"If life is a journey then let my soul travel to share your pain.”
– Santosh Kalwar
We headed outside to sit in a spot in the sun. Caged as he was, his mind trapped in a body unable to meet his expectations, this was a small semblance of freedom. His progress was slow, occasionally punctuated with a thump when his walker bore the brunt of his frustration.
It had taken me a week to get over the repercussions of his battle with glioblastoma. Jim and I had six weeks to give, the chance to honor the life of a loved one a true blessing. Words like incurable and terminal hardly scratched the surface of life with an aggressive and malignant brain tumor. He’d lost much of the independence I take for granted; he could no longer drive, read, bathe or dress himself, or walk unassisted. He could still feed himself, mourn his losses, and contemplate his not-so-distant future. Anxiety was a constant companion. His very humanity was in jeopardy, buried as it was beneath his broken body and battered spirit.
It took considerable effort to be a witness to his suffering without indulging in my own self-absorbed fears and tears. Once there, I discovered the view from the edge of life was different, clearer, magnified by the most unimaginable of vulnerabilities.
Retirement had quickly followed on the heels of brain surgery and radiation. His brilliant mind and stellar career had receded into the shadows of a life once rich with purpose and people. Moments of clarity were often steeped in confusion, just as often clouded with disappointment, worry, perhaps regret. We all knew this was the beginning of the end. The end was discussed openly and freely based on his lead.
He was having a good day the morning of our excursion to the sunny confines of the back yard, his thoughts coherent and his body relatively cooperative. We sat in silence, my offer to read from one of his favorite books politely declined. I allowed the sunshine and the beauty of the crisp fall day to wash over me, feeling content. For a moment, the eternal question – why? – was actually swallowed up by the sun.
Five months into his ordeal, ‘why?’ had given way to ‘how long?’ The answers were still shrouded in mystery.
So much of life, and certainly death, is a mystery. Perhaps the mystery serves a greater purpose than a single answer allows.
“Ready to go back inside?” I queried in the wake of rustling coming from his direction.
“Ready to check out,” he said with quiet sarcasm, slowly rising from his chair.
“Check this out,” I volleyed back. “Ten o’clock.”
He looked up to catch sight of a bright red cardinal in a tree about 10 yards away.
“Keep the faith,” I chided, pointing at the cardinal before grabbing his walker and guiding his left hand, one of two limbs that now had a crazy life of its own, until it made contact with the walker.
Left-side neglect was the medical term for the brain damage affecting the left side of his body. Depression was the medical term for the damage to his spirit.
“I never imagined I’d be following in my mother’s footsteps,” he reflected, pausing in his clumsy efforts to walk while he absorbed the impact of his revelation.
“She’d be so proud,” I replied, relying on humor to diffuse the pain behind his truth.
The faintest hint of a smile failed to reach his sad eyes. He’d always been a man of few words, a gentle soul, devoted husband and father. Devoted son, too, based on the care and the home he and his family had provided his widowed and infirmed mother in her final years.
“I had so little empathy for her plight,” he whispered.
“Damn those gender roles,” I offered, opting for absolution. I was certainly in no position to judge.
A month later, reflecting on my view from the edge of life, the thoughts of psychiatrist and author Rachel Naomi Remen, who spent years helping the terminally ill navigate those deep waters, came to mind.
"Perhaps we do not die all at once. Dying may be a time of intense learning, as painful as labor and birth, and in the end we give birth to ourselves. Perhaps we die, not because we are ill or failing, but because we are complete."
It took considerable effort to be a witness to his suffering without indulging in my own self-absorbed fears and tears. Once there, I discovered the view from the edge of life was different, clearer, magnified by the most unimaginable of vulnerabilities.
Retirement had quickly followed on the heels of brain surgery and radiation. His brilliant mind and stellar career had receded into the shadows of a life once rich with purpose and people. Moments of clarity were often steeped in confusion, just as often clouded with disappointment, worry, perhaps regret. We all knew this was the beginning of the end. The end was discussed openly and freely based on his lead.
He was having a good day the morning of our excursion to the sunny confines of the back yard, his thoughts coherent and his body relatively cooperative. We sat in silence, my offer to read from one of his favorite books politely declined. I allowed the sunshine and the beauty of the crisp fall day to wash over me, feeling content. For a moment, the eternal question – why? – was actually swallowed up by the sun.
Five months into his ordeal, ‘why?’ had given way to ‘how long?’ The answers were still shrouded in mystery.
So much of life, and certainly death, is a mystery. Perhaps the mystery serves a greater purpose than a single answer allows.
“Ready to go back inside?” I queried in the wake of rustling coming from his direction.
“Ready to check out,” he said with quiet sarcasm, slowly rising from his chair.
“Check this out,” I volleyed back. “Ten o’clock.”
He looked up to catch sight of a bright red cardinal in a tree about 10 yards away.
“Keep the faith,” I chided, pointing at the cardinal before grabbing his walker and guiding his left hand, one of two limbs that now had a crazy life of its own, until it made contact with the walker.
Left-side neglect was the medical term for the brain damage affecting the left side of his body. Depression was the medical term for the damage to his spirit.
“I never imagined I’d be following in my mother’s footsteps,” he reflected, pausing in his clumsy efforts to walk while he absorbed the impact of his revelation.
“She’d be so proud,” I replied, relying on humor to diffuse the pain behind his truth.
The faintest hint of a smile failed to reach his sad eyes. He’d always been a man of few words, a gentle soul, devoted husband and father. Devoted son, too, based on the care and the home he and his family had provided his widowed and infirmed mother in her final years.
“I had so little empathy for her plight,” he whispered.
“Damn those gender roles,” I offered, opting for absolution. I was certainly in no position to judge.
A month later, reflecting on my view from the edge of life, the thoughts of psychiatrist and author Rachel Naomi Remen, who spent years helping the terminally ill navigate those deep waters, came to mind.
"Perhaps we do not die all at once. Dying may be a time of intense learning, as painful as labor and birth, and in the end we give birth to ourselves. Perhaps we die, not because we are ill or failing, but because we are complete."
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