by Durjoy Datta
‘The rules are made by doctors much more experienced than him.’
‘Experience doesn’t count for everything,’ Zarah grumbled. She could feel his hands on her thighs. The maggots reached her face. They entered her nose, her ears. She was losing it.
‘Fine, go defend him,’ he said, irritably. ‘Okay, anyway, junk it. Want to go for lunch?’
‘NO! I DON’T! WILL YOU LET ME WORK, PLEASE!’ she yelled.
‘F … Fine …’ the intern spluttered and left the room. Zarah’s thickly veined eyes followed him outside the room. She wanted him dead. The maggots were gone. She still felt filthy.
Zarah had lunch with a girl intern that afternoon, like the many afternoons before that. She liked her. She was sweet, caring and very hard-working. She liked that. But the best part about her was she didn’t talk about boys or marriage or family.
‘Hey, listen …’ she said.
‘Yes?’ The girl looked up from her files.
‘What do you know about Lou Gehrig’s disease? ALS?’ she asked nervously, even though she knew.
‘Fatal. Multi-organ failure. A nerve-related problem. You can’t really expect a patient to live beyond five years. Why are you asking? Do you have a patient?’
‘Yes, a girl.’
‘A girl? It’s not seen in anyone less than fifty years.’
‘She is nineteen. First year, Maulana medical school.’
‘Are you serious?’ she asked, shocked. Zarah handed over the file to the girl, who pored through it from behind her blue-rimmed spectacles.
‘Yes. She is getting admitted here. It says here she experienced a lack of sensation during an examination. I just googled her name. She was All India Rank 3 this year.’
‘That’s sad,’ she whimpered and handed the file back to her. It was no secret that the patient was dying.
‘I know. I hate these diseases. No underlying cause and absolutely no fault of the patient. I wonder how she must be feeling,’ Zarah said and sighed.
‘Don’t get too attached to the patient. Remember what Dr Mehra taught us. Be emotional about the disease, not the patient.’
‘Yeah, right,’ she replied and shook her head.
‘I am serious.’
Zarah kept mum and they continued to eat their food in silence. She flipped through Pihu’s file to go over the basic details of the disease’s progression in her case. She spotted something very uncommon, if not downright strange. None of the effects of ALS on the body are reversible, but Pihu had regained some use of her hands, and her speech had become clearer over the last few months. How can that be? Can that be the reason why Arman is trying to treat a person whose death sentence has already been written? Is she the answer to the disease?
She knew that Arman was on the research panel of doctors looking for a cure for ALS. She made a mental note to ask him. After all, he did admit to being an external consultant to the patient. There was something definitely amiss with this situation.
Just as she finished eating, her phone rang.
‘It’s someone asking for the doctor of Dushyant Roy. Dr Arman is not available. Should I put the call through?’ the voice from the other side said.
‘Sure,’ she said and heard the call-transfer beep. ‘Hello? This is Zarah Mirza.’
‘Hi … Umm … Hello, Doctor, I am Kajal. I wanted to know about a patient admitted in your hospital. Dushyant Roy?’
‘Oh, yes. He has a liver problem. Are you a relative?’ she asked.
‘Is it serious?’
‘He will live,’ Zarah said. ‘Serious, but curable. May I know who you are?’
The line disconnected.
6
Pihu Malhotra
Pihu looked around the room she had grown up in. The room on whose walls she had always imagined she would hang her diplomas and degrees. She looked at the photo frames with pictures of her as a toddler, the bedsheets and the tonnes of books she had so lovingly arranged. She wondered if she would get to read even a third of them. She was distraught. For all the times she had craved to be in a medical school, she got only three months. It had been nine months since then. The loss of sensation meant she had to drop out of medical school as soon as four other hospitals—one in Delhi, two in Bangalore and one in Mumbai—gave the same verdict, each one with more finality than the last. Her disease had progressed faster than anyone had anticipated. Within two months of detection, she had trouble walking without crutches. Soon, eating had become a problem and she couldn’t chew for very long. Fifteen minutes of activity made her breathless and tired. Her muscles were slowly losing their strength and integrity. The paralysis slowly set in. Life for her became a constant battle for survival—to see the next morning. To see her parents around her, to hold their hands and recount memories till it felt like she had lived them twice. It became a constant struggle to forget what was coming for her. She had committed herself to her impending death sentence. She had just a few excruciating months to live.
All this while, she made sure she sent across a mail every day to the young doctor, who was a part of the research team looking for a cure for ALS, in New Delhi. Sometimes, it was about the pain of being an ALS patient. On other occasions, it was something interesting she had read in a medicine book. His mailbox had become like a personal online blog-cum-punching-bag-cum-stress-ball for her. She knew for sure that he must have marked her mails as spam after the third one. But she kept sending them …
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
My mom still hasn’t stopped crying. She tries not to cry in front of me, but she doesn’t make it. Dad is a lot better. I got myself checked again. Six months, they say.
Give or take a few months. I can’t walk for very long.
Regards
Pihu Malhotra
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
Sorry to disturb you again. But I am crying. For the past two days, I haven’t been able to sleep. I think of all the bad things that are going to happen to me. Why? Why me? I didn’t do anything wrong to anyone. Neither did my parents. I just … I am sorry.
Regards
Pihu Malhotra
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
I finished the book on cancer diagnosis. It’s very nice. Wish I was in the lab and could see the carcinomas myself. I envy my classmates. They must be having so much fun. I wonder how Venugopal is doing and whether he still misses me. And I hope he has made good friends there. I wish I was there. I am sorry to disturb you again. I am sorry.
Regards
Pihu Malhotra
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
I can’t walk any more. I see a shining new wheelchair in the corner of the room. I don’t want to use it. I want to stay in bed. I am scared. I also choked on my food once. People say I am dying. They tell me time is running out. Why doesn’t it feel so? Why does it feel that time has slowed down? Every moment lingers like it will never pass. It feels like death is moving away from me and I am running to get there soon. The sooner it comes, the better. I just want to be put out of my misery. Is a dead daughter better than a dying daughter?
I am sorry.
Regards
Pihu Malhotra
The mails never stopped. It was like a vent for her frustration and her growing anger.
Four months after the first email, she received a mail from Dr Arman Kashyap, GKL Hospital. She jumped at the sight of it! And had wondered later why she had done so. Arman Kashyap was a handsome man, tall, fair and with rimless spectacles that made him look very intelligent. But the short-cropped hair made him look like a badass and he stuck out like a sore thumb in the group
photograph of all the doctors at GKL Hospital.
There was no formal introduction, no asking how she was or even who she was, instead there were a set of questions he wanted her to answer. She had answered them to the best of her ability, like she would do as a student. Along with her answers, she attached a report on what she thought about the various researches that had been done on ALS. She wondered if she was being a smart-ass, but then thought she had too little time to care.
To her surprise, Arman had replied almost immediately. The language of the mail suggested he was impressed, but it was cleverly concealed. It was late in the night and Pihu typed out a long mail. It took her four hours to type it, one slow clumsy letter at a time. She had to take breaks because it was hard for her to sit up straight for that long. She didn’t forget to mention that in the mail. Minutes after she had hit the send button, exhausted, she crawled to her bed and drifted off.
The next morning, the first thing she did was to log into Gmail and refresh it till her fingers hurt. Inbox (1). The mail contained just one line. It was a link to a website and beneath it was a combination of letters, numbers and special characters. She clicked on the link, which took her to a zealously protected website, and punched in the combination in the field that asked for a password. The website opened up like a whore’s legs on a payday and lay open a world of information on her disease. In the next few hours, she had devoured whatever she could find on the website. What really grabbed her attention were the clinical trials GKL Hospital was carrying out on ALS patients. They were only moderately successful. Just as she was reading through it, she received another mail that explained how she was ineligible for it.
Dr Arman Kashyap
To Pihu Malhotra
I am sure you have gone through the clinical-trial reports. Unfortunately, you’re not eligible for it. Section 5. Para 6. I apologize.
Regards
Dr Arman Kashyap
Pihu looked for Section 5. Her face drooped. Since it was a disease which only inflicted older people, clinical-trial permissions had not been granted for anyone below the age of thirty. She had slumped in her chair and switched off the computer. She was tired.
For the next two months, she hadn’t sent a single mail to the doctor in GKL Hospital and she didn’t receive any. Her condition had been worsening steadily, her spirit and body slowly dying. She and her parents had braced themselves for the inevitable. She was going to die. Her parents were going to cry and lament for the rest of their lives. There was nothing that could have changed that. She was in a wheelchair. Only liquids were allowed, chewing food was out of the question. There were times she had tried to eat solid food and had choked on it as the muscles in her food pipe gave way. One day when her suffering had reached a peak, she sent a mail to Arman, updating him about her pitiable condition. She wanted it to be a long mail, but her body gave up within half an hour.
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
This could be my last mail. To you or to anyone. The disease has progressed to its last stage. It took me twenty minutes to type this. I am constantly exhausted. It’s like a big boulder is crushing my lungs, snuffing the life out of me. I need assistance for everything now. I can’t even clean myself after going to the washroom. I am sure you know what happens. My parents are being brave. They don’t cry in front of me. I spend my hours sleeping or smiling at my relatives. They know I am dying too. It’s a strange feeling. I am scared at times. Sometimes I think about how I am going to die. Will my lungs collapse? Or my heart? And then I am relieved at times. It’s going to be over. I ask my father to read me my books from medical school. Maybe I will be a doctor in some other life, if there is anything like that. I just want to thank you for replying to my mails and showing me your research website. It meant a lot. Thank you. I need to go now. Best of luck.
Regards
Pihu Malhotra
From what she had learnt about the disease, she knew she didn’t have more than three months to live; some doctors gave her even less. The fear in her parents’ eyes multiplied every day, their grief slowly becoming unbearable for them. During those days, her relatives and cousins had started to drop in to see her for the last time. Pihu, confined to her bed, would smile at them. And cry when she would be alone. For the most part of the day, she would sleep. Her body, whatever was left of it, was constantly tired and exhausted.
She began to get bedsores. Her mom would spend hours shifting and rolling her on the bed to prevent the infections from the bedsores from spreading. They only became worse. She would stay up and cough for hours on end. Saliva drooled from her mouth but she couldn’t bring a hand up to wipe it. Day after day, she would spend all her time lying on the bed, staring at the ceiling as her father read to her from medical books and journals. She could only talk in mumbles; her tongue had become weak too. She was trapped in her dying body, waiting for death to come.
Her father clicked pictures of her every day, trying to capture his daughter for the last few times. Visiting doctors always left the home with their heads hung low. They knew the next time they could find her dead.
A few days after she sent her last mail, a package arrived at the front door with Pihu’s name on it. Her father opened the box gingerly. The contents were wrapped very carefully in bubble wrap. There was a spiral-bound file of papers and a box with syringes, bottles of coloured liquids and capsules.
‘What’s this?’ her father asked as he sifted through the contents.
She shook her head and looked at the letter that lay with everything on the bed. Her dad read the letter, which stated in clear, simple words that these were the medications they were trying out on the clinical-trial patients at GKL Hospital. The handwriting was lucid, not like a doctor’s.
Dear Pihu,
Follow the instructions as written in the file. Keep it to yourself and your family. Don’t get doctors involved. The drugs have a reasonable success rate at our hospital. They stall symptoms in some cases. They reverse the effects in others. Think before you decide. Don’t hold me liable.
Regards.
Her father looked at her for an explanation and she told him about the mails and the website. She asked her dad to read the file that had all the details about the progress of the patients the medicines had been tried on. They spent the whole night reading through every case, every patient and every dosage that she had to take. Whether she should take the medication or not was a no-brainer. She was dying. She had just three months to live, give or take a few weeks. A 20 per cent chance of living was an infinitely better option than to continue living like the undead for the next few months, and then, in any case, die. She made her father learn how to use the syringes. After a few times of puncturing his own veins, he got the hang of it. From the next day, she was on the medication. For the first few times, his fingers trembled every time he had to pierce Pihu’s flesh. And then it became easier.
Slowly, things changed. Two months later, she mailed the doctor again.
Pihu Malhotra
To Dr Arman Kashyap
Hi Dr Arman,
I am better. It is working. For the first time, I took solid food. Thank you.
Regards
Pihu Malhotra
With the mail, she attached a report she and her father had maintained for tracking her progress. The experimental drugs were working on her. She wasn’t coughing relentlessly any more and had regained some of her strength. She could sit up and read on her own. The sensation in her hands was coming back, though they were still far from being perfect. Her parents were happy they were getting their daughter back.
But things weren’t as rosy as they seemed to be. A month later, Dr Arman asked her father to get her admitted to the hospital. The symptoms had shown relapse in the case of many patients in the clinical trials.
&nbs
p; 7
GKL Hospital
Three boxes and most of them were books. Pihu had finished packing her life into boxes labelled ‘FRAGILE’. Her parents were waiting outside, their eyes hollow and devoid of hope. They held hands. Occasionally, a teardrop streaked down their cheeks. For the last two months they had been the happiest they could have ever been. They had watched helplessly as their daughter almost died lying on her bed, and then saw her gain her strength back. Now, they were scared she would go back to her previous condition. The drugs, after the initial promise, had stopped showing combative properties against the disease. As a result, all the symptoms were back in the case of a large chunk of clinical-trial patients in New Delhi. Dr Arman had asked them to admit Pihu into the hospital too.
‘Let’s go?’ Pihu said and held out her hand. Her mom held it with both her hands and caressed it. She could see the pain in her mother’s eyes and false hope in her dad’s. They got into the car they had hired to take them to Delhi. Her father had taken a transfer to Delhi. His boss, for the first time, was sympathetic.
The taxi reached Delhi at eight in the morning. They went straight to the hospital instead of the apartment they had rented. Dr Arman had scheduled some tests for her. By mid-afternoon, they were done. She also selected a room which she would move into later that night. Her parents wanted her days in the hospital to be comfortable, but she still chose a double-bed room.
‘Beta, why don’t you take a single room? It will be much more comfortable,’ her mom suggested.
‘Mom, I don’t need a single room. Plus, it’s very expensive, Maa.’
‘As if …’
Her mom broke down and Pihu wrapped her arms around her. She kept weeping and mumbling in sobs till the time they reached home. The taxi driver unloaded the boxes and carried them to the apartment. He was instructed to keep the boxes near the door itself. Her dad went back with the driver to get some food and check in with the hospital about the arrangements.