Monday, September 18, 2017


Out of the night that covers me
Black as the Pit from pole to pole . . .

I was about ten years old when I had to memorize William Ernest Henley’s “Invictus” for a fifth grade class. My father had insisted on this 1875 poem, and I resented it mightily. He evidently thought the fearless, defiant, stiff-upper-lip verses (“Invictus” is Latin for “unconquered”), written in the face of debilitating illness, was just the thing to inspire a little boy struggling with total deafness. (I didn’t need to be reminded of that.)

Besides, “It matters not how strait the gate . . . “ “In the fell clutch of circumstance
. . .” Whatever did those phrases mean? I was just too young.

As I grew older, I adopted the cynical sensibility of postmodernism and dismissed the verses as mawkish and self-dramatizing, “the most widely known bad poem in English,” as the middlebrow critic John Ciardi declared. To my mind it was a garish Thomas Kinkade word painting for rustic living rooms. It provided Timothy McVeigh’s last words before his execution. 

Still, Nelson Mandela loved it and recited it to his fellow inmates on Robben Island. Clint Eastwood made a pretty fair movie out of that story (I wish I could have heard Morgan Freeman’s rendition of the poem). It helped John McCain survive a North Vietnamese prison. Prince Harry created an Olympics for wounded soldiers and called it “the Invictus Games.”

To modern critics “Invictus” has more than pop-cultural legs. They recognize that with farsighted realism Henley broke the florid Victorian mold of spiritual poetry, helping open the road for the fierce anger of World War I poets, soldiers trapped in circumstances not of their own making.

When I finally reread “Invictus,” a few days after being diagnosed with macular degeneration—possible blindness is a terrifying prospect for a deaf person—I cried. My dad was smart. I think he knew that someday I would  appreciate “Invictus” because I would need to.

I never understood that gift until now.

Friday, September 15, 2017

Macular degeneration

Courtesy All About Vision
Back in 1999, I reviewed an inspiring memoir called Twilight, by Henry Grunwald, for the Sunday New York Times Book Review.

Grunwald had been the longtime editor of Time magazine as well as a distinguished author, and was Ronald Reagan’s ambassador to Austria. In 1992 he was diagnosed with age-related macular degeneration, in which “the sufferer sees everything through an ever thickening haze.” AMD is incurable and at the time always led to near blindness, its victim unable to read. Grunwald was 69 years old at the time of diagnosis and lived for 13 more years until his death at 82 in 2005.

Twilight is a small but magnificent book, candid and graceful, full of coping, humor and imagination. It’s one of the books I most remember from my 33-year career as a book review editor and critic. I’m still proud of the review as one of the best I ever wrote.

How ironic, then, that just the other day I was diagnosed with macular degeneration.

I had awakened one morning last week with a large grey-brown spot in the landscape of the vision in my right eye, a spot that I could not see through. It is off to the side and not in dead center.

Wet AMD, said the retina specialist a few days later at Ironwood in the Yooper North Woods. The trouble is blood vessels growing wild behind the retina and leaking, causing damage to the macula, the part of the retina responsible for central vision. It cannot be cured. If I didn’t do anything about it, the blank spot would rapidly grow and I’d go blind in that eye within six months. 

Injections directly into the eye can slow down the progress of the disease for quite some time, possibly years, the specialist said.

What about the other eye? There were some very slight indications of possible “dry” AMD, normal for my age, he said. There was a 50 per cent possibility it could worsen over time.

The decision was a no-brainer. I had the injection into the right eye—of Avastin, a drug originally formulated in 2004 to stem bleeding in colorectal cancer but now widely used “off label” by ophthalmologists to  treat wet AMD. Studies show it works  as well as injections of two similar but staggeringly expensive drugs, Lucentis and Eyelen. Avastin costs about $50 a dose while Eyelen is $1,800 and Lucentis is $2,000. (Naturally Medicare pays for all three.)

What was the shot like? “You’ll feel pressure,” the retina specialist said. “You’ll feel a prick,” his technician said. They were both right. On a pain scale of 1 to 10, I’d call it a 3—and the hurt was mercifully short, just a second or two.

At the end of this month we’re going back to winter quarters in our Chicago suburb, and we’ve arranged for a followup injection in October. There will be a third a month later, after which a reassessment, and perhaps injections for the rest of my life—as long as they work.

So I have the kind of hope that Henry Grunwald never enjoyed. Of course, our cases are different in that I’m totally deaf. Not to put too fine a point on it, functional blindness would send me up a very dark branch of shit creek.

I don’t pretend to be as distinguished a writer as Grunwald, but still will follow his example in chronicling a disease that affects millions of people around the world. Stay tuned.

Thursday, September 7, 2017

Not a piddling matter

A westbound Canadian calls at Capreol, Ontario, in 2007, when Debby and I last rode that magnificent transcontinental train from Toronto to Vancouver.
The days are dwindling to the last big train trip Trooper and I will take for the book-in-progress, Places We Have Peed: Traveling with Service Dogs in North America. (Christine Goodier, a retired travel magazine editor who lives in Sarasota, Fla., is my co-writer. She also has a service dog, Raylene, a Lab and fellow graduate of Trooper’s at Dogs for the Deaf in Central Point, Oregon.)

But I’m a little nervous about this journey, to begin November 3.

It’s a coast-to-coast Canada trip aboard two famous trains, the Ocean between Halifax and Montreal, and the world-renowned Canadian from Toronto to Vancouver. (We’re also taking a connecting regional train between Montreal and Toronto.)

The Ocean is a reliable performer, almost always getting into Montreal on time or just a little late.

But the Canadian’s timekeeping has been in a shambles all summer. It’s not just a little late every day but big-time late—six hours behind schedule into Vancouver if it’s lucky, as many as 20 hours if it isn’t.


The big problem is the long, long freight trains (20 to 30 per day) the Canadian National, over whose tracks the Canadian runs, has been fielding this year, thanks to an upturn in the economy. The 2 1/2-mile-long double-stack container trains, with 150 or more cars and multiple locomotives, typically are longer than the sidings on the line. The Canadian has had as many as 36 passenger cars in its consist, but is still short enough to fit into a CN siding.

So guess which train has to go ”into the hole” when they meet from opposite directions on the prairie? Yep. Every time. Also, if the Canadian creeps up on a dawdling freight going in the same direction, the slowpoke can’t pull over on a siding to let the passenger train go by.

So what? you might ask. You get more time on the train. What’s not to like?

Beside the happenstance that all the glorious daytime scenery in the Canadian Rockies might vanish into the night, there’s also the problem of Trooper’s toilet needs.

The Canadian is carded to stop for long minutes at several crew change and fueling points about six to eight hours apart, ordinarily enabling us to get off for a leisurely whiz and poo without inconveniencing anyone. But when these stops don’t come on time, that means I must beg the train manager (there are no conductors on VIA’s trains) to ask the engineer to halt the Canadian at little two-by-four flag stops that it otherwise would blast through at high speed.

We’re lucky that it’s VIA Rail’s policy always to accommodate the needs of service dogs, even though doing so might make a late train even later. Still, I hate to add to the delay.

Possibly by November, things will be better and delays will be minimal. But I’m not counting on it.