Monday, September 18, 2017

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.

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.

Why?

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.

Friday, August 11, 2017

Bringing things up to date

Trooper ashore at Anchorage.
It has been a few months since my last post, primarily for reasons of sloth. This morning, however, I am experiencing an unaccustomed burst of ambition. And so here I be.

In June Debby, Trooper and I took a two-week round-trip Alaskan cruise from Seattle to Seattle aboard the Holland-America ship Amsterdam, in service of our 50th wedding anniversary celebration. It was one of those trips that went exceedingly well, with no unpleasant adventures.

Trooper in our stateroom. He would have slept on that bed—if we let him.

We had chosen Alaska because there was no need to obtain annoying veterinary paperwork to take Trooper ashore at foreign ports for a few hours' visit. Many countries, especially Caribbean island nations, require not only rubber stamps but also special immunizations, some of which are quite expensive. All we needed for Alaskan ports was a valid rabies certificate, and that is a state requirement—not a national one.

We did get a Form 7001, the classic International Animal Health Certificate, signed by our veterinarian—just in case U.S. customs and immigration decided to be difficult during re-entry to the mainland at Seattle. It didn't.

We took a constitutional around the promenade deck several times a day.

There was just one brief awkward moment when an Alaskan venue refused entry to Trooper. A young woman said "No dogs! No dogs!" at the door of the Baranov Museum on Kodiak Island.

"He's coming in!" said our tour guide.

"No dogs!"

Trooper's customized relief box on the stern of the ship.
At which the tour guide quickly proceeded to educate the young woman, who spoke with a Russian accent, about U.S. service dog laws. We suspect she may have been an exchange student doing an internship at the museum, named for the governor when Alaska was a Russian colony.

And that was that.

Baranov Museum, Kodiak Island.
There was one small incident in the ship's buffet restaurant that was slightly painful.

It was the height of lunchtime, and crowds were milling from serving station to serving station. I was trying to thread Trooper through the forest of legs to safety when I momentarily took my attention off him to apologize to a woman whose elbow I had jostled.

Just then a waiter pushed a multilevel cart of desserts past us. The bottom shelf, laden with pies and tarts, lay right at the level of Trooper's head, and . . .

There were witnesses, both passengers and crew. But the captain never did summon us before the mast for a tongue-lashing.

The lesson: Even highly trained service dogs are still dogs, and dogs will always go for the main chance if they think they can get away with it.




Friday, May 26, 2017

Sugar gliders? Reptiles?

I'm at work on the section about airline travel for Places We Have Peed: Traveling with Service Dogs in North America, and have spent the last few hours checking individual airlines' service dog policies. They're all basically similar, although a few have some odd rules.

JetBlue, for instance, won’t allow service animals in training in airliner cabins, nor will it permit as service or emotional /psychiatric support animals “hedgehogs, ferrets, insects, rodents, snakes, spiders, sugar gliders, reptiles, non-household birds (farm poultry, waterfowl, game bird & birds of prey), animals improperly cleaned and/or with a foul odor, animals with tusks.”

Sounds as if I'll have to leave my assistance cockroach at home. Sorry, Archy.

Saturday, May 20, 2017

Bureaucracy

Be patient. Grit your teeth and hope for a supervisor.

That’s the lesson I’ve taken from making restaurant, hotel and train bookings for my service dog Trooper and me, both in the United States and Canada, over the last few weeks.

“What does the dog do for you on the train?” asked an Amtrak ticket agent when we called to ask that he be added to the manifest for a recent overnight train trip. “Does he weigh less than 20 pounds and do you have a traveling crate for him?” (Those are the rules for transporting pets.)

“Show me his license,” said the waiter at a little restaurant on Chicago’s North Shore.

“Please sign this ADA service dog agreement,” said a New Orleans hotel clerk.

All of which, of course, were either irrelevant or illegal. Trooper and I stood our ground, and the Jacks-in-office caved after we pointed out the law, usually to their superiors. Justice Department rules are clear: all a venue can ask are two questions: 1. Is that a service dog? And 2. What task does the dog perform for you? No identification of any kind is required. Not even a colorful vest on the dog.

U.S. disability law is clear, and when its details are explained to clerks and agents, things tend to go all right. 

Canadian law, however, is murky, but getting better. For the last three years the powers that be in Ottawa have been fashioning a nationwide law about service dogs, but it’s a slow and plodding process. Each of the ten provinces has its own law about service dogs, and while the details are mostly the same, they are not identical—and important items differ considerably from U.S. law.

The biggest difference: In the U.S., credentials are never required of service dogs or their handlers, not even colorful vests identifying them as service animals. In Canada, they are.

Most provinces mandate that a service dog carry documentation that it was trained at a government-approved facility. They also mandate that the human member of a service dog team hold an ID membership card in a government-approved disability organization. Such rules are illegal in the United States.

I suspect, however, that they result in far fewer fake service dog incidents in Canada.

There is just one rule regarding bringing an ordinary pet over the U.S. border into Canada: The dog must have a current rabies certificate. Same with a service dog.

But getting a service dog onto an airplane or a train in Canada is much more involved than that. Both Canadian airlines and trains allow service dogs to fly for free, as they do in the U.S. But “the animal must be harnessed [with an identifying vest] and certified as having been trained to assist a person with a disability by a professional service animal institution,” as Air Canada's rules say.

Fair enough. So I emailed VIA Rail to establish Trooper’s bona fides for a planned transcontinental train journey this fall in the service of Places We Have Peed, the book-in-progress about traveling with service dogs in North America. I said Trooper and I normally travel with a rabies certificate and a copy of Form 7001, the U.S. Department of Agriculture’s International Animal Health Certificate, signed by my veterinarian. Would that be sufficient?

Someone in Customer Service replied: “When travelling with a service animal, you will need to travel with the dog's vaccination records. The documents you mention (rabies certificate and a USDA Form 7001 would be required. Prior to travel, you must also provide us with a doctor's letter stating that you must travel with the service animal. If you are a member of the ADA (Americans with Disabilities Act), you can also send us a copy of this documentation. The service animal must wear a vest (displaying that it is a service animal).”

Huh? The ADA is not something one can be a member of; it is a law, not an organization. I decided to let that pass, and wrote back:

“You requested that I provide you with a doctor’s letter stating that I must travel with the service animal. I cannot do this.

“It is not true that I cannot survive without a service dog, and I doubt that any other service dog partner would make such a claim. A service dog is trained to make life easier for a person with a disability, not to keep that person alive. My service dog Trooper, a professionally trained “hearing dog,” alerts me to sounds such as a fire alarm, a doorbell, a telephone (I have a captioned phone), an alarm clock, an oven timer, people approaching behind me, the call of my name, and the like.
Trooper and I are a working unit. I am never without him, and he is never away from me.

“I am totally deaf. Although I cannot provide you with the doctor’s letter you wish, I can provide you with a recent audiogram that proves I have absolutely no hearing.

“If I do this, as well as provide you with ID cards from Dogs for the Deaf (Trooper’s trainer) and the State of Michigan service dog registration, as well as an USDA Form 7001 signed by my veterinarian that includes a complete immunization record, will you accept me as a bona fide traveler with a disability who uses a service dog?”

I suspect the original Customer Service respondent was a low-level, inexperienced agent—and that the agent who responded to my second message was a veteran who had dealt many times with service dog handlers. She wrote:

“The ID cards from Dogs for the Deaf and the USDA Form 7001 are acceptable. This information should be provided to us in advance [of booking]. The service animal must wear a vest (displaying that it is a service animal).”

The agent also suggested that I enroll in the “VIA Préférence program” similar to schemes everywhere that contain all a passenger’s personal information to speed issuance of tickets. They’ll add Trooper’s data to mine so that I don’t have to jump through hoops in the future.

All this huggermugger has a further happy result: When I travel on VIA’s Canadian from Toronto to Vancouver in November, Trooper and I will luxuriate in a spacious double bedroom for the price of a one-person roomette, a prize VIA offers to service dog teams. That’ll save me a thousand dollars Canadian (about $750 US at this writing).

Saturday, April 8, 2017

Our latest adventures

Trooper on the train. This photo reminds me of Chessie the Cat (below), the mascot of the old Chesapeake & Ohio Railroad, used in advertising the railroad's comfortable sleeping cars.

Trooper, Debby and are just back from a successful week’s visit by train to the East Coast. In it we connected with our family in Arlington (Va.) and performed some more hands-on research for the book-in-progress, an “adventuring handbook.” Its title: Places We Have Peed: Traveling with a Service Dog in North America.

I’m writing it with Chris Goodier, another service dog handler, who lives in Sarasota, Fla. She’s doing the sections on cruising and RVing, I’m writing about riding the train, and we’re sharing the reporting on other modes of travel, such as flying and local transportation.

Naturally our individual adventures are going into the book, and on this most recent trip I collected a couple that are worth mentioning.

In Washington, D.C., I used my iPhone’s Uber app to summon rides hither and yon, and that mostly worked very well. Trooper’s presence was never challenged. It’s illegal to refuse a ride to a passenger with a service dog, and doing so also violates Uber’s policies. I kept Trooper on my lap and off the seat, pleasing the drivers.

Except once. When the arriving driver spotted Trooper, he immediately put the pedal to the metal and sped off for parts unknown. The Uber app told me, as it always does, the make of car, the license number, and the driver’s photograph and name: Mohammad.

Mohammad may have had an unpleasant experience with a service animal, real or fake, and didn’t want a repetition. Or he may have been allergic. Or he may have had religious scruples about having a dog in his car. Many Muslims consider dogs unclean. I don’t know the truth, although I have a suspicion. But he did violate the Americans with Disabilities Act.

I canceled the ride and called another Uber. It came in less than five minutes.

I’m still debating with myself whether to inform Uber headquarters about Mohammad’s refusal to pick me up.

Whatever the reason, my deaf attorney friends tell me, illegal refusals to transport service animals should always be reported and a lawsuit filed if relief is not forthcoming.

But what about a driver’s right to practice his religion (if that is what it was)? It seems to me that two competing rights may be colliding here, and one of them has to give.

Practically speaking, the incident happened during midday when people were out and about, not in the dark of night when other Uber cars might have been scarce. I was not in the least bit endangered. I had been only mildly inconvenienced.

Should I, however, stand on principle? The courts did in siding against an evangelical Christian baker who refused to produce a wedding cake for a gay marriage. In American commerce, religious beliefs never  trump the civil rights of the customers.

Mohammad, I understand. But you need to understand, too. If ever I encounter you again, I will try to educate, not litigate. We can come to a compromise: Trooper will sit in my lap and not touch your car in any way. Okay?

APRIL 10. I managed to get through to Uber's help line, which actually has a listing for "service dog issues," and reported the incident, asking Uber to inform the driver of his obligations. Later Uber replied: "At the conclusion of our investigation, the partner you reported on 4/8/2017 has been provided with additional information regarding legal obligations and their Uber account has been reactivated. They have confirmed that they understand their legal obligations. Should we receive a second report of this nature, their account may be subject to permanent deactivation."

That's good enough for me.


By the way, to my question about service dogs too big to hold on one's lap, Uber said: "Partners are encouraged to carry a towel or a blanket with them in their vehicle for transporting animals. Because they may have an allergy, as well as other riders who may have allergies, they may choose to place a blanket over the seats. This is at their own discretion."


The second event involved a well-known national chain hotel in New Orleans. Upon checking in, I was presented with a document titled “ADA Service Dog Agreement” to sign.

I've seen this before. Such documents have nothing to do with the Americans with Disabilities Act. Based on pet-friendly hotel agreements, they make the signer promise not to leave the animal alone in the room, to keep the dog from barking, to pick up and dispose of waste, etc., and obey half a dozen other rules. And to agree to reimburse the hotel for any damage the dog might cause.

The hour was late and I did not think I could find space at any other hotel. A big music festival was going on in the French Quarter, and the city was hopping. So I reluctantly signed.

The next morning I sent an email to the hotel’s general manager. It said in part:

“I believe this document is gratuitous and discriminatory, and would like to suggest that the [hotel] refrain from using it going forward.

“A service animal trained to assist a person with a disability is legally an item of medical equipment—not a pet. You would, for instance, not ask someone with a breathing disability to sign an agreement to reimburse the hotel for any damage his CPAP equipment causes.  Such liability is already covered in the normal hotel/guest tariff laws. The same principle applies to service animals.

“I believe that the ‘service dog agreement’ instructions to pick up after my dog, etc., carries an implicit suggestion that I am not a responsible person and need to be reminded of obligations that every service dog handler knows by heart. Such a suggestion is, in my view, insulting and sets me apart from other hotel guests as a person with a disability.

“I understand that the hotel needs to distinguish between genuine service animals and fraudulent ones. But such a document puts the onus on the wrong party, and causes us distress.

“Thank you for reading this and understanding the issue.”

The manager responded quickly. He wrote:

“I have looked into the nuances of the 'Service Animal Agreement' that you signed upon registration. I can truly appreciate your concern and I cannot apologize enough that you were asked to sign this outmoded and unnecessary document.  To be fully forthcoming with you, this document has no purpose nor application as it relates to Service Animals and the [hotel].  Much to your insightful suggestion that the ‘[hotel] refrain from using it going forward,’ the template has been deleted from our database and all copies of this document have been destroyed.” 

Sometimes the squeaky-wheel approach does work.