"The time has come," the Walrus said, To talk of many things:"
"Of shoes — and ships — and sealing-wax — Of cabbages — and kings... "
— Lewis Carroll
I think of these lines from Lewis Carroll's "The Walrus and the Carpenter" often, whenever I think about my present and my future with ALS. Charles Lutwidge Dodgson, the man behind the name "Lewis Carroll" was a brilliant man with many talents. Among other things he was a mathematician, logician, Anglican deacon and, in the early days of a now ubiquitous art form, a photographer. In other words, he was a creative man who loved words. Me too.
The reason I think of these lines, however, has nothing to do with Jabberwocky. It is my own life that has this "through the looking glass" feel to it. When I contemplate my future, that contemplation goes only as far as the next few months. When I think of the many things in my life, I am continually struck by the inanity of it, where the upside is down and the downside is up. I don't think much about ALS killing me; I think a lot about how I live with ALS. I am broke, yet I am wealthy. I am alone, yet I am surrounded by friends and family. I am sad, yet I am happy. I have so many things to consider, yet I don't.
I just made breakfast, only it was noon. I look at the food I eat, considering the calorie count, not to keep it low but to keep it high. If I make something unhealthy, I should probably make more of it. My doctor tells me there is no such thing as a bad calorie with ALS. So when I make something as unhealthy as Kraft Dinner, I add extra butter and even a bit of mayonnaise to make it higher in calories. I also add an egg, some wieners and perhaps a bit of onion to make it even better, or worse. Yet the mere effort of making something good for me to eat leaves me tired enough that I don't want to eat it.
Just a few days ago I was on the open Pacific fishing for marlin. Today, I am wondering if making a meal is worth the effort, if there is something else I can eat instead of what I am cooking. This morning I woke up shaking, almost unable to hold a glass of water. After the weekend I am planning on driving down to Kelowna and then over to the coast. These are the oddities of my life, that I can be completely weakened in one area and yet completely functional and active in another.
It is both sides of the looking glass, this space I am in. My arms are fasiculating right now, muscles wobbling like mad. Yet I just finished chopping onions and eggs. My belly fat keeps me alive, my belly fat drives the atherosclerosis that wants to kill me. I am perpetually exhausted yet rarely am I really tired. I am broke, but I just went to Hawaii. There are so many things in my life that just seem backward, odd, a misshapen reflection. And there are many things to talk about.
The blog was posted originally on October 28, 2014.
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 two grandchildren, with one on the way.