Friday, December 6, 2013

Oh There's No Place Like Home for the Holidays!

It's a wonderful time of year to welcome family and friends into our homes to celebrate the season of love, light and joy. This holiday season is incredibly special for me. Our daughter returns home after completing her bachelor's degree in Tennessee. My husband begins a wonderful new job that is going to allow him to continue attending Spaulding Aquatics Therapy classes with me. It is going to help us spend quality time together in our beautiful home and life that we have built for the past 35 years.

I turn 60 on December 25th.

I have finally come home to my body and to my life.

Here is an excerpt from my memoir, "Coming Home: A Memoir of Healing, Hope and Possibility" that I am feverishly editing to get ready for you:


I left home at the age of 5 – my earthly home that is. I contracted childhood paralytic polio. Polio was the AIDS of its day. If you contracted polio, you were shunned. There was a fear of contagion. Fear breeds ignorance that is far more devastating that any disease. Three years later my father fell into alcoholism and I was raped and beaten, threatened with death and tortured by my father for 9 years until he ended his life. My maternal grandmother physically, sexually and emotionally abused me with cruel rituals that tortured my body and my mind. My mother was addicted to prescription pain medication. My older brother was numb and trying to survive the chaotic household as best he could. He chose to align himself with the aggressors. I learned early on how to dissociate and to harness the power of my intellect to survive but I paid a steep price for leaving home and disowning my body. I bided my time until it was time to heal.

The changes were subtle beginning in 1996. I tired easily. I couldn’t walk as far or as well as I once had. During my annual physical I would mention these vague complaints and every year all of my lab tests and EKG were normal. My primary care provider suggested that I needed to do more exercise. In the summer of 2004, the symptoms had gone from subtle to screaming at me to pay attention to my long neglected body. During the Democratic National Convention at the TD Bank Garden, a few blocks from the VA Causeway Street Clinic where I worked, we were temporarily relocated to the Jamaica Plain Campus of the Boston VA Healthcare System for security reasons. Because many of my patients cancelled their appointments rather than making the trip out to the Jamaica Plain Campus, I had more time on my hands than usual during the day. I realized what was happening in my body.

I was having difficulty swallowing and breathing. It was a struggle for me to get out of bed each morning but I knew I needed to soldier on for the sake of my patients, for my sake and the sake of our family or so I thought at the time. I experienced numbness and tingling on my face and down my right arm. My body ached and my muscles burned. I felt a constant lump in my throat. I felt a sense of impending doom but then I would go on to see my next patient. It was as though I was leading a double life harboring and hiding these symptoms while trying to maintain my functioning as a social worker, mother and wife. I was an expert at leading a double life since I was 8 years old. I decided it was time to let my doctor know what was happening to me.

Seven years ago - it seems like a lifetime since I sat in the outpatient clinic at Spaulding Rehab's International Center for Polio and Post Polio Syndrome and in many ways it was...

And this holiday season I am so blessed and grateful that I have found my way home.

Learning to Dance from A Celebration of Life now available on Amazon

It’s never too late
you’re never too old
to learn to dance
paralyzed from polio
paralyzed with fear
frozen in time

awkward and unsure
shame and confusion
I fell into the trap of ego
my leg snared in the jaws of agony and defeat

saved by grace
my rescuer nursed my wounds
tentative steps
stiff and clumsy
painstaking movement
fueled by thoughts of days gone by
the match is lit
no match for darkness
the music of my heart’s desire
moved me to try once again
step by step
the dance of my life
the way I was always meant to dance

yes wrinkles mark the passage of time
I burn brightly

until my dance is done.

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