Joys Of ALS

“If you wish to glimpse inside a human soul and get to know a man, don’t bother analyzing his ways of being silent, of talking, of weeping, of seeing how much he is moved by noble ideas; you will get better results if you just watch him laugh. If he laughs well, he’s a good man.”

Fyodor Dostoyevsky

Do your heroes change as you grow older and inch ever closer to death? My list still includes many writers, poets, and songwriters, but a lot of celebrities have fallen away to make room for people who accept debilitating illness and impending death with grace, courage, and even laughter.

Late last month, about an hour after greeting my brother Ray and his girlfriend Hilary in Florida for my wedding to B, Hilary received word that her father had passed away. I knew that Keith Slater had been ill with ALS (Amyotrophic Lateral Sclerosis) for several years. After arriving home, I was pleased to see that my calendar was free on the date of a memorial for him and then I sped-read his book, The Joys of ALS: finding happiness in a dark place, before attending.

ALS Canada describes ALS as the opposite of joy: “a neurodegenerative disease where the nerve cells that control your muscles die. The ‘living wires’ which connect your brain to your muscles degenerate, leading to loss of mobility, loss of speech and eventually impact the ability to breathe.”

Years ago, when I read Tuesdays with Morrie by Mitch Albom, I contemplated what Morrie was going through, his body slowly deteriorating, bidding an excruciating farewell to his brain, still quite functional. Imagine. Being abandoned like that inside a useless hulk of a body. Anxiety-inducing, that’s what that is.

When Slater was diagnosed on June 10, 2008, he thankfully had his lifelong companion with him. No, it was not his beautiful and supportive wife Rosalind, whom he’d known for 58 years, since the time he’d accidentally elbowed a giant cream cake into her face on their first date, on a train, in front of his parents. (She laughed, indicating she was the girl for him.) He always carried his sense of humour with him.

After the diagnosis, the neurologist said, “I really am very sorry, but I have to advise you to get your affairs in order as soon as possible.”

“Why?” Slater asked. “How much time have I got left?”

“Six months at the most.”

“Oh. I see.”

No frantic raving. Or running away, which would be my first inclination.

“You’re taking the news very calmly, Keith,” the neurologist pointed out.

“Didn’t you just tell me there’s no treatment to stop or slow down the deterioration?” Slater asked.

“Yes.”

“Then I don’t see much point in ranting, do you?”

When recounting his diagnosis later to a close friend, Slater added this fictitious dialogue:

Neurologist: I’ve got some good news for you, though.

Slater: How on earth can you have any good news after a diagnosis like that?

Neurologist: Easy. You’ve got Alzheimer’s. Go home and forget about it.

Well, he didn’t have Alzheimer’s, so he couldn’t forget about it, but he could employ his old pal humour to help him live with ALS, and ease his challenging journey well beyond six months. A couple of days after his ALS diagnosis, with Rosalind by his side, his neurologist let them know he’d made an appointment for a second opinion with a famous ALS specialist. Said Slater, “We thanked him but I pointed out that, since the date he’d booked was in January, it could become a bit redundant, since it was a month or so later than the time he’d established for my demise.”

Ouch. Ending the meeting shortly after the flustered doctor called the clinic to arrange an earlier appointment, Slater said, “In my usual tactful manner, I told him that I didn’t think I would accept his diagnosis and intended to do my best to live life to the full, hopefully surviving long enough to read his obituary.”

It is interesting to note that in the early 1980s, due to a Fellowship at Cambridge University, Slater got to know Stephen Hawking, one of the more famous people in the world afflicted by ALS. Said Slater, “One thing that impressed me enormously was the fact that all the people around him treated Stephen like any other human being, with no special arrangements to bring attention to his plight. The other fact I noticed was his wry sense of humour, and the strong impression that these two memories left on me has greatly inspired me in my own situation.”

After Slater recovered from what he called “the fun and games of dealing with the unexpected diagnosis”, he continued his busy regular routine: writing at his university office in the morning (walking with a stick, then driving when necessary), gym for exercise class, home in afternoons (gardening, errands), theatre in evenings (plays and admin duties). He lived beyond his first neurologist’s prediction, got encouraging results from the specialist, so happily embarked on celebrating his 50^th wedding anniversary in both England – where he and Rosalind were born – and Canada.

Quite likely because of Slater’s optimistic attitude, instead of a few months, his illness progressed over several years. In his book he stated, “So, about seven years after the symptoms first became evident, I have reached the stage where I can’t breathe, speak, eat, or move any part of my body without considerable help from machines and other people. I still have a small amount of mobility in my arms and fingers, allowing me to type when Rosalind sets up my computer in exactly the right place.”

His advice to others with ALS? “First, find a goal to focus on to the exclusion of worry about your illness. Second, look for something you can laugh about in every situation you encounter.”

An example? “. . .I was praised for achievements that would have been treated with embarrassment in earlier times. I was now complimented for the quality and quantity of the various solid, liquid or gaseous by-products excreted from my digestive or pulmonary systems.”

Sustained often by his faith throughout life’s adversities, Slater closed his book on ALS in this way: “Thus, I have no choice other than to continue plodding along, thanks to Rosalind’s constant care and support, until I eventually reach Heaven, or whatever name is used to identify the place of a happy afterlife. I sincerely hope they will accept jokers there!”

The wonderful quote by Dostoyevsky was on Keith Slater’s memorial card.