Endless Knots

Kudos to Phyl

Phyl Rubin, half the Boston furniture duo whose commercial ditty (it's sing-song-y and ends with "Bernie and Phyl: Quality, comfort, and price...that's nice") has a way of replaying itself in the minds of us who live in the Hub, went public earlier this week with the fact that she has MS. She's had it for forty years, as she told The Boston Globe's Jenn Abelson in the front-page story, "Bernie and Phyl share a long-kept secret."

Phyl decided to come clean to "speak out and to help end this horrible disease...I’m one of the lucky ones."

Along with many others with serious but for the moment manageable chronic illness, I understand her reluctance to speak about it. People -- you know, all those sentient beings you interact with on a daily basis -- have preconceived notions of illness and it's easy for them to begin to regard people as their disease, which is about as off-putting as it gets. But there's a risk. If "you don't wear your illness on your sleeve," as one friend put it to me, then you may present as healthier as you are. If you lead with your disease, then we're back to the second sentence in this paragraph. Or, if you manage it well, then you might run into the comment that made me want to slug someone: "Do you really have MS? I mean, do you actually have that diagnosis?" As if anyone would pretend.

I applaud Phyl for taking it public and for shining some light on what can be a dark corridor at times. I'm sorry to hear about the symptoms that she struggles with, or any symptoms that any of us struggle with...and I think her talking openly will pay benefits to others.

"Bernie and Phyl: rolling the honesty dice...that's nice."

"Every day there is an egg to catch"

Most Sundays, Daughter #2 and I discuss a single column in The New York Times. Not infrequently, our inner snarks emerge as we eviscerate "Modern Love," the 1500-word essays that appear in Sunday Styles. We haven't had the chance to compare notes yet on "Raising a Princess Single-Handedly," but I'm guessing she, along with you, will choke up a bit and cheer its warmth and evident devotion.

Simon Van Booy and his four-year-old Madeleine are busy making life appear normal after the sudden death of his wife/her mother last year from Marfan syndrome. I don't think it's because my best friend, Linda, died of Marfan's that this piece causes me to pull my laptop into the garden and post in these few moments when it's not raining.

This tender reflection, circling the simple gesture of making breakfast, manages to draw in everything from Sleeping Beauty to the trick of buying store-brand cereal and pouring it into the colorful boxes of crap that children prefer to World War II in one effortless stream.

Witness this from the guy with the funny hat, cane, and mustache, who also takes a bow: "I think it was Charlie Chaplin who said that close up, human life is tragic, but from a distance, it’s funny."

Or how about this capture of a certain aspect of the secret life of children:

We don’t have television, so Hannah Montana entered our lives on a DVD purchased because Madeleine had somehow found out about her through that underground toy-smuggling and gossip network also known as nursery school.

Turns out Mr. Van Booy is a writer of some repute, with books in print and in the pipeline: his new story collection, Love Begins in Winter, is just out, joining The Secret Lives of People in Love (I swear I didn't see the title until after I'd written the line about the secret lives of children); coming soon, Why We Need Love, Why People Fight, and a few more. Prolific to boot.

Do the clickeroo. You'll thank me and we'll both thank Simon and Madeleine. The title of this post, taken from the piece, is self-explanatory.

"It takes a lifetime to change the world"

I'll leave it to you to figure out who among them is the godchild (disgusing that person's privacy even further) but a moment like this cannot pass without record.

On Friday morning in a drenching rain at a school that experienced the kind of tragedy just a few months ago that most institutions would shun mentioning at a celebration, Concord Academy held its commencement exercises.

As the festivities began, we were all holding our breath, I'm sure, because of the death of one of the students' classmates in February at a party (dozens of tributes here).

I would guess that many institutions would have mentioned this only in passing at graduation but from the very first speaker on (the chair of the Concord Academy board) the awfulness was acknowledged. When horrible things are met at the front door, it allows everyone to come in. Jake Dresden, retiring head of Concord (we're all going to miss you and Pat, Jake), continued, also talking frankly about what happened ...and so it went until the commencement speaker, Eric Lander, came to the podium. His son was graduating too.

Need I mention the anticipation of ho-hums that always accompanies the moment before the graduation speaker begins? More platitudes in the offing, we all think, worried that the person might have read all the other commencement speeches online and threaded them together, thinking that would be new.

But Eric did something different. He talked about the future for these kids against a measure that they could perceive. His refrain:

It takes a lifetime to change the world.

It was a beautiful speech, delivered with passion, drawing on his own experience as a very accomplished scientist -- and a parent.

Here are some notes from my little notebook that's always in my purse:

What is 50 years?

It's the time it takes to change the world.

In 1953, Crick and Watson published their first ONE PAGE paper on the double helix.

Fifty years later, the Human Genome project was completed.

A lifetime is enough to change the world.

What is 50 years?

It was approximately 50 years from the time Vannevar Bush first proposed the idea for memex, the precusor to hypertext, aka what we now know as the web.

About 50 years passed between the Montgomery bus boycotts and the election of Barack Obama.

And only 40 years have passed since the Stonewall riots, arguably the night the fight began for equal rights regardless of sexual orientation, and when the first same-sex marriage rights bills were passed in state legislatures.

It's not entirely an accident that it takes a lifetime to change the world.

And he also offered this very sage advice:

Your life cannot be planned in advance but will be assembled from pieces of your passion.

The projects of a lifetime come in all sizes.

The single greatest project of a lifetime is having children.

And...it's utterly impossible to plan in advance how it will all play out.

Well said, Eric. And good luck to the godchild.

(Tiny itty bitty disclosure: Daughter #2 graduated from Concord Academy, providing her with an unparalleled education during her last two years of high school and launching her on her career as an artist.)

Go, e-Patient Dave!

Globe Staff Photo / Suzanne Kreiter--thanks!

He comments here on occasion and has made headlines of late when he discovered that his medical records contained, shall we say, a few inaccuracies when transferred to Google Health.

Today, e-Patient Dave, the person/blogger who passes in the real world as Dave deBronkart, is featured in Elizabeth Cooney's interview, "The excellent patient," in The Boston Globe (which, btw, continues to arrive in the driveway). Congrats, Dave, and thanks for all the good work you're doing on behalf of patients, reminding us all that our best advocates are ourselves.

A very good(man) day

Every year, Freedom House holds its Champions of Freedom event where outstanding people who make great contributions to the cause of freedom receive awards. I've been on the Freedom House board where Gail Snowden, known for her innovative community banking approaches while at BankBoston and Fleet (remember them, Bostonians?) now serves as CEO. Gail's parents, Otto and Muriel Snowden, founded Freedom House in 1949 and its mission, to educate kids and inspire them to do things that might cross their minds but for which they don't have the resources, continues. That's my interpretation. Here's the official mission statement:

Our mission is to promote economic selfsufficiency and social justice for residents in historically underserved neighborhoods through targeted educational development, increased civic and political engagement and progressive cultural advocacy.

Tonight's celebration honored a variety of people, the first award given in honor of Carolyn Goodman, for whom an award has been named. I've written a-plenty about Carolyn and the Goodman Family here. This year's Carolyn Goodman Award went to Margot Stern Strom, President and Executive Director of Facing History and Ourselves.

Earlier in the day, a small group of Facing History staff hosted a luncheon for Carolyn's son (and my long-time friend) David Goodman, to which I was invited. Quite a privilege to be included. Photos by Facing History-er Jeanine Zurkus (thanks!)

David Goodman and Adam Strom

David and Margot Stern Strom



Front row: David and Margot
Back row: Moi, Michael Durney, Adam Strom, and Marty Sleeper

A tale of two Pauls

Something's been going on around the country--and in other countries too--where instead of people behaving in predictable ways as the economy has worsened, they're choosing to use their creativity in service of humanity. The media loves this and there are segments on nearly all the news programs about people stepping outside the bounds and "making a difference," as the NBC Nightly News calls its now-regular segment.

My friend Paul Levy, who's shown up a time or two before here, has found himself in the limelight as a result of the choices he's made as head of Beth Israel Deaconess Medical Center, where revenues are off $20 million this year, which translates into 600 jobs. Paul's written plenty about this on his blog; if you click over there, you'll be able to follow the whole story.

Because of his approach to "running a hospital," he took the problem to the people and naturally they responded. After a series of town meetings where Paul laid out the problem, the hospital opened an online forum where people could anonymously post suggestions. They got tons (detailed data on his blog about all of this).

Long/short, through voluntary salary reductions from the top to deep in the organization and some other cuts, like suspension of 401(k) matches and removing payments for people's beloved Blackberrys, they've whittled down the number of jobs at risk to about 140, maybe fewer (I'm losing track a bit).

Enough of the story. Point is that the national press caught on and last night, the hospital was featured on that very NBC segment, Making a Difference, and tonight, it was featured on PBS's Newshour with Jim Lehrer as part of a longer piece reported by Paul Solman. Afterward, Paul S. asked Paul L. to record a bit more, a six or so minute piece where the hospital guy tells the TV guy how the whole wonderful thing came down and how anyone else could replicate what he'd done in four easy moves: be transparent; provide a forum for participation; be respectful; and explain decisions logically, in plain, straightforward language that people can understand.

Every bit of this is worth your seeing and reading, every bit. Please spread the word.

[Special note to those who know my strange life on trains where I meet all manner of people: A couple of years ago, I was getting off the train in New York when I realized Paul Solman was right behind me. Although we hadn't crossed paths since we both had written for the long-gone Boston After Dark in the deep dark past, I cheerily introduced myself. One thing led to another and next I knew, we were sharing a cab, Paul on his way to visit his 93-year-old father still living in the apartment where Paul had grown up on the Lower East Side, just a few blocks from where my grandfather had lived, and me on my way to my jewels in Brooklyn, aka daughters and son-in-law.]

Roland at the Fiction Book Club

In the pocket of secrets that fill our lives, threads fray. While most sew them right up,  an unusual few take certain strands and pull them in just the right way that they make what is normally private more public.

Such was the great luck of the Fiction Book Club yesterday when Roland Merullo visited us. That we were fortunate enough to have a few moments with Amanda, wife of, and Alexandra and Juliana, daughters of, was its own gift.

In preparation for our special Saturday session, we read Breakfast with Buddha, the novel of Roland's that's been nominated for the Dublin International Literary Award (and which he's discussing today as the book chosen for its first "Wayland Reads" program). As a bonus book, we also agreed to read his latest, Fidel's Last Days, which most in the group also read and loved.

We asked a lot of questions: Why did he write the book? How did he write it? Does he plot out his novels in advance? Why did the characters do this or that? When did he start writing? What did he do before he wrote and/or when he was waiting for his books to be published? What is he working on now? What in Buddha is real, what imagined?

While I could do a very long post now, jotting down all that Roland said, commenting on it and suchnot, instead I'm just going to report what everyone agreed:

"This is the best book club we've ever had."

And how the two-and-a-half hours with Roland affected us:

It was another four hours before everyone left, during which time we had perhaps our most profound conversation as a group about where we are in our lives and where we're thinking of going.

I doubt that was Roland's intention as he is hardly a person who tries to get others to do things or influence them in ways that seem right to him.

What caused this to happen, I think, is his openness, his "straightforward" way, as one book club member said.

I count myself as extremely fortunate to have met Roland when I did, at a point in my writing career when I needed someone to stand behind me and point in different directions, which is precisely what he's done. Unexpected has been his unstinting generosity, which I've been the beneficiary of in so many ways, including his taking time yesterday to sit with our book club and open us further to possibilities.

"...so that all our children could fly"

Speaks, make that, sings (see Amy Dixon-Kolar) for itself, posted for all veterans of the Civil Rights movement, for my parents who called themselves "integrationists" in a segregated Pennsylvania town where that word was hardly understood, and for all of us, still shaking our heads while looking ahead:

Inaugurate: to make a formal beginning

Why Barack won't break our hearts

Sitting in the warmth of my home, a fire burning, a house that's been here since 1723, since before there was a United States of America, miraculously watching Barack give his address on the steps of the Lincoln Memorial, Mac on my lap, hubby with his machine on the old pine chest, watching the TV...and thinking about the future.

We all share the concern that the aspirations we hold at moments of change will run into reality, float away in anger and dust. We're all in love with the future (when it isn't frightening us) but there's a way for this relationship with possibility not to end in heartbreak.

How? Because it's up to him, of course, to do what only presidents can do but it's never been more up to us. Without going all preachy on you, I truly believe that this is our time, our moment to do everything we can. To perform our own jobs as if they are the most important in the world, to come up with new ideas and execute them as fast as we can, and to help everyone we know who's hurting as much as we can. (Anyone need a house or office cleaner? I have a great referral for you!)

There are these inflection points in history, brief moments when grand vistas appear before us, ours for the decorating with our great visions.

What's yours?