14 October, 2011

The Spirit Giveth Life and Other Incredulous Tales of Life

Since last spring, I have optimistically anticipated attending my 35th high school class reunion at the Wheeler School.  Wheeler figured too large in my life story not to go back and see the girls, now women, who populate my memories and shaped my life.
The class of ’76 was not untouched by tragedy.  In my junior year, I was assigned the role of “Big Sister” to an incoming freshman.  I remember her as exceptionally quiet and unexpressive girl.  Standing against a wall, she would disappear.  She wore a cloak of invisibility.  She seemed to disappear among us.  Her aunt, Miss Rowe, taught at Wheeler, so I checked in with her to see if I was doing something wrong. She assured me it was not me, her niece was having a hard time adjusting to some big changes in her life.  When I came back to school after Thanksgiving break, Miss Rowe took me aside before morning assembly.  I listened numbly as she told me my that “little sister” had committed suicide. Rumors were bruited about school later that day, that week, about how she did it.  I removed myself from all discussions. I remember feeling stunned, almost shell-shocked.  Today, counseling would have been provided for any of us whose lives had intersected with her’s.  At that time, we were on our own to figure it out.   I found myself asking what I could have done differently. Suicide always leaves the survivors wondering. 
Kris Kersch was an eighth grade Wheeler student who did not make it to freshmen year.  I did not know her, but I admired the story of her valiant fight against leukemia.  Early one September morning, the entire student body assembled in the courtyard to plant a tree in her memory.  The song, “I Can See Clearly Now,” which forever has her face attached, was part of the service.  Another rather public tragedy was the loss of Jeanie Goulder’s good friend, Billy Boots.  It seemed obscene that he was killed by a n automobile while he was jogging. Deaths and grave illnesses touched many of the families of our classmates.  We students resolutely carried on.  However, these untimely losses delivered an indelible lesson; life is capricious and we are all at risk.  There would be times when a group of us would be studying and I would look around the table and wonder which of us might not make it to middle-age. Even now, I am tempted to whisper, I don’t want the powers to be to hear me, I don’t want to tempt fate.  To my knowledge, the Class of ’76 has lost three classmates   -- Jane Sheridan, Amy Kalberer Sullivan and Lisa Aronson Wyland.  Each death leaves a hole in the fabric that binds us.  Lately,  I find myself  flipping to the page of obituaries in the Now and Then at Wheeler Magazine to see if any more of our contingent have joined the departed. 
In a state borne of ignorance and youth, I never considered there were fates other than death that can profoundly alter a life. In 1976, I am not sure I even considered disability as a circumstance that had any real bearing on any of us.   Neither the literature I read, nor the life I enjoyed, predisposed me to consider that disability could unhinge one of us or alter our paths.  Furthermore, I would never have had the imagination to believe it would be me.  Nor could I have imagined how often I would come back to the Wheeler principle that “”the Spirit Giveth Life.”  When your body does not always cooperate, your must rely on something more.  I have derived strength from those words repeatedly over recent years.  This summer,  I turned in both of my hips for models built of titanium and porcelain hoping to improve pain and functionality.   Afterward, I spent six weeks in Spaulding Rehabilitation Hospital in Boston doing hours of physical therapy and occupational therapy daily.  My post-surgical days were part providence, part torture. I learned that the road to better is steeply inclined and the terrain is rugged.  However, it is not without surprises.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    At Spaulding Hospital, the fabric curtain walls that separate patient from patient in two-bed rooms afford little privacy.  I was listening (despite politely putting on my Bose sound-canceling headphones) to the hospital intake drill as my third roommate in a month was being admitted.   Her name was June.  Or Judy.  A man hovered nearby… a spouse?   My new roommate lived outside of Boston.  I didn’t hear her birthday, nor did I dare guess her age.  A former roommate was 93, but looked not a day over 85.  I gleaned that June/Judy had hip surgery after a particularly nasty fall at her summer home in New Hampshire.  I was able to block out much of the remainder of the interviews.   However, one word, above all others, yanked my attention back to the mysterious, and, as yet, unseen woman on the other side of the curtain.  She had uttered the word, “Wheeler.”
I confess to clicking the power button on the headphones to “off” for this part of the conversation.
Judy, as I had learned was her name, described having boarded at Wheeler for high school in the sixties.  Her mother placed her in an all-girl boarding school after the premature death of her father.  This solitary piece of information reshaped my impression of my roommate instantly.  Right or wrong, I felt drawn to her immediately; she walked the halls of Wheeler, had dined on Wheeler soups, watched the musicals, been to the Farm and shared a life that I, too, had lived.  That piece of knowledge unlocked something.  I felt a kinship I had not felt when all we shared was osteoporosis and unhappy hips.
Having Judy for a roommate was like being hospitalized with a close friend.  Her wisdom, humor and intelligence were a source of solace to me --  and the stuff on which our friendship blossomed.  I could talk to Judy about how hard Madam Erlenmeyer pushed me and she understood.   We speculated that when Madam was teaching Judy to conjugate etre, she probably was in her fifties.  To think, she had seemed like an elegant old woman.  How years can change one’s perspective.  Judy and I reflected on the fundamental values that, day-by-day, were inculcated into our thinking.  She was there during the heyday of the Women’s Revolution. I was there after Elizabeth Curley Brown had made her mark on our society.  Nevertheless, we were branded Wheeler girls.  A label we would never freely exchange. 
As I recuperated last summer, I had an inordinate amount of time to reflect upon how I define myself.  Three years ago, I was diagnosed with a congenital collagen disorder.  I have struggled with its symptoms for my entire life.  Only recently have we had a label for it.  Unfortunately, age accelerates the effect that the syndrome has on me.  Slowly, in bite-sized increment, it has disabled me. My diagnosis came about as a result of my daughter receiving a diagnosis. When the geneticist and cardiologist cast about for the gene donor that brought about her disorder, it was a little like spin-the-bottle.  The bottle stopped.... pointing at me.  A lifetime riddled with illness, injury and miscarriages suddenly snapped into focus, I had Ehler’s-Danlos Syndrome.
Ehler’s-Danlos Syndrome (EDS) comes about as a result of a collagen disorder.  Collagen is the ‘glue” that holds the body together; it is distributed all through the body.  The symptoms may be mild to severe. There are six sub-categories. I was diagnosed with Type III, Hypermobile.  In the 1 out of 5000 people with EDS, their collagen is flawed leaving it too flexible and stretchy to work properly.  This translates to ligaments that don’t do their work and in muscles that do not sustain mass.   Skin may be stretchy, often there are gastrointestinal problems, as well.  As a group, we bleed easily, become cold easily, and have a high tolerance for pain.  For me, it means my joints are easily unhinged--  my knees dislocated, my spine broke and my vertebrae are deteriorating, my hips wore out and I am hobbled by pain.  It affects my heart because the collagen that makes up the aortic root stretches over time. Both my daughter and I have changes in our hearts that are typical in patients with this disorder.  Fortunately, I have the class of EDS that generally does not result in sudden, cardiac events.  All of which brings me back to my Wheeler days.  In my youth, I never considered there would be those among us whose paths would be altered by anything less than death.  Imagine my surprise and my lack of grace in accepting the news that I had a disorder that I unwittingly passed on to my child.  Imagine my overwhelming sense of gratitude that I would have a child who accepts the cards that life has dealt her and goes about the business of living as fully as possible.
My days spent with Judy at Spaulding helped bring to mind one of the most important pieces of my Wheeler education.  When I was younger, I believed Wheeler, as an all-girl school,  was responsible for imbuing me with a sense of self-esteem.  I have, in ensuing years, discovered Wheeler helped contribute to more than my self-esteem.  Some kind of transformation was gradually wrought over my years at Wheeler.  It was the resilience of spirit under any condition or circumstance.  It was precisely because of the losses we observed at Wheeler that I was christened to life’s hardships.  When I was faced with my own trials, I grew stronger.  Over a summer when I felt untethered and alone, I found that my Wheeler connections were a lifeline.  Thirty-five years after graduating, I had friends from Wheeler willing to help me weather life’s storms.  Ellen Pinkos was a regular correspondent, advocate and friend.  Jan Fierman Weiner reentered my life as a loyal friend, ever a comedienne.  And, of course, the universe delivered up my new Wheeeler friend, Judy.  
I will not be at my 35th reunion. At this juncture of time, I can’t travel comfortably. However,  Skypping brings me face to face with friends.   I spend inordinate hours on my computer traveling unfettered by my body.  I write my blog.  I write magazine articles, continue to look for an agent for my literary novel (here’s the plug; I accept all leads and track down all suggestions to get me an agent and my book published) and I manage my family life from bed.
I am constantly bumping up against what I desire to accomplish with what my body allows me to do.  However, my fingers and my Mac give me an open-ended ticket to travel.  My spirit remains indomitable.  And, as Wheeler taught me, “The Spirit Giveth Life.”
My blog may be found at http://dawnings-anewdawn.blogspot.com/
For more information about Ehler’s-Danlos Syndrome go to www.ednf.org.