Jan. BotM "Every Note Played"

[Cheryl]

Every Note Played is by Lisa Genova, author of the hugely popular Still Alice which we read about a year and a half ago. This time Genova explores what it's like for a musician to struggle with ALS. It looks like it's going to hit even harder than that one, but one blurb does promise some humor. Another book that's barely 300 pp, font fully legible. No bookclub back-matter; I'll have to see what I can find.

[Cheryl]

Anyone reading this yet? I have it on my nightstand with the other bookclub selection; I hope to start one or the other tonight.

[Kathy]

I read Lily, it was okay. One man’s way of dealing with the death of his pet. I am more than halfway through Every Note Played. The family is totally dysfunctional but certainly ALS is one of the most hideous diseases. This walks a person through the horrendous physical changes that victims must endure. Since they are both dealing with the ultimate deaths of main characters, I find them pretty emotionally charged.

[Cheryl]

Ah, thanks for the heads-up! And thanks for reading along and sharing your thoughts.

[Ralph]

A well written, difficult and dark tale. I now know more than I ever wanted to know about the trajectory of ALS to its bitter and unavoidable end.

[Cheryl]

Oh dear.

[Cheryl]

Well, I've read it. And honestly I didn't find it all that dark. I imagine part of your reaction, Ralph, might be because as a man you empathized with him becoming more dependent and being "emasculated" - ?

I also didn't find the family particularly dysfunctional, at least compared to novels in which the focus of the story is on the ways people who love each other can be mean to each other. This seemed to me to be about compassion, and redemption, and forgiveness. I thought the main thing at the end was just relief... I was glad the progression was relatively quick.

$27K for a wheelchair that he used only a few times seems a bit over-the-top, though. I'm grateful to Genova for reminding us that insurance & savings are issues to be considered, in addition to the bodily functions etc.

I really loved the discovery that Richard made about his brothers at their father's funeral reception.

And of course Thank God for Bill and for all irl caregivers. They don't get paid nearly enough, and often aren't sufficiently recognized... especially as there have been a few 'bad apples' who have exploited their patients.

So, lessons learned: have insurance and/or savings. Have a will. Create some legacy messages of some sort. Think about what your doctor is saying about the decisions you'll need to be making later. And keep communicating with your family and friends so you won't have any regrets about not speaking up until it's too late.