Wednesday , March 22 2023

The Right to Set Free- Part II

Published Date: May 8, 2016

Continued from Part I

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 the same age and the doctors said he suffered from myotonia of the tongue leaving him speechless. Ten now, it was confirmed he had Myotonic Dystrophy, just a day before his birthday. My child has no future. He is gradually dying since years on his bed in the same ward- 3. There is no way known yet, in medical science to stop the progression of this disease. I have seen him degenerate day by day and with that also I have seen myself looking back at my life.

It was like any girl’s; I fell in love with a man and married him at the age of twenty-two. We had a great life, and we were happy together. Two years was what it took for our marriage to fall apart. A month after our divorce, I had my cherubic healthy boy in my arms. Being a single mother, I had to be on my toes all the time to make things work for us. I was proud of me, we were doing great, had a decent job, a beautiful home and we had each other. I missed him when I left him with the babysitter, but I had not much of a choice then.  Then, my job never let me have the time with him and now it was his illness.

What lay on the bed in front of me was not my spry boy; it was a murky silhouette of him, a toothless, paralysed shadow. It scares me that I would forget the illustrious laughter that adorned him when a baby. His wobbly little feet, the 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 reminiscences 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 had so much to do.

I miss him running around the house. We did not get to talk about anything except candies, tele-tubbies and when serious, about brushing teeth. There were so many times I scolded him and stopped talking to him. I wish I could take that back

During the first five years, I used to think about possible cures, plan for the future, and fantasize about miracles; all of that withered away. Now, I just made sure that I could make his stay as comfortable as I could. It is 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 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 muscles would refuse to carry him anymore. I ran from one paediatrician to another looking for answers, but I did not want to hear what they had to say. I touched his long haggard face and the nightmares retorted brazenly. His endless wails through the night, his cries, his wriggles, his tears, and the trauma of the 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 help him. The day he was born and the day today, I loved him the same. 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 way? Do I have to wait for all his body to become a lump of mass while he lived?

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 as the last resort. My case is still open in and I am still standing my ground.  My mind refuses to rest, it was dark outside. I had to go back home.

It was pouring heavily. I ran to the balcony to collect my laundry. I saw that tiny bird on the floor. A swarm of ants surrounded it. The bird lay in pain, i assume, stifled breaths escaping it. I forgot about the clothes and went inside.

I brought my sleeping pills, concocted it in water and shoved it down the little bird’s 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. Contentment swept across me. I never intended to harm that bird, but she landed up bruised and decapitated. She was dying a prolonged harrowing death being bit upon by the ants, alive.

I don’t know what the Supreme Court will decide for my son, but this was my balcony and under my jurisdiction. The bird did not deserve that agony. I did what I thought was right.

“I’m not afraid of being dead. I’m just afraid of what you might have to go through to get there.”- Pamela Bone