start getting longer; only that happened almost two weeks ago.
Perhaps the most significant thing about today for me is that it marks the fifth calendar year in which I am living with ALS. My symptoms, subtle as they were, first started to appear in early 2011. I was diagnosed in late 2012. Then came 2013, followed by 2014 and now on to 2015. In each of these years I have seen marked change in my physical strength and abilities. I don't doubt that this year will be the same.
There are already two frightening elements I am having to contend with in this calendar year. First, and most significantly, this is what I call my 80% time. The end of this year marks the year in which, with ALS, roughly 80% of PALS would be dead. It's kind of a count down year. I might make it longer, in fact I hope to make it a lot longer. The reality, of course, is unknown; I am just going to have to see what happens.
The next worrisome element, the more practical element, is money. In a few months my RRSP will run out. It was kind of the plan that it would last about 3 or 4 months shorter than my projected life expectancy. To be honest, by this time I was expecting to be in far worse shape than I am. I should be glad that things are moving along slowly, although they are most certainly moving along. It's the vagaries of life that would have me get this one wrong.
I don't think I would change that plan all that much. I have lived a terrific couple of years. I hope to live another interesting year. I know the challenges, or at least some of the challenges, it will put before me. I may have to sell my home. I will almost certainly lose my truck. I will be compelled to reduce my lifestyle. My quality of life will continue to decline.
Even with these challenges, I still plan on living as much of life as I can. After all, the other choice is not all that appealing yet.
The blog was posted originally on January 1, 2015.
About the Author
Born in Victoria, British Columbia, far too long ago to make a difference here, Richard McBride was, up until recently, a lifelong resident of the Vancouver and Fraser Valley region of Canada's most western province. McBride has had the joy of a very diverse career ranging from his first career as a stockbroker to training consultant and technology consultant to project manager.
Major changes in his life before his diagnosis of ALS meant his relocation to Calgary, Alberta, Canada. It was there that he received the diagnosis in November 2012. McBride continues to share his life and experiences both through his blog titled Richard is Living with ALS and through a tremendous group of friends, support specialists, and most importantly, with his four children and three grandchildren, with a fourth on the way.