The Spirit Giveth Life and Other Incredulous Tales of Life

Since last spring, I have optimistically anticipated attending my 35^th 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 35^th 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.

Line-Dried

 

          My dryer broke about four weeks ago.  I was standing at the kitchen counter when I heard a tremendous CLUNK sound emanate from the laundry room.  No scent of smoke, no horribly abrasive sound ensued.  I went on with making dinner.  About two hours later, I reached into the dryer expecting to pull out a dry load, and discovered a soggy mass, tightly coiled in on itself.  All the wash was bound together by the stretchy amorphous legs of my daughter’ tights.

            I turned to my helpmate, my husband.  He is abundantly more talented in understanding the machinations of inanimate items than am I.  Half an hour later, he rendered his verdict.  Call the repairman.

            It took three phone calls to locate a serviceman who would do repairs on a thirty- year old gas dryer.  His name was Bob.  Bob was as helpful and friendly as could be.  He identified the problem and told me he’d order the part.  I explained that I couldn’t go very long without a drier with three children under five – the baby just six months old.  He was sympathetic and left.  The next day, he called me with a good news, bad news story.  He couldn’t get the part, but he had “tinkered” in his shop at home and had managed to get the old one working.  He returned to install it.  I jokingly asked if there was any risk of fire, explosions or gas-related accidents.  He reassured me that there wasn’t by demonstrating how the part was tooled.  When the burner started right up, I was wildly enthusiastic about his demonstration.  Bob kept cautioning me, “I can’t tell you how long this will work…”

            It worked for three loads.

            The gauntlet flung down, my husband decided to really roll up his sleeves.  He puttered and tinkered with staccato commands emitting from the laundry room floor, “Flashlight,” “Screwdriver,” “Turn it on,” “Quick, turn it off!”

The upshot of his ministrations came as a swift whack on the dryer’s side, and the dryer worked.  He showed me exactly where, and how hard, my palm must strike.  I didn’t have the knack.  I tried with my fist, my foot, the palm of first my right, then, my left hand.  Nothing worked.

            We talked about buying a new drier.  We looked at flyers, read reports, all very scientific.  The purchase of a new drier would be an unexpected expense, but not a prohibitive one.  Surprisingly, there was something else going on. Something undefined caused our reluctance.  I was in no hurry to buy a new machine.

            The laundry continued to be generated at an alarming rate  -- the natural consequence of a cleanly family of five.  Since I happen to do the bulk of that household duty, and because I would have to wait for my husband to be available to give the machine a wallop, I resorted to line-drying.  Now I have a friend (who gave us the dryer fifteen years ago) who will only use a dryer under dire circumstances…even when all four of her sons, and mother lived at home with husband and her.  I remember shaking my head in disbelief.  “But Joanne,” I would lament, “You spend all your time centered around washing, hanging, picking, folding, ironing, and putting away laundry – all while keeping an eye on the weather.  How can you manage to fit in your job, the boys’ activities, shopping and meal preparations?”  She would never answer me directly, instead, she would smile knowingly. Rather like the initiated might smile at the uninitiated. 

            I have since joined the ranks of the initiated. 

            At 6:30 in the morning, when I bundle up my son, plop him in the stroller under the clothesline and begin hanging laundry.  I enjoy a stillness and expansiveness people pay therapists to achieve.  At noon, when I pick that first load, and hang the next, I escape from my desk or my household chores for some mid-day sun. The baby likes to be placed directly under the clothes so he can reach for them as the breeze flutters them just beyond his reach.  My young daughters race back and forth in a game of their own imagination.  At 5:50 pm, while I go outside to bring in the last load, I escape from the madness of a hungry family who are nipping at my heels for food.  I am alone among a colorful population that never resists my ministrations.  Later, after dinner, the radio blares the daily news that I completely disregard .  However, I can recite verbatim the forecast for the next day’s weather.  Just before bed, I enter the laundry room to inhale deeply of that wonderful clean, outdoor scent that was so hard-earned.  The fragrance seeps into the fibers of the fabrics of those line-dried sheets and towels.  The box of “outdoor fresh” Bounce fabric softeners sheets lays unused on top of the dryer.

            The downsides do exist in this way of life; chapped fingers, unexpected rain showers, stiff, unforgiving blue jeans.  But for a while, it’s a nice way to slow down life.  I recognize that this step back in time is drawing to a close.  I ordered a dryer and it is due to be delivered today.   I am hoping to salvage the best from my new dryer – fluffed and tossed convenience as well as an occasional visit to a line-dried way of life.

                                                                                                Reprisal of essay

                                                                                                     May, 1995

Irreproducible Love

                                                

                 1974      Sally                   Dawn                           Chicki       

Chicki was the first person to love me for who I was rather than due to a genetic imperative.  As I grew up, she was an ally and a friend; she helped me weather the battles of childhood, adolescence and young adulthood. Chicki took me as I was, without forethought or deliberation.  She doled out life lessons like the candies on a candy necklace.   In later life, distance and circumstance separated us, but I never doubted that she would help me if I needed her.  It was kind of like going through life with a parachute.  Just knowing Chicki was in the world allowed me to believe that, not matter what life threw at me, I would land on my feet. 

            The origin of Chicki’s name was never explained to me, nor did it matter.  She was my mother’s younger sister by twelve years.  When I was a child, she was called a “change-of-life baby.” Chicki was born well after her siblings; my grandmother was 39 when she delivered her.  Shortly thereafter, my grandfather died.  My grandmother had two children in college and one entering grade school. Since my grandmother had to work, she enrolled Chicki in a nearby parochial school.  The nuns were regimented and had little patience with Chicki’s antics and imperfection (Chicki had a severe hearing loss in early childhood, due to a high fever). She wore hearing aids that were large, fell out often and would emit ear-splitting squeals that would disrupt class. She was reprimanded for turning them off.  When asked why she did this, she said, “It’s easier to daydream.” Perhaps the final straw for the nuns was when they found Chicki, a Protestant in a Catholic school, raiding their third floor living quarters. The secret she whispered to me may now, fifty years later, be divulged.  Nuns’ panties and bras are sometimes dressed with frilly lace.  My version of that take-away moment was that all women are entitled to secrets.

I do not remember a time before Chicki came to live with us; she was simply the reason my sister and I shared a bedroom.  Later, I understood there were “problems” between my grandmother and aunt so my parents took her into our family.  Chicki’s bright future was briefly dimmed by a man named John to whom she was briefly engaged.  All I remember about him is his name and the effect he had on her psyche when their engagement was broken.  On Wednesdays, my mother would escort Chicki to see a special doctor that would help her with her mind.  Chicki would see the doctor for precisely fifty minutes; I knew this because it was how long I had to read the HIGHLIGHTS magazines that were strewn about in the waiting room. I asked Chicki what she did with that doctor for all that time.  She told me they talked.   “Sometimes you need someone other than your family and friends to help you understand yourself,” she told me. “It’s okay to ask for help.”

Another lesson Chicki taught me was the value of omission.  She had borrowed a friend’s new, red mustang. When she offered to take me for a ride in it, I jumped at the chance. We cruised along unfamiliar streets and neighborhoods.  Eventually, we drove between rows and rows of army barracks.  Chicki declared that it was time to go home.  With her foot bearing down on the gas, we raced down the avenue.  At the instant she meant to take a right, she misjudged the corner.  The car lurched over the curb, with its tail wigwagging behind.  The mustang came off the curb with an earsplitting jolt.  Chicki’s right arm, a precursor to seatbelts, stretched across my chest to secure me in my seat.  When we resumed our ride home, she strictly observed the speed limits and traffic signals.  Just before we got home, Chicki stopped the car and turned to me, “Dawn, there are going to be times when it doesn’t make sense to report every detail of an adventure.  Please don’t tell your parents about this little mistake.” Thrilled to be taken into her confidence, I willingly agreed.  It was the first time I understood that there could be parts of my life to which my parents were not privy. 

In a move that surprised and delighted all of us, my grandmother and Chicki wanted an adventure together.  They found jobs and rented an apartment on Martha’s Vineyard Island for a year.  Unknowingly, they opened a door that led us home; the Island, its beauty and its people drew us in.  My parents ended up buying a summer cottage there.  The Vineyard became central to our life stories.  

When Chicki returned to our nest, she worked to save money so she could rent her own nearby apartment. The morning she left, I was twelve.  She found me kneeling at the foot of my bed in front of an altar I had assembled; there were the doll Chicki brought me from Amish country, a flickering candle, and my Sunday school bible, open to the 100^th psalm. Prayed earnestly, I knew that our closely woven friendship was about to change forever.  Later, she told me she cried all the way to her apartment because the last thing I asked her was, “How can you leave me this way?”

We entered a new phase of our relationship as marriage and motherhood took more and more of her time and school took mine.  Chicki’s life underwent a shift with the birth of her daughter, a divorce, a remarriage, and another new baby.  In the midst of all that, she recognized that my home life had grown untenable.  She urged me to escape my parents and come live with her. I chose to stay the course for a short time, but then moved to live in solititude in my family’s Island cottage.

  Life proved to be generous with me.  I met a Vineyard man who made me imagine a future brighter and better, simply because I was in it.  As our relationship became committed, we exchanged visits with Chicki and her growing family. I loved watching the kindness her girls would show their mother even when there were disputes.  They would never yell from another room.  They would run back, plant their feet in front of their mother and make sure she could read their lips when they shouted, “No, I WON’T!”

Chicki’s husband hailed from Texas. His native family pulled his new family pulled west and into a world apart from us. Chicki and I wrote letters but the phone was always a challenge with her hearing.  One day, she called me unexpectedly, shouting with her pitch a bit off, “Dawn, I came out of a building today and I dove for the ground.” “What do you mean?”  “I have new hearing aids and a plane flew directly overhead.  It was the first time I ever heard a plane!!”  My eyes welled up. “That,” I thought, “That is Chicki.”

As the years passed, we each became more mired in our lives, children, and jobs.  My mother, who now lived on Martha’s Vineyard, became a conduit of news and updates because she and Chicki wrote weekly postcards to each other.  When the time came to call hospice for my mother, I called Chicki.  I heard her voice and broke.  I cried and hiccouped and she couldn’t understand a thing I said.  Slowly, slowly, I pulled myself together so she could understand the sad news I was sharing with her. My mother held Chicki closely under her wing right until her death; she sent Chicki the last postcard from the hospital.  

            Eighteen months later, it was Chicki’s daughter, Rachel, contacting me.  She and her sister knew I would want to know their mother was in the ICU.  The girls –now women, were sweet to send me daily updates.  They called me shortly after Chicki died.  They were sitting outside the hospital in their car feeling numb and full of disbelief that they were going home without their mother.  We managed to laugh through our tears as we talked about their mother.  We plotted to commingle Chicki’s ashes with my mother’s on Martha’s Vineyard. We all agreed that there was a symmetry to that closure. 

            Chicki’s love for me was a gift of immeasurable value; it had its own breadth and width and depth. She filled in the edges of my life, fortifying, teaching and always, always believing in my worth. She lived her life by loving, giving herself to others without condition, and looking for humor wherever she could find it. The peculiar lilt that her speech had as a result of her hearing impediment branded her love for me.   Her “I love you’s” , with their unique intonation were unique and irreproducible.  As unique and irreproducible as she was to me.     

I Can Not Be Thrown Away

      On the day before my discharge from Spaulding Rehabilitation Hospital, a clergyman came to call on me.  I recalled

agreeing to his visit three weeks earlier, when I was first

admitted.  Now, after a particular arduous stay, it seemed, well, irrelevant.  I had found my way without the particular religious salves he might offer: I was fine.  However, I did not banish him from my bedside.  We chatted about the fine work of the Rabbi who had called upon me when my first hip was replaced and I was rehabilitated at Spaulding.  The clergyman explained he was a Baptist, that

he and the Rabbi and the priest who served the hospital had a deep appreciation for each others’ work.  The message that God is present and moving in our lives, even in our darkest hours, is non-denominational.  It was a brief visit, and I felt I had weathered it politely without revealing some of the profound questions that have surfaced in my life recently.

As he was leaving, I saw how tightly the minister was clutching his clipboard – I thought he was clutching the list of faith-seeking patients he might locate by room number.  Instead, he pulled out a sheet from all of the others.  As he did so, he said, “I find we have a lot to learn from each others’ religions.  The Rabbi came to my church to address my parishioners last year.  I would like to leave you with a few words written by a Catholic Cardinal.  Please, when you have a moment, read this over and see if they mean something to you.” I folded the page in thirds and placed it on my blanket before shaking his hand goodbye.  

      As the minster was leaving the room, he paused to talk to my roommate.  The “privacy” curtain was half drawn between our beds; neither of them could see me. Without much thought, I reached for the paper on my bed and unfolded it.  My first thought was that the page-long prayer he left me was like an overly-adorned woman.  The ornate, ritualistic language typical of Catholicism almost managed to obscure the simple, beautiful and powerful message therein. I had no forewarning of my reaction. When I read Cardinal Newman’s prayer and translated it into a language I use myself in praying to God, something broke inside of me. I wept. I tried to do so silently.  I simply couldn’t imagine what was happening. With no Kleenex at hand, I buried my face in my blankets. I tried to restrain the shudders of grief and relief that passed through me. The whole time, I kept my face turned toward the window while I struggled to regain my composure. The message that I am not disposable and that I have a role to play was a powerful one at this time in my life.  I know that I must thank John Henry Cardinal Newman for starting this particular conversation with God.

I am created to reflect God’s glory. The design for me is to serve mankind in a way that is uniquely suited to me and my God-given gifts.  This is my life’s work.  I am uniquely created to do something or to be someone to serve others. My place in the world is one no one else can serve; whether I am rich or poor, despised, or esteemed by others, God knows my heart. I may not understand the role I serve. I listen to the quiet, inner voice that guides me and speak my truth, I can be certain that I am playing my part in God’s world. I am a link in a chain, a bond of connection between others.

I will trust God.  Whatever, wherever I am,

        I can never be thrown away.

God is with me. If I am in sickness, my sickness may serve Him: in confusion, my confusion may serve Him; if I am in sorrow, my sorrow may serve Him. My sickness, confusion, or sorrow may be stopping points on the path toward an end I can not imagine, but is part of God’s plan. God may prolong my life or shorten my life. He may take away my friends, throw me into unfamiliar circumstances, or leave my future clouded and uncertain. I may feel abandoned, desolate and alone.  Yet, despite these heart-wrenching trials, I hold fast to my faith in God’s presence in my life.

No matter my purpose or my work, I will trust in God, who affords all goodness, love, life and light. 

~John Henry Cardinal Newman as paraphrased by Dawn Elise Evans

The Secret

If what we read feeds our thoughts, it is pretty clear what I have been thinking lately.  I have books strewn about the house.  In a whirlwind blast to tidy up the house this morning, I gathered up some of the books I am reading currently.  When I saw the stack, I laughed out loud.  The pattern that emerged was pretty clear.  
One Day My Soul Just Opened Up  by Iyanda Vanzant
Mind Power into the 21st Century by John Kehoe
The Healing Power of Mind  Simple mediation Exercises for Health Well-Being and Enlightenment
              Tulku Thondup
The books have been dropped in the bathtub (where I often fall asleep reading them), highlighted and their pages dog-earred and torn.  These book have been well-worn and well-loved.

In a few days, I am going into the hospital for my second hip replacement in three months.  I have been working hard to harness the infinite power of my mind to bring about the best outcome.  For that reason, I must have pulled these books off my library shelf at different points of times.  These books are instruction manuals for enlightened thought; using different words, describing varied examples, their messages are all the same.
You are GREAT. You can do this!
I encourage anyone who is trying to find their way through a physically, emotionally or spiritually challenging period in their lives to seek out and read any one of these books. I will tell you honestly, however, that it's not about the books you read.  What I have discovered is that it is about the willingness to ask the questions.  The answers you seek will not be found in a single book nor in a single teacher.  If you are determined to find an answer and are willing to ask for help,  you will ultimately find the answer within yourself.  Just ask Dorothy ~ you don't even need ruby slippers.   The  answer  may not be the answer you want, nor even the one you imagined, but the answer is already within your reach.  So, that's The Secret.  Picture my hand cupped and curled as I lean close to you and quietly whisper,        "Pass it on..."

Living with Grief

May was Ehler’s-Danlos Awareness Month

For me, every month is Ehler’s-Danlos Month.  Living with Ehler’s-Danlos Syndrome*, I mourn daily.  I mourn the future I had envisioned before I had major medical issues.  I mourn the freedom to live each day without physical pain.  I mourn the many things I can no longer do.  I mourn the freedom to choose my activities without limitations imposed upon me due to issues of health. 

I believe that it was 1976 when I met Elizabeth Kübler-Ross at a seminar conducted for the newly- formed hospice agency on Martha’s Vineyard.  She introduced us to the idea that there were five stages of grief.  Originally, these stages applied to people facing terminal illnesses.  However, she realized that grief is laid bare whenever there is a catastrophic personal loss. This may also include significant life events such as the death of a loved one, divorce and the onset of a disease or chronic illness.

From Elizabeth Kubler Ross,The Five Stages of Grief

1. Denial — "I feel fine."; "This can't be happening, not to me."
   Denial is usually only a temporary defense for the personal. This feeling is generally replaced with heightened awareness of the  possessions and  the people that will be left behind.
2. Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame for this happening to me?"
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy toward others.
3. Bargaining — "Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
   The third stage involves the hope that the individual can somehow postpone or delay the loss. Usually, the negotiation for an extension is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand loss in inevitable, but if I could just have more time as it was..."
4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "My life, as I knew it is over, so why go on?"
   During the fourth stage, the person begins to understand the certainty of loss. Because of this, the individual may become silent, refuse visits from friends and spend much of the time crying and grieving. This process allows the person to disconnect from things that offer love and affection.  It  is an important time for grieving; these feelings must be processed.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
   In this last stage, the individual begins to come to terms with the impending loss or death.  They find peace.

Each new day presents me with an opportunity to move closer to Acceptance.  The funny thing is that, just when I am confident that I am at peace with my life and my diagnosis, I

rebel.  I plant the geraniums, paint the trim, go out to dinner.  The next day, I find myself in bed angry at myself and bargaining with the Powers that Be. I resent the price I pay for the simple pleasures of daily living.  It’s all up to me, however.   When I successfully break this cycle, I know I will be closer to achieving a state of grace. 

Go to www.ednf.org/  or you can watch http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html

to learn more about Ehler’s-Danlos Syndrome.. 

The Cottage on the Vineyard

The first time I remember being in the Cottage was 1963.  The Johnsruds stayed there and my sister and I stayed with our parents down the street in the pink house behind the Wesley House.  That was the summer my Mom cut her foot so badly on the beach.  My sister and I were enchanted with the floor grates in our second floor bedroom -- they afforded us the ability to eavesdrop on the adults downstairs.

Mary K. guarded the Cottage with all of the possessiveness of a mother lion protecting her cubs.  The Johnsruds were careful to observe all of her rules and the Campground’s regulations.  Of issue was how to enjoy alcohol on the porch.  Cousin D and I were excited to be allowed an overnight in the room that later became my bedroom.  For lighting effects, he draped a cloth over the lampshade and nearly started a fire.  That was the summer of “The Cousin’s Photo” – the five of us lined up in Martha’s Vineyard sweatshirts. It is an enduring icon of our family history.

The Cottage became my lynchpin: while our family moved, uprooted and began again, to meet my Dad’s career moves, the Cottage was home.  When life in Rhode Island became overridden with conflict at home in April, 1976,  I escaped to the Cottage. I was seventeen. It was no coincidence that I married an Islander.  Six weeks after our first child, H, was born, I took her to the Cottage to begin to earn her status as a ”sort-of Island girl”.  Our daughter, K,was captivated by a place where her creative expression was rewarded; she won first place in the All-Island Art Show in the Children's Division.  C, my third baby was tagged our Beach Baby Beach Bum after spending day after day under an umbrella at the Beach Club.   
As our family contemplates plans for my father's long term medical care, the piece of the equation that is difficult to resolve is the future of The Cottage.  It is his asset, it is my heritage.  The Cottage and the Island represent family, home and tradition to me.  In the days ahead, I will do what I can to preserve it....for my parents, for my children and for their children.