Writing his own fairy tale

How a brave, worldly-wise teenager, who overcame every health failure with fortitude, taught a resident doctor to believe in the impossible.

Once upon a time there was a boy name Arkojjwal. He was a 13-year-old with a brain tumour, and unlike any boy I had met. In 2008, when I was an exhausted resident doctor training to be a neurosurgeon in Vellore, he was admitted to the paediatric ward that I was assigned to. He had a curly mop of hair and wore a pair of thick glasses gingerly balanced on the tip of his nose, giving him the quintessential professor look.

“One day, whilst I was sitting in class, I suddenly noticed double-vision,” he said in his chaste Bengali-English, as I noted down his history meticulously. “And when I reached home, my mother saw a squint in my eye.” His MRI showed a craniopharyngioma – a tumour that is hard to pronounce but even harder to remove. It arises from the pituitary stalk, and in his case, had ensconced in the right optic nerve with chunks of calcium encircling important arteries of the brain. Not only that, it pressed firmly against the hypothalamus – the seat of consciousness. It was hard to imagine a monstrosity like this sitting inside one of the brightest minds I had ever seen.

At the end of each day, way past midnight, when I used to sit down at the computer in the ward to type out discharge summaries and send-off investigations for the next day, and pore through progress notes, Arkojjwal would pull up a chair and come sit next to me for an hour or two. “Did you know Zoroastrianism is the oldest monotheistic religion in the word?” he said, after finding out that I was Parsi. I nodded, slightly befuddled. Each day, he would educate me with some trivia that broadened my worldly knowledge, and in return, I taught him to read MRI scans. He helped me file paper work and write up lab tests for other patients. I indulged him with facts about the anatomy of the brain. We were a team. He was 13 and I, 26. He wrote me a poem every day and read it out during our midnight rendezvous.

A few days later, I assisted my mentor with Arkojjwal’s operation. The brain was softly dancing to the beat of the heart as we opened it. This gentle rhythmic dance that the brain does seemed to connect you directly to the cosmos. I watched in awe under the microscope as my mentor peeled off the tumour digging its heels into the optic nerve. I nimbly assisted as he removed small glistening pieces of calcium, it was almost like unearthing diamonds floating in molten gold. The more we dug, the more jewels we found, until all that was left was the cyst wall stuck to the hypothalamus. As he peeled that off with the sleight of a magician, I found myself praying that Arkojjwal would awaken after surgery. Every bit of tumour visible under the microscope was eventually removed. I was lucky to have witnessed such symphonic mastery.

Arkojjwal woke up just fine, reciting Shakespeare on the evening of the operation as he was tethered to tubes preventing him from writing poetry. Patients, in whom such tumours are resected aggressively from the pituitary stalk (which is responsible for the transportation of hormones), develop sodium and water imbalances that can be laborious to treat, and they require monitoring of vital parameters every hour. On the eighth postoperative day, his sodium levels saw a swift swing from rock bottom to sky high and he slipped into a coma; he was in this state for over a month. The entire team was despondent, but we kept fighting. It reminded me of something I had read a long time ago: “In taking up another’s cross, one must sometimes get crushed by the weight.”

When he awakened, 56 days later, he couldn’t move at all, except for an involuntary tremor in the limbs. Owing to the rapid fluctuation in his sodium levels, he had sustained damage to his brain stem and the basal ganglia responsible for movement. After about three months of intense rehabilitation, which included his mother physically flexing him eight hours a day and talking to him about his past for another eight hours, there was some semblance of an ability to walk and regaining of lost memory. He was finally discharged. He was on various hormonal replacement and growth hormone injections, as his body was no longer secreting hormones on its own.

He followed up with us in Vellore each year, walking a little better, shaking a little less, seeming a little sharper. Over the course of a few years, he underwent a hip replacement as the steroids he was taking had affected his hip joint. His school allowed him to have writers so he could complete his ICSE, he could not sit up for his exams either. He also had to replace 10 teeth in each jaw as the enamel had decayed from the side effects of the medication he was on. He subsequently developed a second brain tumour in his cerebellum, at the back of his head, which we also removed successfully. He was almost like family to every staff member and doctor in the hospital. He overcame every failure with a fortitude worth emulating.

I had left Vellore in 2014 and hadn’t heard from him for a few years, until a few weeks ago when he messaged me with a poem:

Dear Dr. Turel,

You are always present in my mind to the extent that none can reach,

The memories with which you teach,

How to overcome any problem,

And claim happiness by God’s grace,

Sweeping away each and every sorrow,

Thus you’ve become to me an influencing hero.

Thus you’ve become to me an influencing hero.

Your beloved,

Arkoj

I was just a resident doctor at the time and not befitting of such praise, nor could I take credit for any medical outcomes or successes, but I was so excited to hear from him! I began reminiscing about all the wonderful times we had in the four months we had spent together in the hospital, two of which he spent oblivious of what was happening around him (during the coma). I picked up the phone and called him. “Hieee!” I said, allowing for the time we had spent apart to collapse into a capsule.

“I’ve completed my MA in English at Jadavpur University,” he said, in slightly more refined Bengali-English this time.

“Wow,” I exclaimed. “What next?”

“I’m doing my PhD now,” he said with sated joy.

“In what?” I enquired.

With a tender note in his voice backed by the certainty of a brighter future, he proclaimed, “Fairy tales.”

This column has been published with the author’s permission. It also appeared in the Sunday Midday on 22/2/21.

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