Evolving at the Speed of Life

Uncle Eddie: One of a Kind

A little more than a year ago I wrote here about my Aunt Stella.  Today we laid my Uncle Eddie to rest beside her.  This is where the intellectual and the emotional collide.  He hasn't been well or happy, but we weren't prepared to let him go.  We wanted more time.

He was a wonderful husband and father.  My Dad's twin brother, younger brother to Esther and older brother to Mitzi.  And for all of the family the one thing we agreed on...We loved  him as he loved us...unconditionally.  We were lucky enough to spend summers in the mountains, weekends at resorts and one unforgettable vacation in Florida with him.  There were parties and brunches and dinners and he kept us laughing always.  He was a people magnet and he made friends almost literally by saying hello.  He could draw cartoon characters free hand and delight all of the children for hours on end.  He entered the room smiling and dropped everything when someone needed him.

I could go on for pages, but I really want those of us who were lucky enough to know him to share the joy that was Eddie.

When he was sitting Shiva for Aunt Stella in 2007 my mother, father and I went to visit.  Losing her was very hard on him and he seemed a little lost.  They were together almost 60 years.  He said to us...

"She was always there for me.  When I had cancer, she was there.  When I closed my business she was there.  When I had my first stroke AND my second stroke she was there.  When I had pneumonia she was there.  I'm telling you...that woman was a jinx!"

The delivery was with an absolute straight face.  Deadpan.  We were howling!  Vintage Eddie.

I'm sure over time I'll have more to add, but until then...anyone else want to share?

On Second Thought...

Shortly after I first moved to Manhattan I was having breakfast at a diner on the west side with a friend.  Small place.  Maybe 12 tables.  I noticed an elderly man eating by himself.  He was well dressed.  Sunday best, so to speak.  He had spread one napkin on the table to use as a placemat, tucked another into his collar and was eating his meal.  I was overwhelmed.  I thought it was so incredibly sad that this man was by himself.  That at this stage of his life he had nobody to spend Sunday with.  Recent events in my life sparked this memory, and I have a new appreciation for how fortunate this man was.  He was mobile, self-sufficient and perfectly happy to sit at the diner and read the Sunday paper.  Not all of us will age as gracefully.

Remembering Aunt Stella

My Aunt Stella passed away earlier this week.  (This is a picture of Aunt Stella, Aunt Mitzi, me, Aunt Esther.)

Growing up we were a family that traveled like a nomadic tribe.  Sundays in Brighton Beach.  Summers at Schimmels bungalow colony.  Camp Merrimac visiting days.  Miami.  London.

There were many years when we made the annual family trip to the Borscht Belt in the Catskill Mountains.  We traveled en mass.  Descending on some unsuspecting hotel like a swarm.  Back then Saturday night was a glamorous affair.  Friday night was, so to speak, more "casual".  My earliest memory of my Aunt Stella was at one of those hotels.  I think it was the Raleigh.  Friday night she came down to dinner in this elegant cocktail dress.  If I remember correctly it had spaghetti straps and marabou feathers at the hem.  I'm not sure about the color.  Maybe pink.  Saturday night, being formal, called for a gown.  Same dress. Black.  Floor length.

The Urban Dictionary defines a "fashionista" as a positive, powerful woman with a natural flair for style.  Stella was, without a doubt, a "fashionista" before Carrie Bradshaw and The Devil Wears Prada.  I don't remember jeans.  Or sneakers.  Nothing less than a full ensemble.  Not a moment when she wasn't impeccably dressed.  Always with flair.  She definitely had presence.

She was, though, much more than that.

My Aunt was generous.  Her home was always open to family and friends.  Everyone was welcome.  Uncle Eddie and Aunt Stella moved from Elmont to Jericho when I was starting high school.  Susan had gone to college already, but Marci and I were in the same grade.  We had the same friends.  We had parties and we invaded their house on Sutton Place on a regular basis.  While I'm sure we were a handful, I never heard a complaint.

You know, the things we remember are often random.  And then there are those moments that teach you the meaning of a word like generosity.  One day my mother and I were visiting.  Aunt Stella was showing us a slide necklace that she had picked up at an antique fair.  A long gold chain with a round sliding charm...diamonds in a circle and an opal in the middle.  It was the most beautiful thing, and when I told her how much I liked it she gave it to me.  Just like that.  On the front steps of her house.  It took me a long time to collect enough slides to make it a bracelet, but when look at the finished project it's still the one round charm with the diamonds and the opal that is my focal point.

My Aunt was unfailingly loyal.  All families have their differences.  For our family, sometimes those differences resulted in rifts that lasted years.  Sides are taken and disagreements can take on a life of their own over time.  Aunt Stella never got in the middle of it.  Truly...I never heard her speak a bad word about a member of the family.  She knew that time heals and that eventually whatever it was would be resolved.  She was unwavering in her loyalty to the family and tried always to bring people together.  It was often difficult to do, but she pulled it off.  I learned a lot from her and try hard to follow her example. 

Most of all she was fiercely devoted to her daughters, Marci and Susan, their husbands, Lenny and Joel, and her  four wonderful grandsons.  And to my Uncle Eddie.  Last winter he was in the hospital.  He was quite sick and my parents were flying down to visit.  Aunt Stella called my cell and said, "Listen...you get hold of them before they come to the hospital.  I've told Eddie that your father has to come down here on business.  I do NOT want him to think he's so sick that they had to fly down."  Fiercely protective and as wild for him then as the day they got married.

Stella was a special aunt, sister, grandmother, mother, and wife.  The family wouldn't have been the same without her.  She'll be missed and remembered always.

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!

Kid Friendly Fare: The Gazillion Bubble Show

Last month my niece and nephew, Sophie and Brenner, turned 4.  This past Sunday I took them to see The Gazillion Bubble Show for their birthday, along with my sister and brother-in-law. 

I first heard about the show when I went to see another play at the The New World Stages on West 50th Street, an off-Broadway multiplex.  All the kids coming out of the theater were laughing and jumping around.  They seemed to love it, so I got the tickets. 

Other than The Moscow Cat Circus (another lovely theater experience) this was quite possibly the most painful thing I've had to witness.  We were in the first row, of course, and this guy was blowing bubbles in different colors and shapes and prodding us to laugh, clap, dance, whateva!  Sophie and Brenner enjoyed it, but pretty soon it became clear to the adults that this was not what any of us expected. 

There were bubbles.  Lots of them.  They were pretty.  Only two segments actually had a "gazillion" bubbles, so I felt a little misled.  And given the junk they sell at Toys R Us these days I'm not so impressed by the size of the big bubbles because I can do that with a funky hoola hoop.

My real issue is the actual "story" behind the show.  Threaded throughout the show was a film noir about this bubble guy's life in Yugoslavia and his family living in Hawaii (not sure how they made THAT transition).  Now...considering that this show is for the under 6 set, my question would have to be...So what?  I can promise you that my niece and nephew didn't care.  And while it was sort of okay for him to share with the audience, the acoustics were awful, his accent was hard to understand and, quite honestly, I was so busy keeping bubbles off my freshly washed hair I wasn't really listening.

The kids really liked it, and it was only about 1 hour and 20 minutes long, so I did what I set out to do.  Specifically, take them to a fun thing for their birthday.  For me the best part was the cheeseburger at Vinyl after it was over.  My problem now is that my older niece, Rebecca, wants to see it.  I may have to tell her it closed.

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.

The Spoiler

Let me say at the outset that I acknowledge that this situation is entirely my fault.  My first niece was born more than 13 years ago and with each of my sisters' successive children I have gotten sucked in deeper.  I literally have lost the ability to say no to these children.  Build A Bear, American Girl, MBX bikes, weekends away.  And now there are five of them...13, 11, 9 and 4 year old twins.  I have worked hard to earn the title "Best Aunt with Whom I’d like to Spend All My Free Time."  With that in mind...

I spent last Saturday with my youngest sister and her kids.  Barbara (13), David (11) and Rebecca (9).  The Sunday before I had gone to an outlet mall and picked up a few little things for the girls.  What I mean by a few "little" things is...Barbara got a "little" Fendi bag, and Rebecca got a "little" Sportsac suitcase and a "little" Sportsac Tokidoki backpack.  Unfortunately there is not a lot at Woodbury Commons that my nephew would appreciate, so he sat by and watched the action.  Little did I know he had a plan.

Last year my nephew really wanted a BMX bike for his birthday.   My brother in law didn't think they were that expensive, so I took him to the store.  BIG surprise on the price.  Especially because, unbeknownst to me, he knew what he wanted. And it wasn't the budget bike.  So we made a deal.  I bought him the bike as a combined gift for his April birthday and the following Hanukah.  Of course, Hanukah came and I couldn't give him nothing, but that's not the point of this post.

So back to last Saturday. We pile into the car and head off to do some errands, including a trip to the local GameStop store.  (I knew what was coming but didn’t have the common sense to flee.)  David wanted to trade in his Sony Playstation for an XBox 360.  When it was all said and done he had $160 to put toward the new system.  Of course he is calculating and I am sure he waited to do this until I was with him.  Of course, I offered up the same deal as last year, which he quickly accepted.  So we got the system, an extra handheld wireless controller and one game.   (I know…one measly game.  Do me a favor and STOP IT!)  We drove home, he hooked it up in 2 minutes and before we knew it the den was filled with boys playing on the new XBox.

I'm not really complaining.  I was just thinking about what I had when I was their age.  As I recall, Landlubber jeans (not Juicy), a pair of apricot colored shoes from Bakers in Roosevelt Field (not Fendi), a Patty Playpal doll (that did nothing other than sit there) and a pink plastic case for my 45 records (so I could take it to my friend’s house and play them on her record player).

A Dive into the Gene Pool

My family tree is a little bit diseased.  I mean, if we were actually a tree we'd probably be cut down.  But we're people so we get to suffer through by way of adventures and tangles with the medical community.

I am a cancer survivor.  It was found quite by accident, though early, and after surgery and a short round of treatment I was declared cancer-free and have remained there.  The most interesting part of the experience was the fact that I've known for years, and have indicated as such on every form in every doctor's office I've been to, that my family is rife with colon cancer.  What none of those doctors connected was the fact that this history could be an indicator for my cancer. 

Last year my Aunt underwent genetic testing as a result of her own experience with cancer and shared the results with the rest of the family.  What a shock (not) to learn that we are all at risk for a hereditary gene "mutation".  Not exactly earth shattering news given the multiple family plots.  So I pursued genetic testing on my own and, yes...I am a member of the family.  The upside of all this is awareness and a personal guide book on health care management. 

Remember when you looked to your doctor for all of the answers?  When you went to the office, got your physical, were proclaimed "healthy" and sent home for a year?  Or you found out you had something and they said "Here's what we're going to do"?  Nostalgic, isn't it?  In today's world of managed healthcare, medical office profitability studies and outrageous malpractice insurance costs the average doctor visit is 15 minutes. Most often those 15 minutes are spent with a Physician’s Assistant. It seems even the best doctors practice factory style these days.  My doctor's office employs 11 Doctors, 9 Physican Assistants, 1 Physical Therapist, 1 Biofeedback Specialist and...get ready...47 in Office Staff.  It's a long way from Drs. Turner and Rand in Plainview, New York.  They practiced out of a private home.  Two doctors, one nurse, one receptionist.

Each of us has to take an active role in our health care, maintenance and treatment.  It's not enough to say "What's wrong with me?"  We have to readjust our thinking and be prepared to research, to question and to challenge our doctors.  One of the most productive practices for me has been keeping a 3-ring binder of all my medical information.  I started it as soon as I was diagnosed and that binder now contains literally every scrap of paper, including notes, insurance claims, test results and prescriptions since October 2003.  It's been enormousely helpful.

Years ago my AOL colleagues and I envisioned a world where we would manage our health records online and seamlessly transfer the information from doctor to doctor.  Of course this unearthed a multitude of security and privacy concerns.  Not to mention the daunting task of changing the behavior of care providers and introducing them to the joys of automated file management.  In the final analysis it became clear that if we regular people were to really get ourselves organized around our healthcare we would have to do it on our own.  Revolution Health is worth a look.  This new website was conceived and executed under the management of Steve Case and allows users to store their medical information and prepare and print documentation prior to doctor visits.  It also facilitates community so you can interact with people and share ideas, concerns and even treatment options.  Sometimes it's a simple matter of giving someone the courage to get tested when they'd rather not hear the results.  Community can be a very powerful motivator.  I'm sure there's more to say about the site, but I'm just starting to explore.

My mutation and I are getting along just fine.  We've readjusted our health maintenance plan and, armed with information, we know that we'll be just fine.