Till the Last Breath . . .

by Durjoy Datta

  Pihu knew the doctor wouldn’t find anything abnormal in the tests and would order some more tests. Back home, she fished out every research paper and every document ever written about the disease. Looking through various reports she found a research team in a hospital in Delhi which specialized in stem cell research and developing experimental new drugs for the disease. She found the email ID of one of the doctors on the team—Arman Kashyap, supposedly a genius, and shot across an email giving him the details of her disease. She was desperate. She didn’t want to die and she didn’t deserve to.

  That night, when she was done reading about her disease and had cried enough to make herself tired, Venugopal called again. He had been texting her constantly. Pihu knew for sure he had been doing some reading on the disease too.

  ‘What did he say? Did he order all the blood tests? Did he guess anything? Any alternative causes? Differential diagnosis?’ he asked, the panic in his voice apparent.

  ‘The reports come tomorrow. I know they will be clean. He hasn’t guessed anything yet.’

  ‘Maybe they will find something that we didn’t. We did the tests just once. And these government pathological labs make mistakes all the time. Where did you go? Apex Hospital?’ Venugopal blabbered, hoping against hope. This time he wasn’t even convincing. He had checked and rechecked the reports; Pihu was sure of that. They weren’t incorrect.

  ‘Let’s wait for tomorrow.’

  ‘Are you okay, Pihu?’

  ‘Yes.’

  ‘Are you scared?’

  ‘Very,’ Pihu said and started sobbing softly. She had promised herself that she would be strong and not cry. She couldn’t do it. She had read about the suffering of people who had the same disease as hers, and she felt terrible. Having read horrendous accounts of how patients lose control of their body as it slowly rots away, she started to question the fairness of it all. Why me? Of all people! She cursed the mirror in front of her for it was lying. She wasn’t healthy. Her insides were rotting away, slowly, bit by bit.

  ‘It’s going to be okay,’ he assured her.

  ‘Nothing is going to be okay. You know that! I am dying, Venugopal …’

  She cried a little more on the phone and eventually drifted off to sleep. She didn’t know if Venugopal had waited for long before he disconnected the call. It didn’t matter. She was alone in this. She had to get used to it.

  Things only became worse the next morning. Her denial had given way to acceptance, and the acceptance of her condition depressed her. With a heavy heart, she checked all the websites she had bookmarked the day before, searched for cures on the Internet even when she knew there weren’t any, and checked if Dr Arman Kashyap from GKL Hospital had replied to her long, ranting mail.

  A little later, they were in the car, negotiating the early-morning traffic to the hospital. Pihu sat on the back seat, wondering if the doctor had any inkling of what was wrong with her. She hoped he would. And she hoped it wasn’t what she thought it was. The anticipation of the pain her parents would go through was getting unbearable.

  ‘Good morning,’ the doctor from the day before said. He was smiling. ‘The blood reports came clean.’

  A smile shot across her parents’ faces. Pihu remained expressionless as she looked at all the branded merchandise—pens, diaries, clocks and notepads—from the big pharmaceutical companies. Her mom folded her arms as if to say, I know it’s because of the stress. Her father absent-mindedly played with a plastic model of the human brain.

  ‘Are you still having some problem with your hands?’

  She nodded.

  ‘Any other problems? Difficulty in breathing? Anything?’

  She nodded. Now he’s getting it. Maybe. I would have made such a good doctor. She tried not to buckle and weep. Her parents were still distracted. She felt sorry for them. Again, she stuffed her pocket with a fistful of Éclairs.

  The doctor looked at her parents and started to ask them about their families. ‘So Pihu’s grandparents? They are still alive?’

  They let the doctors know whatever he needed and the doctor noted everything down on a small pad. She knew he was yet to make any sense of it. But he had a hunch about what Pihu had.

  ‘We need to do some more tests,’ he said, ‘to check the nerve reactions. Nothing major.’ The doctor smiled. Pihu smiled back at him. Does he know? Why is he smiling?

  ‘I am sure it’s because of stress. She is a medical student, you know. Lots of pressure, big books, late nights, you know? She is a brilliant student, topped the region in her board examinations. She wants to be a surgeon.’ Her mom’s chest swelled with obvious pride. The doctor nodded approvingly.

  ‘Do you know what’s wrong with her?’ her father asked, keeping down the fake brain.

  Please don’t ask, Dad. I am dying. Slowly. Please don’t ask.

  ‘Let’s wait for the results,’ the doctor answered and whisked her away to the testing room.

  It took the doctor three hours, a battery of tests and consultations with other doctors to come to the conclusion Pihu had reached days before. She had noticed the expressions of shock on their faces while her doctor discussed the case with other doctors in her presence. As they talked and looked in her direction, with pity on their faces, she was sure they didn’t know that she already knew. Some of them even called their counterparts in other hospitals for a second opinion.

  ‘Did you figure it out yet?’ she asked the doctor, who shifted restlessly in his place.

  ‘We are just getting a final confirmation from an expertdoctor in Mumbai,’ he said. She felt sorry for the doctor, too. Why should he be a part of the gloom that was about to engulf her family?

  ‘I know what I have, doctor,’ she said, her head hung low.

  ‘Excuse me?’

  ‘I am a medical student. First year, Maulana Azad. I did the tests myself.’

  ‘What tests?’ The shock on the doctor’s face snowballed into concern and pity.

  ‘I have ALS. I know there is no genetic history. I know there is no cure. I know that I am slowly dying. I could be gone this year or the next. But I will die eventually. I have read all there is to read about the disease. I know what’s going to happen. I will not be able to eat on my own, go to the bathroom or even breathe. You will cut a pipe into my throat to help me breathe or I might choke on my own saliva,’ she explained. She hadn’t discussed her painful future with Venugopal for she didn’t have the strength to. It looked like it could never happen to her. As she finally described her own death to the doctor, she came to terms with it. The news finally sank in. In that moment, all her dreams, her aspirations, her visions of herself as a doctor melted away and the morose faces of her parents stared back at her. Her eyes glazed over and she resolved to not weep. There is some mistake! This shouldn’t happen to me. I have done nothing to deserve this. I am perfectly healthy! Her heart cried out loud.

  ‘There are treatments—’

  ‘Riluzole, diazepam, amitriptyline. They will give me a few months more. A few days more of breathing on my own. I have read all about it.’

  She tried not to cry. The doctor didn’t want to give her any false hope. She had to be ready for what was coming next.

  ALS is a cruel disease. It starts with the patient becoming clumsy. You drop things, get tired easily, and the sensations in your limbs keep getting dimmer till paralysis sets in. After that, you’re at your helpers’ mercy. You can’t eat because your tongue and your jaw muscles will be too weak to chew the food. You can’t talk fast or for too long because your mouth will become tired after the first minute or so. You will be on crutches … before the wheelchair comes in. Soon, even that will be a problem because you won’t have the forearm strength to roll the chair. You will be paralysed and bedridden. There will be tubes running in and out of your body to help you eat, breathe and defecate. Machines will keep you alive. It’s a sorry way to die.

  ‘I am sorry,’ he said. ‘I wish I could do something. I can give you some books you
can read about people who have fought the disease. They didn’t win, but they died happy. You can’t lose to the disease.’

  ‘I would just wish for you to tell my parents. I don’t have the courage,’ she said and the tears came again. She tried to stifle her sobs the best she could. Never had she thought her parents would outlive her. What greater misfortune can there be for a parent?

  ‘You’re the most courageous patient I have seen in the longest time,’ he said and added with a pause, ‘I have a daughter. She is seven.’

  ‘Does she want to be a doctor too?’

  ‘Yes. You remind me of her,’ the doctor said, looked down at the reports in his hands and closed his eyes. Pihu wondered if he was praying for them to be wrong. She wondered how many death sentences the forty-year-old man had given before hers. The watery eyes of the doctor told her that he was still not used to it.

  ‘Let’s tell my parents?’ Pihu said, and clutched the doctor’s hand and slipped in some Éclairs. ‘Give this to your daughter from my side.’

  ‘Sure,’ he nodded and took a deep breath.

  Pihu took one too. The wails of her mother and silent groans of her father already resonated in her head and she felt dizzy. They entered the doctor’s chambers. Her parents’ eyes met hers and she knew they could see the horror. Their faces fell as if they knew what the middle-aged doctor was about to tell them. She went and sat next to her mom and held her hand. The doctor started to explain. The world blocked out. Her mind was blank. The denial of her parents, their shouts, their screams, their accusations against the incompetent doctor and the irresponsible hospital, their claims of their daughter being perfectly healthy—nothing registered in her brain. She had just one image seared on her retina.

  She was going to die, motionless on a hospital bed with a tube cut into her throat.

  4

  Kajal Khurana

  Kajal paced nervously in her hostel room. The news of Dushyant lying unconscious for three days had just reached her. It wasn’t the first time she had received such a call. When they were dating, she was used to going to the hospital, picking him up and cleaning up his shit. But the last such call was two years back. Today, she had suppressed the impulse to drop everything and visit him. He wouldn’t want to see me, she argued. Do I want to see him? Two years had passed since the last time they had talked.

  Kajal dialled the number.

  ‘Hello, GKL Hospital? Can I talk to the doctor of a patient admitted there? The name is Dushyant Roy.’

  ‘Hold on,’ the voice from the other side said. The waiting sound piped up.

  ‘Hello? This is Zarah Mirza.’

  Two summers before this one, Kajal was a second-year student and Dushyant was a year senior to her. It wasn’t until a few friends pointed it out that Kajal realized she was constantly being stared at by a senior. It was none other than the swearing, belligerent, infamous, drunkard of a senior with a penchant for getting into trouble—Dushyant Roy. Kajal hadn’t noticed his stealthy moves earlier, but slowly she started to spot him everywhere. She hadn’t made much of him earlier and thought of him as one of the many roadside ruffians from the mechanical department. Little did the rich daddy’s girl know that he was going to change her life forever. Forever began on the day Kajal was sitting idly in the library, looking blankly outside the window …

  Kajal looked at the open grounds of Delhi Technological University and felt disconnected. Two years had passed since she had started studying electronics engineering and felt more disillusioned with every day that passed. She wasn’t meant for Schrödinger equations and Fourier transforms, like many others studying with her. While many had resigned themselves to their fate as engineers for life, Kajal still believed she would be something more. At least she hoped. People with money can always do that—hope, change careers, do crazy expensive things, and call themselves travellers after buying travel packages to posh European countries and staying in beautiful resorts. Though Kajal had never been that type; she was just directionless.

  Her latest direction was to turn to writing. She had always been a voracious reader. From Sweet Valley High, the Hardy Boys, Enid Blyton when she was young, to David Baldacci, Dan Brown, Nicholas Sparks when she got older, to the heavier works of authors like Mohsin Hamid and V.S. Naipaul, she had read it all. She picked out a corner in the library and started to read from the page she had folded the day before. It was the latest book by Nicholas Sparks. Like every other girl, she had spent countless nights crying to his books, even though she steadfastly maintained that she wasn’t into romance novels and that she had never been a fan of Indian authors and their amateurish love stories set in engineering colleges.

  ‘Hi,’ she heard a voice from behind her.

  She turned around to see the guy who had been following her around college for the last few days, standing just over her shoulder. Her first feeling was of revulsion. His hair was tousled carelessly, his clothes looked like he hadn’t changed in days and his four-day beard just looked annoying. He wasn’t that tall; maybe 5’10” or 5’11” or even taller, she couldn’t tell because he was well-built for his frame. She imagined an Indian Vin Diesel. Not her type; she liked leaner men. Like Edward Norton. Like Imran Khan. Maybe a little darker.

  ‘Yes?’

  ‘Do you mind if I sit there?’ he asked, and pointed to the seat next to Kajal.

  Kajal hesitated and he took the seat before she could respond to the question. Rude, she thought. She liked that.

  ‘I have read that book,’ he said. ‘It’s just like the last one. The girl dies and everyone cries. All his books are the same book. I don’t know why girls still like him. They’re so predictable.’

  ‘I didn’t need to know that,’ Kajal retorted. She started reading, mindlessly. She forgot which paragraph she was on. It didn’t matter. A little later, she said, ‘Even if it’s the same book, the people are different and so are the emotions. It’s an entirely new experience every time. You wouldn’t understand. I don’t expect you to.’

  ‘As a matter of fact, I do. That is why I read all of them. Well, initially I just read one because I saw you reading it and thought we would have something to talk about. I ended up reading all of them,’ he claimed.

  ‘You’re such a girl!’ she giggled.

  He nodded approvingly. She wouldn’t have guessed that the guy who sat next to her shared the same taste for books as hers. She would learn later that he didn’t. Dushyant had always been more interested in books that took him beyond the realm of the obvious. He read books people hadn’t heard about. A memoir of a serial killer. An out-of-print trilogy about a deranged doctor. And more.

  Her eyes roved around nervously as an uneasy silence hung between them. He looked sturdy, the veins in his forearms were consistently thick and they disappeared inside his T-shirt, which fit him snuggly. He was undeniably muscular. He smelled very strongly of cologne, as if he had tried to look presentable at the last moment. He could have shaved, at least!

  ‘Dushyant,’ he said and stuck his hand out.

  ‘Kajal,’ she said and left his hand hanging mid-air. He retracted it, blushing. He didn’t meet her eye. She could tell he was nervous. His legs shook. Kajal started reading again. The same paragraph, over and over. Dushyant sat there looking at her, and at his palms, rubbing them together, looking here and there, shifting his feet and fidgeting with his phone.

  ‘I have been following you,’ he said, finally.

  ‘I have been told that,’ Kajal responded.

  ‘For two years …’

  Two years? Creep! Or … really sweet? Dushyant had turned beetroot red. He couldn’t meet her eyes. Instead, he gazed at his own weathered palms. He looked vulnerable, embarrassed and needy. Maybe even a little high. Kajal let a little smile slip. Dushyant caught that and blushed a little more.

  ‘So, tell me, what do you read?’ Kajal asked. Two years?

  Dushyant smiled, and his eyes lit up like the fourth of July. Quite frankly, his choice in book
s scared her.

  They dated for eight months. They had come a long way from the time they had first met in the library and had talked about books, his waning obsession with weight training, her growing dissatisfaction with her career choice, his problems with his parents, her loving sisters, and last but not the least, his enduring fixation with her.

  Dushyant was never the perfect boyfriend. Her friends hated him with all their heart, but not as much as her sisters. Kajal was tall—almost 5’5”—and never had a hair out of place. One could imagine a news presenter for an idea of what she looked like. Her clothes, understated, were always perfectly matched. She wasn’t fond of bright colours and never aimed to stand out. She aimed to soothe. Her fair skin, the defined nose and the confident walk meant business. She wasn’t a pushover.

  Dushyant was abrasive. He was quarrelsome. He was possessive. It took Kajal one month to realize that Dushyant was beyond obsessive, almost to the point of being schizophrenic. He drank too much, he smoked too much, and he loved her too much. He had waited two years to tell her he loved her. He swore he would spend a lifetime doing it. Sometimes, it was sweet. It looked to her like he cared; on other occasions, she was scared. Not scared that they would break up and never see each other again, but scared of what he would do to her. Within a month, she had changed into someone she didn’t recognize any more.

  At first, Kajal used to like the little tabs Dushyant kept on her. He used to get jealous at the mention of her ex-boyfriends, fume at her for spending more time with her friends, chide her for staying out till late, and ask her to not to drink in his absence. Kajal found it thoughtful. Who wouldn’t? Dushyant made her feel wanted. Loved. No matter what the time of day, no matter what he was doing, one call from her and he would go running to her. He never let go of her hand, hugged her whenever she needed it, and made love to her like no one else had. Kajal felt like she was enveloped in a protective bubble wrap, something that would absorb anything with the potential to harm her. But soon, the bubble wrap would become suffocating.