Anonymous –
That was one day I would never forget. It was the day before my University finals. I had overslept and woke up in a panic; slightly tense about the amount of ground I had to cover before I could even consider writing those examinations. As I was getting ready for a long day ahead; I glanced at my phone and my heart stopped as I saw nine missed calls from my mother.
With a cold fear gripping me, I called her back only to find out that she was with Rajini at the Emergency Medicine department of the hospital associated with our college, as Rajini had lost her vision and was in complete altered sensorium.
To understand who Rajini is I’ll tell you a little bit about my family. We are a little bit different from the typical Indian middle class family – four of us children, my dad who worked hard to keep food on the table, my mother who practices medicine almost for free at her clinic (our garage), my grandfather, Rajini and our dog Max. Rajini is a twenty one year old girl who came from an agency two years ago to work as a maid in our home under a two year contract.
I wouldn’t call her a maid, I’d call her family. She used to do more than just cook and clean, she used to tie things together when Amma had too many patients; and she was a part of us.
I rushed to E-med that day after receiving news about Rajini, to see my mother -tired and dishevelled – and Rajini lying limp on a bed, sedated. How did she end up like that? Apparently she couldn’t understand where she was or what was being done to her. She had completely lost her vision and started to remove her clothes in panic and so was sedated, ventilated and admitted into the ICU. That was only the beginning.
Over the next few days, Rajini slipped in and out of consciousness. My mother and I took turns to be with her, feed her, take her to the washroom or change the bed cloth when she soiled her clothes.
My exams were a joke; but how do exams matter anyway when someone is hanging between life and death? They don’t but that doesn’t stop it from gnawing at the back of one’s mind.
Multiple tests were conducted to find out the cause for her unexplained fever and altered sensorium. All tests returned negative. They checked for tumours, for infections and for autoimmune diseases but all to no avail.
There was a ray of hope when she slowly recovered her eyesight and we thought she would pull through. Praying for a Christmas miracle, we landed in the hospital on Christmas Eve to find that Rajini’s fever spikes were worse than before, and that both her legs were now paralysed. We contacted her family but received no response.
The next day Rajini’s vitals crashed and she needed an emergency surgery to relieve the pressure inside her brain. The infection had caused an increase in CSF fluid – the same fluid that was supposed to protect and cushion her brain had increased so much in quantity that it caused a massive Hydrocephalus , and there was death in the parts of the brain that control speech , understanding and movement.
Before signing the consent form for Surgery, my father called me and asked me questions I had no answers to.
Was there any point in her living like a vegetable? Will she ever regain consciousness? Wouldn’t Surgery on her brain cause even more complications?
My father was tired and stressed. The hospital bills were mounting, my mother worked overtime to make up some of the money but was so tired as a result that she almost fell asleep and got into an accident multiple times while driving to and from the hospital. My younger siblings barely saw my parents at all. It had been fifteen days and we were already mentally, physically, emotionally and financially drained.
We were going to the hospital every morning with a renewed hope that she would get better, and returned home late in the night, disappointed.
Considering all these things, even though the surgery might not achieve much other than prolonging her life temporarily, my father decided to go forward with the surgery and give the young lady any fighting chance to survive.
The day after the surgery Rajini could not speak but she recognized me; smiled at me and feebly squeezed my hand. I left the ICU in tears, horrified that we had almost given up on her.
That was the last time I saw her awake. It’s been a month now and Rajini is still in the ICU. I wish I could tell you that she dramatically recovered after surgery but she didn’t. They started her on ATT (Antitubercular Treatment) for TB meningitis, because although no tests confirmed it; anything unexplained in India is treated as TB. Although we are all exposed to TB , many deadly complications of TB , like TB meningitis are prevented by giving a BCG vaccination at birth- part of the National Immunisation Schedule – and given to all children; or so we think. Rajini did not have a BCG vaccination scar.
In the last month, Rajini went through one more dangerous, complicated surgery. She is still barely conscious, and her leg has lost sensation, movement and reflexes. Over the past month I’ve learned about the hospital at which I studied from a patient’s point of view. I saw random acts of kindness from other patients in the hospital ; who tried consoling her in whatever language they could , tried to restrain her so she wouldn’t hurt her limbs when she was flailing around in delirium , they held her hand when she was poked with more and more needles every day. I learnt how both patients and their attenders cling to every word a doctor says for hope to get through the next day. I saw the doctors, nurses and my parents fight for Rajini’s life as a team.
Over the past month we have been through an emotional rollercoaster, and an upheaval like no other. Yesterday Rajini’s mother came and decided to take Rajini back home to her tribe in Orissa, six hundred kilometers away. Rajini was still barely conscious, catheterized and paralysed, the journey might kill her, we reasoned. We fought for her life all along, we argued, and it would probably need atleast another month of waiting to see if she improved and we would bear the cost of treatment. Her mother had the final word.
Tomorrow they will leave in an ambulance that will take them to the train station. I have recurrent nightmares that Rajini will not live to see her home. The worst part is we will never know, Rajini’s mother does not have a telephone.
I keep wondering why Rajini’s mother did not let us continue fighting for her life? Maybe it was because she lost two husbands and five of seven children at a very young age. She now accepts death and disease as an inevitable part of life. It’s not that she didn’t care enough, she couldn’t afford the treatment required for her family to live.
While more and more hospitals mushroom in the cities, there is a real dearth of doctors in rural India. Apart from a minority, most doctors are hesitant to work in the middle of nowhere – with lesser pay and recognition as compared to their city counterparts; and far away from their families.
On the other hand, health is a basic need. Isn’t it unfair that some people have a better chance to fight for life depending on which family they come from and which circumstances they were born in? Something seriously needs to change the way we approach health care. If administrators focus a little less on petty politics and more on providing everyone in the country with the basic right to life , by increasing incentive and support for doctors working in rural areas , and giving the underserved more access to health facilities maybe our country would be better off .
At the end of this tryst with fate, I’m sad for the suffering Rajini, her mother and my parents had to go through, angry that despite trying our best we may not have succeeded; and utterly heartbroken because everything Rajini went through could have been prevented by a simple BCG vaccine – a vaccine she should have received at birth.
Post script –
The opportunity to reflect and narrate a medical experience from a human angle was provided by the Health and Humanities Division of St Johns Research Institute. This article was published under ‘Contemplative Narrative’ category in early January.
Under the care of the Rehabilitation department and with the effects of the TB medication, Rajini improved slowly but surely. Rajini has since been discharged after four months of intensive care at the hospital. She reached her hometown in Odisha and is well on her path to recovery!
She’s able to talk, walk and her cognition is absolutely normal. I look back to the words I wrote and wonder at how we made it through, with no hope at all; but this goes to show that more often than not; there is light at the end of the tunnel and we’ve just got to hold on and give it every chance we’ve got.