Chika Kapadia, a man of Indian origin; in his late 50s or early 60s; living in Ubud, Indonesia; movie buff; standup comedian; divorced; someone who loved his occasional drink or cannabis hit; dear friend to many; youngest of 5 siblings; a cancer statistic. Not just any cancer, but stage IV Anaplastic Thyroid Carcinoma (ATC).

Here’s a brief timeline: In early April 2022, Chika felt a pinch in his neck that he associated with his root canal problem. On 2 May 2022, a lump in the throat discovered during a routine dental appointment in. It was suggested that he get a battery of tests done just to rule out anything abnormal. On 8 May 2022, at about 8pm, his oncologist shared the diagnosis, with the suggestion that he address end of life issues. He barely had 3-4 months to live.

 

For those who are diagnosed with ATC, the lump progressively gets bigger. It affects the thyroid gland just below the Adam’s apple, and the metastases spreads rapidly to other parts. Swallowing food becomes hard, and slowly the capability to eat solid food reduces to the ability to take in mushy food, and later deteriorates to liquids only.

Chika decided to keep a daily diary from 15 May 2022. He formulated a scale from 0 to 5, with 5 being the most severe, and applied that scale daily to his physical as well as mental health separately. He succeeded in religiously making entries almost every single day till his last day here on Earth.

Chika’s diary entries are stoic, pragmatic, poignant, have a sense of activism and hope and show tremendous grace under adversity. Surprisingly, morbid was not an adjective that came to my mind.

If this narrative makes you uncomfortable, this might be the place to log off.

The diary (Cancer Chose Me, But I Chose How To Die) reveals admirable stoicism upon hearing the diagnosis. Most people go through the five stages of grief – denial, anger, bargaining, depression, acceptance. Whether it was because he knew he had such little time, or because he was inherently wired differently, Chika rapidly leapfrogged from being shell-shocked to acceptance. He neither played victim nor did he curl up and become a defeatist.

Chika started off three streams of work, while continuing to deal with the daily vagaries of the illness. One, to decide on how to dispose of his assets and his earthly possessions. Two, to apply for an experimental treatment that potentially had life-saving benefits. And three, to apply to a non-profit organization known as Dignitas in Switzerland. Dignitas is one of the few institutions that facilitate a dignified death (“the last human right”) for those with terminal illnesses that have no cure and where the deterioration of faculties snatches away any chance of a decent quality of life.

Within a month or so, he realized that the experimental treatment regimen is not for someone of his condition and he would not be accepted given how advanced and how particularly virulent his carcinoma was. While this news dampened his spirits for a couple of days, he did pick up the threads on the Dignitas application and pursued it diligently. The only anxiety we sense in his entries are when he faces doubts on whether he will be accepted to the Dignitas program.

Affording it is not Chika’s problem. Indeed, he acknowledges that he is privileged enough to be able to make that choice and afford that application. His concern mainly lay in the fact that Dignitas has a stringent application evaluation process (necessarily so) and has a certain capacity, while Chika has very limited, and unknown, time left.

While he waits for the confirmation with a bit of trepidation, he spends time with his favorite niece, cycles to his beloved paddy fields and witnesses sunsets, catches up with his friends for beer and whiskey parties, indulges in his favorite ice creams (no need to worry about cholesterol, as he puts it). It is not a desperate, harried and feeble attempt at joy and euphoria to be crammed into limited time. It appears more like a thoughtful curation of experiences that he wants to go through once again.

And yet every day, time flies ahead just a little bit, and the diary entries keep coming. Some days the mental and physical are both less than 3. Some days the physical scale hits a 4. Some days he is astonished by his own assessment that he is at a 2 on both physical and mental scales.

Every once in a while, he makes an impassioned appeal that the right to die with dignity, to choose one’s own exit when there is no other way left, is a birthright. He bemoans the fact that most countries in the world today have no such facilities or even laws that factor in this human condition. He is pragmatic enough to note that there have to be very careful assessments of such cases to prevent misuse, while also articulating with clarity that just because there are no such laws don’t mean that such assisted deaths are not happening every single day the world over.

His application was accepted by Dignitas and it was time to move to Switzerland. The overwhelming feeling was one of relief. His main observation is that as someone who loved life, the thought of suicide had never ever crossed his mind; and now to be faced with rejection by the one place where he could choose his terms, this thought may cross his mind. He makes a case for Dignitas by using a very counterintuitive yet effective argument.

He first chose 14 August 2022 as his day of freedom, to coincide with India’s tryst with destiny. Due to some reasons, he postponed it to 23 August 2022. He allowed his dear friend, filmmaker Shonali Bose to film his last 15 days, trusting her to use it correctly. His last wishes were to eat his favorite Glucose D biscuits brought from Bombay and to go to sleep one last time while reading Robert Frost’s poem, “Stopping by Woods on a Snowy Evening”, with the immortal lines, “Miles To Go Before I Sleep”, all while surrounded by friends and family.

I have deeply conflicted feelings about this whole episode; I believe I am still processing a great many things ever since I read this complete diary on a flight in October 2022. I neither have answers, nor questions. I have probably just taken a step or two in understanding with empathy, what a fellow human must have gone through when snowed under such unexpected adversity. I am also left with a strong feeling that like most things around us, our understanding of human rights is also quite superficial.