Nowadays,
they don’t tell stories anymore. Stories about ordinary people struggling to
overcome are rare. These stories do not excite much. They can’t compare with
the celluloid stories on the big screen. Nowadays, it is all about the Marvel Comics heroes coming to life. The fantastic Super-Capers saving the world.
Drawn characters airbrush into our consciousness. Birdman that flies. Iron man
that suits up and fires from the heart. Hawk girl with verve and great altitude.
Super boy with an ill-begotten past and steely might. And the money at the movie
box-office keeps churning as its story-weavers and producers get richer by the
second.
But the
reality we live in differs so much from these modern day urban mythologies. What
materializes in our dreams and comes alive on the big screen is far remove from
what each of us experience everyday. Let me share with you two tales of
ordinary people struggling to overcome adversity. You can’t find any cape-crusaders
with exceptional human powers in these two tales. They are no doubt true
accounts as told but don’t expect their retelling to kick you off your sock or
allow you to drool in wonders.
The first
tale is about a boy named Thomas. You
can find his story in the book “The
scalpel and the soul” by Harvard neurosurgeon Allan J Hamilton MD. Thomas’
story is a tragic one. He met with an accident that changed his young little
life forever. On that fateful day, he was playing with his friends when he
climbed up a high tension line to enjoy the city from an elevated, perched view.
However, he
lost his balance and fell and his shirt got caught in one of the high voltage
towers. He was dangling in mid-air as he struggled to grab the power line. The
moment he touched the power line, thousands of volts scorched his tiny body.
Thomas shook convulsively and his clothes caught fire. From there, he fell 100
feet down like a flaming meteorite.
When the
firefighters came, Thomas was burnt beyond recognition. Dr Hamilton, the
author, described Thomas this way: “Of
Thomas, there remained little that was not burned. Only the usual small patches
of intact skin remained in the axillae (armpit), groin and folds of certain
joints. It seemed as if every bone had been broken. Nearly all the soft organs
were damaged and bleeding. No one held much hope the boy could survive. Mercy
dictated that dying might have been gentler.”
Thomas’
father couldn’t take the sight of his son’s body and suffered a heart attack.
He died later. As for Thomas, the verdict couldn’t get any grimmer. He was
practically a skinless little 10 year old. He desperately needed new skin to
prevent infection in his bloodstream, which would lead to a terminal, septic
coma. In a cruel twist of the plot, Thomas’ new skin was to be his late
father’s.
Dr Hamilton
and his team then painstakingly slice off the skin of Thomas senior and quilted
it onto Thomas junior. It was literally one skin for another. The skin
harvesting and transplant were heart-wrenching for Dr Hamilton to say the
least. At first, Thomas did not respond well to the operation. He was still in
a critical condition. When all hope seemed to flicker into oblivion, a nurse
banged on Dr Hamilton’s office and stammered, “It’s Thomas…he’s…he’s trying to talk.” Dr Hamilton rushed to
Thomas’ bedside and pulled a tube out of his mouth. Thomas’ first word was, “What happened to my father?”
Dr Hamilton
decided to hide the truth from his patient and said, “Nothing happened to your father, Thomas. He’s fine.” Thomas then
replied that he saw his father. His father was just standing at the end of the
bed. He even greeted his father and waved at him. It was surely one of those
unexplained, unscientific moments that freaked out the hospital staff - even Dr
Hamilton was speechless. When Thomas was told that his father had died three
days ago, the boy said softly, “That must
be his ghost then that’s waving back at me.” With that observation, Thomas
soon made a stunning recovery from the horrific accident.
This story
tells me that the struggles of humanity to overcome life’s trials cannot be
divorced from the miracle of the unseen. We draw strength from our own hall of
fame’s ordinary heroes and most of them are people dear to us. They are people
who are close to us and inspire us. Their lives – whether dead or alive - give us reason to overcome and to live on
with hope and purpose.
The second
story is found in the book Life in the
Balance written by a renowned physician Dr Thomas B. Graboys. Dr Graboys
had everything going for him in his life. He was a professor of medicine at
Harvard Medical School, a president emeritus of the Lown Cardiovascular
Research Foundation in Brookline, Massachusetts, and a senior physician at
Brigham and Women’s Hospital in Boston. In 1985, he was part of the team of
doctors who won the Nobel Peace Prize for their work with International
Physicians for the Prevention of Nuclear War.
He had a
beautiful and smart wife, Caroline, and two lovely daughters. But I guess you’d
expect what comes next. Dr Graboys was singled out in this second story not
because of his achievements, which were extraordinary by any standard, but
because of the tragedy that befell on him.
At the peak
of his career, Dr Graboys experienced his first loss, his wife Caroline. She
endured, suffered and died of colon cancer in 1998. He was devastated. Although
Dr Graboys remarried in 2002, and his life seemed to be back on track, the next
loss was even more insidious than the first. Dr Graboys was diagnosed with
Parkinson disease.
In his own
words, he described this merciless and faceless robber of the human soul as
such, “While Parkinson’s, which is caused
by a chemical imbalance in the brain, is usually understood to be a disease
characterized by loss of control over body movements, most people afflicted
with the disease also experience difficulties with attention, concentration,
problem-solving, concept formation, sequencing, vision, depression, and memory.
But a significant portion of Parkinson’s patients – and I am one of these –
have an associated degenerative disease, known as Lewy Body disease or Lewy
Body dementia, which seriously impairs cognition and has other powerful side
effects, such as hallucinations and violent REM sleep, that can result in
injury to oneself or one’s sleeping partner. By night, I can suddenly lurch out
of control; by day I feel as though I have an on-off switch that controls my
brain and I am not in control of it.”
Dr Graboys
struggled with everything. He took ten time longer to write a short note. He is
trapped in a body that no longer fully responds to his will. He had double
vision and minor hallucinations. He had to depend on others to bath, wear his
clothes, eat and tie his shoelaces. He suffered from slurred speech and
temporary paralysis. Even simple tasks of carrying a cup of coffee and paying
for it have become a daunting challenge. He expressed his frustration in his
own words: “I am angry over my losses,
angry about the terrible pain and anxiety my illness has introduced into the
lives of my wife and daughters, angry at the loss of much of my sexuality,
angry that my young grandchildren will never know Pops without dementia, angry
that it takes me twenty minutes to change a light bulb, angry that the disease
has ripped apart the fabric of my life, and angry at being dependent.”
Many times,
Dr Graboys thought of ending his life and sparing his loved ones the agony of
caring for someone who would one day treat them as perfect strangers. In fact,
he was not afraid of dying, but he was “afraid
of living with a mind that has been erased.” In the closing of his book, he
had this advice to those who are enduring their own life-threatening illness: “Use your faith in God, if you believe in
God. There were times when Caroline was ill when, for no apparent reason, I
would sit in the non-denomination chapel at the Brigham and Women’s Hospital,
even though I am not religious person. Yet sometimes I would find comfort in
prayer.”
Dr Graboys
passed away recently at 70 years old (Jan
2015). He fought his illness for more than a decade and fought most
valiantly. From a dedicated surgeon who would give his home number to all his
patients, he became a patient struggling to keep what was left of himself as
the disease marched towards a certain fate. In 2012, he wrote these
heart-wrenching words: “Now in the tenth
year of a battle that will continue for as long as I live, I have watched as
huge swaths of my abilities have calved like chunks of ice falling from a
glacier into the sea. My circle of friends has shrunk, the role I used to play
in family life has diminished dramatically, and my medical career is over.
Control over my body is a formidable, ongoing struggle of mind over matter. As
the disease progresses, my sense of myself erodes in parallel and I mourn those
bits and pieces as I would the loss of a loved one.”
Dr Graboys’
life (and demise) leaves no stones of disillusionment unturned for me. Life can
be sheer joy and abject pain amidst living. The struggle of many like Dr
Graboys is often the solitary struggle of one and readers like me only get to
read about it from an arm’s length. Sometimes death is undeniably a more
alluring offer to the living and it beckons with the gentle whisper of an enticement
called freedom. The freedom from
pain, suffering and daily humiliation. The freedom to reject waking up every
morning to a cognitive (and physical) deterioration that is beyond one’s control.
The freedom to not burden one’s loved ones beyond what they can take. The
freedom to let go of a life that one no longer lives in or controls. But Dr
Graboys defied conventional wisdom and pressed on to leave no stones of meaning
and purpose unturned even as his conscious self laid wasted away.
In the Afterword of his book, this was how he
concluded and how I will end here: “Personally,
I have derived tremendous satisfaction from speaking to the groups of doctors,
nurses, and readers who come to book stores, high schools, community centers,
and hospital auditoriums to hear me struggle through a presentation that is not
terribly fluid. Audiences tolerate my pauses, my disjointed words and
sentences, and my sometimes inaudible voice because I think, they understand
and appreciate the enormous effort it takes. And there is another reason as
well: Just by showing up, I am telling them that there is hope – that even with
debilitating illness, life can be both precious and meaningful. And me? Though
I can no longer see patients, I get to be a doctor again.” Ordinary heroes; extraordinary strength. Cheerz.