"We didn’t want cancer to change him. So we wanted to make sure that we first make this fantasy story that Batman is calling him and telling him that these pipes will make him Ayaan man" - Emraan Hashmi
The Kiss of Life is about desperation; the sheer terror of a parent grappling with this nightmare of watching his son fight to stay alive.... It is also about hope, courage and resilience. Finally, it is really about a boy who fought the disease with a great deal of dignity.
"We were advised [by the doctors] to tell him that he was fighting this disease and talk to him about the C word. Otherwise he would start distrusting people. We had to tell him that he was fighting this monster…" Emraan Hashmi
January 2014. Four words changed actor Emraan Hashmi’s life: “Ayaan just urinated blood”. In the coming months, Hashmi’s world unspooled slowly. Life cast him in a role no actor in any part of the world would want to play—that of a father forced to watch his son battle a terminal illness. His son was diagnosed with Wilms’ tumour, a rare cancer that affects children. He was four.
The Kiss of Life: How a Superhero and My Son Defeated Cancer chronicles this period in Hashmi’s life. “It tears you apart inside. Hearing your child has cancer is worse than being confronted with your own mortality. But we couldn’t cry in front of him,” he says. His wife Parveen let herself go just once, for about five seconds. Then she stopped. “She might go outside and cry but never in front of him,’’ he says. In an industry where personal is strictly private, Hashmi's opening up of this period in his life is brave. It is a bare-it-all. “I had to get everyone’s consent,” he says. “My life has changed so drastically in four years. Every year, there is something that comes down. I lost my mother, my aunt and my son got cancer. But I have been lucky in life. Maybe life is trying to teach me a lesson.”
Narrated by Hashmi in first person, the book has been written by 21-year-old Bilal Siddiqi. He spent months trailing Hashmi trying to extract the story from the pain—in person, the vulnerable father that Hashmi is in the book is almost like Batman, covered up by a persona of a star rather than just a bewildered father. Siddiqi's own brush with cancer stripped away any sense of distance and made it much more real. “My father had thyroid cancer,” he says. “I was in class eleven when this happened. I would Skype with my father every day. He was in America and we didn’t want my mother to know. So we told her that he was shifting hotels and that he had no WiFi.” His grandfather died recently of the Big C.
A helpless and terrified Hashmi, unable to cope with the enormity of his son being diagnosed with cancer, took refuge in fantasy. “We were always very concerned with the psychological impact,” he says. “He is a very lively, happy-go-lucky kid. We didn’t want cancer to change him. So we wanted to make sure that we first make this fantasy story that Batman is calling him and telling him that these pipes will make him Ayaan man. That made it slightly bearable for us that in his mind he knew this would make him stronger.”
It is this story that both Ayaan and Hashmi clung to. Batman surfaced each time Ayaan fumed at being denied pizza or when he needed to undergo a procedure as part of the treatment. Even going to Canada—where Hashmi chose to go for treatment with a little help from actor Akshay Kumar, who felt like he had been “punched in the stomach” when he heard of Ayaan’s diagnosis—had a little bit of the cape crusader's magic. Kumar lost his father to cancer when he was 15. “The disease that no one deserves… the Cloud that comes but never passes,” he writes in the foreword.
At SickKids in Toronto, however, the doctors wanted them to be truthful. “We were advised to tell him that he was fighting this disease and talk to him about the C word,” says Hashmi. “Otherwise he would start distrusting people. We had to tell him that he was fighting this monster… which was kind of like the superhero story.”
Ayaan, despite the kind of procedure that he was going through, the constant tests, the operation that cost him a kidney and chemotherapy, remained courageous. He was a normal child battling a larger-than-life disease, and for most of the part living life as he knew it. He wanted to eat pizza. He played with Lico the dog. He watched Mr. Bean, dreamt of being a superhero, and more than ever, he wanted his father, who often took off to Mumbai for work, to stay with him. “It was more difficult for us,” says Hashmi. “For a four-year-old, ignorance is bliss. You don’t freak out when you hear cancer. It was the funniest thing. When he went to the washroom and passed blood in his urine, he was happy; it was colour. But we were freaking out.”
Hashmi was shooting for three films through this period. None of them would do well. The dates were fixed and when he told his son that he would be back soon, it could be three months later. Technology helped. There was Skype despite the time difference. But it was never enough. Hashmi narrates an incident where he tries to have a conversation with his son, who is eating breakfast, and refuses to engage. “I know you are upset but the pilot trapped me and brought me back to Mumbai,” he says. Ayaan asks him why he just didn’t take the next flight to come back. Hashmi says he didn’t get a ticket and promises to come back with presents. Ayaan turns around to tell him that he doesn’t want any presents, just him.
The battle between the demands of everyday life and coping with the reality that his son was fighting for his life wasn’t easy. “I also felt that I wasn’t contributing enough to the wellbeing and recovery of my son. I didn’t want to fail as a parent. My contribution was only financial and that wasn’t enough. It made me angry,” writes Hashmi. “Adding to that anger and tension was the doctors’ responses when I asked them if Ayaan would be cancer-free after his chemo ended: ‘Hopefully, he will.’ There was a question that lingered at the end of every conversation and there was never a sense of finality or conclusiveness.”
This lack of certainty is what parents as well as cancer patients live with—this shadow that lurked and continues to loom, even if it is in the background. “The first question is why my child? And then the next question is why anyone’s?.... For a child it is the choices we make for them. It is what parents go through—anger and guilt. But there is no clearcut answer what causes the tumour,” he says.
Enveloped in a fog of fear that just wouldn’t lift, he writes about going to astrologers—a host of them—desperately looking for an answer. There is helplessness, anxiety and a battle of inadequacies. The Kiss of Life is about desperation; the sheer terror of a parent grappling with this nightmare of watching his son fight to stay alive and dealing with the ugly side of falling hair, low haemoglobin and the aftereffects of chemo. It is also about hope, courage and resilience. Finally, it is really about a boy who fought the disease with a great deal of dignity.
Hashmi and his wife have learnt not to overprotect Ayaan, but it has been life-changing. In the past four years, Hashmi has dealt with a series of losses that ripped his life apart. His aunt, his grandmother and his mother, who passed away just as Ayaan recovered. “Cancer doesn’t come with any warning. It could knock on your home any time,’’ he says. Sugar is one thing that he has cut out completely. He sits with a plate of fruits—a rainbow of superfood carefully arranged—and a bottle of water. This less than two degree of separation with cancer has hit home with Siddiqi, too. “I have cut down from drinking two cokes a day to just one,’’ he says.
As for Ayaan—a boy who insisted on running a race in school, falling down several times, picking himself up determined to reach the finish line just so that he could do it—embodies truly the spirit of how winning doesn’t matter. “He really is a live wire. He would take my phone when I used to visit. He would play games on it. And lose them. But it doesn’t matter to him. He is just as happy losing,’’ says Siddiqi. He may just be Ayaan man.
‘Oh, I had cancer,’ Ayaan shrugged.
I watched Ayaan and his buddies play from a seat in the corner of the park. After a while, once they were done, they started walking towards me. I overheard a conversation. One of the kids had asked him about his slight shift in appearance.
‘Oh, I had cancer,’ Ayaan shrugged. ‘Right now the doctors give me chemotherapy. Vincristine and dactinomycin.’
I was stunned when I heard this. I had no clue that Ayaan knew the terminology and the names of the medicines. I have always maintained that he is a sharp child and his ability to grasp information is extraordinary. Children do tend to be like that and register a lot more than we believe they do. Ayaan, in this situation, had probably picked up the words during the several sessions at the hospital. SickKids had told Parveen that we must inform Ayaan that he was fighting cancer and was taking the medicines to recover fully and bounce back. According to them, keeping the child in the dark had adverse psychological effects. Luckily enough for all of us, Ayaan’s final chemotherapy session was scheduled on 27 May.
On the morning of his last chemotherapy session, Parveen woke him up at quarter to seven. He brushed his teeth and came back to the room to see Parveen holding out a neatly ironed shirt that he was supposed to wear. He shrieked and ran back into the bathroom. I rushed inside and caught him, before he tried to lock himself in.
‘What happened, Ayaan?’ I asked him, as he broke into tears. ‘I don’t want to go there!’ ‘Where?’ ‘The hospital,’ he sobbed. ‘Don’t take me to the hospital! Every time Mama takes me there she makes me wear a shirt for chemo!’
When we took him out that morning to the hospital, there was no wild snowstorm. It was now summer in Toronto and the streets were clearer than they had been back in January and February.
Parveen had figured out a way of keeping Ayaan amused in the car. She would buy a new Lego toy for every chemo session and had mastered the art of completing it along with him in that hour-long journey to the hospital. We usually applied a sensation numbing patch over his port in the car, an hour before the chemo session. That morning he protested and how! Avi had to pull the car over, and the two of us had to pin him down and hold his hands as Parveen applied the patch.
After that tussle, Ayaan sat quietly, brimming over with anger. He didn’t speak a word. He just ignored us and all our friendly overtures. He even refused the iPad and chose to look outside the window instead. We decided to just let him be and give him some space for a while. Parveen had mentioned to me that Ayaan would exhibit anger quite often. The entire situation had left him frustrated. He didn’t like being bogged down this way. He liked his freedom, he liked running around and playing physical sports. The mental and physical exertion was immensely taxing for him, probably even more than it was for us.
Parveen and I hopped up from our seats out of fear. We almost contemplated running on to the field and getting him out of there. But then, we saw he was on his feet again. He began to run.
Parveen and I sat down reluctantly, almost at the edge of the seats.
The other kids were way ahead of him. In a bid to catch up with them, he pushed himself harder. He took a few more steps and then crumbled to the ground again. He fell harder this time. But this time, he got up even quicker. I looked at Parveen and saw that she had tears in her eyes. She pulled down her sunglasses to mask her tears. Because by now, everyone knew about Ayaan’s condition and their eyes were on us. I kept a straight face, despite the choking feeling.
Ayaan continued running. The others had completed the race by now. He had just about completed half of. His speed had dropped but he continued to run, taking tiny, sure-footed steps towards the finish line. Everyone watched him with bated breath. As he crossed the finish line, everyone cheered for him. His friends, the parents in the audience, the teachers, the principal and even the other participants. I had started walking towards him from the sidelines to see if he was okay. It was getting too much for me. I was expecting him to look hurt because he didn’t win the race. But instead, he turned, searched for me briefly and looked me right in the eye. He winked and flashed me a thumbs-up!
It was too much for me to handle, so I excused myself and walked towards the car.
‘You were so good, Ayaan,’ I said. ‘I’ve never seen anyone finish the race so fast despite falling. Everyone’s so proud of you! Did you see everyone clapping for you?’
‘Papa,’ he replied. ‘After the race, all my friends were crying because they didn’t come first.’
I remained silent as I gazed back into his big, brown eyes.
‘But I told them that it’s okay,’ he continued. nonchalantly. ‘At least we participated. At least we had fun. Some of my friends even told me that I fell a couple of times and came last. But I told them that I completed the race. Isn’t that more important, Papa?’
The excerpts are from The Kiss of Life published by Penguin Random House India.
The Kiss of Life: How a Superhero and My Son Defeated Cancer
By Emraan Hashmi with Bilal Siddiqi
Published by Penguin Books India
Price Rs 399; pages 185