It was a wintry December morning of 2012. I lay snug inside my hillock of blankets. I hated winters. I detested the chills, the piercing stroke of the raw freeze. I would give anything to stay there, inside my cozy hillock for the rest of the day.
Not long ago, there used to be a time when I would sleep like a baby. That day, there was a click and a strangled monotonous beep and I thrust my hillock away sprinting for the fax machine, forgetting my slippers, my sweater and the chills. Desperately, I hit the buttons and finally I had the fax in my hand. I ran with it to the balcony of my dingy one-bedroom apartment and began reading.
That was it! It was my promotion letter. It was like a waking dream. I had been eyeing at this promotion for the past five years. CEO takes a great deal of tenacity and steadfastness. I had been working like a machine for so many years. In the stupor, I sat down on the old rocking chair lying in the balcony and told myself- “Another thirty grand a month.” It would cover up the expenses for a few years now. The frosty cold crept into my bare toes clambering up my veins infesting my body from within, but I didn’t care. This was one true moment of repose that had returned to me after decades, I had almost forgotten what it felt like to be reassured.
On other days, I would be running around my unkempt apartment at this hour, piling up sheets, segregating files, running chores, finishing last moment reports and scuttling for office.
It was a holiday that day. I thought of the word- holiday and mocked inside. For the first time, in years, I looked around only to see the neglected plants, cobwebby ceilings, dust ridden shelves and bird roosts right there in the balcony. A tiny bird screeched there hopping amidst the straw, eager to fly like the bigger birds. I was not a fan of birds or a believer of mutual coexistence; in fact I had a dire phobia of any winged creature. However, I was alone in my flat and I didn’t mind a little company. Those birdsong were the only rhapsodies against the death-like silence prevailing in my house. So I had leased them this tiny area of my balcony where they flourished without encroaching upon my domain inside the doors.
The windows facing the balcony had mirrored glasses and as I was scanning my surroundings, a shadow in those mirrors drew me in. I stared blankly for a long time in those bloodshot eyes floating like ghouls amidst the sunken dark sockets. I remembered sleeping for a couple of hours at night. I could not remember the last time I had slept for more than two and a half hours. I ran my icy fingers over my face. It felt different from the last time I had stroked my face like that. I traced the lines at the corner of my lips and worked my fingers up along the eyebrows and the forehead trying to stretch the skin, but it was too limp; my hairs were grayer than before. The shadow looked like a woman in mid-forties. I was thirty- four years old. I was engrossed. I was lost in that cold gaze. For a moment, I forgot the world, the endless hours of the tireless work, the future, the savings, everything. I was lost in the remote look in the eyes of that pale woman.
Suddenly, something hit my lap and I felt a squirm on my thighs. My blood curdled. My heart stopped and reflexively I just stood up from my chair shirking my gown convulsively in frenzy. A petrified moment passed like that when I finally stopped, conjuring my senses again. I looked around on the floor and at a distance lay that tiny bird palpitating. She had surely fallen off from the nest overhead. I could have saved her, but my nerves got in the way. I looked at that tiny ball of flesh. It was so mellow, so fragile. She was a little baby with scanty fur. I saw her vibrating unformed wings and sighed in pity. I wanted to help her, but how? I was no doctor and there was no doctor of birds that I had ever heard of. It must be in terrible pain, I was wrought with regret. I came back inside and shut the door behind. I could not stand that wriggling anymore.
To divert my mind, I decided to prepare breakfast that day. That was my first breakfast in 2012. After that, I resumed my work and I forgot about the world all over again.
Soon, it was lunch time. I closed all my files and left for the Children’s Hospital. I grabbed a bunch of orchids along the way and entered the intensive care unit. My son passed a coerced smile at me. Not everyone could make out when he smiled or cried or writhed inside that frigid body, but I did. It was his tenth birthday. He no longer understood the meaning of birthdays. I did not know what to get him on this day. A normal ten year old kid would ask for a PSP or a cycle, a cricket kit or a football, but he made no demands. He could not. I would have made him his favourite lunch, but tubes were feeding him. This ICU-3 of the Children’s Hospital had been his home for the last six and a half years now. As a gift, I asked the nurse to give him an extra dose of pain killers that day. It would be his greatest gift, although most of the pain killers had stopped working on him now.
My son was diagnosed with severe X-linked Duchenne type Muscular Dystrophy when he was two and a half years old. By the age of five, he had had two operations for cataract and was diagnosed with oculopharyngeal muscular dystrophy. He stopped walking altogether by the age of six. At eight, his intelligence quotient fell down to twenty per cent lower than that of the children of comparable age and sex and he suffered from myotonia of the tongue leaving him speechless. Ten now, he had been detected with Dystrophia Myotonica a day before his birthday. My child has no future. He is gradually dying since years on his bed in ward- 3. There is no known treatment of this disease in medical science. I have seen him degenerate day by day.
There was a time; I used to have a life too. I fell in love with a man and married him at the age of twenty-two. We had a great life in the posh and we were so happy together. But, after two years our marriage fell apart. A month after our divorce, I had this cherubic healthy boy. I was a single mother and I had to stand on my heels all day long to make things work for us. I did not even get the time to mourn when my husband left me. But, we were doing well. I had a decent job, a beautiful home and we had each other. Today, when I look at my baby lying stoned on the bed, I sorely regret those moments that I missed when I left him at the babysitter’s to go to the work. If only I had a chance to talk to my child for once! What lay on the bed in front of me was not my spry boy; it was a murky silhouette of him. A toothless, paralyzed shadow that could not talk or hear or see anything. I am afraid that I would forget the illustrious laughter that adorned him when he was a baby; his wobbly little feet, that mischievous glint in his eyes peeking through the mushy curls scattered across his pretty face. I am afraid of losing those wistful memories of lulling him to sleep every night and the fond reminiscence of those dewy eyes that looked for me and glimmered with ecstasy when I would return from office in the evening. Why him? Why my baby? This is such a rare genetic anomaly. He did not even get to grow up. We had so much to do.
I miss him running around the house with his gun shooting at me. He wanted to be a cop. Sometimes, I wonder would he have actually liked to become a cop if he grew old. Will he get to grow up at all? We never had the time to talk about such matters, we didn’t get to talk about anything except candies, Teletubbies and when serious, about brushing teeth. That was the most serious talk I have ever had with him. There were so many times I scolded him and stopped talking to him. I wish I could take that back. We got so less time, so very less time to live. During the first five years, I used to think about cure, plan for future, and fantasize about miracles; all of that withered slowly with the dawn of stark reality. Now, I just made sure that I could make his stay as comfortable as I could. It was such an irony; I would have more satisfaction in arranging his funeral, than his birthday now. At least then, he would rest in peace.
I cafuned him, and I remembered how his frequent fractures had started bothering me. He would fall a lot. After that, he started walking on his toes. I could not understand this bizarre behaviour. He was getting slow; he could not climb the stairs easily. His calves and deltoids began to grow. I ran from one paediatrician to another looking for answers. Finally, the inevitable plunged in. I touched his long haggard face and the nightmares retorted brazenly. His endless wails through the night, his pained cries, his wriggles, his suffused tears, and the trauma of thirteen operations conducted so far, the perpetual prescription of medicines, his agonizing calls for help, the tired groans and yowls! I went white.
For as long as he could speak, he would ask me to end it. This is probably the last thing he spoke to me. The day he was born and the day today, I loved him the same. All this misery brought us even closer. But, even after everything, I could not help my baby. I was financially drained, mentally devastated and physically wrecked, but what use was it anyway? My son was imprisoned inside his own body for years now. He did not deserve that. Nobody could ever deserve that.
His ailment has no cure. He will go one day soon. But, does it have to be this excruciating way? Do I have to wait for all his body to degenerate while he lived? Isn’t it something to happen in the grave, not when alive?
I filed a petition in the High court demanding assisted euthanasia for my son, but it was rejected. I then took my plea to the Supreme Court of India as the last resort. My case is still open in the Supreme Court and I am stern in my stand. Seeing me, a lot of people with similar fates have come up to support me in the court. I hope the others would give up their conventional thinking one day as well.
I returned home from the hospital at night that day. It was pouring heavily. I ran into the balcony to collect my laundry. I saw the tiny bird on the floor. A swarm of ants surrounded her. The birdie laid blue, stifled breaths escaping her. I forgot about the clothes and went inside.
I brought my sleeping pills, dissolved it in water and shoved it down the birdie’s gaped beak. All my fears had slithered away. I stroked my fingers over her tiny head and she stopped breathing. I still don’t know why I did that, but I picked the dead bird and buried her in the garden in front of my apartment. A vicarious contentment swept across me. I never intended to harm that bird, but she landed up bruised and decapitated because of me. She was dying a prolonged harrowing death being ingested by the ants alive.
I don’t know what the Supreme Court of India will decide for my son, but this was my balcony and under my jurisdiction. The birdie did not deserve that agony. I did what I thought was right.
I wish no mother has to say this ever, but I want the Supreme Court of India to end it too!
“I’m not afraid of being dead. I’m just afraid of what you might have to go through to get there.” – Sarah Palin