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Spice of life | When breath becomes air, but infectious smile stays etched
The disease might be a different one but the journey for both the patient and the caregiving loved ones unfolds on a similar arduous road
He was a ubiquitous presence on the mezzanine floor of my childhood home. It was here on a sofa on this floor that he dressed my younger brother in a tie for his first day in school. There is a photo somewhere, both smiling at each other, my brother in uniform, while he’s bent over him, his hands working swiftly on the tie.
It’s here on this floor that he sat on the sofa every evening, KL Saigal serenading the room from the cassette player in the far corner and his infectious smile on display as he sang along in tune with the music.
It was here on this floor of the house that he accidentally and excitedly let a secret slip away – my parents had brought home a puppy as a surprise. Realising his faux pas and the squeal of excitement as we dashed downstairs in excitement, I will never forget his grin as if he just couldn’t be happier for us.
It was here on this floor every January 26 – the date that he shared his birthday with the country’s Republic Day, that we would assemble to watch the parade on TV.
It was also here on this floor years later that my grandmother could be found clicking away on the computer keyboard in the adjoining room, frantically searching for any new research, drug, treatment or doctor who could provide her with a Hail Mary to stop her husband, my grandfather’s, brain and body from slowly shutting down. She struggled for answers on whether what he had was Alzheimer’s or Parkinson’s or a combination of both as diagnosed.
To be on this lamentable journey with a close family member, living in the same house and witnessing this downward spiralling first hand is an onerous thing. A few years ago, I read Paul Kalanithi’s autobiographical memoir, When Breath Becomes Air, a neurosurgeon’s account of his battle with stage-four lung cancer – a brilliant and evocative work of non-fiction that stays with you much longer than the pages of the book do. The disease might be a different one but the journey for both the patient and caregiving loved ones unfolds on a similar arduous road.
Predictably, the recent news about an experimental drug called Lecanemab showing “potential” according to a Phase-3 trial for slowing down Alzheimer’s was evocative. While it is deemed to be one of the first dementia drugs to appear to slow the progression of cognitive decline, experts also stress the need for longer trials to conclude efficacy and safety.
While it may be a small first step, it is a giant leap toward hope for family members of those who are in the throes of the disease. The underfunding of dementia-related research has been termed as “chronic” by UK Dementia Research Institute director Bart De Trooper. By highlighting positive elements of the study, he breathes the air of hope into the lungs of families buckling under hopelessness and despair daily. A breath of hope that my grandmother was searching for two decades ago.
It was also here on this mezzanine floor that he breathed his last halfway through his breakfast porridge, his hand still clutching the spoon moments after. And just like that, breath became air. I wasn’t prepared for this departure just yet. None of us were. Even though we knew we should have been.
Fortunately, it is only his infectious smile that comes to mind whenever I think of him.
After a string of failures, let’s hope that promising new drugs like Lecanemab can soon help countless other families in countless other homes to hold on to their loved ones living on those special floors just a little bit longer.
shairamohan@gmail.com
The writer is a Kuala Lumpur-based freelance contributor
