Wednesday, September 10, 2014

"Loving life ... One Mile at a Time"

I received a friend request from Ken An Nell on Facebook. We have several friends in common. I accepted the friend request and was then invited to like the page, "Blue Diamond Athletic Displays, Inc.", a small business. I visited their website. Coincidentally, Tom and I have decided it's time to clean out the clutter and redecorate our beautiful home, allowing energy and sunlight to flow; creating a space where we can celebrate and commemorate our 37 years of being together and our 36 years of marriage.

We've had to weather many storms in our relationship but perhaps the biggest challenge was when I was diagnosed with post polio syndrome, a progressive neuromuscular disease in December of 2006. The symptoms had been coming on for awhile. I soldiered on pushing myself into a state of adrenal overload until I knew something had to be done. Spaulding Rehab's International Center for Polio and Post Polio Syndrome was there for me to provide therapy and support but the future looked grim. I had to quit my full time job in order to have any hope of staving off the progression of the disease and stabilizing the symptoms. I could no longer do it all. At the suggestion of my therapists, we used PeaPod grocery service, I got a handicapped placard, used a straw to drink liquids and ate a modified soft diet. I went back into a leg brace and used a cane; for longer distances, I used a wheelchair. We were told to adapt our Cape house or find a new house all on one floor. And I planned my exit strategy from my award winning career as a VA social worker.

But all was far from lost and in the cold dark days of February 2007, I wrote a poem:

Running the Race
Early summer 1959 my kindergarten year
Everyone around me filled with nervous fear
Despite the Salk vaccine hope polio would disappear
The polio virus crept right up and knocked me in the rear.

Dancing all around the gym feeling free just like a bird
I dropped to the ground just like a stone
and no one said a word.
The pain it was so searing-the diagnosis even worse

"It's polio" the doctor said...he was abrupt and terse.
Called one of the 'lucky ones' I had a 'mild case'
But with the other athletes I could never keep their pace.
Miss Holly physical therapist,
curly hair and a warm, broad smile
It tempered the pain of being apart - to walk I'd take awhile.

I always wore those 'special' shoes
the kids they poked and teased
With no support and much abuse
with childhood I wasn't pleased.
But put nose to the grindstone and learned all that I could
I couldn't kick a ball but my grades were always good.

Years went by and no more thought to polio did I give
I accepted the limp and everything else
and decided my life I would live.
But symptoms of weakness and muscle pain did grow
I kept a stoic face hoping no one else would know.

Life no longer was my own I struggled through each day
Suffered in silence, isolated from friends-
trying to keep depression at bay.
And with the grace of glorious God my world it opened wide
I discovered there was a Post Polio team
and they were on my side.

Using wheelchair to travel, set limits on what I could do,
Resulted in joy to realize I could live life anew.
Celebrated my body- creaks, groans and need for a brace
While in my mind I focused on winning a 10K race.
Sought out paths for healing and my spirit flew free
For the first time in life, I could truly be me.

The chains are gone and possibilities abound
I'm a tree with my roots planted firmly in ground.
I'm now off the sidelines, no need to sit and whine
So much gratitude fills my heart and love and beauty shine.
After all these years I can join the loving human race
I exceed all expectations and now I set the pace.

And run a race - I sure did! Many races and have some wonderful bling to show for it.

As I said to Nell in my testimonial about Blue Diamond Athletics, Inc. Running races, especially marathons, for anyone is no easy feat but for me, as a survivor of paralytic polio, it was a challenge of a lifetime. I was transformed from one who thought of herself as disabled and unable to participate in athletic feats to a champion. It was a moment of redemption and now, thanks to Blue Diamond Athletic Displays, we have a special place in our home where I am reminded of my strength, courage and fortitude and can remember the joy of that special day. Both my husband and I are later life runners. What a joy to be reminded of the gift of running and our accomplishments in our living room, with such a magnificent piece of work with the Blue Diamond Athletic Medal Display.

The photo of Johnny Kelley the elder is a gift from his nephew Tom who we just happened to meet coming home from Puerto Rico in January of 2009. We had to get a break from training in the bitter cold and my daughter happened to have the seat between Tom and his wife Dorothy. She was bemoaning the fact we had an 18 miler to do the next day. Little did she know who she was talking to as she talked about our road to the Boston Marathon. We exchanged addresses when we landed and they told us that Johnny would be watching over us on Heartbreak Hill on a note along with this limited edition photo. He sure was.

I believe his Spirit continues to bless our journey as we prepare to run forever as Bill Rodgers likes to say to me. As we sit in our living room to read, meditate, chat with each other, our medal display celebrates and commemorates of how we have journeyed well and continue to journey well in the marathon of our life. There is joy in the running, in the spectating and volunteering. Our treasured memories are now in one place central to our home. And we have a wonderful reminder to love mile at a time.

"Wait, I have one more goal," Mary McManus told her personal trainer in February of 2008 shortly after coming out of her toe up leg brace. "I want to run the Boston Marathon for Spaulding Rehab Hospital." Mary traded in her polio shoes for running shoes and embarked on the journey of a lifetime. Mary McManus was at the height of her career as a VA social worker when she was told by her team at Spaulding Rehabilitation Hospital’s International Rehab Center for Polio in December of 2006 that she needed to quit her job if she had any hope of preventing the progression of post polio syndrome, a progressive neuromuscular disease. In “Coming Home: A Memoir of Healing, Hope and Possibility” Mary takes you on her seven year healing odyssey as a survivor of paralytic polio and trauma from her diagnosis, to taking a leap of faith to leave her award winning career at the VA to heal her life and follow her passion as a poet and writer. You’ll experience her trials, tribulations and triumphs as she trains for and crosses the finish line of the 2009 Boston Marathon and discovers the opportunity for healing in the wake of new trauma: the suicide of her nephew in 2011, and the aftermath of the 2013 Boston Marathon bombings. This is Mary's journey of coming home to her human form free from the influences of the ghastly ghostly invaders who had invaded her sacred earthly home. Her memoir includes journals and blog posts from her seven year healing odyssey. This is her journey of transformation and her message of healing, hope and possibility.

I donate 50% of royalty payments through on line sales at Amazon to The One Fund to help Boston Marathon survivors and their families. Copies are also available at Brookline Marathon Sports. $5 of each book sold at Marathon Sports is donated to The One Fund.

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