The waiting room

Reminds you of the railway station, the crowd and cacophony, the chai and the stink. Train whistles, the incomprehensible announcements and the strain to listen for your own train. But this is a different waiting room.

Here only those people wait, whose trains have derailed, or are about to. They are trying to repair the tracks, push and pull to get the train back on track and somehow make it run, so they can leave for home. A few never do. 

Here they dont say ” train no so and so has arrived on platform number so and so.” Here it is ” Bed no 102″ and Kamble and Banerjee, the names and the numbers, and the call to feed or meet the doctor or sign something you have not read.

I am in the waiting room of an ICU. All around me is chaos. Sea of people, waiting to catch a glimpse of their loved ones, waiting for that ray of hope, that word from the doctor that can change despair to a smile or bring a frown and a tear. Noisy, crying, sharing, yet so distant from it all. Hearing it all, but not absorbing.

Hospitals are a part of life. And death. I am at the same place I was slightly more than two years ago. Same hospital, same ICU, same waiting room. I lost Baba here. He was already lost, but here I lost his physical being. All around me are faces, in despair, but still hopeful as they cross the nights of nightmares. 

When you think it cant get any worse, it does. And we get used to that and then there is a new low. How much the human mind can accept and get on with life, feels like a trial and error test.

Why does she have to suffer so much? In the past so many years, I have seen her lose her speech and her smile, her walk and her zest for life. A vegetable, that breathes and swallows, with a beating heart. That is about it. Just pain and more pain, which she doesn’t feel, or maybe feels and does not  express. Cancers, and then free from cancers. But not from this hell called dependence. Not from this journey that is a constant struggle for survival.

Who will I take home from here, a whole being or a part? A person who always smiled at me, now closes her eyes and shrinks away as I talk to her, or touch her.

Do your job, dont worry about the consequences. I was reminded today. Do your best, dont expect anything. Maybe that is the learning. And emotions? That are ready to flow, that have to be pushed back because there is so much to be done.

I try to work. In an effort to remain sane. Not break. I have to be strong and stronger, specially when I am powerless. Someone else pulls the strings and we dance. I do- the biggest fallacy. Who are we? Who am I? My face is expressionless, as I listen to the doctor’s verdict. Impassive but with a storm inside. 

Life sucks. Death sucks more. But maybe it is the end of suffering, pain and despair. But can’t it be painless? Among so much pain and pleasure, something goes on- that they call life, as it sits in the waiting room, for death. Somebody give respite from it all,  she needs to rest. In peace. 

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Sanyam- the one who tolerates

He was born almost 18 years ago. A bundle of joy for the young parents. At a small nursing home in Kolkata. A nursing home that was ill equipped to handle complications.

Sleeping baby
Sleeping baby

The parents were married just 7 months previously. They had never heard about birth control. Like a lot of families in the conservative community she was married as soon as she completed graduation, where her parents only worried about a good ख़ानदान  for the daughter, she was married into a भरा- पूरा business family. She was 22, naive and had a big joint family around her. Sounds like bliss. She had a mom in law, a ज़ेठानी and other family members to look after her through the phase of pregnancy. It did not matter that she did not get enough rest, she had high blood pressure, she had no voice to ask for any special treatment just because she was carrying, and she did not even have a room to call her own. All the family babies were born in the neighborhood nursing home. What was good enough for others was good for her too.

Coming back to the present. Sanyam is almost an adult today. He is a fun-loving boy who is always super excited. Life has given him so much. He loves to talk and how he talks! He has to be literally shut up as he starts getting on your nerves. He has a great sense of humor, a quick repartee for anything you say. He needs company, anyone will do, my mom, who barely speaks also works for him, he is still not sure why she doesn’t communicate though and keeps trying. Her assistant will also do, currently he is learning Marathi from her. Already fluent in Hindi and Bangla, Has a Facebook account and regularly posts pictures and likes what his friends post. Loves celebrating all festivals, wearing new clothes, travelling. Of course he hates studies, like everyone else his age. Idyllic life.

But he is different from other boys his age. He does not go to a school, he does not play and run or read books or watch TV. At a very early age, his parents knew something was wrong. He did not move on his own, he did not turn, he did not crawl. When he was a year and a half, he was diagnosed with cerebral palsy. The lack of oxygen at the nursing home turned out to be a curse for him. Delivery in 7 months, complications and lack of oxygen, need to rush to a bigger hospital with a life support system, which took almost an hour in Kolkata traffic. It was enough to damage a lot of his nerves and change his life and that of others around him forever.

Growing up with the pain
Growing up with the pain

Life is all about physiotherapists for this young man. From a toddler to a teenager, he has been rushed from one doctor to another, from one temple to another, with hope and prayers, from Mumbai to Hyderabad to Delhi. His mother is a fighter. She has found the money and the guts, to take him, carry him wherever needed, up and down 4 floors in Mumbai, whenever she thought there was some hope. From the quack in Delhi who pulled his legs till he screamed, to the biggest surgeon in India, she took him everywhere, in the hope that he would walk one day. That he would be able to do his basic tasks on his own.

Enjoying the simple gifts
Enjoying the simple gifts
life from a wheelchair
enjoying life from the wheelchair

His optic nerves are damaged beyond repair, he can barely see with a -11 power. His eyeballs are not stable but twinkle behind the heavy glasses. If he stands up, the floor swims before him. His legs are too weak to carry his weight. His back is curved. But his mind is alive. After multiple surgeries, he is able to walk aided with a walker. He can eat on his own. He has a mobile which he uses to listen to the radio. And you should hear him laugh. He always laughs the loudest in the house, unashamedly drooling away, always super excited about the smallest pleasures of life. His ears and nose work overtime to cover up for the weakness of his other organs. He hears you before he sees you and recognizes you by your voice. Every time the doorbell or the phone rings, he pipes up- will someone answer that? He loves to listen to music and sings loudly in his harsh broken voice along with the singers. His favorite TV show is Tarak Mehta which he mostly listens to.

with casts and bed sores
with casts and bed sores

He is also a foodie. Loves to eat Maggi and pizza and all kinds of spicy and tasty food, and his mom indulges him. His favorite pastime is tearing up paper into small bits and pieces which is a good exercise for him as well. His facebook world is a gift from his mother who wants for him for every mother wants for her child. In real life, Cerebral palsy is not as glamorous as Kalki would make you believe. Not when you need to clean him, bathe him and tend to all his basic necessities in life, deal with bed sores and pull his pants down when needed. Not when you don’t know how long you can continue that, he is growing taller and heavier, and you are growing older and frailer. Not when you wanted a life too, and your life turned out to be all about him. With just financial support from family, this gutsy female and her beautiful son duo struggle every day of their lives, with physical and emotional crutches.

learning to walk
learning to walk

The social stigma never goes away. She is still asked- why did you spend so much money on him, he still can’t walk. क्या फ़ायदा हुआ? And she looks away. They never understand or even try to.  She gets sympathetic looks but the world needs her to be the normal wife and बहू to cook and look after her spouse and family as is expected of any well-bred married female in India. She continues to do that and she fights for him and somewhere in the journey, she has lost her youth and naivety.

This is his life
making the best of life

But Sanyam is her strength. His vocal energy and enthusiasm for life is so infectious, he puts ‘Anand’ to shame. Every time she calls out his name, she knows she has to be tolerant, the way he is. Patience is a virtue she has learnt dealing with the struggles. I often wonder what goes on in his mind, behind the happy-go-lucky facade, in that active brain of his. He prays every day, thanking God for the blessings showered on him and is every bit as normal as you and me. Sometimes more so, we worry about a small cut and a headache, I have never heard him complain about his disability or the fact that he is dependent. His mom never made him feel that, just made him feel loved. Sanyam is special.

Celebrating life
Celebrating life