Evolving at the Speed of Life

Finding A Cure: How Many Kids Does It Take?

Yesterday I participated in the inaugural Hope Walk to raise money for Autism United, a new organization that provides support services for people with Autism on Long Island, New York.  Proceeds from the fund raiser will fund two initial projects...the Harvey Weisenberg Resource Center and a comprehensive study of people with Autism in the region.  This is a pilot program that will influence services and research nationally,,  My team...Sophie's Team, in honor of my niece...raised more than $12,300 from friends and family.  The organization as a whole raised more than $82,000.  I thank everyone who participated either with a donation or moral support.  As a first effort for a start up organization it was spectacular!

In 1988 the masses were introduced to the idea of Autism with the release of Rainman starring Tom Cruise and Dustin Hoffman.  Bob Wright, former Chairman of NBC Universal, and his wife Suzanne were the force of nature that created Autism Speaks.  In the last few weeks Jenny McCarthy has been on the talk show circuit talking about her new book, Louder Than Words chronicling the story of how her son is recovering from Autism.  (By the way, she has been emphatic about using the term "has Autism", as in "has a disease", rather than "is Autistic" as in defining a personal trait.)  Holly Robinson Peete is also speaking out about her son's struggle with Autism.  Cathy Moriarty, Chaka Khan, Joe Mantegna, Anthony Edwards, Didi Conn.  All have family members who are afflicted.

Personally, I can think offhand of 15 people in my life with family members who are afflicted.  Every day they talk to doctors and therapists and teachers and holistic healers and anyone else who can give them direction and hope.

As to be expected, there are dissenting views.  Autism Speaks merged with Cure Autism Now (C.A.N.) and there are many who feel the organization leadership is tied too closely to corporate health care and pharmaceuticals to be objective about the potential link between vaccinations and Autism.  Most of their research to date seems to have focused on genetics.  Others are investigating older fathers, testosterone in the mother's womb, and related theories.  Others think the preservative in the vaccinations...thimerosal, is a mercury-based compound used to prolong the efficacy of the vaccines...is the reason.  And others thing the vaccinations can trigger a genetic pre-disposition to the disease.  It will take a long, long time to sort all of this out and find effective courses of treatment for the 1 out of 150 kids on the Autism spectrum. 

One thing is clear, though.  There are families out there who are in desperate need of guidance.  Like the couple with a child that is exhibiting all of the signs but they are in denial.  And like the woman who has been getting advice from her son's school to have him tested and can't wrap her mind around the potential diagnosis.  Autism United was created for them and other families like them.  There is a family in Mineola, New York who has a daughter with Autism.  Recently she left the house before dawn, crossed a major intersection, climbed up on a truck and stayed there until the driver showed up at 7 AM for his shift.  They are a family of modest means.  Autism United is guiding them through the New York State bureaucracy.  It turns out that the state will pay for installation of alarms and fence in the yard so they can sleep at night. 

Yep...Sunday was a great day!

1967 Redux

Last night I saw Hair.  No, you are not having a flashback.  September 23, 2007.  Hair.  Performed live in New York at the Delacorte Theater in Central Park.  First time since the original Broadway run closed on July 1, 1972 after 1,742 performances.  It's been 40 years.  A bit of triva...

In the original cast...Melba Moore, Shelley Plimpton, Paul Jabara and Diane Keaton!

My mother took my sister, Barbara, and I to see Hair during the original run.  We were in our early teens at the time and had front row seats.  The fact that there was full frontal nudity had been widely publicized.  No surprises (although it did scare my sister a little).  But seeing the show again as an adult was a transformational experience.

On a personal note, my mother was apparently far more hip than I gave her credit for.  I'm not sure I would have taken kids to see it.  Not because of the nudity.  Because at a point in time when adults were trying desperately to "protect" their kids from the evils of war and recreational sex, this theatrical event was a rallying cry. 

From a cultural perspective, you would expect it to be nostalgic, and it was.  It brought me right back to the 60s.  I could almost smell the pot in the school parking lot.  It's also relevant...No more war!  And philosophical...Check out the lyrics to "Air" and consider how we allowed the environment to deteriorate this far.

Welcome! sulphur dioxide
Hello! carbon monoxide
The air, the air
Is everywhere
Breath deep, while you sleep
Breath deep
Bless you, alcohol bloodstream
Save me, nicotine lung steam
Incense, incense
Is in the air
Breath deep, while you sleep
Breath deep
Cataclysmic ectoplasm
Fallout atomic orgasm
Vapor and fume
At the stone of my tomb
Breathing like a sullen perfume
Eating at the stone of my tomb
Welcome! sulphur dioxide
Hello! carbon monoxide
The air, the air
Is everywhere
Breath deep, while you sleep
Breath deep

It was mind bending.  I hope the Public Theater brings it back to play to a whole new generation.  Maybe they can learn from our mistakes.

Summer 2007: The End

I can't believe Summer 2007 is over.   This past weekend I went to the beach with Lucy Fay to get in a couple of last hours on Flying Point Beach.  She loved it and I was cracking up watching her run up and back as the tide came in and went out.   The weather, the light...all a perfect way to say goodbye to summer.

Six Years Ago Today

I'm sitting on my terrace with open views of Manhattan looking south.  No matter how many times I see the skyline the absence of the World Trade Center Towers is unreal.  Tonight, as every year since 2001, there are two beams of light rising up from Ground Zero to honor those lost and those who tried to help.

Six years ago today I work up at 5 AM and boarded a 7 AM flight for San Diego, via Salt Lake City, to attend a wireless conference.  At 9 AM I dialed in to a conference call from my seat on the plane.  The system said the call had ended.  Strange, but stuff happens.  Within minutes the announcement came that we were landing.  There was, we were told, an air traffic situation and all planes in the area were being asked to set down. 

"Stay on the plane."  "Get off the plane."  "Stay in the boarding area."  "We'll make announcements soon."

I got a call through to home and was getting the blow by blow on what was really happening.  At the same time the gate personnel were making an announcement.  The girl next to me was on the phone sobbing.  Then she collapsed into the arms of a fellow passenger.  Confusion.  Madness.  We finally convinced them to open the bar.  It was 9 AM in Omaha. 

The bar was silent.  Not a sound.  Five hours of total strangers transfixed by television.   I sat at the bar between a young girl en route home to Phoenix and a Pentagon employee.   I can't remember their faces.  All I can remember was what everyone else remembers.  The dust from the collapse of the first tower.  The second tower crumbling.  The smoke pouring out of the Pentagon building. 

Eventually I made my way to a Red Lion Inn.  At that point I think we all believed the planes would be flying within a day or so.  The magnitude of what had happened still hadn't sunk in.  When I woke up Wednesday morning, desperate to go home, I was determined to make my way east one way or the other.  Nine hours alone in a rental car to Chicago talking to friends and co-workers stranded all across the country.  On the outskirts of the city I met up with my boss and two colleagues for the drive to New York.  I was never so happy to see people in my life.  I'd been holding it in since the day before and when I saw them my knees went weak.  Another 22 hours driving to New York.  These were the longest couple of  days of my life.  But they attacked my city and I needed to be with my people.  My neighbors.  In my city.  I felt like I needed to wrap my arms around all of the people who had been there and tell them we would be all right.  Different, but we would get through it together.

As long as I live I will never forget the moment we got a look at the city that had been forever changed.  Coming across the George Washington Bridge and seeing a plume of smoke where the towers stood was like being punched in the stomach.  At the same time home was the only place I wanted to be.

I think I speak for many when I say that New Yorkers still stand together in grief and solidarity six years later.  We are more fragile than before.  We are stronger than before.  We are united in our love for this city.  It's going to take a hell of a lot more than some crackpot in a turban and the sheep-people who hang on his every word to beat us down!

UWS = Home

I've been essentially gone all summer.  Traveling for work took up most of June.  Weekends in July and August were spent at the "Crapshack" I rented in East Hampton.  So this week is the first time I've had to take care of things at home.  I wasn't looking forward to the lists, the organizing, the shlepping.  But it was long past time so today I started taking care of business.

I live on the Upper West Side of New York City.  I've lived alternately East and West over the years.  When I sold my apartment a few years ago a friend helped me find a fantastic rental on West 86th Street.  (Perfect size.  High floor.  Huge outdoor space.)  I wasn't so excited about the neighborhood.  I had been happy East.  Off Park Avenue.  I didn't truly fit in over there, but I faked it pretty well.  You know...pretended not to see people on the street.  Carried the obligatory designer bags...handbag and shopping.  Never walked.  Taxis for everything.  When in Rome...  But I was wow-ed by the new space so I trotted my not-quite-east-not-quite-west-self across the park once more.

I've lived in this building for 3-1/2 years now.  It occurred to me today, as I ran from the cleaner to the shoe repair to the grocery store, that this is truly as much a neighborhood as where I grew up.  I ran into people I haven't seen all summer.  Met up with some friends in the building.  Bumped into the guy from the pet supply store in the street.  Reunited my dog with her dog friends at Mariner's Gate.

Not a momentous day, but I came home feeling all warm and fuzzy.

Who is Accountable?

In September of 1972 I left home to go to Syracuse University.  I moved into my room at Shaw Hall and waved goodbye to my parents.  As they drove away down Comstock Avenue I was happy, scared, excited, depressed, thrilled.  All of it.  This was, other than summer camp, my first real experience living away from home. 

The girls on my floor bonded and broke off into little cliques as girls tend to do.  Toward the end of the first week I woke up to find police on the floor.  Someone was missing.  One of the freshman girls, Karen Levy, had put a sign up in the lobby of the dorm...on the "ride board"...looking for a lift to New Jersey to visit her boyfriend.  A guy had called and said he was goig that way.  They agreed on a departure time and arranged to meet at Downstate Medical Center.  Karen took a friend with her for the hook up and the plan was that if he looked suspicious she would say she changed her mind.  He seemed fine, she smiled and said goodbye and they drove off.  She never did get to New Jersey and she was never seen again.  It turned out that the guy Karen went to meet was arrested on another charge in our senior year.  He told the police where her body was buried.

Of course it was horrible.  But it was just so wrong.  Karen Levy's parents cared for her, nurtured her, saw her through the teenage angst and sent her off to a good school for a first rate education.  They trusted she would be safe and found out later, in the most brutal way, that security was not part of the package.

My younger sister, Barbara, went to London for a semester with Syracuse University.  Syracuse only housed the students for a short time until they found more permanent arrangements.  She and another girl rented an apartment.  There was a gas leak.  She died only weeks after she arrived.

And the 100-plus Syracuse University students who spent a semester abroad in 1988?  Their parents sent them to Europe assuming the school would protect them.  Charter travel was not part of the package, so they were left to make their own reservations.  They flew home on Pan Am 103 and their fate was sealed over Lockerbie, Scotland.

More recently...Columbine, and the 150 school shootings that have taken place since then.  Last month two girls from Long Island were killed at the University of Arizona.  And now Virginia Tech will be added to the long list of senseless deaths.

Much as I'd like to get on  my soapbox about gun control, I don't believe reasonable people will ever make progress against the very rich, very powerful gun lobby.  But I do want to know...where is the accountability?   Parents believe that when they hand their children over to a school they are protected.  How is it that these institutions consistently fail to protect these children and there is no public outcry?  Shouldn't we expect the adults in charge to protect the children they are responsible for?  Shouldn't we require that they be proactive in keeping them safe?  It is outrageous.  And I don't know what it will take for someone to stand up and say "No more" and advocate for meaningful change.

Is It Live, or Is It Memory?

There's an art gallery in Toronto that I really like.  Birch Libralato.  I first saw the gallery in 2004 at the Affordable Art Fair in New York and have since purchased a few pieces.  Recently I acquired this painting by David Kramer.  Kramer is fairly quirky and most of his recent works are drawings accompanied by thought provoking text.  I have another..."Why can't I grow old gracefully.  Like wine or land."  Another post, another discussion.  But, the first time I saw the piece pictured here it drew me in.  First I laughed, but as I kept thinking about it I realized it is more profound than funny.

When I look back I think about the places I've been and the people I've met.  A lot of those memories are pretty vivid.  For example, I remember once sitting outside my apartment building in Queens with the boy who lived next door.  The Bungalow Bar ice cream truck was pulling away.  I was 4 and he was 6.  My mother was yelling at us from the apartment window because she said no ice cream and he was arguing (at 6) that it was a fudgsicle, which wasn't really ice cream.  I remember ditching high school and jumping in a car with an older boy to join an anti-war protest at C.W. Post College.  My mother was not pleased.  Oh, and then there was the birthday in Acapulco and the salad bar with my cousins David and Robin.  Robin relived that one for a good long time, if you know what I mean, so I know she remembers it!

But, every once in a while I'll get into a "Do you remenber when we..." conversation with a friend.  I can go chapter and verse into the detail, and my friend will look at me like I've lost my mind.  Their memories are different.  Not a little different, mind you.  Vastly different.   

On January 4th I was watching CBS Sunday Morning.  They were doing a segment on memory.  The research psychologist, Elizabeth Phelps, compared it to a game of telephone.  Just like in that game...where something is repeated from person to person around a circle until the last person has to repeat it out loud...every time we replay memories we can alter them slightly based on where we are in our lives at the point when we are reliving the memory.  Very interesting stuff.

Stay tuned.  I'm going to do a little research!

Darwin on Natural Selection

A friend of mine has been going through a particularly bad time over the past several years.  This friend had been a single point of focus in a lawsuit, while the many, many people who were originally involved in (READ:  took credit for) the issue being scrutinized evaded prosecution.  (The government has a way of enticing you to save your soul.  Perhaps a topic for a later post to be titled "Accountability:  Is It In You?")  But in my opinion one of the most difficult aspects had to have been the isolation as friends were unable to speak to each other for the duration on "advice from counsel". 

This past weekend there was a celebration to say goodbye to the past and welcome the next chapter.  It was difficult for some to travel at the last minute, but they were clearly there in spirit.  And many of those who had been warned away over the past several years took great effort to be there.  In fact, they had always been there.  But this particular night they got to throw their arms around each other and embrace the future.  It was a truly joyful occasion.

Hindsight, as they say, is 20/20.  Back when this all started we were blazing trails and executing a vision.  There was no roadmap.  Nothing that had gone before showed us the way.  While it opened the door for tremendous creativity, it also allowed outsiders to criticize.  Even prosecute.  But while the past few years have been difficult for all concerned I have to believe there is a reward at the end of this particular road.  Specifically ... clarity.  Darwin is credited (and  reviled) for his theory of natural selection.  In the context of recent events and the people involved, and with regard to the idea that nature is constantly improving on it's previous iteration, this wisdom is particularly appropriate.