A second life

Sid was in hospital for five months. Despite the expense and the language barrier, his father, Sushil never left his side.

When Isha came to Canada a couple of weeks after Sid’s surgeries, she wasn’t sure the family had made the right decision.

“At that time, he was completely in a different world,” she says. He would only “stare at us — there was no smile, no reaction, no nothing.”

Anyone who visited Sid noticed that his left hand would reflexively go to the left side of his head, which looked like it had caved in. In May 2014, he had a third surgery, to replace the piece of skull that had been removed in the first decompression procedure.

One of Sid’s work colleagues undertook a crowdfunding campaign and clothing drive to ensure Sushil could weather a Canadian winter in order to stay with his son. They raised over $8,000.

But eventually, Sushil could no longer afford to stay in Toronto, and took Sid back to India.

Sid now lives with his father in the family’s home in New Delhi. In order to accommodate Sid, they had to buy a hospital bed — it’s too large to fit through the door of Sid’s old room, so it currently straddles the living room and the hallway.

There is no live-in caregiver other than Sushil, although a nurse does come every weekday to help bathe Sid and change his clothes.

Isha says that when Sid returned to India, his dog, Zeus, immediately sensed the change. Unable to play with his master, Zeus is content now just to lie near him. (Provided by the Gupta family)

The only other permanent resident of the house is Sid’s beloved Doberman pinscher, Zeus. According to Isha, when Sid arrived at the house in a wheelchair in July 2014, the dog immediately sensed that something had happened. Rather than jump all over Sid as he might have done before, Zeus is now content simply to lie near him.

Sid is visited twice daily by both a physiotherapist and a speech therapist. In a series of texts and videos to CBC News, Sushil reveals that while Sid cannot form sentences or use his right arm, he is able to sit up, stand with the assistance of a brace on his right leg and feed himself.

In many ways, he has exceeded expectations. Sushil writes that while Sid is still in poor shape physically, mentally “he is better.”

On Sept. 1, Sid celebrated his 32nd birthday. Photos show him smiling while surrounded by friends and family in India. His father takes pictures and videos of Sid’s progress in speech therapy and physiotherapy, as well as some of his daily routine. One video shows him shrugging and shaking his arms in rhythm to Indian pop music.

Some of the clips can be difficult to watch. It’s gut-wrenching seeing a once-vibrant, intelligent young man struggling to feed himself and learn to say something as basic as “mama.” There are also moments when Sid can be seen shrieking in pain; anytime this happens, the dog becomes unsettled and starts pacing.

Isha can’t help but compare Sid in his current state to the capable man he used to be. “He just wanted to do everything.”

What makes the situation even harder for her to bear is that Sid has always played an outsize role in the family. When Isha was younger, he was her protector and the breadwinner.

For many years, the Guptas depended on Sid’s guidance and generosity. For example, after their father’s business failed, Sid paid for Isha to go to university in London.

Now, she and her husband, Saeed, send money back to India for Sid’s care.

“I’m not used to being the responsible sibling,” Isha says.

Isha and Sid hamming it up on Instagram the last time Isha visited her brother in India. (Provided by the Gupta family)

Although she now lives in Wales with Saeed and their two young children, Isha has visited New Delhi on several occasions and stays in close contact with her dad.

“My father was telling me the other day that Sid sometimes starts to laugh and then starts to cry and sometimes sticks his tongue out and winks all at the same time, all one after the other,” Isha says.

“When my father told me this, I wasn’t sure whether to be happy about it or to be sad about it, because it’s something that is messing him up. I started crying after this.”

Raghu talks to Sid on the phone from time to time. Because Sid can’t really speak, Sushil mediates the calls. For Raghu, hearing his friend’s incomprehensible utterances only reinforce how much he misses the old, gregarious Sid.

Shouvik has doubts about whether his best friend would want to live this way.

“I don't know if he's happy that he's alive, or sad that he's alive like this.”

”I don’t know if he’s happy that he’s alive or sad that he’s alive like this. I mean if I were him, I would rather be dead. And looking at what a free spirit he was… it’s just that he has the rest of his life and he has to spend it like this.”

Dr. Tymianski says that if asked hypothetically, “some people have a perspective that if they can’t be neurologically normal, they wouldn’t want to stick around.”

But others say they “would find it acceptable if they could stick around and be with their families and see their grandchildren and watch television with them.”

All the neurologists interviewed for this story agree it may be too early to tell the full extent of Sid’s recovery. One thing is for sure: his youth may work to his advantage.

The brain’s ability to remake neural connections — what’s known as its plasticity — is still not fully understood, but it is possible for a person missing a large portion of their brain to live a productive life, says Dr. Brem at Johns Hopkins.

He cites the example of epileptic children who undergo radical hemispherectomies in order to stop incapacitating seizures. These patients can “grow up normal, not impaired. They're not paralyzed, they're normal human beings.”

Sid and friends celebrate Holi, the Hindu festival of colours, in New Delhi in March 2015. (Provided by the Gupta family)

Isha acknowledges that as excruciating as it was to make those decisions back in the winter of 2014, the surgeries saved her brother’s life. She takes solace in the fact that when “I think about my brother, there is someone there for me to think about.”

And despite his limited brain function, Sid’s situation is not the worst-case scenario sketched out by the doctors prior to his first surgery — namely, a “complete vegetative state.”

Recounting Sid’s story brings Raghu to tears, but he is ultimately proud of his friend’s recovery.

“The doctors said he wouldn’t be able to eat, he wouldn’t be able to stand… he wouldn’t be able to do so many things, but he’s doing a lot of things. He eats, he swallows, he tries to write the alphabet with his hand and doctors said he would never be able to do those things.”

While it’s hard to quantify his progress, Isha believes Sid has beaten those dire early expectations.

“Compared to where my brother is now,” she says, the doctors “were about 40 to 50 per cent wrong.”

As a form of physiotherapy, Sid's father, Sushil, encourages his son to dance to Hindi music, as seen in this video Sushil recorded in July 2015.

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