"Listen to your life.
See it for the fathomless mystery that it is....
Touch, taste, smell your way to the holy and hidden heart
of it because in the last analysis all moments are key moments, and life itself is grace."
Frederick Buechner
Lately I have been practicing the art of remembering.
It has proven to be laden with unexpected gifts.
Out of the blue I was recently flooded with the light of a person I met in junior high school,
Judy Hardy, amazing that I can recall her name all these years later.
It suddenly occurred to me
that when I raised my hand to offer what I thought for many years
was an act of compassion on my part,
was a generous gift from Judy, that would surface years later
to grace my life when I needed it most.
Judy was part of a new state regulation
that allowed severely disabled students to attend a few classes a week at a regular school.
I sat in a class surrounded by my peers as our teacher asked
if any one would volunteer to walk a handicapped student to their next class;
before the bell and inevitable rambunctious crowds.
The room was abnormally still, filled with an impossible void.
I raised my hand.
No one knew what to expect when Judy arrived the next day,
walking on her toes in huge awkward jerking movements, somehow smiling radiantly.
Judy had cerebral palsy.
Her speech was severely effected, her gait wild and spastic,
she drooled, wore a bib,
and in spite of all this,
was thrilled at the prospect of joining our English literature class.
That girl found a place in all our hearts,
fighting against flailing arms to get her hand up to answer a question,
the painful time it took to cut words from her brilliant mind
and offer them against gravity to the startled air.
She was really something.
Bold courage in spite of the body she was forced to dwell in,
pure grace.
I got to know her more on our solo walks between classes.
She was seriously bright, optimistic, with an amazing out look on life.
The next year I moved on to high school and lost track of Judy.
She would unexpectedly return in my dreams or passing thoughts
and I would stop in my carefree active life from time to time
to wonder what became of her.
I was an adult when the effects of Pompe began to rear its ugly head.
While I accept my fate
and spend much of my life dedicated to a brighter future for those with rare diseases,
I find myself …
waiting and allowing others to walk before me,
subtly disguising my awkward gait under the guise of politeness.
as my difficulties became more pronounced
I began letting go of many enjoyable activities,
preferring not to face the awkwardness of loss.
I know.
I travel, I speak in front of large audiences
and openly share my story
but when faced with family gatherings
I choose to read a book in the shade of shame
rather then enter the pool where everyone is enjoying their
gloriously healthy bodies.
I choose to keep my disabilities fully clothed,
try desperately to remain unnoticed in a crowd.
I am fiercely positive and proactive yet
I have fallen so miserably short when facing my own physical losses.
Common sense and my husband have been tapping me on the shoulder
for years to begin aqua therapy
but the fear of being seen, exposed in a mere bathing suit and
the embarrassment of things gone awry has been insurmountable.
I have avoided what has been in my best interest
out of embarrassment until the fear of losing my balance became larger than my shame.
Finally I picked up the phone and committed to an interview with a physical therapist.
I walked through the gym
and I was immediately surrounded with people confronting their disabilities
working on a positive future.
It’s been two months since I placed my clothes
and my inhibitions in a cubbie and entered the pool.
That one leap of courage has changed me in ways I had never imagined.
I descended the stairs into the warm water and began in earnest
with my physical therapist guiding me through a program designed to strengthen even my weakest muscles.
I knew I would work in earnest to perfect each exercise,
to make each and every repetition count, I knew my muscles would respond,
improvements would be made.
What I did not realize was how it would also exercise my ability
to move beyond inner obstacles.
Being buoyant in the water gives me back a memory of life before the destruction of Pompes.
I float weightlessly happy, move unencumbered, I jump up and down and run,
seriously I can RUN in the water!!!!!
I execute each exercise with balance and grace.
Relieved from gravity I am whole and capable again.
I have not felt such utter freedom in my physical body in countless years!
Finally entering the water has interrupted a decade of clumsy heaviness,
where every movement is wrought with struggle,
simply standing up from a chair, a marathon effort.
I have been brought back to a carefree experience of being in the world.
Every time I return to the pool I am lifted from the enormity of my cumbersome body
and set free again.
My orientation of the world and living has been transformed.
Who knew this kind of remembering could change your life?
One day after beginning aqua therapy
I was driving to work and a favorite song came on the radio.
I turned it up, and suddenly
I was one of those carefree people you see in a passing car
singing loudly with wild abandon.
I realized it had been a long time since I had such a spontaneous moment of easy joy.
And suddenly Judy flooded my memory.
She was smiling and radiant, forever whispering
“Step outside your limitations, don't let fear stop you from following your passion,
open the door, life is waiting for you!”
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