A child was born to the Shirpurkars in November 2000. It was a joyous occasion for family and friends.
Then came the time for the child to toddle around. Something was wrong, the parents thought. He was falling more than walking. He struggled to maintain his balance.
Soon came the diagnosis. He had a rare genetic disorder: Duchenne muscular dystrophy. His muscles would continue to waste away. There is no cure.
It was not easy to find a school that would accept him and his companion disabilities. “Inclusion must start in school. Else, discrimination will persist. My teachers played the most important role in my life, preparing me for all that I have ever done and will do in my life.”
He would go on to graduate in Economics. “I wanted to do Engineering, if only to prove a point to those who tried to dissuade me, given my condition. Then I thought about it and chose my favourite social science—Economics.”
He was a brand ambassador for the first Wheelchair Accessible Beach Festival in India in 2017. He is associated with an NGO working for inclusion of disabled individuals.
He has been a blogger right from the age of 13. “I enjoyed writing while in school. My early efforts were rather immature. But I kept at it as a hobby. In college, English was a compulsory subject, including blog writing. That led to my current blog.”
And at 22, Dhruv Shirpurkar has just published his first book, Solace. “After I managed to finish my graduation, blogging became a full-time profession. Wrote more. Readership improved. Gave me confidence. Why not write a book? Publishers and agents were taking too long. Given my health condition, it was wise not to delay. Another bout of pneumonia and anything could happen. So, I went ahead and self-published my dream project, this book.”
This book is a collection of the random thoughts of a young writer who is disabled in body, not in mind. His thoughts force all of us to think.
In his introduction to the book, Dhruv makes it clear that the book is not his biography. “I have not done anything extraordinary in my life, but it is more of a book that is meant to help others.” Until recently, he was quite bothered that he had not done anything extraordinary. He suspects many of his readers might have the same concern.
This is what he wants to tell them: “It doesn’t really matter what we have done and what we have not done in life. We all have some role to play in God’s divine plan whether we know it or not, whether we believe it or not. We are all worthy and we matter.”
My disability is not my identity
Inclusion must start in school
Dhruv remembers looking for a school as a painful phase for him and his parents. Many schools were unequipped for a student like him. Many were unwilling. After a long and frustrating search, Nalanda Public School accepted him. “Thankfully my school was very inclusive.”
He narrates a school incident in the book. He had gone to the washroom (with his attendant). His classmates were making a lot of noise. The teacher punished them by making them hold their ears. When Dhruv returned, he was excused from the punishment as he was not present.
Later, his angry classmates passed some insensitive comments. “If this is the privilege he gets, then even we will also come on a wheelchair and pretend to be disabled, so that we will be excused,” someone said. Dhruv angrily responded, which worsened the situation.
Then, one of Dhruv’s favourite teachers stepped in. She made everyone understand that they were all classmates with inherent differences that all should accept. She went on to encourage everyone to speak up about their grievances, just to clear the air.
“My teachers have really taught me what it is to love someone unconditionally even though that person may not be related to you. If you cannot love your fellow human beings, then you have achieved nothing in life. This is what made my schooling the most extraordinary experience of my life. It truly makes me feel that I did not just go to a school of education, I went to a school of life.”
It is positive to let go
It is not easy for many, especially the members of a disabled person’s family to accept that the problem cannot be resolved. Yet, in hope and in desperation, they keep trying, even resorting to “pseudoscience”.
In his book, Dhruv suggests that leaving hope is not bad.
“Sometimes you have to stop hoping for something better and start living. Leaving hope is not bad if it allows you to take control of your life. It allows you to bring change. It guarantees success, something hope won't. You underestimate yourself thinking change will come. You are the source of change, and everything is in you. A change will come only if you work towards it. Otherwise, you are hoping for a miracle and miracles are not miracles if they are expected. Positive attitude involves letting go when you know there is no point hoping. So, stop hoping and start living.”
The idea of death
What does he think of death? Dhruv is calm and clear when he shares his thoughts during a conversation.
His idea of death is simple. “We accept death for others, not for ourselves and not for others without whom we cannot live."
His medical condition forced him to ponder about death right from puberty. “Unlike what was expected out of me, I did not develop negative emotions about it. Instead, I came to the conclusion that there is no point struggling with it. I decided to accept it and forget about it. Not about the event itself, but about its consequences.”
Is he comfortable talking about death? “Yes. But I am conscious of speaking about it because of the way people respond to it. This response is dictated by their belief that I have certain negative emotions attached with it and I have not accepted it.”
He compares dying to growing. “One doesn’t know while growing what good will come of it until he experiences it. I also do not know what good will come out of it. A child plans what he or she is going to do in life with the conviction that nothing is going to deter him or her from achieving those goals. However, the child cannot see the future. This is how I like to think about death.”
Solace has more
Solace has more to make the reader think and smile. Like the personality sketch of a cool cat. The reason why the microwave went on strike. Then there are some interesting poems. There are also some profound thoughts on spirituality.
The book may or may not occupy the pride of place on your bookshelf. But you will want to keep it within reach so that you can connect to Dhruv whenever life throws a seemingly insurmountable obstacle at you. His approach and words might help you overcome and move on.
Dhruv wants his readers to “hold on, continue on your journey and don’t listen to anyone else when your heart calls out to you.”
A website had run Dhruv’s story under the headline, “Don't look at him with pity; look up to him for his grit.” If this book makes you shun sympathy and embrace resolve without fearing failure, Dhruv would have succeeded in his mission to help you succeed.
After all, he wrote this book for you.
To buy your copy of the book, please write to Dhruv at firstname.lastname@example.org.
Image credits: Dhruv Shirpurkar; Rediff.com; Mid-day.com
How do you deal with cancer? What do you say and what do you want to hear? When you are the patient and when you are a dear one? Do you cling on or let go? Do you deny or accept?
This is how Reacher's mother and her two sons (Jack and Joe) spoke about her impending death. In what is probably a goodbye meeting with her sons, she talks about her cancer that is about to take her away. It is not an easy conversation. Yet, it is just the kind of "death literacy" conversation that Dr M R Rajagopal advocates.
This was written some years ago, soon after I finished reading Lee Child's book, The Enemy. After I recently watched the Amazon series on Jack Reacher, I revisited the blog.
I have extracted what is relevant to this post and introduced subheads. The text I have added is in italics or within square brackets.
Thank you, Lee, for permission to use this very real and touching part of your exciting work.
After hearing from her doctor that she was dying, Jack Reacher and his brother Joe are in Paris to meet their mother. They know something is wrong, they know about an accident. This description is in Jack’s words.
We heard slow shuffling steps inside the apartment and a long moment later my mother opened the door.
She was very thin and very grey and very stooped and she looked about a hundred years older than the last time I had seen her. She had a long heavy plaster cast on her left leg and she was leaning on an aluminium walker. Her hands were gripping it hard and I could see bones and veins and tendons standing out. She was trembling. Her skin looked translucent. Only her eyes were the same as I remembered them. They were blue and merry and filled with amusement.
‘My boys,’ she said. ‘Just look at the two of you.’
She spoke slowly and breathlessly but she was smiling a happy smile. We stepped up and hugged her. She felt cold and frail and insubstantial. She felt like she weighed less than her aluminium walker.
She turned the walker around with short clumsy movements and shuffled back through the hallway. She was panting and wheezing. I stepped in after her. Joe closed the door and followed me. My mother made her way to a sofa and backed up to it slowly and dropped herself into it. She seemed to disappear in its depth.
‘What happened?’ I asked again.
She wouldn’t answer. She just waved the enquiry away with an impatient movement of her hand. Joe and I sat down, side by side.
‘You’re going to have to tell us,” I said.
‘We came all this way,’ Joe said.
‘I thought you were just visiting,’ she said.
‘No, you didn’t,’ I said.
They find out
She had broken her leg when a car hit her.
Then the X-ray revealed that she had cancer.
Nobody spoke for a long time.
‘But you already knew,’ I said.
She smiled at me, like she always did.
‘Yes, darling,’ she said. ‘I already knew.’
‘For how long?’
‘For a year,’ she said.
‘What sort of cancer?’ Joe said.
‘Every sort there is, now.’
‘Is it treatable?’
She just shook her head.
‘Was it treatable?’
‘I don’t know,’ she said. ‘I didn’t ask.’
‘What were the symptoms?’
‘I had stomach aches. I had no appetite.’
‘Then it spread?’
‘Now I hurt all over. It’s in my bones. And this stupid leg doesn’t help.’
‘Why didn’t you tell us?’
She shrugged. Gallic, feminine, obstinate.
‘What was to tell?’ she said.
‘Why didn’t you go to the doctor?’
She didn’t answer for a time.
‘I’m tired,’ she said.
‘Of what?’ Joe said. ‘Life?’
She smiled. ‘No, Joe. I mean I’m tired. It’s late and I need to go to bed, is what I mean. We’ll talk some more tomorrow. I promise. Don’t let’s have a lot of fuss now.’
We let her go to bed. We had to. We had no choice. She was the most stubborn woman imaginable.
She's only sixty
The two brothers found her refrigerator “stocked with the kind of things
that wouldn’t interest a woman with no appetite.” They started talking.
‘What do you think?’ Joe asked me.
‘I think she’s dying,’ I said. ‘That’s why we came, after all.’
‘Can we make her get treatment?’
‘It’s too late. It would be a waste of time. And we can’t make her do anything. When could anyone make her do what she didn’t want to?’
‘Why doesn’t she want to?’
‘I don’t know.’
He just looked at me.
‘She’s a fatalist,’ I said.
‘She’s only sixty years old.’
She had made up her guest room with clean fresh sheets and towels and she had put flowers in bone china vases on the night stands. It was a small fragrant room full of two twin beds. I pictured her struggling around with her walker fighting with duvets, folding corners, smoothing things out.
We’re too late; she made sure
Next morning, their mother was still asleep when Jack went and got breakfast.
‘She’s committing suicide,’ Joe said. ‘We can’t let her.’
I said nothing.
‘What?’ he said. ‘If she picked up a gun and held it to her head, wouldn’t you stop her?’
I shrugged. ‘She already put the gun to her head. She pulled the trigger a year ago. We’re too late. She made sure we would be.’
‘We have to wait for her to tell us.’
She told us during a conversation that lasted most of the day.
We started over breakfast. She came out of her room, all showered and dressed and looking about as good as a terminal cancer patient with a broken leg and aluminium walker can. The way she took charge spooled us all backwards in time. Joe and I shrank back to skinny kids and she bloomed into the matriarch she had once been. A military wife and mother has a pretty hard time, and some handle it, and some don’t. She always had. Wherever we had lived had been home. She had seen to that.
First you live, then you die
‘I was ten when the Germans came to Paris. I thought that was the end of the world. I was fourteen when they left. I thought that was the beginning of a new one.’
‘Every day since then has been a bonus,’ she said. ‘I met your father, I had you boys, I travelled the world. I don’t think there’s a country I haven’t been to.’
‘I’m French,’ she said. ‘You’re American. There’s a world of difference. An American gets sick, she’s outraged. How dare that happen to her? She must have the fault corrected immediately, at once. But French people understand that first you live, and then you die. It’s not an outrage. It’s something that’s been happening since the dawn of time. It has to happen, don’t you see? If people didn’t die, the world would be an awfully crowded place by now.’
‘It’s about when you die,’ Joe said.
My mother nodded.
‘Yes, it is,’ she said. ‘You die when it’s your time.’
‘That’s too passive.’
Some battles can't be won
‘No, it’s realistic, Joe. It’s about picking your battles. Sure, of course you cure the little things. If you’re in an accident, you get yourself patched up. But some battles can’t be won. Don’t think I didn’t consider this whole thing very carefully. I read books. I spoke to friends. The success rates after the symptoms have already shown themselves are very poor. Five-year survival, ten per cent, twenty per cent, who needs it? And that’s after truly horrible treatments.’
We talked it through, from one direction, then from another. It was a discussion that should have happened a year ago. It was no longer appropriate.
I waited for Joe to ask the next obvious question.
‘Won’t you miss us, Mom?’ he asked.
‘Wrong question,’ she said. ‘I’ll be dead. I won’t be missing anything. It’s you that will be missing me. Like you miss your father. Like I miss him. Like I miss my father, and my mother, and my grandparents. It’s a part of life, missing the dead.’
We said nothing.
‘You’re really asking me a different question,’ she said. ‘You’re asking, how can I abandon you? You’re asking, aren’t I concerned with your affairs any more? Don’t I want to see what happens with your lives? Have I lost interest in you?’
We said nothing.
‘I understand,’ she said. ‘Truly, I do. I asked myself the same questions. It’s like walking out of a movie. Being made to walk out of a movie that you’re really enjoying. That’s what worried me about it. I would never know how it turned out. I would never know what happened to you boys in the end, with your lives. I hated that part. But then I realized, obviously I’ll walk out of the movie sooner or later. I mean, nobody lives for ever. I’ll never know how it turns out for you. I’ll never know what happens with your lives. Not in the end. Not even under the best of circumstances. I realized that. Then it didn’t seem to matter so much. It will always be an arbitrary date. It will always leave me wanting more.’
We sat quiet for a spell.
‘How long?’ Joe asked.
‘Not long,’ she said.
We said nothing.
‘You don’t need me any more,’ she said. ‘You’re all grown up. My job is done. That’s natural, and that’s good. That’s life. So let me go.’
We owe it to her
As she wanted, they went out to dinner.
[We rode a cab part of the way and then walked.] My mother wanted to. She was bundled up in a coat and she was hanging on our arms and moving slow and awkward. But I think she enjoyed the air.
We all ordered the same three courses. We ordered a fine red wine. But my mother ate nothing and drank nothing. She just watched us. There was pain showing on her face. Joe and I ate, self-consciously. She talked, exclusively about the past. But there was no sadness. She relived good times. She laughed.
‘Why didn’t you tell us a year ago?’ Joe asked.
‘You know why,’ she said.
‘Because we would have argued,’ I said.
‘It was a decision that belonged to me,’ she said.
Next morning when Jack woke up he heard Joe talking to the nurse.
She told me she was my mother’s private nurse, provided under the terms of an old insurance policy. She told me she normally came in seven days a week, but had missed the day before at my mother’s request. She told me my mother had wanted a day alone with her sons.
Later, Joe found Jack getting ready to leave.
‘You leaving?’ he said.
‘We both are. You know that.’
‘We should stay.’
‘We came. That’s what she wanted. Now she wants us to go.’
I nodded. ‘Last night [at dinner]. It was about saying goodbye. She wants to be left in peace now.’
‘You can do that?’
‘It’s what she wants. We owe it to her.’
[At breakfast] my mother had dressed in her best and was acting like a fit young woman temporarily inconvenienced by a broken leg. It must have taken a lot of will, but I guessed that was how she wanted to be remembered. We poured coffee and passed things to each other, politely. It was a civilized meal. Like we used to have, long ago. Like an old family ritual.
We left thirty minutes later. We hugged long and hard at the door and we told her we loved her, and she told us she loved us too and she always had. We left her standing there and went down in the tiny elevator and set out on the long walk back to get the airport bus. Our eyes were full of tears and we didn’t talk at all.
This is a slightly modified version of the original post, which you can find here.
As I devoured one Lee Child book after another, I got lost in the world of Jack Reacher. He is the Grim Reaper to those who dare to cross him. The large man has an equally large heart intent on doing the right thing. Given all the bone-crunching action in Reacher's world, this part in The Enemy, was a surprise.
With Lee Child's gracious permission I reproduced this extract as a tribute to my friends, especially those in palliative care, who deal with death in close proximity almost every day. They try to make every departure, always too soon, as comforting as the movie the dying must leave.
Thanks, Lee! Thanks, friends!