Thursday, January 29, 2009

Coincidences: Lewy Body Dementia and Life

I was once the congregant of the brilliant rabbi Larry Kushner. He taught me...strike that. Not his style. He suggested I consider the possibility that there are no coincidences. That there are reasons beyond rational explanation why things happen the way they do, in terms of timing, effect, or other observable factors. He was introducing to me and to my fellow congregants the notion that God is at work. We didn't have to believe it. We just had to consider it. The interesting thing about this approach, I realize in retrospect, is that in considering the possibility it soon becomes clear that one cannot disprove it. Suddenly belief doesn't seem like such a large leap of faith, and even if doubt remains it does not preclude the possibility. Hold that thought.

Now, faithful readers of this blog (i.e., me and a colleague) will recall a few things I'm about to tie together. My mother died in 1999 after suffering 10 years with Lewy Body Dementia. A post on this blog that found its way onto a Facebook page about LBD brought me serendipitously into contact with the soprano Ilana Davidson, whose mother also died of LBD. In rushing to meet Ilana in New York City in late December, to discuss an idea of staging a benefit recital for LBD originally concocted by Ilana and a woman from an LBD charity in England, I stopped off to buy the book Life in the Balance, by Dr. Thomas Graboys, his memoir of living with Parkinson's disease and LBD. Since that time, I have been in touch via phone and email with Dr. Graboys and Kim Mitchell, executive director of the Lewy Body Dementia Association in Atlanta, whom I plan to meet in February when she comes to Boston on business. Hold these thoughts, too.

In our early correspondence, Ilana and I noted a number of coincidences, none of which I need detail now; suffice to say it involved the popular game of Jewish Geography and details of a performance she will give in Boston in March. These coincidences, despite the teachings of Rabbi Kushner, seemed to me to be little more than a fun device to build rapport and friendship between me and Ilana. Tonight, however, they seem like something quite different.

Tonight I went to see Dr. Graboys in person. He was giving a talk and a book signing at Brookline High School. Earlier this very same day, on Harvard's radio station, WHRB, they began an "orgy" of the music of composer John Zorn. The very first piece they played was "Chimeras", which features the elastic vocals of one Ilana Davidson. What are the chances? And during tonight's talk, Dr. Graboys himself spoke of coincidences, as did his wife. In spite of, or perhaps because of, their unfortunate situation, they believe they found each other for a reason (Graboys met his second wife shortly after his symptoms began to manifest themselves, though he kept his concerns about his condition private from her). The disease is teaching them both things they might not have learned had they been able to enjoy the carefree life they envisioned having together when they got married.

Seeing and hearing Dr. Graboys tonight was very powerful. It occurred to me that this was the first time I had been in the company of someone with my mother's condition since she died. The patience required to wait for the speaker's train of thought to return from derailment, the straining to hear the voice quieted by uncooperative muscles, the bent frame, the blank face, the shaking hands, all were familiar to me yet it had been so long since I had experienced them. Reading his book, written with the help of a friend, it was so easy to receive and process his thoughts; in reality, the work of getting that information on paper was a long and difficult effort. He seems healthier in the book than he is in person.

Of course, I could tell that when he called me in my office one day a couple of weeks ago. How shocked I was to answer the phone and hear, "Hi Jason, this is Tom Graboys." Not least because I was in the middle of writing an email to a local woman who runs a support group for people with LBD and their caregivers. Another coincidence?

Dr. Graboys' talk was very inspiring, and his lessons about staying engaged and being optimistic were important for many of the people in the room, most of whom had a decade or more in age on me. But it was the testimony of his wife that moved me the most. The patience and proactivity required of caregivers is an immense responsibility. I often think that my family and I failed my mother somewhat. We didn't know what to do or how to care for her; we didn't even have a proper diagnosis until near the end. But in retrospect there's more we could have done for her, to keep both her mind and her body more active. Not that it would have changed her outcome, but it may have given her a higher quality of life and a longer time to participate in it.

I remember one Mother's Day, I decided to take her out for brunch and then to a matinee movie. She'd been spending most of her time on the couch and I thought I was being a Good Son to take her out in public. We had a nice meal, bought the movie tickets, and sat down and watched the movie. Afterward, as we were walking into the lobby, my mother said she had to go to the bathroom. So I walked her to the Ladies Room and she walked in. As soon as the door closed behind her, I realized I'd made a tremendous misjudgment. What if she had trouble doing her business? What if she became confused and didn't know where she was? What if she couldn't find her way out, or remember that I was waiting for her? I tried to think what would be a reasonable amount of time to pass before I panicked and asked any stray woman in the vicinity to go in and check on her. Eventually, my mother came out. She had completed the task effectively, and I felt I had dodged a major bullet.

When it was my turn to have Dr. Graboys sign my book tonight, I said, "Hi Dr. Graboys, it's Jason Rubin." There was a pause, and I couldn't tell if he had forgotten who I was or whether he simply couldn't form the words or display an expression of realization. When finally he said, "Thank you for coming out here tonight," I felt the light had gone on again. I didn't want to trouble him further. I knew from my mother's experience that as the night wore on, her energy and competency would fade. I looked at what he wrote in my book and I recognized the small, tight handwriting so typical of people with Parkinson's.

Listening to Dr. Graboys, I know he is an incredibly intelligent, talented, and kind man. But he looks, acts, and sounds like a sick man. And that is how people see him on the street or in the supermarket. Yet he has such an amazing sense of humor and a remarkably positive outlook. He provides a glimpse of how my mother's experience could possibly have been different, just as his book gave me fresh insights into what her experience actually was.

So what does this have to do with the idea of coincidences, or more accurately the idea that there are no coincidences? I don't have that answer yet, although I have been wondering lately how it is that I am more hungry for information on LBD now than I was when my mother had it, and how I managed to get in the middle of a network of people - ranging from a New York soprano to a researcher at Drexel University to nonprofit heads in England and Atlanta to a doctor in Boston - who are seizing on an idea that was an innocent outgrowth of two people talking on Facebook. What forces brought all of us together, that out in the infinite muck of the Internet there has been this snowball effect starting with a simple post about my mother on the anniversary of her death, and now connections are building and energy is increasing and possibilities are growing.

Maybe it's God pushing us together. Maybe it's my mother. Or maybe it's just meant to be. But what is starting to really get me excited is the possibility that the spirit of an unborn soul who one day decades from now will benefit from whatever we might be able to accomplish has had the foresight to set her salvation in motion. It's not something I ever would have believed before. But you know what? I think it's worth considering.

Monday, January 26, 2009

The first time I "met" Lincoln

Until time travel to the past becomes possible, I'm not likely to ever meet the living Lincoln (Russell Johnson, "the Professor" from Gilligan's Island, was nearly successful in thwarting Lincoln's assassination in an episode of The Twilight Zone), but I have met him in marble a number of times. I'm referring, of course, to the seated Lincoln in the Lincoln Memorial in Washington, DC. I'll never forget the first time, when I was eight years old...and scared out of my wits.

By the time my family went to Washington, DC in the summer of 1971, I had already seen an episode of Gomer Pyle, USMC, that made me believe there was an awesome power in that Greek temple on the National Mall. The episode (number 99 of the series) was titled “The Show Must Go On.” In it, the cast is in Washington, DC, to perform a show. Gomer (played by Jim Nabors) is supposed to sing but he develops severe stage fright and loses his voice. Sgt. Carter, naturally, loses his temper. Gomer walks distraught through the nation’s capital, finding himself at the Lincoln Memorial. He enters, and striking close-ups of the Lincoln statue are shown. Gomer walks to the left, where, carved into the marble wall, are the words of the Gettysburg Address. He begins to read them in a raspy voice, which gradually – magically – begins to regain its full strength and sonority. He is cured at Lincoln Lourdes! The show does indeed go on, and Gomer performs “The Impossible Dream,” a song that remains an emotional one for me (not only because of the Lincoln connection but also because it became associated with the 1967 Boston Red Sox and Carl Yastrzemski's greatest year). Here's the clip:

The highlight of the trip to DC for me was supposed to be the Lincoln Memorial. My family built it up plenty. Even at eight years old, I was already a Lincoln nut but books provided a safe distance, physically and emotionally, from the giant of a man and his humongous likeness by Daniel Chester French. When the day came and we began to climb the seemingly endless steps leading to the Memorial, my heart was beating wildly. Given what had happened to Gomer Pyle, what transformation awaited me?

I remember my sister being several steps ahead of me, urging me to climb faster, but I took my time, unsure of how I would handle coming face to face with the Great Emancipator. Eventually I made it. The statue was indeed gargantuan, nearly 20 feet fall, with Lincoln sitting in a throne like a judge, a king, or maybe a department store Santa Claus. The great humor for which Lincoln was known is nowhere apparent on his face. He is white, at peace, perhaps the angel Lincoln sitting in heaven on the favored right side of the Creator. The image is daunting, awesome, yet ultimately not scary.

My father took a photograph of me looking up at the statue. My face is not seen, my memory is not clear, but it would not surprise me if my mouth was fully agape.

I have returned to the Memorial several times since then, most recently in 2005, when I took a photograph of my oldest daughter – then-eight, like me when I first visited DC – melodramatically recreating my pose from 34 years before. This was not something I imposed on her; it was her idea, a tribute, I felt, to my life with Lincoln and her way to show me that she has been watching and listening to me all these years. Intentional by her not, it was a gift that I gratefully accepted.

The seated Lincoln has looked out at countless millions of people, has seen Martin Luther King, Jr. speak on his steps. Now, with another Illinoisan in the White House, I like to think those cold marble lips are finally breaking into a small smile.

Wednesday, January 21, 2009

Countdown to the Lincoln Bicentennial

In just about three weeks, the nation - nay, the world - will celebrate the 200th birthday of our greatest president - maybe the greatest American - Abraham Lincoln. Born in the most dispiriting circumstances on Sunday, February 12, 1809, tested as few statesmen ever have been, he successfully quelled our nation's gravest crisis, and though martyred mere days after its conclusion, he is revered and remembered for his kindness, humor, humanity, generosity of spirit, and exceptional skill with a quill. For these reasons and more, Abraham Lincoln is my hero of heroes, my holy of holies, a man I have been proud to share birthdays with for nigh on 46 years.

I have been looking forward to this bicentennial celebration for years. After 9/11, I prayed that the world would still be habitable on February 12, 2009. I am today thrilled that President Barack Obama, whose hand rested on Lincoln's Bible while reciting the oath of office yesterday, is the presiding leader.

About two years ago, I contacted the Abraham Lincoln Bicentennial Commission, asking how I could get involved. I felt I wanted to play some part in the occasion. I corresponded numerous times with David Early, communications director for the ALBC, who was grateful for my interest but had his hands full. He asked me to write one short piece that potentially would be used as part of a school kit. I don't know what became of it, if anything, and it's just a first draft, but rather than let it be forever chained to my hard drive, I thought I'd share it here. The topic David asked me to address is "Why Lincoln Still Matters." Please note that it was written in April 2007.

I will write more about Lincoln, and my life with Lincoln, in the coming weeks.

Why Lincoln Still Matters
By Jason M. Rubin

Two hundred years after his humble, homely birth, Abraham Lincoln not only still matters to us, he matters to us more than ever before. That is because we are more removed from – and more in need of – his principled statesmanship, his unbending commitment to fairness and justice, his honesty, and his humor than ever before. In times like ours, when battles for equal rights are still being fought, when bloody wars cry out for meaning and Constitutional crises beg for courageous leadership, Lincoln is the model, the ideal we seek.

Renowned Lincoln scholar David Herbert Donald once wrote about how each generation tries to “get right with Lincoln.” Invoking the Great Emancipator’s posthumous imprimatur elevates and grants legitimacy to any movement. In the last century, Lincoln’s name and words were often invoked by those fighting for human rights, civil rights, equal rights, and voting rights. He is quoted by both Republicans and Democrats, and is considered the quintessential American to people around the world.

Why is this so? Was Lincoln not reviled in his own time? Did he not fail at nearly every endeavor and in nearly every political campaign prior to becoming president? Was he not unsure, depressive, and often maddeningly inconsistent? Yes, all of these are true. And yet we continue to look to Lincoln for guidance and inspiration – he continues to matter to us – because of three things: he is the archetype of the self-made man, the embodiment of what came to be known as the American Dream; his pragmatic leadership and devotion to the principles of democracy preserved the Union and enabled the United States to become the world power it is today; and his compassion for the downtrodden and ability to articulate the evils of slavery are ever-relevant in a world where groups continue to be targeted for persecution and genocide.

The right to rise
Lincoln’s story is so archetypical, so seemingly mythical, we forget sometimes that it is true. He really was born in poverty to illiterate parents. He really did have minimal schooling. His journey from log cabin to the White House was, in fact, fueled by his own ambition and talent rather than by wealth or the influence of powerful friends. What Lincoln valued most about the Founding Fathers was that they rejected state-imposed limits on what citizens could make of themselves. He benefited from what he called the “right to rise” and his example has given generations of Americans reason to believe that they, too, can better their station in life through hard work and determination.

United states
Without Lincoln, rather than “one nation, indivisible,” the land mass we inhabit would be home to a loose collection of disaffected factions, vulnerable to internal feuds and external forces. Lincoln believed that the “noble experiment” of democracy must endure. Though many in the South chose to secede from the Union, and many in the North were glad to see them go, Lincoln understood the dangerous precedent being set: that any group, dissatisfied with the federal government, could break off and form their own separate nation. Yet the Constitution already protected against despotism and dictatorship; any Administration can be legally and peacefully removed through quadrennial elections. Lincoln saw the American form of government as “the last best hope of earth” and fought to save it. In our own time, where violent revolutions and evil regimes restrict freedom and stability in nations throughout the world, the United States remains – imperfect as it is – the world’s model for a free, democratic society.

Forever free

“As I would not be a slave, so I would not be a master.” “Those who deny freedom to others deserve it not for themselves.” Such simple yet powerful ideas were considered quite radical in Lincoln’s time. Yet there were many in his inner circle who thought he moved too slow to free the slaves. Looking back in hindsight from the present, it has been suggested that Lincoln was a reluctant emancipator. But in fact, there was a major obstacle that stood between Lincoln’s personal beliefs and his public policy: the Constitution. The very document that Lincoln was fighting to preserve as the law of the land protected slavery. It was only by a radical – and still controversial – use of emergency war powers that Lincoln was able to free the slaves. And once done, he fought for passage of the 13th amendment to ensure that the slaves would truly be forever free.

Why does Lincoln matter? Simply because thanks to him, a free, democratic United States still exists 200 years after his birth to honor his memory and to continue to learn from his eloquent words and extraordinary deeds.

Friday, January 16, 2009

Another book review: for Dylan fans

When I posted the book reviews from my company's website before, I had the sneaking suspicion that one was missing. So I went back and looked again and sure enough, this one was out behind the service entrance smoking a butt when I went looking to round up my reviews. Here it is.

Positively 4th Street: The Lives and Times of Joan Baez, Bob Dylan, Mimi Baez Fariña, and Richard Fariña
By David Hadju

In the late 1950s and early 1960s, various forces and influences converged to gave birth to the folk revival. Chief among them were the eastward migrations of Joan Baez with her family from California (by way of earlier stints in Staten Island and Baghdad) to the Boston area, and Bob Dylan from Minnesota to New York City. Baez was the first to become a star, but when the two found each other, it signaled the start of a whole new era in music history. As Hadju’s extremely well-researched book shows, these forces and influences were ultimately just plain human beings – astonishingly talented, to be sure, but also full of flaws, foibles, uncertainties, and contradictions. Baez thought she was ugly (in fact, Dylan and many other men were more attracted to her younger sister, Mimi, who was still living with her parents while a new youth movement raged on just beyond her reach), while Dylan and Fariña – both true visionaries – told so many lies about their early lives that no one still knows for sure who they were before they became famous. But the highlight of the book is Baez and Dylan’s unusual, brief, and intense personal relationship. It’s only when she hears his first great songs that she doesn’t consider him a buffoon. He criticizes her as being slow to sing about social and political issues, then she becomes the more vocal activist, complaining about the more personal songs that started to surface on 1964’s Another Side of Bob Dylan. The book ends in 1966 with the eerie coincidence of Fariña and Dylan’s motorcycle accidents (Fariña’s fatal) occurring just three months apart, Baez facing her waning popularity, and Mimi the always-cared-for child now left alone. Dylan was clearly prescient when, in 1965, he sang, "It’s all over now, baby blue." Jason M. Rubin

Tuesday, January 13, 2009

Update: Lewy Body Dementia, the soprano, and me

As reported down below a bit, I met with Ilana Davidson, a professional soprano and Yankees fan who nonetheless has something in common with me: both our mothers suffered and died from Lewy Body Dementia (LBD). We met online, on Facebook, after she had read a post I'd written about my mother. Then she contacted someone from the UK-based Lewy Body Society with the idea of doing a benefit recital. She solicited my help, we talked over some ideas over "guilt food" (we weren't hungry but felt compelled to order something other than tea) (it was humus and fruit) at a brunch place on the Upper West Side.

En route to the rendezvous, I stopped in at Barnes & Noble and bought a book that I'd been meaning to read for several months: Life in the Balance, a memoir by Dr. Thomas Graboys. A noted Boston cardiologist, Dr. Graboys was forced to give up practicing medicine after he was diagnosed with Parkinson's disease and LBD. I showed the book to Ilana, who hadn't heard of it. I took it home and read it in about a week. His courageous and immeasurably valuable testimony about what he is experiencing - and fighting - makes for an extraordinary read. For me, personally, I treasure the book because he is able to articulate what my mother could not, and so I now have a better understanding of what my mother endured behind her stone-faced silence.

Meeting Ilana was wonderful on many levels. I had heard her audio clips on her website, so I knew she was a real talent (not that I know opera well enough to judge, but she has the resume, recordings, and reviews any professional artist would covet). We obviously shared this unfortunate bond and it was helpful to know that my own experience was not unusual. Further, we simply seem to click and our rapport was easy and enjoyable.

We talked about a number of ideas, some of which might not be prudent to mention here since the people we'd like to involve don't yet know about it (not that Al Pacino reads my blog, I don't think. Oops!). But I do think it would be very moving and healing to solicit stories from patients and families, edit them down to concise and cogent excerpts, and have a number of celebrities read them in between musical pieces.

I would also want to include excerpts from Dr. Graboys' book, and emailed to ask for his input. I was thrilled, therefore, when just before leaving work this afternoon my phone range and the voice on the other end said, "Hello Jason, this is Tom Graboys." I was stunned, so much so that all I could do was blurt out, "Wow!"

Dr. Graboys was "ecstatic" to learn of our ideas and happy to assist. He is still active, and in fact is doing a reading and book signing in Brookline on January 29, an event for which I am already registered. I look forward to meeting him in person. In addition, I have had contact (and become Facebook friends) with someone from the Lewy Body Dementia Association in Atlanta, Georgia. They are hot for the idea as well. And I've communicated with someone here in Boston who runs a support group for family members of LBD patients.

With all this swirl of community building, I should be very excited but there's one thing that hasn't fallen into place yet. Our contact at the Lewy Body Society has grown strangely silent. She hasn't returned two emails and I'd like to get her input so we can formalize and finalize our plans, begin to work up some proposals, and start going after some funders, talent, and venues.

As I explained to Dr. Graboys on the phone today, it's not like I've long been a champion or advocate on behalf of LBD patients, but it's occurred to me that 10 years after my mother died, I still get blank stares from people when they ask what my mother died from. Ten years later, LBD is still largely unknown by the general public, likely still underdiagnosed by clinicians, and definitely undertreated. And yet by several reports I've read, it's the third most-common form of dementia.

It's time to do something about this. And if there's a role for me to play, then it's a project I happily add to my pile and give top priority to.