I want you to read this book. I hope you find it just as depressing and painful as I did.

            The book isEvery Note Played, by Lisa Genova. You may have read some of Genova’s previous books, particularly Still Alice, which leads you through the life of a woman as she  chronicles her decline into dementia.

            This book chronicles a similar decline, but into ALS -- Amyotrophic Lateral Sclerosis, often called Lou Gehrig’s Disease, or “what Stephen Hawking had.”

            But where Still Alice led readers through the gradual loss of a university professor’s memory and reasoning, it stopped before Alzheimer’s Disease ended her life. It was sad, but not shattering.

            Every Note Played pulls no such punches. It takes you through to the end, and beyond.

            I suppose that’s a “spoiler alert” -- don’t expect happy-ever-after endings.

As muscles atrophy

            In this book, Genova writes about a world-renowned classical concert pianist, a man whose fame depends on entirely on the coordination of ten amazing fingers on the keyboard. ALS causes progressive loss of muscle control — who better to choose as her central character than a concert pianist?

            The narrative follows him from his first symptoms of atrophy -- the index finger of his right hand, the hand that plays the melody line -- to his whole hand, his left hand, both arms, his legs, his bowels, even his ability to swallow his own saliva. And finally, his breathing.

            Along the way Genova brilliantly recreates on paper the increasing awkwardness of his speech, as first his lips, then his vocal cords, no longer respond to the commands of his brain.

            But it’s also the story of the pianist’s wife. His ex-wife, angry, bitter, and resentful. Who realizes with horror that she is the only person who can take him in, who can be his caregiver.

Your story too

            You should read this book for two reasons.

            First, because 100 per cent of us are going to die. Not necessarily with ALS. Statistics say that fewer than one in a thousand North Americans will get ALS. But everyone will die. Period. And unless you get snuffed out instantly in a car crash or a heart attack, you are going to experience some of the same symptoms of progressive decline.

            And you may need to decide how long to sustain life, when life itself has become intolerable.

            So this is about you, someday.

            And when you are dying, you will need a caregiver, someone who can be there more than a few hours a day. Health services provide professional help, but they can only visit on a defined schedule. You will need someone the rest of the time.

            You may also need an advocate, who can argue on your behalf with impersonal and often uncaring bureaucracies.

            If you’re not the person dying, you may well have to be that caregiver, that advocate, that decision-maker. Under normal circumstances, one member of every couple will die before the other. Guaranteed.

            So at least half of us will become caregivers.

            Maybe more than half, if adults become caregivers for their parents, their siblings, even their children.

            Our son didn’t die of ALS, but of cystic fibrosis. But I can say from my own experience that Genova’s portrayal of watching while someone you love takes a breath… and another breath,…and then doesn’t take another, rang absolutely true.

You are not alone

             Reading Every Note Played will not let you escape the pain, the frustration, the bone-racking weariness of being a caregiver, when and if that time comes.

            It certainly won’t give you any secrets for avoiding dying.

            But it may help you to realize, when you’re up to your eyeballs in a gut-wrenching situation, that you already know something about what’s going on. It will not be totally unfamiliar territory for you. You are not alone.

            From my brief participation in a caregivers’ support group, feeling alone may be the biggest problem facing caregivers.

            They didn’t choose to be caregivers. They didn’t train for it. They didn’t do anything to deserve having their lives taken over. By individuals who are no longer who what they used to be. Who often can’t appreciate the sacrifices you’re making for them.

            In what I increasingly think of as an inspired choice of wording, the United Church’s “New Creed” -- not actually new but 50 years old this month! -- starts and ends with the assertion, “We are not alone…”

            If nothing else, Every Note Playedwill remind you, when your time comes to live in the valley of  shadow of death, that you are not alone.

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Copyright © 2018 by Jim Taylor. Non-profit use in congregations and study groups encouraged; links from other blogs welcomed; all other rights reserved.

                       To send comments, to subscribe, or to unsubscribe, write jimt@quixotic.ca

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YOUR TURN

Judging by your letters, most of you agreed with me about last week’s column, in which I argued that human rights has become Canada’s new religion, and that Canada should stand up for that belief and be counted. And you were, generally, critical of Saudi Arabia’s history of suppressing human rights that we in Canada now take for granted. 

            But one letter took a different perspective. It came from Steve Roney, currently teaching in the United Arab Emirates, and therefore much closer to the Saudi situation than I am. 

            I haven’t changed my mind; I don’t retract anything I wrote. But I think Steve’s letter is important enough that it’s the only one I’m publishing this week. 

Steve Roney wrote, “Saudi Arabia did not start the war [in Yemen]. They intervened at the request of the legal and internationally recognized government of Yemen. This is proper conduct in international affairs. Moreover, they did not intervene unilaterally, but at the head of a multinational coalition, including the active participation of eleven countries, and the support of ten more, including Canada, plus the backing of NATO. You could not get much more legal or responsible than that: if this was aggression, so was Canadian participation in, say, the Korean War, or Bosnia. Granted that there has been some controversy over some tactics used. There is in most conflicts.

            “As to the Saudi government being oppressive, look at its neighbours. Saudi is, on the whole, one of the better-governed states in that region over the last several decades, including permitting greater human rights: better than Syria, better than Iraq, better than Iran, better than Libya, better than Sudan, better than Yemen. So why single out Saudi Arabia for condemnation?

            “It seems likely that, given local social conditions, a certain level of authoritarianism is necessary there to hold things together. Didn't America's interventions in Iraq and Afghanistan and Libya prove this to be so? They thought, naively, that all they had to do was to take out an oppressive government and put in a democracy, and everything would be fine. Instead, taking out the authoritarian government resulted in chaos. Just as, at times of war or general insurrection, you may need to impose martial law or read the riot act, in a nation that is terminally disorganized, without a functioning civil society, it may genuinely be necessary for a government to be relatively authoritarian to hold things together. A lot of other countries dissolved into revolution during the ‘Arab Spring.’ Saudi Arabia held together. Saudis were simply not that discontented.

            “On top of that, Mohammed bin Salman has been a reformer, who has been taking risks by making strides in human rights. He pushed through women's right to drive. Outsiders may not appreciate that there was widespread popular opposition to the move. I did a few informal class polls on the topic. My young Westernized students — hardly hardliners or traditionalists in Saudi terms — were strongly opposed. Bin Salman made an agreement with the Vatican to allow Christian churches. You bet this is not going to be popular with the religious fundamentalists whose support has been vital to the long survival of the monarchy. He has allowed cinemas to open. He has proposed introducing Western laws. 

            “Because he is pushing through such reforms, Mohammed bin Salman is vulnerable to domestic criticism that he is giving in to foreign influence and discarding Saudi and Muslim principles. This is a powerful constituency in the Arab world: you must have heard of the Muslim Brotherhood, ISIS, al Qaeda, Hezbollah, and the Iranian theocracy. They are prone to take violent action on their beliefs, too.

            “Why would we try to undermine him?

            “The Canadian government was doing some (they thought) no-cost ‘virtue signaling.’ They figured it would cost nothing to complain publicly about Saudi human rights violations, and would make them look good, domestically and internationally. 

            “But I think this move by the government of Canada then gave the Saudi government a useful chance to ‘virtue signal’ in their turn. And turnabout is fair play.

            “This tough reaction to a Canadian attempt to influence Saudi domestic policy, however mild it might have been, gives Mohammed an opportunity to signal his virtue to his own constituency, at little cost, in just the same way, both domestically and across the Muslim world. The real fear, to this traditionalist constituency, is of course the US and its immoral popular culture. But Canada is a useful surrogate, letting Mohammed look tough against foreign influence without risking any significant costs. Abroad, Canada looks just like the US, more so than any other surrogate country, but without the power or the economic weight. Less of either even than Britain, France, or Germany. Anyone can live without Justin Bieber for a while. So they've banned Tim Horton's; Tim Horton's does not operate in Saudi Arabia.

            “The Canadian government has been naive and unskilled enough in the arts of diplomacy to give Mohammed bin Salman this opportunity. Which, [aside from] Canadians on the ground and Saudis in Canada, turns out to have been helpful to him.”

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TECHNICAL STUFF

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PROMOTION STUFF…

To use the links in this section, you’ll have to insert the necessary symbols. (This is to circumvent filters that think too many links constitute spam.)

                       Ralph Milton’s latest project is a kind of Festival of Faith, a retelling of key biblical stories by skilled storytellers like Linnea Good and Donald Schmidt, designed to get people talking about their own faith experience. It’s a series of videos available on Youtube. I suggest you start with his introductory section: https://www.youtube.com/watch?v=7u6qRclYAa8

                       Ralph’s “Sing Hallelujah” -- the world’s first video hymnal – is still available. It consists of 100 popular hymns, both new and old, on five DVDs that can be played using a standard DVD player and TV screen, for use in congregations who lack skilled musicians to play piano or organ. More details at wwwDOTsinghallelujahDOTca

                       Wayne Irwin's “Churchweb Canada,” an inexpensive service for any congregation wanting to develop a web presence, with free consultation. <http://wwwDOTchurchwebcanadaDOTca>

                       I recommend Isabel Gibson’s thoughtful and well-written blog, wwwDOTtraditionaliconoclastDOTcom

                       Alva Wood’s satiric stories about incompetent bureaucrats and prejudiced attitudes in a small town -- not particularly religious, but fun; alvawoodATgmailDOTcom to get onto her mailing list.

                       Tom Watson writes a weekly blog called “The View from Grandpa Tom’s Balcony” -- ruminations on various subjects, and feedback from Tom’s readers. Write him at tomwatsoATgmailDOTcom or twatsonATsentexDOTnet