31 May, 2011

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 K├╝bler-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. 


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

19 May, 2011

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.