Monday, July 29, 2019

Hope is a Four Letter Word - And so is Love!

One of the things I kept hearing after receiving the diagnosis of Post-Polio Syndrome was "we don't want to give you false hope."

False hope? Is there really such a thing?

In the medical community there is such a thing as false hope and hope to many in Western Medicine is a four letter word.

I could have easily succumbed to the diagnosis and prognosis I was given in December of 2006 but somehow I was able to muster the courage to do what I'd done ever since I was 5 years old and open myself to Divine Guidance and a touch of grace.

I could barely walk up and down the stairs in my house. I had difficulty with breathing and swallowing. I experienced chronic pain and fatigue. I was told to prepare to spend the rest of my life in a wheelchair, to use energy conversation techniques whenever possible, that I should get a sleep apnea machine and might need a feeding tube in the future because the left side of my esophagus was very weak and causing me to aspirate food into my lungs. I was told there was no hope except to quit my award winning VA social work career and try to stabilize the symptoms where they were although it was likely the disease would progress even if I did quit my job. I was told that if I used it I would lose it.

I realized I was at a crossroads in my life. I did take the advice to leave my career because the stress was taking a toll on me. I experienced caregiver burnout in a most dramatic fashion.

I got still and asked for Divine Guidance and discovered hope through the power of my pen; what became my Divining Rod for healing. In that first poem, 'Running the Race', I accepted what was happening to me with grace and gratitude while looking to the future in my mind's eye. From "Coming Home: A Memoir of Healing, Hope and Possibility" (the first book in my Trilogy of Transformation):

And then I felt a stirring in my second chakra (only then I didn’t know it was my second chakra – I thought it might have been something I ate). I went over to my laptop in the corner of the living room and I wrote this 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.

I sobbed to write those words. I had never spoken about polio or the abuse I endured. I became curious. Why am I writing about winning a 10K race?

It was as though a spigot was turned on in my soul as poems poured out of me overflowing with messages of healing, hope and possibility. The poems helped to heal my past, create beauty moments in the present and create a future very different from the ones the medical profession predicted for me. That first poem foreshadowed my 2009 Boston Marathon run.

After a serious knee injury in December of 2014, I briefly returned to the medical community for a diagnosis to find out what I needed to heal.

The MRI showed a knee that would require a total knee replacement in a few years. I was told to stop running which they knew I wouldn't do so they told me to cap my distance. As we went through the results of the MRI, the physiatrist said in a most off handed manner, "Well your gastroc muscle on your left leg is atrophied. That's no surprise. It's been that way for years I'm sure as a result of the polio. There is nothing you can do about that." And, even after all I healed through the mind/body connection and visualization along with working with a personal trainer, he urged me to return to the Post Polio Clinic for a re-evaluation because it was only a matter of time before the disease progressed! Dr. Joe Dispenza calls this the voodoo curse. Doctors words can be very powerful for the unsuspecting patient and often times what they predict comes true. There was a case of a person who was told he had cancer and was given 6 months to live. Sure enough at the end of 6 months he died however, on autopsy, it was discovered he did not have cancer!

I was led to Ryan J. Means, DC, an earth angel chiropractor who gave me hope along with chiropractic treatments, KT taping and a new strength training regimen that I still use and build on today! He infused every treatment and conversation we had with hope and encouragement for me to get back to the sport I loved and that is my therapy.

He asked the question, "Why set limits?" and I went on to run 3 Consecutive Bermuda Half Marathons.

He gave me exercises to grow a new gastroc muscle used in conjunction with taping the gastroc muscle to stimulate its regeneration!

We used the concept of mirror neurons to encourage the development of new neuromuscular pathways to my left gastroc muscle. When once I relied on the right leg to encourage my left leg to be able to do a calf lift, I can now do separate calf lifts and feel my left gastroc muscle getting stronger and stronger over time. I graduated to doing the calf lifts on a theraband stabilizer to make the exercise more challenging.

As I was healing my life, I reached out to the Post-Polio Support Groups to be a guest speaker and inspire others with what is possible. Group leaders politely turned down my offer saying that they didn't want to offer false hope to group members. When I was doing research for my memoir, I came across this incredible piece from the wonderful physiatrist who cared for me as I recovered from polio and is included in "The Adventures of Runnergirl 1953" the third book in my Trilogy of Transformation:
Caution and Hope On Polio 'Signs'
Published: March 3, 1985
I read with interest the article entitled ''A Group for Polio Survivors Who Have New Symptoms'' (Feb. 10).

Having supervised the rehabilitation of poliomyelitis patients at Grasslands Hospital during the epidemics of the 50's and 60's, probably including the ''then'' infants mentioned in the article, I would like to add a word of caution and even hope as an afterthought.
Firstly, there is no reason to suspect deterioration in the nerve cells in the spinal cord. After 30 years, one must accept some loss of endurance, increased fatigue and even some discomfort induced by other unrelated medical problems. This is true in the athlete with repeated injuries, in the obese person with back problems and even in the jogger with foot ailments.

Any individual with paralytic disability in an extremity will experience the normal process of ''wear and tear'' except that it may be more difficult to adjust to it. Just as one learned to compensate for the initial impairment so must one adjust to the later, more subtle changes rather than develop an emotional hang up of being a ''polio victim.'' ~EUGENE MOSKOWITZ, M.D. Mount Vernon

This is how the Westchester Post-Polio Group responded:
The Westchester Post-Polio Group is grateful to Dr. Eugene Moskowitz (Letters to the Editor, March 3) for providing the public with a concrete demonstration of the negative and patronizing attitude many of us encountered from physicians. If Dr. Moskowitz finds ''no reason to suspect deterioration in the nerve cells in the spinal cords,'' we suggest that he read ''Proceedings From the First Annual Symposium on the Late Effects of Poliomyelitis,'' in which highly respected members of his own profession advance excellent medical arguments and research reports in support of exactly that theory.

I understand that there are many who have a difficult time embracing my message of healing, hope and possibility. And that's okay ... I wish them well.

But I know from emails and messages I receive that there are many who are hungering for hope and have embraced my message to inspire their journeys.

Hope IS a four letter word and so is Love.

Love is a Four Letter Word from "Feel the Heal: An Anthology of Poems to Heal Your Life":

Love is a four letter word
I swear by its healing power
as it pulses and courses through the river of my veins
watering everything in its wake
the garden of my soul.

Love is a four letter word
I bear witness
bare my soul
a breath of fresh air when love
enters a room
love ignites
purges the past
forges the present
a force to be reckoned with

Truth is
I am love
only love
pure and innocent
from Love

Love is a four letter word
the bridge
heaven on earth
all the elements I need to heal
living life as only I can
grateful to be a love.

To your health and wellness
From my heart to yours

Be sure to visit my website at

Hear my interview with Kendra Petrone on Magic 106.7's Exceptional Women Show by following this link

My books are available on Amazon and "Feel the Heal" and "The Adventures of Runnergirl 1953" are available in Natick Center Cultural District at Paula Romero Dunbar's Celebration Boutique Paper Fiesta coincidentally located on Mile 10 of the Boston Marathon Route. Proceeds from the sale of books for July are being donated to The Joseph Middlemiss Big Heart Foundation to support Tom's Falmouth Road Race. You can also donate directly by following this link.

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