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
I would like the time of my dying to be a time of celebration.
I would like my caring team to make me as comfortable as possible, so that I can spend the remaining time the way I want to.
I hope my family will accompany me on the path that I choose, and not drag me along in the direction that they decide on, even if they think there are certain miraculous solutions to be found there.
Respect life, respect death
I hope the custodians and practitioners of the science I have learned—the noble medical science—will be compassionate and remember that there is an art to healing as well.
I hope they will not succumb to some inner Frankenstein, programmed to believe that they are obliged to keep my heart beating, or that a beating heart is more valuable than a soulless existence; greater than the cost it inflicts on me and my loved ones.
I fervently wish that I am not imprisoned in a cold intensive care room, isolated from my family when I need them most.
I hope my fellow health professionals will permit themselves to recognize that just as they have a duty to cure my disease, if possible, they must also accept incurability when inevitable. And that just as they respect life, they need to respect death too.
Incurable, still human
No therapeutic scan has yet been created that can measure happiness. There is no medical intervention yet that can generate joy, but the love that I give and the love I may receive. If I am made physically comfortable within reasonable limits, this love could well be the only thing that matters as death approaches.
I believe I have a right to a compassionate and responsive medical system that will not reject the human being in me simply because my disease is incurable.
I hope I am not force-fed if I am no longer hungry; I hope my doctor will not fear administering a sedative, if I indicate that I want to sleep. I hope that if I reach out, my hand will be met with a friendly grasp in the darkness.
And, to everyone, who has given me abundant love, my family and friends; those who arrived as patients and their families and became fellow-travellers, teachers and partners; my many colleagues past and present—there must have been so many ways in which I could have treated you better. I hope you will not find it too difficult to forgive me my faults and weaknesses. If you can think of a few good moments that you and I shared, my life has been worth living.
The above abstract is from the book Walk with the weary: Lessons in humanity in health care written by Dr. M.R.Rajagopal. Yes, he is one, but it would be irreverent to call Dr. M.R.Rajagopal just a doctor.
He has held the hands of many as they walked the tortuous line between life and death. He has eased pain, wiped tears, restored dignity and more. And he continues to teach many to do all of that.
All of us need to read Walk with the weary. Because all of us are going to die one day. Because all of us deserve to live as we would like to until that last moment.
You learn the best when your device loses power. That’s when you drop down from your wish-world to hear the music of life around you.
Ugyen the young teacher in Bhutan was dreaming of escaping to Australia. Then he was posted at the most remote school in the world in Lunana, a tiny village nestled among the clouds.
He had come to teach rather reluctantly, but he kept learning as his device waited for solar powered resurrection.
He learnt the value of all that was around him. Like that of a piece of dried yak dung when you need warmth and food.
In what passes for the classroom, A can be for Apple and B for Ball, but C cannot be Car. Because no one knows here what a car is. It must make way for a Cow.
The aspiring musician, used to applause in the bars, learnt that a song is an offering to all beings and spirits. And that one must sing like the black-necked cranes. They are not concerned with who is listening.
See Lunana: A Yak in the Classroom
This film is the directorial debut of Pawo Choyning Dorji, the Indian-born Bhutanese filmmaker and photographer. Lunana: A Yak in the Classroom was nominated for the Best International Feature Film at the 94th Academy Awards (where a slap during the presentation won all the headlines).
Bhutan is a country that measures its economic and moral development in terms of gross national happiness. As an integral part of this, education is a must in every remote corner of the country. No wonder, the entire 56 people of Lunana walked two hours to welcome the teacher, who they hoped, as the village chief put it, “will give these children the education they need to become more than yak herders and cordyceps gatherers.”
A herder teaches Ugyen a folk song that celebrates the sacred bond between herders and their yaks. Later, far away in teeming Australia, as the indifferent patrons of the bar where he croons for money ignore his rendering of a popular number, he stops singing.
Then, from his heart, rises that folk song. It was his offering to himself.
Even if you are not into lessons, watch this film for the breath-taking views and its sheer simplicity. Or to simply tune into what is around you.
The new C is in the spotlight. The old C remains. There is no masking the fears about cancer. And there is no distancing the misconceptions.
Chanda. The name of the girl is not. But the snatches of conversation, more about her cancer than her, are all real.
Father to doctor: “She keeps getting fever and is so weak.”
Doctor to father: “Your child has blood cancer. We will have to start chemotherapy.”
Mother to father: “But she is only five. How can she have cancer?”
Chanda to mother: “Did you fight with Papa again? Don’t cry, I am there for you.”
Father to mother: “Never again will we cry in front of her.”
Father to mother: “I have no money left. Don’t know whom to ask. Let’s release an appeal.”
Stranger to parents: “Saw your appeal. Oh, she likes cars! Come, bring her, let us go for a ride. Keep this money. Why does it matter who I am?”
Mother to school principal: “Doctor said she is recovering and can start school. Please admit her.”
Principal of school 1: “If other parents come to know, they will withdraw their children. As it is, we are constantly fighting with parents.”
School 2: “What if her cancer spreads? Other children will also get it.”
School 3: “We can’t let her skip class every time she has to go for treatment. What is the guarantee she won’t get it again?”
School 4: “She must always wear a mask, sit separately and not mingle with other children.”
Mother’s letter to father: “I am going. I don’t want to spend the rest of my life looking after a cancer patient.”
Chanda to father: “Why are you crying? I am there for you.”
It was a hot day, with the tin roof adding to the heat inside. The children in the class were eagerly reciting a poem when the tinkling of a bell drew my eyes to the window.
It was a buffalo, followed by its minder, a girl of the same age as the ones heartily singing for my benefit. Some of the students waved out to her as she paused for a moment near the door.
She should have been in the class too; just that she had to swap her books for the buffalo … one of those days.
I was a guest, a rare visitor from another world, far away. A world many of them can’t see, not even on television, because you need electricity for TV. They assumed I was there to “judge” them and they were determined to put in their best, complete with safety pins to hold up torn skirts and trousers.
Plastic chairs walked in on human legs, as small boys staggered under the weight of the chairs for the visitors. Two girls, who seemed to have forgotten to smile, worked the hand pump to draw water for tea. They entered the headmaster’s room with trepidation, carrying cups filled to the chipped brim.
The teachers told me they were happy to have one boy back in class. He had gone missing for months, accompanying his parents as they travelled, yet again, to another district for sugarcane cutting. He was smart; at least on the days he was present.
It was chaotic to have two classes sharing the same room. But that was progress after years of learning in a teacher’s home, jostling for space with goats and cows.
The teachers did not complain about having to walk 2 to 5 kilometers every day as they divided time between schools. Jobs are not easy to come by, especially when you are handicapped by education.
The students did not complain about the irony of learning good deeds and good words when a drunken father beat them up at home and the mother thought nothing of unleashing a curse every time she called out to them to handle another chore.
As I walked out, carrying the precious coconuts and shawls they had gifted, I cringed at the memory of the pride I had felt just the previous day. A corporate king had praised my presentation that painted a rosy picture of the services he was rendering to society.
I had just woken up to the real world and smelt honest earth. They had served me endless cups of sweet tea and tall glasses of sugarcane at every village. Yet, something sad and bitter lingered, somewhere deep within.
My friend, who has chosen social development as his career (his specialty: taking science to remote schools) is not surprised at what I had witnessed 10 years ago. He is not stationed at the village that I had visited but assures me things have changed.
“Parents now realize the value of education. They make it a point to ensure that the children go to school.”
We have the virus to thank for it, he says. All those days the children were forced to stay at home, parents learnt the important role of teachers in education. “They were just not able to cope, even those who had a mobile phone. They realized that only education could give the children a future. And they cannot educate. They needed teachers as much as the children.”
For my friend and his team, it was a challenge to bring the teachers up to speed in the ways of the virtual. “They were fantastic. So much so that the first group we trained became role models for the government.”
Then there was the challenge of educating those children whose reality stood no chance of catching up with the virtual. “We prepared special books for them with plenty of pictures. One day, when they all go back to their real classrooms, we want all of them to be at the same learning level.”
Now that the children are back in the classroom, the teachers are facing a different challenge. “The children are distracted. It is a task to make them sit in one place and pay attention.” Even for the best teacher, it is difficult to match the addictive entertainment value of a smartphone.
My friend cautions me that this is a work in progress. And he does not yet have the all-important data.
Nevertheless, he is optimistic. There is at least one sugar mill that now ensures that the children of the laborers working in the sugarcane fields can continue their education uninterrupted.
The buffalo has not gone away. Hopefully, its virtual avatar now shares the class with the girl, instead of leading her away at the end of a rope.
All of us like surprises, at least the pleasant kind. Even when lit up screens have pushed printed pages to the background, you can delight your reader if you add a bit of wit to what you write. More so in the heading.
“Mosquitoes ‘play’ menace at Bal Gandharva, people ‘clap loudly’... to kill them!” screamed a headline just this morning. Bal Gandharva is a popular auditorium in the city where I live. “Instead of artistes, the mosquitoes had taken centre stage,” the report went on to say.
When a famous cricketer passed away recently, wordsmiths gave it a real tweak: “He took us for a spin, left without a Warne-ing.”
Of course, when you have been a famous cricketer, the pitch condition can disturb your stance even when you are alive: “Imran Khan c Constitution b Supreme Court of Pakistan.”
Technical glitches can get unappetizing for food delivery apps, especially when the media add a dash of spice: “Hungry users fume as Swiggy, Zomato take a ‘lunch break’.”
However, witless use of words can backfire. When a decomposed limb was found in a playground, and the police had no clue, a tabloid boldly announced: “LEG STUMPED”. While the play on stump was, perhaps, not lost on the readers, many found it insensitive, even morbid.
Yes, a little twist can get attention. But your readers must immediately grasp the context. They must not only spot but also appreciate the play on words. If there is even a whiff of controversy, it can raise hackles. The ensuing debate may overshadow the substance of your message.
Which makes it a tricky tool to use in the office, definitely not safe for work.
In the head office of the bank, where I used to work a long time ago, it was routine to send reminder letters to branches. It was my job to prepare the template, change the number of the reminder (REMINDER No. 5) and submit it to the officer for signature. Nothing ever changed except the number. Not that it mattered to the recipient who hardly bothered to respond, even if the number reached double digits.
A young new officer took charge and decided to freshen up things. And I was happy to be his partner in crime. This is the reminder he sent, probably the shortest in the bank’s history.
Within days there was some very officious uproar about the breach of “protocol” and violation of the bank’s “style of correspondence.” I do not remember if that reminder managed to get the report it was seeking. But, for a long time, even a little note from that officer got immediate attention from everyone. His boss pleaded with him to use “normal English.” And they transferred me.
Yes, go ahead and give it a twist if it gives you a kick. But make sure all will get it, and none will be upset. Else, you will end up with snubbed toe.
It looked like a rusty piece of metal till I went closer. Once I realized what it was, I had to fight the urge to pick it up from the garbage and take it home. It was part of what was once a Remington typewriter.
I was horrified when the City Editor told me I was supposed to type out my report. First day at work as a very green reporter, I was hoping for some handholding. Maybe I could write it out, the boss could correct it and then I could fight it out with the little monster, one key at a time?
Before long, the beast was my pet. Of course, it was cruel. Press a key and what you just typed stayed on paper, whether you had a change of heart or a belated realization of the correct spelling. Many opted to push the carriage back and make liberal use of the small x to cross out errors and type afresh. The sub-editors never liked it, though.
I felt most elated the day I managed to submit a two-page report without a single correction. The Chief Sub walked out of his room with my report held aloft like some trophy, came to my desk, and patted my back, making loud proclamations that put me on a pedestal. Given that reporters and subs were constantly at war, my personal equation with my fellow reporters took a long while to thaw.
Now, there is nothing cruel about the word processor, my favourite Microsoft Word. It predicts, it corrects. I can change anything I want, whenever I want. Even make it look pretty.
In fact, it doesn’t even expect me to organize my thinking before I start typing. Sad!
“We are bringing Jhini on a scooter to meet Bi.” That announcement was greeted with cheers. Bi was a patient at Karunashraya, pining to meet Jhini. And Jhini was a goat.
Jhini came into Salima Bi’s life when the lonely Bi took to raising goats both for companionship and sustenance. They grew very fond of each other.
Then, one day, Bi noticed a lump in her breast. When the pain became unbearable, she told her relatives who took her to a doctor. She had breast cancer at an advanced stage and was admitted to a hospital.
She found the hospital disturbing. The sight of patients dying in front of her made her lose faith in the doctors and medicines. Bi refused any treatment and left the place.
But something had to be done. One of the relatives had heard of Karunashraya, the hospice. That’s where the family took her.
Bi soon became someone the doctors, counsellors and nurses loved to talk to. All of them made sure that she was not lonely. They kept up a steady supply of her favorite films, TV shows and music.
A month later, the counsellor found Bi lost in thought. Bi was missing Jhini terribly. She knew an animal would not be allowed in the premises, but she begged.
A few days later came the news that Jhini was not keeping well. Bi was now in agony. She insisted on going home to see the goat. However, that was not possible as Bi's condition had worsened. The team resolved to try and get Jhini to Bi.
That was easier said than done. Jhini was not used to travelling by vehicles and would jump out of the autorickshaw every time. Then, for three days, Bi's family unsuccessfully tried to use a car for the two-hour journey.
On the fourth day, the counsellor called the family—Bi was getting weaker. The response was a happy exclamation: “We are on our way to Karunashraya with Jhini!”
This was an unusual reunion even for Karunashraya.
Many members of the team followed Jhini to Bi’s ward. There were smiles and tears. They were ready to control Jhini if the goat got unruly, but she surprised all. She walked quietly along one side of the corridor, calm and composed.
When she saw Bi on the wheelchair, Jhini turned her head away and refused to look up at Bi. Perhaps she was annoyed that her Bi had stayed away from her for so long? Bi looked at Jhini. How could she make Jhini understand?
Suddenly, an overwhelmed Bi picked Jhini up. All the welled-up love for her beloved Jhini flowed out of her. Jhini settled down to sleep on Bi’s lap. After all she had come home to her beloved after a long journey. Bi spent the day with her relatives and Jhini. Her eyes said it all—she could not have asked for more.
A few days later, Bi bid goodbye to the world.
With death none can compete. Yet, before it strikes, with some effort and much compassion, life can get a chance to be complete.
Adapted from Crossing Over: Stories from Karunashraya. Images: Karunashraya
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!
Yesterday was Valentine's Day. No, this is not a delayed post. For them dates did not matter, every day did.
Every evening her bed at the palliative care center would be wheeled out of the ward and positioned next to the garden. Then he would come, sit next to her, and hold her hands. That was all. And, for them, that was all that mattered.
He knew she didn’t have much time
Maybe she did too
That didn’t matter
That was out of their hands
The sun played hide and seek
With the leaves and the flowers
And people flowed around them
That didn’t matter
At times they spoke
Most times they didn’t
That didn’t matter
They still had each other
To love, to care for
That was in their hands
That was all that mattered
So they held hands, always.