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.

Past Projects IV: Purim Spiels

Happy Purim, everyone! If you don't already know, Purim is another one of those Jewish "someone tried to kill us, they failed, let's eat" holidays. In this case, it's an apocryphal story about a meanie named Haman whose nefarious plan is thwarted by the brave, lovely Jewess Esther, and her honest and pious cousin Mordecai. You can read all about it in The Book of Esther.

Anyway, Purim is kind of like Mardi Gras and Halloween all in one. You give food (the delectable triangle-shaped hamantaschen pastry), dress up in costumes, and engage in merry-making, notably through the staging of a spiel, or play. For a number of years, I wrote and directed a number of spiels and while I haven't done one in a couple of years, people still tell me that they enjoyed my productions.

It started many years ago when I joined to a temple in Sudbury, Massachusetts, that had a long tradition of meticulously produced spiels. A husband and wife team for whom theater was an avocation led up the effort. Seeking to get involved in the temple, and thinking it would be a fun outlet for my writing skills, I volunteered. So did several others. Our first meeting was a bit difficult. A number of people there really had not a creative bone in their body and didn't really get how to do a musical comedy. Truth to tell, neither did I but it was apparent pretty quickly that I got the hang of it right away, as most of my ideas were accepted and I was given some key scenes to write. It was based on Star Trek, and we called it Star of David Trek. In subsequent years, we also did a takeoff on the Wizard of Oz, and a Beatles-themed play called Beatle Jews.

I'd like to add just for my own sense of self-gratification that the playwright David Mamet was also a member of this temple and I heard from a friend who sat near him during one of these spiels that he laughed at one of my jokes.

There are three things a good Purim spiel should be able to accomplish: parody an existing theatrical work, tell the Purim story in words and music transposed on top of the work being parodied, and poke fun at people and issues within the temple community. It should be funny and entertaining, and thought it's a purely amateur production, attention to sets, costumes, and learning one's lines does pay off in the end.

Eventually, I left that temple and joined another one in Malden, Massachusetts, that had no such tradition of large-scale Purim spiels. Once I felt acclimated in the community, I went to the rabbi and said I'd like to put on a real show. With his blessing (and when a rabbi gives a blessing, it's a freakin' Blessing, thank you very much), I set to work writing a script, developing lyrics, and putting together a band. Though I didn't intend to be the drummer, there was no one else to do it, so I was writer, director, bit performer, and drummer. And if you think I loved doing it all myself, you're right.

The first spiel I did was named after the temple school's education director, whose first name was Aviva. The spiel was called Aviva Las Vegas and featured all Elvis tunes. We had some talented people come up with sets made from refrigerator boxes, I did the programs, we had a cast of kids and adults, the band kicked ass, and everyone had a blast. A new tradition was born.

In all, I think I did four or five of them before I left the temple a couple of years ago. My favorites were the last two: Schmaltz, based on Grease; and Godspiel, based on Godspell. The music was great, the jokes were (mostly) funny, and best of all, the community looked forward to them and everyone enjoyed themselves.

As for me, it was a ton of work, but I drank up all the praise and attention I got, and I always wrote a plum part for my older daughter, Hannah, who is a natural performer. The last two Purims, I haven't felt like seeing any spiels; I'm not sure I can enjoy one where I'm not directing from a drum throne and receiving a bouquet of flowers at the end. I'm at a new temple now, in Wellesley, Massachusetts, and I haven't raised my hand for it...yet. It may be that my Purim spiel days are behind me, but when I was doing it, I have to say I made some of the best Purim spiels the north shore of Boston has ever seen.

A Thought About Madoff

It's not generally been my M.O. to talk about things I know next to nothing about - such as politics, economics, and religion. But I'm about to make an exception.

The more I read about this Bernie Madoff guy and his Ponzi scheme that swindled individual and institutional investors out of $50 billion, the more I had this nagging thought: bad enough this guy is a royal scumbag, does he have to be Jewish, too?

It seems an odd and petty concern, but it's actually rather relevant, especially in light of the fact that so many of the individuals and charities who lost some or all of their funds to Madoff were also Jewish. This includes some very heavy hitters in philanthropic circles, people like Carl and Ruth Shapiro, Robert Lappin, and even Elie Wiesel. Not only did they lose money, but deserving charities, hospitals, schools, and nonprofits also lost out on major gifts they were depending on from these people and many others like them.

Still, why dwell on the religious affiliation? I guess because I'm having flashbacks to the sweltering summer of 1977, when David Berkowitz, aka Son of Sam, was arrested for killing six people over the course of a year (he later amended his confession to take credit for only three of the murders). I distinctly remember my parents expressing shock, not merely at the scope and scale of the crime, but also at the fact that the serial killer was Jewish. Jews simply don't do that sort of thing.

My sisters and I were raised in a household where we often heard, either overtly or subtly, that Jews are somehow better than other people. Smarter, more industrious. More civilized than to put mayonnaise on a roast beef sandwich or buy retail. I don't think we actually ever believed that, but it was an attitude that pervaded our home. And to be fair, our parents grew up in quite a different community and world than we did, and their attitudes reflected the challenges they faced being Jewish.

One thing that is probably true is that Jews, as a group, became integrated more quickly in American society and became, as a group, more financially successful and politically powerful in less time - and relative to their size - than most if not all other immigrant groups. Part of this, I'm sure, is that they were white. Another reason, I believe, is that Jews have a long history of ghettoization; in most societies in which they have lived, they have been a subject people, kept separate from the mainstream and constrained in how and where they lived and worked. As a result, they were forced to rely on each other, support each other, and conduct trade with each other.

When they came to America, the same patterns held. If a Jew needed clothes, he went to a fellow Jew who was a tailor. If he needed a chicken slaughtered according to the laws of kashrut, he went to a Jew who knew how to do it. Sore throat? Let Rachel make you some soup. This continues to this day. I am 46 years old, and I have never had a non-Jewish doctor or dentist in my life. When Jews need an accountant or a lawyer, they go to a Jew; when they need an appliance, they find a Jew with wholesale connections. For generations in America, Jewish money stayed in the Jewish community. Fortunes were made. And when it came time to invest this money, where do you think they went? Yes, to Jewish stockbrokers.

When you think about it, it's been a long time since a single man has harmed so many Jews as Bernie Madoff has done. And the fact that the perpetrator is Jewish really is striking.

Elie Wiesel, speaking in New York earlier today, called Madoff a "psychopath" and said his punishment should include being placed "in a solitary cell with a screen, and on a screen, for at least five years of his life, [would be] pictures of his victims." The Elie Wiesel Foundation for Humanity, which provides aid to Jewish refugees overseas, lost almost all its financial assets because of Madoff: $15.2 million. A writer in the Times of London noted, "It takes an extraordinarily heartless conman to swindle a survivor of Auschwitz and Buchenwald and Nobel Peace Prize winner out of all of his charitable funds."

Of course, just as with the Holocaust, not all the victims are Jewish, and Madoff's religious affiliation has no bearing on his guilt or punishment. But it does make me think that if the Jewish community diversified not only its investments but also its various networks of vendors and service providers, they may find that non-Jews are just as honest, reliable, and skilled - and maybe more so - as their fellow Jews.

"I'm the King of Bad Dreams."

It's a hell of a thing, to open up a new book, crack the spine a bit, the front cover and assorted preliminary pages laying lightly in your left hand, and the entire bulk of the rest of the book supporting page one being borne by your right. You've only just begun and it will be some time before you've finished. What you hope for is a first line that propels you forward, onward, into the book. You need to build some momentum quickly and the first line will either make you hungry for the next or merely serve as that initial slow step you take before you've reached full speed.

Me, I like a first line that sparks the pilot light in my imagination, that instantly leaves me either excited or curious about what comes next. Now, some of the greatest novels in the English language have had first lines that do nothing for me, so a great first line isn't necessary for a successful book. But it helps. For example:

Call me Ishmael. - Herman Melville, Moby-Dick

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair. - Charles Dickens, A Tale of Two Cities

Great books, classic lines. But still idling in Neutral. I'm sorry, they just don't do much for me.

I like first lines that make you wonder, that instantly give you a feeling, maybe even a feeling of uneasiness. A feeling that you must go on, if only to learn what bad things might await. Some of my favorite first lines include:

124 was spiteful. - Toni Morrison, Beloved

Once upon a time and a very good time it was there was a moocow coming down along the road and this moocow that was coming down along the road met a nicens little boy named baby tuckoo. - James Joyce, A Portrait of the Artist as a Young Man

You are about to begin reading Italo Calvino's new novel, If on a winter’s night a traveler. – Italo Calvino, If on a winter’s night a traveler

Ships at a distance have every man’s wish on board. – Zora Neale Hurston, Their Eyes Were Watching God

Mother died today. Or, maybe yesterday; I can’t be sure. – Albert Camus, The Stranger (OK, granted that's two lines, but they join to make one indelible start.)

It was a queer, sultry summer, the summer they electrocuted the Rosenbergs, and I didn't know what I was doing in New York. - Sylvia Plath, The Bell Jar

So I've been thinking lately about my next novel, and not quite knowing what it's going to be about. But I've decided it should be told in the first person, unlike my first novel, The Grave and the Gay, still awaiting delivery to agents. That's a piece of historical fiction with an omniscient narrator telling the story in third person. And I think it works fine, but I want my next one to be more direct, more in your face. I want the narrator to talk to the reader, and I want it to begin with a first line that sets up a sense of an individual with issues to work out, yet those issues are ill-defined and much of the book, I think, will be spent trying to figure out just what's up with the guy. The remainder of the book will be his attempt to address those issues.

It's like therapy - especially if you read it in 50-minute chunks.

So anyway, I was thinking about what some of my issues are and I recalled a recurring dream I've had many, many times over the years. It's a dream where I've arrived somewhere - work, school, a party, some fun event - and for some reason had to leave it because I forgot something or had to drop someone off somewhere. And then I'm not able to find my way back. Either the streets don't look familiar or the place has moved or I no longer have a car, something prevents me from getting back to where I want to be. I get a taste, but never a meal.

There was one time about eight years ago when I had the dream - and actually made it back! It was an incredibly exhilarating feeling. I was on a high for days. A colleague gave me her interpretation as to why that night the dream ended differently. I had recently started this job, and I finally felt like I was in a work environment in which I belonged, in which I truly felt valued and respected. That was an interesting insight. Of course, the novelty has worn off some over the years, and I've since had the dream again, and again I was unable to get back.

And then, thinking about bad or annoying dreams, there are those times when you dream you've tripped and suddenly you're whole body jerks you awake, or you're being chased and your legs are like lead and it feels like you're running through Marshmallow Fluff. I've actually had two dreams in my life where I've gotten shot in the head and both times I felt the bullet enter my skull. So I know about bad dreams.

And that's why I know the first line of my next novel: "I'm the King of Bad Dreams." What happens next, aside from a description of some of them, as I just did above, I have no idea. But I'm hoping I get into a strong creative rhythm and am able to write the whole thing quickly. Because if I don't, if I have to stop or retreat, I'm worried I'll never find my way back.

In Praise of Tuna Fish

Why, you might ask, after several posts discussing the serious neurological illness Lewy Body Dementia and the ways in which my life and been inspired and enriched by the life and legacies of Abraham Lincoln, would I next turn to the subject of tuna fish?

It's a fair question.

Earlier today, I donated blood. In the past when I've donated blood, lying on a rickety green cot with a needle in my arm, drawing my precious plasma through tubing into a plastic pouch while I squeeze a plastic dowel in 10-second intervals, I've been terribly bored. Giving blood takes longer than it should considering how great the need for donated blood is these days. My appointment today took nearly two hours. Anyway, the point is that I wanted to bring a book with me to read while vital fluid dripped out of me.

And I didn't want to bring one of my current reads because my reading would be interrupted by nurses, I would be near staining iodine and blood, and I would be in a most uncomfortable reading position: lying prone with my head raised only a couple of inches, having to hold and turn the pages of the book with just my left hand. So I looked for a small paperback that I wouldn't mind reading just 30 or 40 pages of and not needing to continue after the appointment was over.

The book I chose was Bird By Bird: Some Instructions on Writing and Life by Anne Lamott. My wife had actually given me this book for my birthday a few years ago, but after leafing through it, I thought, "I don't need this, this is for people who want to be writers, not for real writers like me." Lamott is a published author (two memoirs and a number of novels), recipient of a Guggenheim, two-time magazine columnist, and has taught writing at the university level. Surely, I thought, there's nothing she can teach me.

Well, for whatever reason I decided to take this book with me to the bloodletting. And I have to say that once I got past the introduction and the opening chapter ("Getting Started"), which really did cover ground I trod long before, she began to be more interesting to me. The third chapter, for example, is titled "Shitty First Drafts," which is something I can relate to. But it was chapter five that intrigued me. It's called "School Lunches." The idea is to spend half an hour writing about how our mothers nourished us in elementary school, as a means of delving into childhood memories that may on the surface seem banal but on closer inspection possess threads of status, shame, self-consciousness, and even sardines, which I'll get to soon. Anyway, it seemed like an interesting exercise and so I thought I'd try it out here.

Mind you, what follows is just me writing about the subject at hand; I did not jot down any notes or write out a previous draft. What follows is basically a shitty first draft. Ms. Lamott, I hope you're satisfied.

In Praise of Tuna Fish
I entered grade school at age five; in the ensuing 41 years, I've had a lot of lunches. Those that occurred in the Monday through Friday routine of school and later work have generally been eaten in full view of my peers and anyone from my past, classmates and colleagues all, can vouch for this one simple fact about me: I really like tuna fish.

I don't know what it is about tuna, but it works for me. Sure, I've had the occasional peanut butter and jelly sandwich (now practically a crime to possess one within 50 yards of a school), even bologna, salami, turkey, and that disgustingly marvelous concoction known as egg salad (the only other food I classify as disgustingly marvelous are Circus Peanuts, those orange things that purport to be from the marshmallow family), but tuna fish has always been my number one lunch food. I'm not sure if I demanded it be so or whether my mother just thought it was easiest to make, but however it came to be, I estimate that tuna fish has been part of probably 80% of all the school and work lunches I've had in my life.

Might as well get the preferred recipe out of the way. First, you start with white tuna, which isn't really white. Light tuna, which is darker than white, is cat food. As such, it is not a suitable substitute. Next most important is the binding agent. Only Miracle Whip will do. Though technically a salad dressing and not a mayonnaise, Miracle Whip adds an irresistible sweetness that I demand. I will if need be go with mayo, but Miracle Whip is a very strong preference. Adding a little sweet relish to the mix is a nice touch but not really necessary. Ditto chopped celery, though it adds a nice crunch. Finally, the bread. As a youngster, only snuggly soft white bread would do. These days, any good bread is desirable; in most cases these days, I simply top a green salad with a dollop of tuna for a nice low-carb lunch.

But wait, we're not done. There's a secret ingredient to any classic tuna fish sandwich. You may say I'm disgusting but I'm not the only one. I know other people who have done this as well. If you've never had the pleasure, you must try it. To your sandwich add potato chips. Not on the side. In the sandwich. Atop the tuna. Between the bread. A nice layer of crispy chips. It adds not only the nice crunch I mentioned before, but also an extra helping of carbs, which all kids crave.

OK, so that's the recipe. So why do I like it so much? I have no idea. The best I can think of is that it's everything peanut butter isn't: it's cold and wet. It's a wonderful texture and a tremendous source of protein. The only thing I don't like so much is opening and draining the cans. When my cat was alive I'd pour the water (yes, water, not oil; that stuff's nasty) into a dish for her. Now my wife makes me grind a slice of lemon in the disposer so the sink drain doesn't smell like fish.

As a kid, no one ever commented about my love of tuna. As an adult, my colleagues are sure I'm going to get mercury poisoning. As a parent, I now have to make lunches for my 12-year-old daughter. To my deep disappointment, she hates tuna fish. In fact, she's never had tuna fish. Not once. But she thinks it's gross so she won't try it. Think how much joy it would give me to make a great big bowl of tuna and provide it as a midday repast for both me and my darling daughter. I tell her it's not at all gross. Gross was the sardines that John Collins used to bring in for snack. He'd lean his head back and drop those stinking oily bastards down his throat like he was both sea lion and trainer in one. In contrast, my tuna/Miracle Whip/potato chip/white bread sandwich was refined and gourmet. But she won't have any of it.

Oh well, that's her loss. For me, that little three-ounce tin of delight is what lunch is all about. And I can't wait until my next one.

Happy Birthday, Abie Baby!

Living with Lincoln: How I'll Celebrate

As I begin this post, it's 10:32pm on February 11th. In about an hour and a half, both Abraham Lincoln and I will celebrate our birthdays. Throughout my 46 years (nearly), I can't possibly count how many Lincoln birthday cakes I've been served. And indeed, I'll blow out candles on another one tomorrow. But that's not the main way I celebrate our shared nativities. For many years now, I've marked Lincoln's birthday by reading his Second Inaugural Address. Similarly, I read "Letter From Birmingham Jail" every year on Martin Luther King Day. No matter how many times I read them, the continue to inspire and enlighten in myriad ways.

In addition, I've compiled a mix CD of songs about or related to Lincoln. I will play this as well:

Abraham Lincoln - Cake Like
Abraham Lincoln - Lungfish
Abie Baby/Four Score - Hair Soundtrack
Abraham, Martin and John - Ray Charles
The Night They Drove Old Dixie Down - The Band
Slave Driver - Taj Mahal
Follow The Drinking Gourd - Richie Havens
Lincoln Town - John Hiatt
Lincoln Park Pirates - Steve Goodman
Hot Rod Lincoln - Commander Cody & His Lost Planet Airmen
A Short Reprise For Mary Todd, Who Went Insane, But For Very Good Reasons - Sufjan Stevens
Decatur, Or, Round Of Applause For Your Stepmother! - Sufjan Stevens
In This Temple, As In The Hearts Of Man For Whom He Saved The Earth - Sufjan Stevens
Emancipation - Gary Willis
With Malice Towards None - Frank Morgan
Lincoln Portrait: I. Lento - Aaron Copland/Henry Fonda/London Symphony Orchestra
Lincoln Portrait: II. Subito Allegro
Lincoln Portrait: III. "Fellow Citizens, We Cannot Escape History..."
Ashokan Farewell - Jay Unger/Molly Mason/Fiddle Fever
Abe Lincoln vs. Madison Avenue - Bob Newhart

Finally, I will engage in a moment of silent meditation, reflecting on Lincoln's humanity, his hard rise to greatness, and the lessons his life and his words have had for me and that will guide me and support me throughout my life.