This blog is not easy for me. It's a tough thing, having something to write each morning, even tougher getting it from brain to keyboard. You would think that someone with so much to talk about would have no trouble coming up with a subject each day. The problem is that the subject is pretty much always me, and I am simply not that interesting anymore. Perhaps I never was.
What started out as catharsis for me has become almost mundane at times. Sharing my life was good when I had a life. These days the biggest accomplishment in my days is putting on pants. Going to the toilet is up there too, but that happens whether I want it to or not. Having something interesting to say becomes increasingly difficult when my biggest interest is sleeping, staying in bed.
It's hard work, with little obvious reward, and even fewer not so obvious rewards. There is no fame, no adulation, no adoring readers. There is no money, no wealth for the written word. It's an unpaid self-assigned responsibility, the only compensation these days being a record of my existence.
I think about that often. When I stop writing, I will be gone from the stage of life, if not dead in reality then most likely dead in spirit. If I write, I live. If I stop, I die. Nowadays the dying part seems increasingly attractive. When I stop, who will notice? Who will care? There are roughly 100 people who follow my writing on an irregular basis. They might notice; some will surely not. There are a couple of dozen people who will definitely notice; I suppose I should feel good about that.
Maybe I should just stop for a few days. The problem is that when I stop it's more than likely I will never start again. That's the way it works with ALS. When you stop doing something, you almost certainly stop for good. There is no coming back. But I really want to stop sometimes, like today.
The blog was posted originally on Jan. 3, 2016.
Note: Visit mda.org/als to learn more about MDA's fight against ALS. The site offers powerful stories by people living with ALS, including Richard McBride, as well as other helpful resources so you can get involved and help take action to end ALS today. And, be sure to visit MDA's ALS disease information center to learn more about ALS, its causes, signs and symptoms, research and more.
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.