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Tony’s Story

Prologue From Tony’s book On Both Side’s of the Fence

I think sometimes about images of different moments in time. Times when I wondered how someone could live with his or her particular “minor inconvenience.”

The visions of the young mentally impaired boy on the corner of Bay Parkway and 86th Street in Brooklyn, playing his guitar when I was nine years old. Followed by visions of the Vietnam vet who survived being shot in the leg, or a policeman who had to instantly choose between pulling his trigger or being shot himself.

Each image was a lesson in courage; a courage that reached well beyond what meets the eye. Measuring the level of my own courage was not a lesson that I sought to experience; however, when the time came for me to face my own struggle, these were the images or impressions that somehow left a lasting mark.

My own journey was not present from childbirth in a way that forced me to make do with what God gave me, nor was it was a sudden shock that cut my legs out from under me.

My “minor inconvenience” took its time to overwhelm me, like a bad seed planted inside my body. It was as though the lights were being turned off inside of me, or a fuse had shorted out and was unable to be replaced. I began sensing only parts of myself responding. It was as if the electricity could reach only certain rooms in a house once filled with shining light. I was experiencing darkness within myself that no one could explain.

In my mind, I could not see myself as impaired. I had been a runner capable of traveling any distance on my own. I ran varsity cross-country at Nazareth High School in Brooklyn, always pressuring myself to be the fastest…to be the first. Now, although only in my 20s, my body was no longer able to meet my mind’s expectations. As you might expect, I went through a myriad of reactions.

My family was afraid to witness changes in what had been, up to now a “normal life.”  Alterations in health were topics suited to a movie of the week or to newspaper articles about someone else. Disease was an entity that we read or heard about. Not an actual experience. Not for me.

I would have told you that MS is something that could have happened to anyone but me. I was the athletic type. I received the Most Improved Runner award for the 1968 Cross Country season. It certainly was not possible that I should face a future in which I was unable to run.

How could I be susceptible to a future stolen by a disease of the central nervous system? Never! That certainly was not for me! My only awareness of “nerves” to that point in time was during the periods of concern when money was tight, or when I prayed with nervous anxiety that our children would make a healthy entrance into this world.“Nerves” meant worry, such
as when a loved one was ill and there was little anyone could do but pray.

“Nerves” were not physical, I thought; just an emotional reaction to the pressures of living…coping with the struggle of making ends meet. I refused to succumb to the possibility that my nervous system had failed.

Anger filled my thoughts as, little by little, my body could not meet my expectations. The day-to-day commands taught since birth (walk, run, sit, stand) suddenly required an effort, where they had once been coordinated into a finely tuned machine. G-O-N-E. Why?

I needed to blame someone, anyone; and this need to hold someone accountable required me to focus on the deepest levels of trust and faith. I had a lack of trust in the medical profession, specifically, in the ability of anyone to help me. I argued deep within myself well into the night, many nights, desperately trying to make peace where war had been declared inside. I traveled in and out of periods when the worst seemed to pass, only to return to the same exact point as before.

I found myself:

IN AND OUT of hospitals where doctors offered partial solutions to problems they could not possibly understand from my perspective.

IN AND OUT of emotional tirades that screamed for life to go back to the way it was.

IN AND OUT of bitter turmoil; lashing out at anyone who was able to do what I had once been able to do.

Simple tasks became more and more monumental. I had to come to terms with a realization that the journey toward acceptance would never be completely achieved. The desire deep within me, which I wanted to realize, was to run as far away from myself as I could possibly get. The harsh lesson I eventually learned is that no one can run away from himself.

Making time your friend is a tedious task. My life had been filled with one reality “…the one who reaches the finish line in the least time wins the gold medal.” I embarked on a journey inside myself to recognize the real victories outside. I attempted to find answers, not from experts, not from family members, not from formulas for survival, but from an inspiration within my soul to take a deep breath and stay in the race.

You can find Tony’s book with more information and Inspiring stories Here..

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