Sunday, 31 May 2015

Ordinary heroes; Extraordinary strength

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.

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