Choosing the right words

After seeing Gloria Steinem the other night, Barry reminded me of something that had long since slipped my mind. Back in the mid 1970s, when we were newly married and graduate students at the University of Rochester, where Barry was pursuing research in the laboratory of a fellow named Michael Resnick, we joined the local chapter of the National Organization for Women. We were at a NOW meeting when Barry saw someone he recognized and introduced me to “Mike Resnick’s wife, Jackie.” To say the least, Jackie did not appreciate this introduction. Then and now, Barry is one of the most ardent feminists I know. I think he was just trying to tell me how he knew Jackie. But the language may have sounded as if he was expressing a view that surely would not have resonated at a NOW meeting.

A friend just sent along a link to a fascinating video. Whether you have heard the sounding of a Shofar (ram’s horn) many times or never heard it at all, this is a wonderful experience.

Have a great day.

Love,

Rebecca 

The clothes make the man

Our grandson Joshua is a wonderfully healthy and energetic ten year old boy. Give him a ball and he is happy. Unlike our granddaughters (and their mothers before them), clothes do not interest him. During the summer he is happy in a t-shirt and shorts with bare feet, only wearing a pair of Crocs or sneakers when absolutely necessary. In the winter, his choice is knit pants and a t-shirt, occasionally long sleeved but often short, even on the coldest days. On Sabbath he would only grudgingly put a cotton knit shirt with a collar. But now that he is ten years old, his parents felt it was time for him to dress a bit more formally. They compromised on khaki slacks with a belt, a long-sleeved oxford cloth button down shirt, and a comfortable pair of “casual” shoes. The Jewish New Year, Rosh Hashana, was his first outing in his new clothing. At the risk of sounding like a grandmother, he is one terrific looking young man! Not only did he look older, but his behavior was somehow a bit more mature, and he spent more time sitting with us during the meal than usual. He is handsome even in his camp clothes, but dressed up we can only imagine all the girls who will be chasing after him in a few years! When you put his looks together with his great sense of humor and fun-loving spirit, he is a real catch.

This reminded me of an expression attributed to Mark Twain, “the clothes make the man.” In fact, the full version of what he wrote is

“Clothes make the man. Naked people have little or no influence on society.”

Maybe this explains why we all like to have new clothes for the New Year. Putting on new clothes is an outward reminder of the inner process of sprucing up our acts that is the core of the “ten days of repentance” from Rosh Hashana through Yom Kippur. What better excuse can there be for shopping?

We had a wonderful holiday. The first evening we all gathered at Dina’s house for a delicious meal. Barry and I hosted one daughter and her family for one lunch and the other and her family for the other. With the children growing and the new addition, our apartment is just not large enough for all of us to eat a large meal comfortably.

We headed back to New York early on Sunday because we had tickets for another event in the series that included Stephen Colbert at the 92^nd Street Y: New York State Senator Kirsten Gillibrand with Gloria Steinem. Whether or not you agree with Ms. Gillibrand’s views as a liberal Democrat, she is quite an impressive person. She held a variety of different positions after graduating from law school until she realized that her true passion was for public service. Gloria Steinem is as sharp as ever at 80 years of age. It was while looking up her age that we stumbled upon the fact that her husband had been treated at MSKCC for what the paper called “brain lymphoma,” otherwise known as primary central nervous system lymphoma, my diagnosis. It is a pretty good bet that Lisa DeAngelis was his oncologist. He died at age 62 in a hospital in California in early 2004.

To end on a happy note, the following was announced on Saturday on Chelsea Clinton’s Twitter feed (not something I read regularly but found in my search this morning):

Marc and I are full of love, awe and gratitude as we celebrate the birth of our daughter, Charlotte Clinton Mezvinsky.

In my mind, being nominated for or even elected as President of the United States does not trump this event for the new grandparents!

Have a great week.

Love,

Rebecca 

Two movies and Stephen Colbert

I think we made a wise choice to stay away from Manhattan on Sunday, where 300,000 people gathered for the People’s Climate March. Here is what it looked like:

 

In our younger days this would have been a moving experience. I am glad so many people cared enough to be there, yet I have to wonder whether this sort of outpouring accomplishes the goal. I hear the message, but, to be perfectly honest, I wonder how much I am personally willing to sacrifice. Could I live with less heating and air conditioning or less being driven in my own car? Is my pulmonary disease, with lungs that barely function at comfortable temperatures, just a convenient excuse for the heat and air conditioning that leaves a large footprint on the planet? I often ask myself these sort of “what if” questions, wondering what my life would have been like now without the pulmonary disease or the CNS lymphoma. Oddly, though, the questions tend to center on other unfortunate things that may have happened, such as losing my job at Pfizer during one of the waves of layoffs. Perhaps the moral of this story is that none of us can fully know what is around the next curve in the road. But climate change? That, we know. The only question is whether we can or will do anything about it.

After running some errands on Sunday, we then headed over to one of the old movie theaters in Westchester that shows independent films to see “The Trip to Italy.” Two restaurant critics, played by Rob Brydon and Steve Coogan, set off on a one-week drive around the Italian countryside, stayiing ad upscale small hotels and reviewing exquisite restaurants. This is the second such film the pair has done; the first was called "The Trip"and featured a similar excursion in the English countryside. There is much witty banter - unscripted - and a wide variety of beautifully prepared and served food. The amusing conversation and the magnificent images of the green, rolling hills result in a most enjoyable two hours.

We had a terrific last day before the full schedule of three weeks of fall Jewish holidays begins this evening. We had purchased tickets to see Stephen Colbert at the 92^nd Street Y interviewing the heads of Google, Eric Schmidt and Jonathan Rosenberg. It was a terrific chance to see him in what will be his “new role” when he takes over as host of CBS’s “Late Night” program next year. I cannot even begin to do this justice. Steven Colbert was a winning combination of sharp and funny. I had out a pen and some paper thinking I would take notes, but the conversation was so rapid-fire that I could not interrupt my attention to write! They spent some amount of time talking about Google’s plans for the future, including a pair of eyeglasses that have a chip embedded in the lenses that can measure glucose levels, eliminating the need for people with diabetes to be constantly pricking themselves.  

Since we were driving into the City for an event that did not begin until 8:30, we figured we would take this last chance to see a movie, and went to see “The Skeleton Twins,” starring Kristen Wiig (Maggie) and Bill Hader (Milo), which was playing near the 92^nd Street Y. As the movie opens, Milo has slit his wrists and his twin sister Maggie, who has not seen her brother in ten years, flies out to California to be with him. When he is discharged from the hospital, they return to the home Maggie shares with her husband (played by Luke Wilson) in New York. The movie then traces their relationship as they begin to know and understand each other following their long separation, divulging more and more about how they became the troubled adults they both are. It had some funny moments but was certainly not a comedy. Although not an entirely realistic story, it was moving and thought-provoking.

It is time for me to go back to packing for our trip to Sharon when Barry returns from teaching his class. I am not even taking the laptop with me. We will be busy preparing for the rest of today, and the holiday goes through Sabbath. So it will be early next week before I am back on-line, but I am sure I will have something to say; I always do!

Best to all for a happy and healthy and productive new year.

Love,

Rebecca 

On the lighter side

With all the pain and suffering in the world, it is sometimes helpful to take a break and focus on the lighter of life.

 To hear tell on the network news, people are beyond excitement as Apple releases the iPhone6 today. Concerned that stores may quickly deplete their stock, some particularly hardy and dedicated souls have slept outside of Apple stores for the past few nights to secure a place in line. As a person who has yet to learn all the functionality of my “old” Samsung Galaxy Note II purchased two years ago, I am amazed at this dedication to new technology. The question is whether this is an asset or a detriment. Are we putting too much of our energy into flashy accoutrements while short-changing the things that really matter? Without doubt we need both, but I cannot help but wonder if the balance is not quite right. I suspect my Samsung will continue meet my needs for mobile communication until I do something foolish like drop it (as I did in July with our old camera) or lose it.

 Stephen Colbert had an especially funny and clever bit about “boots on the ground” on his show last night that I just had to share here. I am really going to miss him and his unique sense of humor when he moves to the David Letterman spot.

http://thecolbertreport.cc.com/videos/yupbhd/no-boots-on-the-ground-in-iraq

We are in New York this weekend; we will be heading back to Sharon next week for Rosh Hashana (Jewish New Year). We had thought about going into the City for one last Sunday before the fall holidays and the cold weather until we heard this morning that the People’s Climate March & Mobilization is expected to attract an enormous number of people to Manhattan. If I were healthier we would think about going. But maneuvering a wheelchair through those crowds, knowing that the streets and sidewalks of Manhattan are not in particularly good condition, would be far too difficult.  

Have a great weekend, all!

Love,

Rebecca

Raw honesty

Barry shared with me an OpEd piece in yesterday’s Washington Post. This immediately brought to mind that movie we saw and I wrote about here a few months ago, “The Fault in Our Stars.” I had been interested in seeing that movie because the main character, a teenaged girl, required the use of full-time supplemental oxygen. I was hard pressed to find anything good to say about the movie. This week, Fox television is showing the premiere of a new series, “The Red Band Society,” about a hospital ward for children with serious and terminal illnesses.

It is fair to say that my demographic is not the target audience for this series. This will likely attract a similar audience to “The Fault in Our Stars,” as well as movie we did not see, “If I Stay”: adolescent girls. They are certainly an audience who are happy to watch this type of rose-colored-glasses portrayal of suffering.

I have copied the Washington Post piece here. This young woman has done a far better job of articulating these thoughts than I ever could.

Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all

By Lillie Lainoff September 12

Lillie Lainoff is a sophomore at Yale University.

In 2008, it was all about vampires. In 2011, it was dystopian societies with corrupt governments. And now, 2014 seems to be the year of teenagers with fatal diseases.

As far as Hollywood obsessions go, the first two are pretty benign. In real life, there are no supernatural creatures roaming the streets at night thirsting for human blood, no game shows forcing adolescents to fight to the death. Romanticizing those subjects isn’t that worrisome. A vampire is never going to write “Twilight” author Stephenie Meyer to tell her: “I’m not being portrayed properly, and now everyone thinks I sparkle.”

But teenagers with illnesses do exist. I am one of them, and it hurts to see movies and television glamorize our suffering.

When I was 14, I was diagnosed with an autonomic nervous system disorder called postural orthostatic tachycardia syndrome (POTS) that causes extreme dizziness, fatigue and other debilitating symptoms. At first I was just more tired than usual. But then, as I entered high school, I found myself unable to complete even the simplest tasks. I went from being a nationally ranked sabre fencer to having to crawl to the shower in the morning, my body too weak to stand up.

My mom would wake me up at 7 each morning to lift my legs in the air so the blood that had pooled in my feet, a side effect of the disorder, could more easily make its way back to my heart. Instead of spending my time between classes talking to friends, I hid in the bathroom to take blood-pressure medication, upwards of 20 pills a day. As time went on, I spent less time at school and more at home, in my bed, too exhausted to move.

In the past five years I’ve spent quite a bit of time in emergency rooms and hospitals across the country, and none of the patients I’ve seen were anything like the characters in the hospital portrayed in the pilot episode of “Red Band Society,” a new Fox show premiering Wednesday.

Viewers glimpse the lives of teenagers living in a fictional pediatric ward, including: Leo and Jordi, who are both suffering from bone cancer; Dash, who has cystic fibrosis; Kara, who has an enlarged heart; Emma, who has anorexia; and Charlie, who’s in a coma that is not explained. Most of the characters seem plucked from any high school and placed into a hospital. Their medical conditions are a side note; they look bright, well-rested, everything that patients in hospitals are not. The one exception is a character who is bald because of chemo.

I’ve been to the Mayo Clinic in Rochester, Minn., and Children’s Hospital in Washington. Unlike Dash, who runs around pulling hijinks, the boy I saw with cystic fibrosis was resting on a couch next to his mother, his face tinged a purplish blue. The teenagers going through chemotherapy weren’t racing down the hospital hallways in wheelchairs; they were holding onto plastic buckets in case they threw up. I’m not saying they were never happy. I can still remember the smile of a 6-year-old girl whom I sat next to in a waiting room at Mayo, glimpses of her balding head showing through a floral-printed scarf. While most children her age seem to have boundless energy, she sat quietly. At least half of the patients were attached to heart monitors or oxygen tanks, or were in wheelchairs.

“Red Band Society” is being lauded as a departure from the idealization of teen chronic illness and death in recent young-adult books and movies such as “The Fault in Our Stars” and “If I Stay.” Merrill Barr writes in Forbes that “what audiences will immediately take notice of in Red Band Society is its willingness to not sugarcoat the reality of the patients’ various situations.” But based on the pilot, nothing in how the patients are portrayed is realistic. The viewer never sees a character taking medication, going through a treatment or doing anything that a typical patient does in a hospital.

Compared with “The Fault in Our Stars” and “If I Stay,” in many ways “Red Band Society” (I watched the pilot during a free Web promotion) is more damaging and hurtful because it seems to assume that most sick teenagers can do everything healthy teenagers do — from having enough energy to go to parties to being optimistic about their situations.

Maybe I’d feel differently about the show if the ever-talented Octavia Spencer had been my nurse and had bought me 10 boxes of pizza, like she did for one of the characters in the pilot. I had excellent nurses, but it was clear that they were there to provide medical care, not to be my friends. Maybe if my hospital rooms had had huge windows and freshly pressed, colorful sheets and blankets, and had been large enough to fit 20 people comfortably, I would have been less miserable. But I doubt it. In “Red Band Society,” these props mask the gravity of the kids’ illnesses. But no matter how many cool posters or flat-screen TVs the set designer puts on the walls, they are still the walls of a hospital room.

In some ways the show’s faux-realism could be considered positive. I understand the power of portraying sick teenagers as “normal.” No one should be defined by his or her illness. However, I would be lying if I said that my disorder did not shape who I am. Although my condition is under control, it is something that is always present, that I will have to struggle with. Yes, I am more resilient and thankful for the life I have. But I would give up that gratitude if it meant that I could have never been sick, because, along with newfound strength there is emotional exhaustion. Aside from feeling horrible physically, I became more guarded, unwilling to let even my closest friends know how I was coping. And there is the constant fear that my disorder will get worse again, that I will lose everything I have worked for.

One of the best pieces of advice from my doctor at Mayo was: “Do not wear the bracelet,” meaning that I shouldn’t let my illness become my identity.

I am not my illness. But it is part of me.

According to “Red Band Society’s” Leo, “Your body isn’t you, your soul is you, and they can never cut into your soul.” However, the show’s writers seem to forget that every time you start a new medication or treatment, every time you get a new diagnosis, every time you hear the words “there is no cure,” your soul is cut into. It might heal eventually, but there will always be a scar, a reminder of the pain, the grief.

At one point in the pilot episode, Charlie, the narrator — who inexplicably speaks to the audience while in a coma — says, “Living in a hospital is sort of like going to a boarding school; you have a lot of rules but a lot of freedom.” How would he know? He’s in a coma. In fact, in hospitals there are far fewer people to interact with who are your age. In waiting rooms, parents might talk and try to seek solidarity with other patients’ parents. But most of us are focused on getting to appointments and are too worn down from treatments to form relationships with other patients. There might be a few sentences exchanged here and there, but more often than not the patients I saw didn’t talk to one another.

At the end of the pilot, Charlie says: “Everyone thinks that when you go to a hospital, life stops. But it’s just the opposite. Life starts.”

After hearing those words, I wanted to cry. Life does not start when you go to a hospital. If you’re lucky enough to have a non-terminal illness, life continues, in a warped version that includes more pain and obstacles than any young person should have to experience.

I am all for whatever it takes for patients to keep their spirits sufficiently high to get through treatment, and there is some evidence that attitude can influence outcome. But lest anyone thinks otherwise, there is nothing glamorous or romantic about it.

Love,

Rebecca

Finding the right track

One really neat thing about keeping this blog is that it helps me remember things I would have assuredly forgotten. For example, it is quite simple to find what I was thinking on this date for the last two years.

On 11 September 2012, my post was primarily about the scans I had that finally confirmed that the suspicious areas on my MRI scans did not represent active tumor cells. At the beginning of the post, I simply wrote

Eleven years, and it is still hard to believe it really happened. What more can I say?

The start of the 11 September 2013 post was about able-bodied people taking advantage of accommodations for the disabled at Disney World. I ended by saying,

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?

Here we are on September 11^th of 2014, the “Bar Mitzvah¹” anniversary of that horrible day, and history seems to be repeating itself. As in 2012, my MRI last week provided good news. But sadly, the situation in the Middle East seems even more frightening than in 2013.

One of the games I play on Lumosity is called “Train of Thought.”  It involves a set of different colored trains that each needs to make its way to the station of the same color, crossing tracks that must be shifted along the way.  Like all the games on Lumosity, once a level is mastered, the software moves to the next, more challenging level. The more difficult the level, the more trains are moving along simultaneously and the more tracks are required be rerouted in order for the trains to reach their respective stations. The game is intended to help improve the ability to function with “divided attention.”  This is not to suggest that this skill will enable driving while texting, but like operating a motor vehicle, the rapid-fire decisions revolve around deciding which of a number of competing urgencies should be handled first.

If only we could agree on which of the myriad issues in the Middle East should be resolved first and focus on getting past those, perhaps we could once and for all bring all the trains safely home to their stations. Sadly, the world does not seem to have learned much during these 13 years since the 11^th of September in 2001. The immense sorrow will never end, but the time has long since come for the people of the world to reach maturity and find the track that leads to peace.

Love,

Rebecca

¹ “Bar Mitzvah” (son of the commandments) is the coming of age (13 years) for a Jewish boy, after which he is responsible for observing Jewish law. The feminine form is “Bat Mitzvah,” which occurs at 12 years of age.  

 

Getting what we need

Towards the end of services at our synagogue in Sharon this past Sabbath morning, an announcement was made that members of the Sharon Police Department were on hand to conduct an emergency drill. The painfully loud alarm was sounded, and a number of synagogue members who had obviously been prepared for the exercise spread out around the sanctuary to provide instructions. At first, we were all told that the building was under lockdown while the cause of the alarm was being investigated. Within less than a minute we were told that we needed to evacuate the building.

Because of my pulmonary problems, which make long walks impossible, I have a mobility scooter that I use to travel to synagogue, one that has been specially rigged to allow its use on the Jewish Sabbath by those with special needs (a highly technical discussion which is best left to experts in Sabbath laws). My scooter was parked just outside the front entrance, leaving me only a very short distance to walk to the sanctuary. But we were directed out a different exit door, and then instructed to walk clear around the building to await further instructions. Fortunately, my older daughter Simmie was with me. I had to stop quite a few times on my way to the meeting spot.

In retrospect, I should have simply stayed put just outside the door, as Simmie tried to convince me to do. But because we had not received any advanced notice of the plans, this possibility did not seem tenable to me. Sometimes I am a bit too obedient for my own good.

In all honesty, I believe that the probability of an event necessitating such an evacuation is extremely low, and may not justify my worrying about special arrangements. Sharon is a small town almost, although not quite, in the middle of nowhere, unlikely a target high on anyone’s list. Still, the emergency drill was sobering and more than a little frightening. If we are really trying to do something more than just go through the motions and pretend we are prepared for any emergency, the needs of those who are less than 100% able-bodied must also be considered. I am not the only person in the community using a mobility scooter or otherwise unable to move quickly.

I am not usually one to make special requests. But as Mick Jagger sang so many years ago,

You can’t always get what you want (x3)

But if you try sometimes you just might find

You get what you need.

I have shared my thoughts with the synagogue leadership. I just hope they never have to worry about putting any of my suggestions into action.

Have a great week!

Love,

Rebecca 

A good start

The children all started school today. The summer certainly passed very quickly this year. Meanwhile, Barry and I had our own important outing for the day.

Dr. DeAngelis sees outpatients for follow-up on Tuesdays at the MSKCC outpatient facility on East 53^rd Street, where MRI is on the 8^th floor and neuroncology is on the 5^th. A couple of months ago I received a call to inform me that the equipment on the 8^th floor is undergoing renovation and I would need to have my next MRI, scheduled for September 2^nd,  at the main hospital on York Avenue between 67^th and 68^th Streets.

I have not been over to the main hospital in quite some time, and it is a very strange feeling to go there now. The surroundings are oddly familiar but I cannot specifically remember being there. Barry reminded me that I was there for my scans while I was undergoing treatment. I rather faintly remember that Simmie had come to New York and went in with me for my first scan there. I do not remember knowing how or why she went rather than Barry. It turns out that at Mount Sinai they had not allowed anyone to accompany the patient, so when I was transferred to MSKCC Barry assumed he would not be able to go and took advantage of my time in radiology to run home for a bit. When they came to get me they asked Simmie if she would like to go in with me and she said “sure.” I hope it did not do any more damage to her hearing than the years of listening to my singing!

Not knowing how the traffic would be this day after Labor Day, we left the house two hours before the scheduled appointment and of course made it to York Avenue more than an hour early. But they took me in fairly quickly, leaving us plenty of time to get over to 53^rd Street.

Dr. DeAngelis made her usual enthusiastic entrance with a smiling “you’re fine!” We chatted for a bit about my cognitive function, which has continued to improve slowly but remains a challenge, and agreed that we can schedule my next appointment for six months from now. In truth, my last appointment was supposed to have been only five months from the one previous, but ended up close to seven months because of our summer plans with the children. So six months should be just fine.

So we can breathe a sigh of relief today and get on with planning for the upcoming holidays!

Love,

Rebecca