Night and Day with a Soprano: Tales of Ben and Lewy

The soprano Ilana Davidson performed at Boston's Symphony Hall last night with Benjamin Zander conducting the Boston Philharmonic Orchestra in Mahler's Symphony No. 2. Sharing the overwhelmed stage with another soloist, the mezzo-soprano Susan Platts; two choirs; and either 115 or 150 musicians (I couldn't hear clearly which), Ilana had to wait for at least 75 or 80 minutes of the 90-minute work before she rose and expertly sung her part in the sprawling final movement. Yet I waited far longer, because it had been months since I found out that this talented singer and I had something rather important in common: both our mothers died from Lewy Body Dementia (LBD), and we shared that awful sense that somehow our mothers suffered more than they had to. If only we, our families, and our doctors known more about the disease...the end result would have been the same, but the journey to that end might have been somewhat happier, more bearable, more dignified.

To recap, as I've done before, an early blog post of mine about my mother was posted in a forum at the Lewy Body Dementia Association (LBDA) website by someone out there in the blogosphere who came upon my blog and felt it had some value. Shortly thereafter, I joined the Lewy Body Society page on Facebook and posted the same item there. That's where Ilana found the piece. Then she wrote to me, we shared our stories, and became Facebook friends. She also had contacted the UK-based Lewy Body Society and the idea of holding a benefit recital came about.

At this point, Ilana brought me into the conversation and we met in New York last December to do some brainstorming. Then the Lewy Body Society dropped out of the picture, and the LBDA entered. I'm in Boston, Ilana's in New York, and the LBDA, headed by Kim Mitchell, is in Atlanta. We decided that the three of us should get together to see how we could help to make a difference in raising awareness and money for this terrible affliction. Ilana's performance schedule provided the time and place; she would perform in Boston on March 11, and we would meet at her hotel on March 12. And so we did.

Still reeling from the sheer power and beauty of the gargantuan performance the night before, I walked 20 minutes from my office to the hotel this morning. I arrived before Kim, which gave me and Ilana an opportunity to share our varied perspectives on the evening. The concert had been but one part of a gala evening celebrating the orchestra's 30th birthday and Zander's 70th. Just prior to the performance, there was a brief ceremony on stage during which New England Conservatory bestowed upon Zander an honorary doctorate. The commencement address would be delivered through the maestro's baton, and it was a lesson I will never forget.


Ilana was pleased with the performance, it seemed to me, and also happy to see me and meet Kim. Though we have only met twice, we have maintained a lively correspondence on email and through Facebook, we have shared difficult stories and memories of our mothers' illnesses, she has sent me copies of her CDs and I sent her some old recordings of my grandfather, which are highly valued within my family but little heard outside it, and it was nice to hear her enthusiasm for his talent. In short, while there is a fairly low barrier to entry to be someone's Facebook friend, we are also scaling the real-world wall where two people so interested may find themselves at the top and together push the barrier into the ground in an act and state of true friendship.

It helps that I like her dog and she thinks my toddler is cute. We are, however, choosing to leave the Red Sox/Yankees thing alone for the time being.

When Kim arrived at the hotel we went up to Ilana's room and while her dog alternately happily ignored us and insistently demanded attention, Kim gave us an eye-opening overview of the LBD world and the LBDA's place in it. The challenges are staggering. The FDA doesn't even recognize it as a discrete disease and therefore no drugs can legally be approved as being indicated for it. Doctors don't know how to diagnosis it and so it frequently goes under-reported or misdiagnosed. It shares a common pathological profile with Parkinson's disease, yet has a far lower public profile, so attracting funds is difficult.

The late Estelle Getty of TV's The Golden Girls is one of the very few "names" known to have LBD, and no offense to her fans but she's no Michael J. Fox. She's also not alive anymore, so she can't testify before Congress or call her well-connected friends to make big donations. Occasionally, it's revealed that some bigwig has dementia, but there are a lot of forms of dementia. It's easier to report about Alzheimer's because it's a known entity. The owner of the San Diego Chargers reported last December that he has "dementia" but it's never been identified which kind he has.

So raising awareness among the medical community and the general public is an important goal. Another is to provide a means for siloed researchers in this area to share information with each other. An immediate need is to support the caregiver community, as LBD patients require extensive care, which often falls on the family, which soon becomes burdened with the exhaustion, uncertainly, and financial burden that chronic illness imposes.

Where do we go from here? More brainstorming, fact-finding, and searching for the right person who has interest, money, and friends with both. At the outset, we are taking a long-term approach, building our capabilities slowly, hopefully growing in scale and sophistication each year, until we are able to make a significant impact in the ongoing fight to learn more about LBD and eventually find either a cure or a treatment that can effectively keep it under control.

Job One, though, is to spread the word about LBD. To learn more, check out the LBDA.

A Safe, Positive, Healthy Facebook Outcome

So I'm on Facebook, which is fun and highly addictive. I think I have twice as many Facebook friends as real-life friends, but it's proven to be an easy and effective way to reconnect with old classmates, colleagues, friends, and relatives.

If you're not Facebook-knowledgeable, all you need to know to get the point of this post is that in addition to people you can befriend, there are groups you can join, causes you can support, and sheep you can throw (the last one is true but irrelevant).

So if you've read my blog before, you'll know that my mother died of a neurological disorder called Lewy Body Dementia or Lewy Body Disease (conveniently LBD either way). One day, my younger sister, who also is on Facebook, came upon an LBD cause page, joined it, and alerted me to it. I also joined, and I posted my Dove Nested Towers blog post to the LBD cause page's "wall" (a posting forum).

Some time later, I received the following message in my Facebook inbox:

Dear Mr. Rubin,

Pardon this message from a complete stranger, but I was reviewing the Lewy Body causes page and read your incredibly powerful and beautiful passage about your mom. So much of your entry was applicable to our situation. And your writing is beautiful. My mother died of LBD three days before my wedding (2006). And we as a family also had to make the same sad sad choice you did guiding her toward the end of her journey with LBD. We found a wonderful hospice home in Philadelphia for those last grueling 8 days.

Anyway, thank you for your words, and I just had to tell you how much they touched me. I'm so sorry for your loss as well.

Kindest regards,
Ilana Davidson

I replied with humble gratitude and then invited her to be my Facebook friend. In so doing, I was able to access her page and I learned that she is a professional opera singer, a soprano. On her website, I further learned that she will be appearing in Boston (where I live) in March, performing Mahler's Symphony No. 2. This prompted a note from me to her:

Seeing your page now, I realize you're a professional opera singer. I come from a family of opera buffs, from my grandfather who performed in local operas, was a freelance bass-baritone in temple choirs throughout Boston, and had his own radio show at one point. Googling your website, I see you're performing here in Boston in March, doing Mahler. My mother's maiden name was Mahler, and her family came from Austria. She always thought she was related to Gustav, though she had no genealogical proof. And my singing grandfather was paternal, so no musical talent was apparent on my mother's side. Still, we like to carry on the idea that there may be a familial connection, so it's a nice coincidence that you connect with my mother on this other level, as well. I will keep an eye out for the performance; it would be fun to hear you in it.

Jason

A further coincidence is that the conductor for the March concert will be Benjamin Zander. I once interviewed him for a freelance article I wrote that was also printed in the CD booklet for a recording made of his New England Conservatory Youth Philharmonic Orchestra's tour of Chile and Buenos Aires in 1995. You can see it here.

Thus, a nice correspondence was begun with this woman, who is based in New York. She offered to try to get me tickets to the performance and we did a little Jewish Geography to see if we know any of the same people. In the meantime, I searched Facebook for any Lewy Body hits and found that the UK-based Lewy Body Society had a page. I joined it, and again posted my blog piece about my mother.

Now Ilana, being my Facebook friend, can see any update I make to my Facebook account, including any new groups or pages I join. So she saw that I joined the Lewy Body Society page and she did likewise. Some time later, I got the following message from her:

Hello Jason,

So the Lewy Body Society (the one we joined here on facebook) and I have been in touch. We are working on the possibility of me doing a benefit recital / concert for LBD. We are trying to consider venue or country (!) as they are based in the UK.

In just my preliminary thinking: All is need is a pianist of my choice and to pick a beautiful program ... But we will need to think about other details (location, as I said is one of them)

Might you be willing to be my sounding board ? Or feel like getting involved to work with me on this possibility?

I replied enthusiastically thusly:

I'm honored to be asked and would be thrilled to help out in any way. I don't know if you sussed it out from my info, but I'm a marketing copywriter, so in terms of strategy, theme, proposals, copy, etc., that's all up my alley. As far as pure event/program brainstorming, absolutely, count me in.

BTW, I know you're in NYC somewhere; we'll be visiting with my brother in law and his family in Chelsea from 12/26-30. Maybe we could discuss this over bagels?

Thanks again for offering me a seat at the table.

To which she replied:

Great news.

I actually just kind of presumed that it might be up your alley. And had a gut feeling too - and hoped even more that you might be up for helping.

And as it happens I'm very comfortable on the musical end of things and the other stuff kind of paralyzes me in event-programming-strategy-proposal fear... Perhaps it's all fate somehow. I'm really excited about this now.

I definitely should be here in NY when you guys come this way! When it suits the family schedule, I would be so happy to come down.

This concert (s) is so important for me. I want so much to contribute to their memories and to LBD. I couldn't do this alone ~ so glad you're at the table.

And so, in a few days, if all goes well, I will get to meet this soprano in person and hopefully create an event - and cement a friendship - that will have lasting impact. Certainly, there are weird things you hear about when people take social network relationships and take them offline, but this is something very positive and worthwhile...not least because it's gotten me to play more Mahler!

Mom would be thrilled.