Laugh, I Thought I’d Die
My Life with ALS
Dennis Kaye
Viking, Penguin Books Canada Ltd., Toronto
264 pages, $25.99 hardcover
Reviewed by Sue Careless
For someone with a degenerative illness, Dennis Kaye’s got a great sense of humour. His muscles are wasting away with ALS. Yet the one muscle exertion that doesn’t sap energy but rejuvenates is laughter and Kaye employs plenty of it.
“A terminal diagnosis can ruin your whole day…[My speech] leaves me sounding like Darth Vader with a harelip…I walk as if I can’t decide if I’m on a leisurely stroll or dancing to La Bamba…laughter for me comes out like some kind of moronic mating display…Every day is a bad hair day…[And after falling many times] it was my repeated request that decent reading material be stapled to the ceiling.”
Kaye, a Canadian, is also full of wisdom: “Today I measure my strength, or lack of it, in terms of my ability to control things like resentment and frustration. I’m convinced these two emotions, all by themselves, have the potential to destroy a person.”
“…for a lot of people giving of oneself can actually be a source of inner strength…Whether you’re as near as a neighbour or as far away as a thousand miles, just knowing you occupy a place in someone’s thoughts can help fuel feelings of self-worth…thoughtful strangers are like lifelines in the dark, I never see the face at the other end, but I know enough to hang on for the ride.”
Kaye is angry, and rightfully so, that ALS has such a low profile as a disease. Most don’t know that what ALS even stands for: Amyotrophic Lateral Sclerosis. It is also commonly known as Lou Gehrig’s disease.
“ALS is not rare!…in the past decade ALS has killed as many Canadians as AIDS, and continues to kill more Canadians than such well-known diseases as Multiple Sclerosis, Muscular Dystrophy, Cystic Fibrosis and Huntington’s disease combined.”
ALS progressively robs you of all voluntary muscle control but it does not affect the brain. “Some people with ALS are unable to breathe or eat without mechanical aid but are able to speak and walk. Others, like myself are able, with increasing difficulty, to breathe or eat without mechanical aid but are able to speak and walk. Others like myself are able, with increasing difficulty, to breathe and swallow but in my case my speech is unintelligible to most and I am unable to move anything but my head in…a normal or useful fashion.”
The degenerative disease was discovered 120 years ago yet there is still no cause, no cure, not even a treatment. Kaye writes to raise public awareness and hence money for research.
The media gives ALS scandalously poor coverage even though it kills as many Canadians as AIDS. Even the ALS Society of Canada spends only 5% of its budget on public awareness. Consequently there are few funds for research and, Kaye feels, a weak support network among the sufferers. Most of those afflicted die within two or three years of diagnosis although 20% live past five and 10% live past ten. Kaye has now lived eight.
Kaye also devotes a large section to practical coping skills and aids for the sufferer so that he can get the most out of life with ALS. Mobility, communication, swallowing and breathing strategies are all covered in depth.
Wheelchair bound, Kaye types wearing headgear with a pointer attached, which, when he bobs his head, strikes the keys on his lap-top computer. He often has to bob 8 to 9 times for a 3 letter word!
As for the chapter on God and religion, let’s agree that the zealot who only emits the warmth of hell fire and brimstone is a curse. Jesus had cutting words for the cold Pharisees and the law givers who never lifted a finger to lighten others’ loads. Kaye knows it is those, spiritual or not, who project human warmth who really help. Religious do-gooders, if they truly want to do good, have to see people in the disabled, not projects; they have to value that other for himself not just for brownie points in heaven. Kaye’s chapter on God then, may not be theologically to your liking, (Kaye is an agnostic), but those who wish to minister to the disabled, and let the disabled minister to them, need to heed his warning on attitude.
Kaye is not out primarily to address the topic of euthanasia although it comes up in two chapters. Pro-lifers should not reject his book out of hand because they disagree with 44 pages in it. The pro-life movement is committed to helping those who suffer by better understanding what they can best live to the fullest. We also know we may one day suffer a similar fate.
Paradoxically, while Kaye is making the most of his life with ALS and encouraging others to do likewise, he still signed an affidavit for the B.C. Supreme Court to support Sue Rodriguez in her desire for assisted suicide: “I believe it to be discrimination against physically disabled persons to prevent them from obtaining assistance to do something [commit suicide] which is legal for able bodied persons.”
The irony is, as he himself notes in his affidavit that, “In many respects I consider myself to be living the life that the Petitioner [Sue Rodriguez] wants to avoid and I have done so for an extended period of time.”
The 44 pages are revealing. Reprinted are the faxes sent back and forth between Kaye, Sue Rodriguez and John Hofsess of The Right to Die Society of Canada. Kaye is disappointed that Hofsess does not initially pass the faxes intended for Sue on to her. Hofsess’ article to The Vancouver Sun that he claimed was authored by Sue is also included.
The affidavit that would be interesting to read and is referred to, but not included, is the one from Roy Slater. Slater was past president of the B.C. ALS Society. He also swore an affidavit to the Supreme Court of B.C. but opposing Sue Rodriguez’s desire for assisted suicide. Slater himself died of ALS. Kaye acknowledges him as a friend.
Kaye’s two chapters on euthanasia deserve a sensitive rebuttal. Perhaps it comes most eloquently from another disabled person, Joni Eareckson Tada in When is it Right to Die? Suicide, Euthanasia, Suffering, Mercy. Since a diving accident 25 years ago, Tada has lived as a quadriplegic. Interestingly, Tada would respect Kaye’s decision not to have a tracheostomy when breathing becomes too difficult if that’s what he desires.
Tada and Kaye have written compelling books that speak with the authenticity of the sufferer. Both know well the despair that permeates disability. I have no hesitation recommending Tada’s fine book.
Dennis Kaye’s book is more problematic. While no pro-lifer will agree with Kaye’s two chapters endorsing euthanasia and many will be offended by his view of God, there is much in the rest of his book about truly living with ALS that shines.
When Is It Right To Die? Suicide, Euthanasia, Suffering, Mercy by Joni Tada will be reviewed next month.
