Fear of Fido leads to a contretemps

“The doctor would like to see you without the dog,” said the retina specialist’s technician in the waiting room in a suburban Chicago hospital. I had arrived for an examination and a procedure that may or may not save the failing sight in my right eye. My service dog had accompanied me.

When, a month before that appointment, age-related macular degeneration (AMD) in my right eye was diagnosed by an ophthalmologist in Upper Michigan, I was naturally upset. I have been totally deaf for 74 of my 77 years. Becoming blind as well would send me paddleless up a dark branch of shit creek.

The Michigan specialist injected a drug into the eye to slow down the disease and handed me off to a new ophthalmologist in Illinois, where we spend our winters, with a recommendation for a second injection in a few weeks. Now my wife Debby, my dog Trooper—a fuzzy little schnoodle—and I were back home, and it was time for the second jab.

The Chicago technician’s words shocked Debby, who had accompanied me with Trooper to the appointment.

“That is illegal,” she said. “The ADA says that a service dog cannot be separated from the person he serves.”

She spoke the truth. The rules of the Americans with Disabilities Act give me the right to take Trooper just about everywhere, including doctor’s offices as well as restaurants, movie theaters, buses and trains. By law a service dog is an item of medical equipment, not a pet. Trooper, who alerts me to sounds, is an extension of myself, just as a prosthesis would be for a legless person. Over the almost two years we have been together, we have visited many doctors without incident.

The tech disappeared.

After a few minutes he returned and said, “The doctor is afraid of dogs.”

“Fear of dogs,” I said, “does not trump a service dog handler’s legal right to medical services.”

I knew the doctor spoke a Southwest Asian language as well as English, and speculated that she might be an immigrant—and possibly have a religious rather than psychological aversion to dogs. But that wasn’t for me to judge.

The tech disappeared again.

After ten or fifteen minutes we were ushered into an examining room, followed by a hospital administrator who spoke with a foreign accent that was difficult to lipread.

“The doctor is very afraid of dogs,” she said.

“Henry is a deaf man losing his vision,” Debby said. “This office has to step up!”

The administrator tried to broker a compromise. What If Debby took Trooper out of the room while the retina specialist examined me?

“I communicate by reading lips,” I said. “I have never met this doctor and have no idea if I would be able to lipread her easily.”

“I’ll interpret for you,” the administrator said.

“I can barely understand you,” I said. (She also had a hard time with my breathy deaf speech.) “I need my wife with me to help me understand what’s going on. And the dog must be with either of us.”

This administrator, despite projecting a calm and reasonable mien, clearly knew little about deaf people. She didn’t offer the services of a sign language interpreter—which would have been useless, since I don’t know sign. She also just could not grasp that being blind and deaf was a potential calamity, let alone that I needed to be fully informed of every detail of the examination and the ensuing procedure.

Much to-and-froing ensued.

I quickly realized that digging my heels in and demanding that the doctor swallow her fears to give me that vital injection would probably be counterproductive. If she really had a fear of dogs, her hand likely would be shaky, and that is not an ideal condition for a jab in the eyeball.

But I saw a way out, even though the clueless administrator couldn’t. I knew that there was another retina specialist—let’s call her Dr. X—in the same practice, at another location. If an appointment could be arranged that week with her, I told the administrator, that would solve the problem with the eye, if not with the dog.

“I’ll have to see if she’s afraid of dogs,” the administrator said.

I stifled a sharp retort, and she left the room.

When she returned, she was smiling. “It will be okay,” she said. “Dr. X is not afraid of dogs and will be able to see you Friday.”

That subsequent visit with Dr. X went very well indeed. She is extraordinarily lipreadable. She thought Trooper was adorable and Trooper thought she was adorable. He lay calmly next to Debby in a corner of the examining room while the medical providers went about their business.

In fact, the entire reception we received at this branch of the medical practice was so lovely that I thought advance word had come down from an apprehensive hospital management to treat the deaf guy and his service dog with kid gloves. I was offered the services of a sign interpreter, but I declined with thanks. Sometimes a little infamy helps.

What’s more, Dr. X thought the condition of my right eye’s macula, the center of the retina, was so good that I did not need an injection this time. She thinks it is possible that I may not have AMD in that eye at all. It could be a random event, she said, in which tiny blood vessels in the retina burst and caused an opaque smudge in my vision. That’s because the affected area is not dead center in my sight, as is usual with AMD, but slightly below and off to the right. My vision in that eye is still 20/20 (with glasses).

So there is hope. My next evaluation is in a month. We’ll be keeping an eye, so to speak, on the condition. Also, I’ll continue with a diet heavy on spinach (which I fortunately like) and other veggies reputedly beneficial to eye health. I’ll also keep taking a daily capsule of vitamins that some studies say help the eye and some studies say make no difference. Better to err on the side of caution, said Dr. X. I have no problem with that.

A subsequent consultation with a daughter-in-law who is a trained medical ethicist persuaded me that the doctor with a fear of dogs—if that is what it was—has rights, too. In some situations, canine aversion can be a debilitating psychological condition—indeed, a disability.

It’s not necessary to declare that one person’s rights under the law are more important than those of the other. It’s better, morally and ethically, to try to find an alternative solution. That is what I had unwittingly happened upon when I thought of Dr. X.

These events taught me another important lesson: When making an appointment with a new medical provider, I should always announce that I will be accompanied by a service dog. That is not legally required. It’s just good practical sense.

Invictus

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.

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.