On the redemptive acceptance of the terminally ill as “a living part of the community.”
“There is something in personal love, caresses, and the magnetic flood of sympathy and friendship, that does, in its way, more good than all the medicine in the world,” Walt Whitman wrote in his insightful meditation on healthcare and the human spirit, from which contemporary medicine has much to learn, after he volunteered as a nurse during the Civil War.
I thought of Whitman during a beautiful, bittersweet weekend of poetry with a dear, terminally ill friend who is living longer and more fully than her grim diagnosis had originally prophesied, largely thanks to her deliberate decision to immerse herself in such a “magnetic flood of sympathy and friendship,” to spend weekends reading poetry with people who love her.
This life-expanding power of sympathetic affection is what Oliver Sacks (July 9, 1933–August 30, 2015), a Whitman of medicine, explores in a passage from his thoroughly fantastic 1997 book The Island of the Colorblind (public library) — the extraordinary travelogue of mind and body, which gave us Dr. Sacks on evolving our notions of normalcy to include the differently abled.
In one particularly moving portion, Dr. Sacks recounts his encounter with a sixty-year-old woman named Tomasa, born the same year as he, who for the past quarter of her life had been living with lytico — a progressively paralytic disease endemic to the island of Guam, in some cases resembling ALS and in others Parkinson’s.
He describes Tomasa’s state at the time of their meeting:
She had already had lytico for fifteen years when he met her; it has advanced steadily since, paralyzing not only her limbs but the muscles of breathing, speech, and swallowing. She is now near the end, but has continued to bear it with fortitude, to tolerate a nasogastric tube, frequent choking and aspiration, total dependence, with a calm, unfrightened fatalism. Indeed a fatality hangs over her entire family—her father suffered from lytico, as did two of her sisters, while two of her brothers have parkinsonism and dementia. Out of eight children in her generation, five have been afflicted by the lytico-bodig.
And yet what made Tomasa’s condition extraordinary against the backdrop of Western medicine is how it was met by the community and her loved ones. Dr. Sacks writes:
Family, friends, neighbors, come in at all hours, read the papers to her, tell her the news, give her all the local gossip. At Christmas, the Christmas tree is put by her couch; if there are local fiestas or picnics, people gather in her room. She may scarcely be able to move or speak, but she is still, in their eyes, a total person, still part of the family and community. She will remain at home, in the bosom of her family and community, in total consciousness and dignity and personhood, up to the day of her death, a death which cannot, now, be too far off.
This acceptance of the sick person as a person, a living part of the community, extends to those with chronic and incurable illness, who may, like Tomasa, have years of invalidism. I thought of my own patients with advanced ALS in New York, all in hospitals or nursing homes, with nasogastric tubes, suction apparatus, sometimes respirators, every sort of technical support — but very much alone, deliberately or unconsciously avoided by their relatives, who cannot bear to see them in this state, and almost prefer to think of them (as the hospital does) not as human beings, but as terminal medical cases on full “life support,” getting the best of modern medical care. Such patients are often avoided by doctors too, written, even by them, out of the book of life.
Complement The Island of the Colorblind with Dr. Sacks on death and destiny, the power of music, choosing empathy over vengeance, his stirring recollection of his largehearted life, and this rare glimpse of his creative process.
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