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.

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.