A sobering day

A couple of months ago, I wrote about visitors to Walt Disney World who are using people with disabilities to enable them to take advantage of the “perks” WDW provides to families traveling with them. As someone who greatly benefits from the accommodations made to people with disabilities in various settings, and on the eve of a trip to WDW, I found this extremely disturbing.

Well, this morning I woke up to the following story on National Public Radio:

http://www.npr.org/2013/09/11/221017467/four-legged-impostors-give-service-dog-owners-pause

  

Lauren Henderson goes everywhere with her service dog Phoebe — to the grocery store, Disneyland, the beach. For Henderson, who used to be paralyzed, her 100 pound, lumbering Saint Bernard is a necessity.

An actor who lives in Malibu, Calif., Henderson uses her dog for stability and balance. And if she falls, Phoebe helps pull her back on her feet.

"She's basically like a living walker," Henderson says.

Lately, Henderson has noticed more dogs wearing vests that label them as service animals, but she can tell they're different from Phoebe. They'll shake, pee, bark incessantly or growl at people.

"I know how service dogs are trained, though, and I know the behavior they're meant to display in public and definitely are not," she says. "And that's not a service dog."

A service dog is highly trained to perform a specific task for its disabled owner. It's different from a therapy dog, which comforts the sick and elderly, or an emotional support animal, which soothes anxiety.

But a dog wearing a vest might not be any of those things. For people wanting to take their pets wherever they go, a brisk business has developed in the sale of bogus service animal certificates and vests.

Tim Livingood runs one of many websites that sell certification paraphernalia. For $65, customers can procure papers, patches and vests to make their dogs look official. They can even buy a prescription letter from a psychiatrist after taking an online quiz.

The laws are broad enough to allow that, Livingood says. While his business, the National Service Animal Registry, sounds official, he says government-sanctioned registration agencies do not exist — federal law does not actually require registration or identification patches. Property managers or airlines cannot mandate that service animals come with patches, and they can't ask owners to produce ID cards.

Joanne Shortell, who has a service dog, works to educate people about their rights to have service animals. And there's a lot of confusion, she says. Animals are helping more people cope with a range of illnesses and disabilities, but the terminology and web of access rights make it almost impossible to sort out the frauds from the legitimate helpers.

Is this the lesson we have learned from the horrific events on this date in 2001? Has the glimmer of hope and decency and shared purpose that we saw in the dark hours and days following that tragedy been replaced by despair and self-interest and cynicism?

I appreciate that this seems a very small concern next to discussions of military intervention in Syria. But perhaps the root cause is the same: our human tendency to view ourselves as more important than anyone or anything else. That tendency has undoubtedly led to a multitude of inspired ideas and inventions that have enhanced human existence. Our survival depends on our being able to keep the negative aspects at bay. Are we up to the task?

Love,

Rebecca

A good start

Has it really been an entire week? My last post was on 02 September, so I guess it has. How did that week fly by so quickly?

The long and short story is that we had a wonderful holiday. The first night, the ten of us gathered at Simmie and Ronen’s house for a lovely dinner. Ronen’s family follows a tradition of eating particular fruits before the start of the meal, with an explanation of the significance and symbolism of each fruit before it is eaten. Simmie, ever the preschool teacher, put the explanation for each fruit on a piece of paper, and Ronen distributed them so that we would each have something to read. This sounds quite a bit more serious than it is, particularly with the children enthusiastically expressing their pleasure or displeasure at some of the selections (beets, pomegranates, cabbage). The tradition is to have a whole fish on the table as well as fish tails. In deference to the vegetarians, Simmie has found a fitting substitute: candy jelly fish and chocolate fish. The latter are made every year for the holiday by a local chocolatier, and Simmie told us that every year she has the same discussion with the proprietor about why people are coming to her shop before Jewish New Year asking for chocolate fish!

We then ate our way through three days. After a lovely dinner with Simmie and Ronen the first evening, Barry and I prepared lunches at our apartment for after synagogue, the first day with Simmie and family while Dina and family were with friends, and the second day with Dina and family while Simmie and family were with friends. I had it all written down to keep it straight! Then on Sabbath, Simmie and crew went to a friend while Barry and I had lunch at Dina’s house. It was a beautiful day so we spent a good part of the afternoon sitting outside. All in all, it was a very lovely three days that went by very quickly.

We drove back to New York Sunday morning, and spent a good part of the day doing mundane things like laundry and taking care of the mail. Today Barry had meetings most of the day, so I am here having a quiet day.

I have a new project in mind. All these picture projects got us to thinking that we should try to put together albums to chronicle our lives over the past nine years as grandparents. I cannot quite remember just when I started loading pictures on to Kodak Gallery (now Shutterfly), but I believe we had the digital camera by the time Joshua was born and that I have saved all the memory cards we used. At least I hope I did. Putting together some pictures and writing a few paragraphs on Simmie’s early months, which I did for the daughter of a Pfizer colleague for a Bat Mitzvah project, got me to thinking about doing this. I suspect it could keep me busy for a long time.

Have a good week!

Love,

Rebecca

You can’t love ‘em all

It is Labor Day and the weather is lousy here in the northeast, so we figured we would go see another movie. We headed off to the AMC Loews 84^th Street on the Upper West Side of Manhattan to see “The World’s End,” which had received a reasonably positive review in the New York Times and a score of 90% on Rotten Tomatoes. To the best of our memories, we had never been to the theater where it was playing, which was recently renovated. They put in large, plush leather seats, and you buy a ticket for a specific seat. But they are missing the other nice aspects of the Lux Level found in the theaters in the Boston area.

This film was apparently the third of three comedies starring Simon Pegg and Nick Frost directed by Edgar Wright, following the successes "Shaun of the Dead" (2004) and "Hot Fuzz" (2007), neither of which we had seen. In the opening moments, you learn that, twenty years earlier, five friends had attempted but not quite completed a “pub crawl” of a dozen hometown establishments, the last of which is named “The World’s End.” The five friends reunite at the urging of one of them who is determined to try the drinking marathon again. It turns out that reaching the pub “The World’s End” is the least of their worries.

I don’t want to give away too much of the plot, but rereading A.O. Scott’s review in the New York Times, I see that we had perhaps glossed over or not fully appreciated some of his words. “… then the robots show up… I honestly don’t want to say too much about the robots, because their arrival sends “The World’s End” spinning into an absurdity that must be experienced fresh.”

Must it be experienced? Frankly, we think we might have been better off without that particular experience. 

Ah, but food is always the antidote to a not-so-good movie, so we went to a restaurant called Deli Kasbah that was just around the corner from the movie theater. When our daughter Dina was in high school she had a good friend whose family lived very close to this restaurant and we remember Dina often eating there with her friend, but we had not been there in many years. It is a fairly serious meat restaurant but they did have a very tasty plate of falafel and Israeli salads, which I always enjoy.

www.delikasbah.com

If you or your families are going back to work or school tomorrow, travel safely and enjoy!

Love,

Rebecca

Music, art, and inspiration

Where to begin? It has been a very full few days and I have quite a bit to share. I suppose the best place to start is from where I last left off, last Wednesday.

Barry spent Thursday morning in his lab and office, and then came home in the early afternoon for our drive up to Tanglewood. Some of you who have been following my blogging since last summer may recall that we had bought tickets for three James Taylor performances at Tanglewood the first week of July 2012 that we were unable to use because I was still undergoing chemotherapy. We also had reservations at a nearby bed and breakfast for which we had made a deposit of one night’s stay. At the time, Barry did not tell the owner why we cancelled, but she did say that if we rescheduled within six months she would honor that deposit. But there was not an opportunity to do that. Nonetheless, we figured that since we had wanted to check out this place, we should see if the room was available for last Thursday. We contacted the owner and explained the reason for our cancellation last summer, and she insisted on extending the ordinary six month time limit and considering the room paid. It turns out that her mother had been treated for lymphoma many years ago, and died only recently of other causes. So we had a nice place to stay near Tanglewood. Actually it was a very good location because it seemed to be in the opposite direction of the bulk of the traffic leaving Tanglewood after the show.

The show was incredibly great fun, and apparently one of the largest audiences ever assembled for “Wait Wait Don’t Tell Me,” with 8000 folks in the shed and on the lawn! And they were clearly a very loyal and enthusiastic audience. When you buy tickets in advance to see a taping of WWDTM, hosted by Peter Sagal, you do not know who the co-hosts and the special guest will be. The co-hosts last Thursday were voices very familiar to WWDTM fans: Amy Dickinson, Tom Bodett, and Charlie Pierce. The guest was something of surprise: the classical pianist Emanuel Ax. He turned out to be quite a personable and amusing fellow, not necessarily attributes you expect from a classical musician. He talked about a proposal to form the Lizzie Borden Trio, with Emanuel Ax on piano, Yo-Yo Ma on cello, and Anne-Sophie Mutter on violin, whose three names shorten to the phrase Ax Yo Mutter. He then added that he is not an automatic axe, he is Emanuel Ax (you need to pronounce this out loud to make it work). Who would have thought to hear this sort of humor, delivered so well, by a classical pianist?

After staying over in the B&B, we wanted to see some Berkshires sites before heading back to New York. So we went to the Berkshire Botanical Garden, small compared to our beloved NYBG but actually quite a lovely place.

Then we went to the Norman Rockwell Museum. We had been there once some years ago, but they had two special exhibits that were quite interesting. The first was art by Norman Rockwell’s son, Jarvis Rockwell, called “Maya, Illusion, and Us,” an interesting exhibit of work very different from that of his father. This was not our own Maya, of course, whose name is Hebrew for a spring or brook, but we learned that Maya is (also) a Sanskrit word meaning “illusion.” The second special exhibit was “Snow White and The Seven Dwarfs: The Creation of a Classic,” celebrating the 75^th anniversary of Walt Disney’s first feature-length animated film, released in 1937. Apparently Norman Rockwell and Walt Disney had been close friends, and Norman Rockwell’s offspring wanted to do this tribute to that friendship.

We left the Rockwell Museum in the early afternoon and headed back to New York. The traffic was quite surprisingly light and the ride went smoothly. We had a quiet dinner at home. We went to synagogue on Saturday morning, where there was a guest speaker, Rabbi Jeremiah Wohlberg. The title of his discourse was “Standing on the Edge of Life and Faith as the New Year Begins.” He told about his experience last spring of collapsing and coming close to death due to a problem with his heart, and of the surgeries and therapy that brought him back to health. His main focus was on the effort to find an answer to why God allows such things to happen to us. He ultimately reached the conclusion that God is not determining all of these physical maladies, but rather can be a source of strength to help us get through them. I am truly not doing this justice, but what I will say is that I was pretty much reduced to tears listening to words that resonated so clearly. After services I was not able to speak with him but I did go over to his wife and chatted with her, and I hope she relayed my message of gratitude for one of the most uplifting talks I have heard in a long time. I am going to try and see if I can obtain a copy of this talk to share with all of you.

The weather is not great here, and most of our holiday preparations that can be done in advance are done; we are completely out of freezer space so I could not cook any more even if I wanted to. So we went to see the film “In a World,” that is playing at the Elinor Bunin Munroe Film Center at Lincoln Center and had received very good reviews. It is a romantic comedy about a struggling vocal coach who strikes it big in the cutthroat world of movie-trailer voiceovers, only to find herself in direct competition with the industry's reigning king - her father. It was written and directed by Lake Bell, who won the Sundance 2013 Waldo Salt Screenwriting Award for the script. The cast includes a number of familiar faces, actors whose names you may not know but you have undoubtedly seen in many other roles. I recognized Dmitri Martin from the 2009 film “Taking Woodstock,” and Barry pointed out to me that Nick Offerman from the NBC series “Parks and Recreation” was also in the film.

I received a touching request from a Pfizer colleague whom I did not know well. Her daughter, who was born 10 weeks premature with a very low birth weight, is about to celebrate becoming a Bat Mitzvah. She is trying to put together a collection of pictures of other premies to show how well they are doing. Apparently another colleague remembered that I had told him about our first child being very premature, and hooked us up. So now I have another fun project, to find some old pictures. Of course, Simmie was born in the days before digital cameras. But for my 60^th birthday celebration, our daughters and sons-in-law had put together a photo collage Powerpoint presentation, so they had scanned in many old pictures.

Have a nice Labor Day and back to work and school week.

Love,

Rebecca

A lofty goal

Today is the 50^th anniversary of the famous “I Have a Dream” speech, delivered by the late Dr. Martin Luther King, Jr. to over 250,000 people from the steps of the Lincoln Memorial in Washington DC. This speech is often referred to as a defining moment of the American Civil Rights Movement. The speech has been referenced and televised so many times that I can no longer recall whether I actually watched it back then, when I was just a couple of years older than our grandson Joshua is now.

“I have a dream that my four little children will me day live in a nation where they will not be judged by the color of their skin but by the content of their character.” This sounds so simple, but fifty years ago it was nearly impossible to imagine and unfortunately today we still have some distance to go. The dream has also not been fully realized for people who are different in other ways: different religions or ethnicities, different genders, different socioeconomic circumstances, different views from our own. There is still much work to be done to realize these dreams.

I have another dream. I have a dream that my four little grandchildren will one day live in a world where major illness is but a minor inconvenience. Unfortunately, this dream does not sound so simple. Yet, although we still have some distance to go, it does not seem impossible to imagine. If the citizens of the world could only figure out how to stop wasting energy resisting Dr. King’s dream, we would have the resources we need to realize this universal dream.

A few weeks ago I shared with you a piece written by our Sharon friend, Mark Weiner, who was diagnosed with a brain tumor shortly after my diagnosis last year. At 3:00 pm today, Mark is scheduled to be interviewed about his experience on the Salk & Holley Show on WEEI 93.7 FM radio in Boston. As part of this, funds will be raised for research at the Dana Farber Cancer Institute in Boston, where Mark was treated. The radio station streams line on www.WEEI.com , and call-in donations can be made toll-free at 1-877-738-1234 between 2 and 6 pm Eastern time. Mark must have been channeling my thoughts when he wrote:

So for those who can, how about donations of $18? 0r, multiples of $18. And each donor should explain to the phone operator the meaning of 18 - Chai - a donation of life for all those suffering cancer.  Now, if one person pledges $18, they'll call it a donation. If 2 people pledge $18, in harmony, they may laugh at the coincidence of 2 donations with the same odd number (odd but even), and if 3 people pledge $18, they may think it's an organization. But if 1000 people, yes 1000 people pledge $18, they may think it's a movement, a movement to wipe out cancer. (Arlo Guthrie, "Alice's Restaurant" - something like that)

[Some of you may be wondering why Mark talks about $18 or multiples of $18. If numbers are assigned to the letters of the Hebrew alphabet (the English equivalent would be A=1, B=2, C=3…), the total of the letters for the Hebrew word for life, Chai, is 18. So it is common for people to give charity in multiples of 18.]

Have a healthy and wonderful day!

Love,

Rebecca

UFOs?

We had a wonderful weekend. The weather was as lovely as promised. We had a quiet Friday evening in our apartment and the ten of us had Sabbath lunch at Simmie and Ronen’s house. Barry and I brought food from New York and, for dessert, Simmie baked chocolate chip bar cookies and a peach pie with beautiful peaches from Ward’s Berry Farm, a wonderful place right in Sharon. We sat outside for a while and the children played in the yard.

http://www.wardsberryfarm.com/

Eliana and Maya both had birthdays last week, so we had celebrations for them this weekend. By Sunday evening, everyone had to turn in early because Monday was the first day of school. We spoke with Simmie on Monday evening and both she and the girls had a very good first day. Yesterday was Ronen’s birthday. Unfortunately, this gets lost in the shuffle of their wedding anniversary and both girls’ birthdays (on the 18^th, 19^th, and 21^st of August), so I wanted to be sure to mention it here!

Barry and I took advantage of our free Sunday evening in Sharon to go see the new film called “The Butler” on the Lux Level at the nearby Legacy Place Theater. This is based on the true story of a man who worked as a butler in the White House for over fifty years, serving eight presidents through a period of much change for African Americans in the United States, from President Eisenhower in the 1950s through the election of President Obama in 2008. It was a very engaging, if somewhat a bit over-dramatized, story of a family who suffered much personal loss and upheaval.

Toward the end of the film, the main character and his wife are in their 80s. Based on all of the scenes from their younger years, his wife (played by Oprah Winfrey) had been a heavy smoker, and towards the end was on full-time supplemental oxygen, presumably for chronic obstructive pulmonary disease. She is shown using the O₂ for just one brief scene and then she dies. As someone who has been on full-time supplemental oxygen for a number of years, I find these portrayals rather disturbing. First, they perpetuate the assumption made by people who don’t know me that I am on supplemental O₂ because I was a heavy smoker (a sort of “blame the victim” mentality; just for the record I have never smoked a cigarette in my life). Second, a nasal cannula is used as a code in films for a character being near death, which hopefully I am not. I have to admit that this portrayal has taken on an almost comic turn over this past year and a half, when my pulmonary problems were pushed to the back of priorities, relevant only to how they would impact my ability to tolerate the chemotherapy regimen. Still, my pulmonologist worries that one nasty infection could do significant damage, so I continue to try to be careful.

This got me to thinking about how seeing a person using supplemental oxygen in public is still relatively rare, and then the comedic side stepped in. I should start an organization called UFO: Users of Full-time Oxygen. If people think we look like space aliens with our nasal cannulas and weird equipment, we might as well have a catchy name, right? Our logo could be spelled using latex tubing; the nasal piece would form the F. Perhaps we could persuade Oprah Winfrey to be a celebrity spokesperson for our organization, since her first initial is an O, the chemical abbreviation for oxygen. I think I may just be on to something big here.

While I am amusing myself, and perhaps some of you, with these ideas, in all seriousness, after the fall holidays I have an appointment set up to begin an exercise regimen to start trying to rebuild some of the strength I have lost during these many relatively sedentary months. I am hoping this may also help make me a bit steadier when walking, although I suspect this problem is not so much a matter of weakness but due to a combination of an impact of the tumor on my balance and the neuropathy (“pins and needles”) in my feet caused by the vincristine I received during the first few cycles of chemotherapy, which has never abated.

We have a quiet few days now, but on Thursday evening we are heading up to Tanglewood to see a live taping of the National Public Radio show, “Wait Wait Don’t Tell Me.” A few months ago we went to a live simulcast in New York City that was shown in various locations around the country. But a few years ago we went to an actual taping in New York and it was great fun. Mayor Bloomberg was the guest that evening; we do not yet know who will be on this week, but it is guaranteed to be a fun evening. We will be at home in New York for Labor Day because we are headed up to Sharon for Rosh Hashana (Jewish New Year) after Barry teaches his class next Wednesday morning, and we try not to drive back and forth more than once in the same week!

Have a nice week, all.

Love,

Rebecca

A powerful film

We went last evening to see “Fruitvale Station,” a film that was first shown at this year’s Sundance Festival and received fine reviews. It retells an incident that took place in the early hours of January 1, 2009, using some actual film footage captured on cell phones. A young unarmed man, along with some friends, were stopped by the Oakland, California, Bay Area Rapid Transit police. During the commotion that ensued, he was shot in the back by one of the officers. Tragically, he died in a local hospital shortly after he was wounded. The BART police officer was convicted of involuntary manslaughter, claiming that he thought he had pulled out his Taser rather than his gun, and served one year in prison.

I am somewhat embarrassed to admit that, unlike Barry, I was not familiar with this event, and had not read the reviews before going to see the film, a somewhat last-minute decision on our part. It was an incredibly powerful movie that seemed to be a realistic portrayal of a young man who admittedly had his share of problems but was sincerely trying to pull his life together and be a father to his young daughter. Because I did not know exactly where the story was going, I am in a good position to say that the movie did an excellent job of building the feeling that this young man’s life would not have a happy ending.

There has been much discussion during the ongoing New York City mayoral campaign (we are being bombarded with commercials, and the primaries are still a few weeks away) about a New York Police Department practice known as “stop and frisk.”  Many people believe that the policies put in place over the last few years have been largely responsible for the drop in major crimes in The City. But recent reports have indicated that only 10% of the people who are subjected to “stop and frisk” are actually arrested for crimes. That seems to suggest that many completely innocent people, who perhaps are simply in the wrong place at the wrong time, or have similar characteristics to an actual perpetrator of a crime, are being stopped and frisked by the police. It is difficult for those of us who are not the objects of such things to relate to how this must feel. This film felt up-close-and-personal, and although I certainly appreciate the kinder and gentler New York that allows us to enjoy The City without the fear of rampant crime, learning of this incident is giving me pause.

Not wanting the entire evening to end on such a troubling note, we went over to Noi Due for dinner. There is nothing as comforting as delicious spinach lasagna!

Glorious weather is predicted for Sharon this weekend. We look forward to spending some time outdoors with the grandchildren.

Be well, all!  

Love,

Rebecca