What does one do when the law that is blind to both medicine and compassion makes a mother carry a pregnancy though it is clear that the baby can only survive for a few hours?
Baby Milo arrived in the world with no kidneys, underdeveloped lungs and a life expectancy of between 20 minutes and a couple of hours. He lived for 99 minutes. On March 3, 2023.
Mother Deborah and her husband, Lee, had learned in late November that their baby had Potter syndrome, a rare and lethal condition.
As long as their baby’s heart kept beating, the doctors would not honor their request to terminate the pregnancy. The new Florida law on abortion carries severe penalties, including prison time, for medical practitioners who run afoul of it. Everyone knew the baby would not survive. Yet, the parents had to wait for labor to be induced at 37 weeks.
The Dorberts consulted with palliative care experts and decided against trying to prolong his life with high-tech interventions.
The day before Milo was born, the Dorberts sat down with their son Kaiden to explain that the baby’s body had stopped working and that he would not come home. Instead, someday, they told Kaiden, they would all meet as angels. The 4-year-old burst into tears, telling them that he did not want to be an angel.
After Deborah’s 12-hour labor, Milo turned out to be 4 pounds and 12 ounces of perfection, with tiny, flawlessly formed hands and feet and a head of brown hair.
The obstetrician cut the umbilical cord that for 37 weeks had performed the functions Milo’s underdeveloped lungs and missing kidneys would now take over.
Milo remained blue, swaddled in a blanket hand-knit by his great-grandmother. He never cried or tried to nurse or even opened his eyes, investing every ounce of energy in intermittent gasps for air.
For 99 minutes that lasted a lifetime, they cuddled and comforted their newborn. At 11:13 p.m., a doctor declared Milo dead.
At the service, the pastor from a local Lutheran church had a message for the congregation. “Not everything happens for a reason,” she said, echoing Deborah’s own rejection that the manner of Milo’s birth and death carried some special spiritual significance.
Deborah wants other people to know what happened, how politicians intervened in decisions about medical care with a law that made doctors fearful of terminating even hopeless pregnancies.
“If it helps another family or a mom, then good came of it because we’re all here to help one another,” Deborah said. “It’s not something easy to go through alone. You need all the support you can get.”
I am not an expert in medicine or law. But I have a question for my compassionate friends in palliative care. How do you console, how do you care when law blocks your path, and medicine can only stand by?
Last Sunday, the day the world celebrated mothers, was no different for this mother. Her two sons, 33 and 31, are growing without hunger, pain, joy or sorrow, thanks to her. But do they even know her?
Sometimes they do in the dining hall what they ought to do in the bathroom. Or do in the kitchen what they ought to do out in the yard. Radhamani would discover after cleaning up the mess that the younger was down after another epileptic fit. She would rush to find someone to mind the elder son and then rush to the hospital to fix the wound.
She has just one persistent sorrow. That they don’t know her, her love. Every moment, she pines to hear them calling out to amma. There are times when she is cleaning the vessels or sweeping the yard, that she would hear that call. She would look up eagerly, only to realize nobody had called her.
Writing erases pain
Writing offers her relief. When she writes, her sorrows get erased. She has already published three books in Malayalam.
She had a small government job. Father was a sweeper at a bank. Mother was a housewife. After finishing his work, in the afternoon, her father would go to pick jackfruit leaves which he would bundle up and take to the market to sell. Her most cherished moments were when she and her mother joined him to help pack up the leaves and carry those to the market.
Radhamani had to displease her parents when she decided to marry her childhood friend, Raj. Both families objected. But the couple stuck to their decision.
Radhamani and Raj had their first son nine years after marriage. They named him after the poet they both loved — Shelley. Two years later was born the second son — Sherry.
The boys were a little late to start talking. When Shelley was three and half, their regular doctor felt something was wrong and recommended admission to a larger hospital. Both children were diagnosed to be autistic. The parents were advised to pray.
“I realized the truth that they would need my help to go through life. Gradually I regained strength.” Radhamani had no option.
By this time, her father was dead. Radhamani’s family returned to live with her mother. When both of them left for work, Radhamani’s mother would look after the boys. “The boys would be at a special school until the afternoon. Then mother would feed them and take care of them.”
Waking up to cruel reality
Radhamani’s world collapsed when her mother passed away. That’s when she came to know firsthand how tough it was to bring up the boys.
When the boys were 8 and 6 respectively, a heart attack claimed Raj. That shock haunted Radhamani for a long time. Now, it has been 25 years since he moved on.
She learnt that the boys had no clue about death when the family went through Raj’s cremation rituals. They were in no position to do whatever they were expected to do as sons. That whole night Radhamani spent crying.
“I know when I die my sons will forget me within a week,” Radhamani states calmly. “Yet when I go out somewhere, they would be waiting at home. Waiting in the hope that I would get something to eat. That waiting is enough for me to live on. Else I would have taken my life long ago.”
Finding refuge in words
People tell her death lurks in her stories and poems. Radhamani knows. “It is my writing that keeps the thoughts of suicide away. That is why my writing smells of death.”
“After I die, someone should adopt my children. I hope the government opens a facility to take care of such children in every district. That is my appeal, my prayer. Then I can die in peace.”
This is based on a report dated May 14, 2023, in the Malayalam newspaper Mathrubhumi, written by Sajna Alungal. Illustration based on images accompanying the story.
This was triggered by my recent visit, not to any doctor, but to the friendly, neighborhood laundry guy. He was scribbling a receipt for the clothes I had just given him when another customer, watching him write, remarked, “You should have been a doctor!”
“Just need to get the degree,” the laundry man responded with a smile, “my handwriting has already qualified.”
The joke continued when I crossed the road to get to the pharmacy. The pharmacist was deep in conversation with an elderly customer. They were both looking at a slip of paper that, going by the scrawl-style, might have been a written by the laundry man.
I waited patiently as the conversation went over symptoms, likely diagnosis, the expected effect of the prescribed medicines and potential side effects. After sending the patient away (“when do you want me to come back?”), the pharmacist turned to me apologetically. “I don’t think he would have been able to read it even if he wanted to. Took me years after pharmacy college to read what doctors write. Of course, can’t expect every doctor to spend time explaining everything to every patient.”
This joke is anything but new. But why has it persisted over decades? Why are doctors associated with bad handwriting?
Not that it can be brushed off as a joke when “bad handwriting by doctors is responsible for 7,000 deaths every year” as cited by this old article. Worse, illegible handwriting is a major cause of “medication error,” that kills 30,000 people in the UK and 100,000 in the US, every year.
Back in 2015, neurologist Dr Nomal Chandra Borah, founder of GNRC, observed that he was unable to decipher 25% of the prescriptions written by other doctors. He cited a case where a woman suffering from convulsions was admitted to his hospital. Another doctor “had prescribed her DUODIL—an analgesic, but what was bought and consumed was DAONIL—a medicine for diabetics. This was causing a sudden fall in her blood sugar levels, leading to the convulsions. Such a grave consequence, simply because of the illegible handwriting of the doctor….”
Dr Borah applauded the guidelines from the Medical Council of India (MCI) asking doctors to write complete and detailed prescriptions “legibly and in capital letters.” However, he noted that it was hardly practiced and there was “no monitoring mechanism to ensure adherence.” (By the way, the MCI was dissolved on September 25, 2020, and replaced by the National Medical Commission.)
What the doctors said
I decided to go to the source of the prescription and ask a few doctor-friends. Here are some bits from the responses.
“Doctors are terribly busy. Would rather move to the next patient quickly than spend time to write neat and clean.”
“People often doubt if I am really a doctor. Because anyone can read my prescriptions easily.”
“It starts from the training days. You are supposed to go on rounds with the seniors and note the details of every patient. There is so much repetitive writing to do and very little time. You know the nurses would understand in any case. So, you just scribble to comply. And the habit sticks.”
“When you are in college, there is a premium on neat handwriting. Your examiner is not your patient. Then workload and good old boredom take over. At least some seniors I know take the scribble as a strange status symbol. After all, it is to be read by another doctor who deals with another part of anatomy. Or a chemist. It is not meant to be read by the patient, they say.”
“I knew a fellow doctor whose prescriptions could be deciphered only by a specific chemist. Not sure if he used some code.”
“Technology is making a difference. Hospitals are getting paperless. Prescriptions are printed. Patient records are digital. You are complaining of bad handwriting still? Wait until AI gets here.”
Some palliative medicine specialists I spoke to thought bad handwriting was a non-issue. “Every patient needs an understanding ear and a caring touch. Prescriptions come later.” Of course, I didn’t have the heart to tell them that the hero prescription now is AI and not EI (empathetic intelligence).
Just Google it
Talking of AI, surely bad handwriting ought to be something it can tackle easily? Apparently, it is!
In December 2022, Google announced it was working on “an artificial intelligence (AI) and machine learning (ML) model that can identify and highlight medicines within difficult-to-read handwritten prescriptions.” Looks like we will soon have an app that can read any doctor and tell you what the doctor wants you to take to get better. Just what the doctor ordered! Or is it?
Meanwhile, the doctor joke continues to bounce clean off the laundry guy. And the chemist offers human intelligence, experiential learning, and a patient ear to tell you what the prescription reveals. And no clinical touch needed; you can use your mobile wallet to pay for the medicine you hope will make you, well, well.
Is it possible to have one foot in surface science as an experimental physicist and the other playing bass in a heavy-metal band? Welcome to the life of Alessandro Sala!
When he is not setting the stage on fire, Sala is “investigating the properties of nanostructured surfaces, 2D materials and organometallic molecules with a scanning tunnelling microscope.”
When he is not exploring the intricacies of surfaces, he plays bass for Rhapsody Of Fire, a heavy-metal band “that has sold more than one million records throughout its 25-year history and regularly tours the world.”
So, what’s the big deal in playing some music after work? His musical role “requires month-long absences from the lab, early-morning flights and dark leather clothes.” (Wonder if the molecules would act differently if the scientist observing them wore dark leather clothes and carried a bass guitar!)
Science and music
Writing in Nature, Sala says, “Good time management is key to having the best of both worlds.” If that sounds like a cliché, it is an art he has scientifically perfected over the years.
His strategy is to find separate spaces for music and science. “I accept master’s candidates and temporary lecturing positions only if no big tour is scheduled in the following semester. I train my postgraduate students to be completely independent, so they can keep working when I travel.” And he attends conferences only in May, June, September and October; the band tends to tour in the other months.
He arranges his parts in new songs mentally over a couple of months and condenses all recording sessions into a couple of weekends. He shares his musical commitments with his co-workers and carefully plans lab activities so that work and music are always in tune. Yes, Sala does attend lab meetings remotely so that he is always updated. No rehearsals while doing lab work, except that “while I’m immersed in an experiment; I do listen to good music, though.”
Has one profession had an influence on the other?
His colleagues are happy to use his scanning tunnelling microscope during his scheduled absence. Also, “in the lab, everybody is capable of using every instrument, and often we help each other on our scientific projects.”
In the music industry, all events from composing new music to live tours are routinely planned around two years ahead. “I treat research branches like albums: every couple of years I revise them critically, and I am not frightened to start a new one, if needed.”
“When I come back to my lab after a month of sleeping on a tour bus, my mind is ready for new scientific ideas, and I feel free to dedicate myself to a scientific task within a well-defined time frame.”
How does one describe Sala’s life—a symbiotic symphony or a delightful duet?
Composite image: 1. Alessandro Sala's image by Esther W. Pink from Nature; 2. still of animated image of scanning tunnelling microscope from ArchimedesBerlin.
There is the real game of life for most people, and there is the virtual life of massively multiplayer online gaming that is the only real thing for many. A recent report suggests that gaming will soon be the real thing in life, and everyone would be a gamer. Brent Baldwin, once a gamer himself, fervently hopes this future will not come to pass.
In Baldwin's story, “a collection of so many things from my own life”, the gamers in the future are a lost generation, educated but unemployed, living “in a world too expensive and too hot for in-person gatherings.”
Yarro, the central character, lives in a bare minimum pod with no kitchen. For Yarro, “the lack of a kitchen meant more room for a fully immersive gaming rig, which was the height of human existence.”
He hates to go the place where his dad lives (“Miss you, son”) because he does not want to “endure the sun and the heat outside his pod”. Also, because Yarro doesn’t want to run into anyone “who would pester him about ‘not calling’ or ‘how have you been’ or ‘I’m so sorry about your mom’.”
Yet he ends up going there because Sisho, a member of his “posse” had uncharacteristically not logged in for two days. Imagine! A gamer not online! He got to know from a fellow gamer that Sisho was in a hospital near his father’s place.
Sisho had almost died from “nutritive failure.” In non-gaming, real-life words, Sisho was so engrossed in the game that he did not pause to eat and had almost starved to death.
After leaving the hospital, Yarro goes on to visit his father.
Standing in his childhood home, Yarro remembers his parents’ laughter. “How it used to seem so fake, until it was absent. For most of his life, all Yarro had really wanted was to get into a gaming rig and explore other worlds, but for a moment he imagined himself as his Dad, alone day after day. Sisho had the posse waiting for him. With Mom gone, Dad had no one.”
Do read Yarro's story and ponder about the future that awaits all of us.
A few minutes ago, I came across a scientist’s prediction that technology will make humans immortal by 2030. By 2045, “we will multiply our effective intelligence a billion-fold by merging with the intelligence we have created.”
Can we harness some of that artificial intelligence to undo the damage we continue to wreak on the outside? And to restore the fragile love and fraying care within us?
That is one animal which does not feature in this documentary. Yet, its call to heed the elephant in the room is not a whisper but a shriek.
Thanks to the push provided by the Oscar-fuelled social media, I finally saw The Elephant Whisperers a couple of weeks ago. Loved it! Made me relive the only time I had the opportunity to give an elephant a bath, in Dubare Elephant Camp, Coorg. I have always been in love with the gentle giants. Oscar or no Oscar, I would definitely watch the documentary again for Raghu and Ammu, and the beautiful visuals.
There are no such beautiful visuals in the documentary I saw a couple of days ago--All That Breathes. No, this is not an attempt to compare the two documentaries. They deal with the same truth we live, but in different ways.
While The Elephant left me feeling good, Breathes left me feeling guilty, uneasy. I don’t think I will ever be able to look a bird in the eye after watching Breathes.
Let me not spoil your experience of watching it and forming your own impressions.
Just think of all that breathes with us on this planet. And somehow surviving in the filth that has become our ecosystem. We struggle to survive even with fellow members of our species. While we orate, shout, fight and burn, who has the time to worry about birds dropping from the sky?
How can we possibly keep breathing when we consciously and unconsciously create conditions that make it difficult to our fellow residents to live in health and peace? Kites are using cigarette butts as insect repellents in their nests. Should we applaud their ingenuity or be ashamed by our own self-centred callousness?
All That Breathes is set in Ghazipur, where I was some years ago. Then as now, working away in the shadow of the infamous garbage mountain, artisans create pieces of art from waste. Perhaps, there is hope yet?
Or should we tell that to the birds?
“The earthquake was in Afghanistan,” the old fruit seller said, “but Delhi too was shaken.” He was handing over the second plastic bag my friend had demanded as a backup for the first one bulging with apples and mangoes.
My friend smirked and walked with me to the car.
“What did he mean by that?” I asked.
“Oh, he is nice but a little mad,” my friend replied. “He does not like it when people ask for plastic bags to carry the stuff they buy from him. He used to plead with everyone to get their own cloth bags. He gave up when people stopped buying from him. Crazy guy!”
What does that have got to do with the earthquake?
“He keeps lecturing that we are all one. Earth is gifted to us to by God, it seems. We must all protect it or we will be left with no home. As if, if I stop using a few plastic bags, the planet would be saved. Ha!”
“I doubt if he is even literate,” my friend continued, “but he talks of climate change. Yes, the very words. Climate is changing because God wants to give us a warning, it seems. This earthquake must have been God shaking his fist … ha, ha, ha!”
He was still laughing when I dropped him off before his gate.
I think I will carry a bag or two with me from tomorrow. And I will walk all the way. Why bother with a car when I am supposed to be on my morning walk.
No, I am not thinking of that crazy old man. But why am I thinking of my baby born last month?
You must read if you wish to write. If you are a writer, you must find your reader. You must weigh your words to deliver maximum value. Early lessons.
I started reading early with no ulterior motive. That crept in soon after the professor checked my essay on the college canteen. You are a good writer, she said. Be at it, she advised.
She went to on to make me a part of the editorial team of the junior college magazine. I had arrived, I was sure.
Then I found myself standing at the college gate pleading with all who entered to take a cyclostyled (yes, that used to be a thing) copy of The Junior Rag. The idea is to find your readers, and for that you must go to them, my teacher had said. All I could find was juniors and seniors alike treating the Rag as just that. For the next few days, I stayed clear of the waste bins and random flying bits of paper.
During my year in journalism college, I respectfully approached the instructor. I was carrying a sheaf of painfully typewritten pages. On the pages were words sure to pull readers to the resort I was helping sell. It was my first step into the exotic world of copywriting.
He flipped through the pages as if he were looking at some animation. Then he casually transferred the bunch from one hand to the other as if weighing the pages. “you can expect to get …” he mentioned a price, gave me a patronizing pat, handed the pages back dropping some in the process and moved on.
More recently I cleared out a huge stack of yellowing newspapers from the attic. Each carried a story with what was once rarely obtained, my byline. Explosive exposures, tearful tales, faithful facts. All by a writer who had, as my boss once put it, “strayed” into journalism. The scrap dealer dumped all the bundles on a large weighing scale, checked the weight and counted out the compensation. No, I did not linger for another backward glance.
Today, when yet another potential client asks me to quote my price per word, per page or per hour, I revisit my early lessons. Then I weighed every word because I valued the reader. Now the buyer weighs content that must be optimized to be found.
Procrastination is how you make the most of your time. While you are at it, do thieve some to enjoy yourself. After all, I have just about 800 left and you too have not much left, given that each of us has 4000 weeks, give or take a few.
That’s Oliver Burkeman’s estimate. Just that number immediately tells us what really matters, what is precious. TIME!
So, you have your ways (prescribed and digital) to tame time, you think? “The more you struggle to control it, to make it conform to your agenda, the further it slips from your control,” says Burkeman in his famous book, Four Thousand Weeks.
The problem, he says, is that time management techniques don’t acknowledge that time is limited. When you try to manage it, you no longer enjoy it.
Time was when we worked by the sun. Rise, shine and set, all with the sun. Then came the industrial revolution that made time another asset to divide and exploit.
Are you among those who pine for a bonus 24 to add to your given 24 in a day? It can be liberating if you accept the limit. “The paradoxical reward for accepting reality’s constraints is that they no longer feel so constraining,” says Burkeman.
What if you had all the time in the world to be at your device or at work? After all, there is so much to get done by EOD.
Once you accept time is finite, how do you make the most of it? Burkeman has a few suggestions. Know what must be done now, procrastinate or even neglect the rest. Limit what you take up and know you must choose and settle for some. Most importantly, enjoy what you use your time to do.
As the author puts it, the only way NOT to waste time is to use some of it "wastefully focused solely on the pleasure of the experience.”
Burkeman prescribes giving up some control over time and sharing it with family and friends. You will gain emotional riches when you prioritize the out-of-range, in-person kind human connections over the online.
Want to know how well you gel with time? Burkeman suggests four questions to ask yourself:
Accept the answers and get going. Enjoy it while it ticks.
Based on Four Thousand Weeks: Time and How You Use it by Oliver Burkeman; Bodley Head, 2021.
Dr Christiaan Barnard, the pioneer in human-to-human transplant, had visited India when I was in high school. Not sure if that was the trigger, but around the same time I developed this great interest in medicine, specifically in cardiac medicine.
Even browsed through all of Gray’s Anatomy when I was supposed to be reading Economics much to the amusement of an indulgent family doctor. As a bonus, I had this fascination for science fiction. So, save little details like studying medicine and learning surgery, my heart was set, well, on heart.
Thank God, that didn't happen! They say heart surgeons are dying out. I thought only writers were at risk. Looks like technology is set to bypass my dream surgeons, too.
According to The Economist, until “the late 19th century, surgeons were convinced that the organ was so delicate that even touching it would cause death.” When cardiac surgery emerged around the 1950s, “it quickly became one of the most prestigious and well-rewarded branches of medicine, dominated by vaunting men who gloried in their power to save those doomed to die.”
In 2008-09, heart operations in Britain were at an all-time high of over 41,000 only to fall to 31,000 10 years later. As against this, from 10,000 in 1991, the implantation of stents increased ten times to over 100,000 by 2020. Reportedly, there is ever less work to go around the estimated 250-plus consultant surgeons in Britain, a number that has remained "largely static."
What is happening? Is a ChatGPT cousin taking over heart surgery?
When Simon Akam, the writer of the article asked Dr Dincer Aktuerk, a consultant surgeon at St. Bartholomew’s about the future of the profession, the answer was arresting: “I don’t think that the conventional cardiac surgeon, as we know it, will exist in a few years’ time.”
Dr Richard Galloway, a surgical trainee has chosen to focus on orthopaedics. The rationale is more head and less heart. “Everyone’s going to need knee replacements,” Galloway told the writer. “You’re in good business there.”
Back in 1976, while in India, Dr Christiaan Barnard had told a journalist: “You can't be a heart surgeon and be tense.” Tense they are today, going by what Simon Akam has revealed.
I wonder, the next time I meet my writer friends over pints of a morale booster, and we again aver that no technology can ever replace us, will I also run into some cardiac surgeons asserting that no wire can slip through and cut the scalpel out?