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
THE UNSEEN FACES SERIES
6. DR KHURSHID BHALLA
I reached the hall a little late. Given that it was the first annual day celebration of “doctor foundation”, I expected to disturb the speech of some important physician, while the other doctors on the dais frowned at the latecomer.
Instead, I found a lovely dance by children in progress, all energy and rhythm. Then came another, where the young choreographer (“a volunteer” the emcee said), was also a participant. Distribution of certificates to those who had completed a beautician’s course (“conducted by an employee”) followed.
As I began to wonder if I was at the right venue, I looked around at the audience. They were mainly children, all dressed for a special occasion. They were restless and happy, with my immediate neighbour bouncing up and down on his seat, enjoying the music. He looked at me as if asking why I was not joining him in the celebration. The lone photographer was having a difficult time protecting his tripod from those constantly running to a better seat.
Just then, the person who had invited me appeared on the stage. The applause told me she was a favourite of the audience. After all, she was the popular “Bhalla Madam”— Dr. Khurshid Bhalla, Founder Trustee of The Doctor Foundation.
Facilitating the miracle of birth
Young Khurshid was always sure she would become a doctor. Her father, the late Maj Gen Dhunjishaw Doctor, had served as the Commanding Officer of a number of military hospitals across the country. That exposure, and her love for children presented paediatrics as a good option. Until a child’s death made her change her mind.
“During my internship, I happened to witness the death of a child who had been admitted to the hospital just four days previously. I was shaken up by that death. To me, it was grossly unfair that such a small child should die, even when he was undergoing treatment in a hospital and the paediatrician on duty was close by,” she remembered.
She turned to gynaecology and obstetrics. “I thought I would be happier dealing with birth. For me, every birth remains a miracle.”
Dr Khurshid Bhalla, now 65, retains her love for children, though she has not helped deliver a baby for several years.
Instead, at the helm of The Doctor Foundation (named after her father), she is today on the threshold of a new era in community care, going beyond medicine.
Unfit for the business of care
She had the option of working with a private hospital or setting up her own clinic. Yet she has spent most of her life working for charitable organizations. Why?
“It is not that I did not try,” Dr Bhalla explained. “I did set up a small clinic in Pune. There I would carefully examine the patients who came, hear them out and then prescribe the test or medicine that they required. I would charge about ten rupees per patient. I thought it was my duty to help the poor and serve them at a price they could afford. I was naive enough to think my model clinic would help a lot of people in the locality. Instead, they simply stopped coming. And my nurse, who was my assistant, told me unless I started giving injections and tablets, no one would come. So, that was that. Obviously, I was not cut out for the business side of care and I could not afford to keep the clinic open.”
In 1996, she joined Care India Medical Society, a trust that provided a social support system in the prevention, early detection and terminal care aspects of cancer management. “Care India’s clinic where I worked was surrounded by homes of the underprivileged. HIV infection was rampant. A few years after I joined, I came across many HIV patients and their families,” Dr Bhalla remembered.
During those years, HIV infection was almost a certain death sentence. Many mothers lost their children; young wives their husbands. “I would visit the women at home and try to help. Some NGOs came forward to adopt some of the orphaned children. There was one shelter in the outskirts of Pune that took in HIV patients. They had zero facilities. Often the watchman, out of compassion, would bring rice and dal from his house to feed the patients.”
It was quite common to simply abandon HIV patients on the streets. “I heard many horror stories of patients curling up on the road all alone. When they vomited or had diarrhoea, they would drag themselves a little away from the filth, helpless and miserable. I knew this was cruel reality and not just fiction, when I heard a social worker casually announcing how she had abandoned her husband, who was in the final stages of AIDS, outside their house before she came to work.”
Serving the imprisoned
As part of Care India’s work, Dr Bhalla used to visit Yerwada jail in Pune to examine women inmates. “The jail authorities were surprised that I mingled closely with the women. For me, they were simply human beings who needed care. Some of them were overcome because someone from ‘outside’ was willing to touch them, talk to them.”
Dr Bhalla was shocked to learn that some of the HIV-infected prisoners, whose terms were over, refused to leave the jail. They would plead to remain in prison. “Where else would we go? Our families do not want us.” One ex-inmate settled under a tree a little away from the prison. The police decided to force the issue and took him to his house and browbeat the family into accepting him. After all, he was the owner of the house. That didn’t work. The next day he was back under the tree.
Finding a new path
Then Dr Bhalla got an opportunity to extend her work in HIV. In 2004, she joined Mukta, set up by Pathfinder International, funded by Bill & Melinda Gates Foundation. She started work in Budhwar Peth, where most of Pune’s sex workers continue to live and work. “There were about 3,800 women living within one km radius. Initially as I tried to connect to them, I understood that they had the same story—mouths to feed. And as they put it, ‘after the first time, it gets easier.’”
They did not want to be tested for HIV. “What’s the point?” they would ask me. “If we have the disease, we are going to die, test or no test. We would rather die without knowing.” It took a long time for things to improve. Things eased once antiretroviral therapy (ART) arrived on the scene. HIV infection was no longer a death sentence.
Dr Bhalla considers the 10 years with Mukta a great learning experience in helping the community scientifically. “We had some of the best trainers working with us. For the first time, I found myself hopping into a bus and travelling to unknown villages to set up a network of clinics. I never considered myself a teacher. That stint taught me to be a trainer, to work with a team, to share the commitment so that more people could benefit.”
After Mukta, Dr Bhalla returned to head the charitable chemotherapy unit of Care India Medical Society for a few years.
Be compassionate, not emotional
When it comes to palliative care, the norm is “detached attachment”. You should be fully attached when you are there with the patient, but detach yourself later. This ensures you don’t carry a baggage of interminable worries, fears and sorrows home.
“I know that I am a softie. But I can’t help being fully attached to my patient. Yes, I have been a victim of compassion fatigue more than once. But that’s who I am. I always say that I have more friends up there (in the heavens) than down here,” Dr Bhalla confesses.
A 10-year old boy with cancer of the bone was Dr Bhalla’s patient when she was at Care India. He was the only son of a mother with three daughters. Once the doctors were discussing his case with the mother. After all the tests, they had concluded that the only option was to amputate the affected arm. They announced this to the mother. “They ignored the boy who was in the room with them. As soon as he heard the verdict, he jumped up and ran out, screaming. I was very upset. That was not the way to break the news. They treated the boy as if he didn’t exist. I was determined to make amends,” Dr Bhalla remembered.
Despite warnings from her senior, she took personal responsibility for the child. “If he were my son,” Dr Bhalla told his mother, “I would try to save the arm.”
She took the boy to Tata Memorial Hospital in Mumbai. There she found that there was a procedure to excise the affected portion and spare the arm. With the mother’s permission, Dr Bhalla got the surgery done in Pune.
“I felt vindicated. The family was happy. But the joy did not last too long. The cancer returned. The boy was in severe pain. Then he died,” Dr Bhalla was distressed to recollect the case. “Finally, I understood why my boss was cautious. There had been a similar case where they had opted for the amputation. That boy was now doing well and was a regular participant in the NGO’s cultural programmes. It was a painful but necessary lesson. You must be compassionate, but being emotional can cloud your judgment.”
Dr Bhalla regrets that compassion is largely missing today. “When my father was dying of cancer, several doctors were treating him and would come to meet him every day. He always looked forward to these meetings. Then they stopped coming. He would often ask us why they hadn’t come. Finally, the truth dawned. There was no treatment left for my father. What would they tell him? It was perhaps embarrassing to tell him that there was nothing more they could do. Looking back, I think even I failed my father as a doctor. Like the others, at that time I too did not know how to talk of death.”
Caring for the community
It is 2 a.m. The family has gathered around the bed of the dying elder. It is clear the end is near. The family has been prepared. Nevertheless, a call is made. After putting the phone away, Dr Bhalla gets ready quickly. Her scooter takes her to the house through empty streets, where “the stray dogs are my only companions”. She arrives and peace descends. She sits with the family until the end. She checks the patient one last time, leaves whispered instructions, consoles the family and goes back home.
“This is something I have been doing for a long time. Many of my patients are the elderly or terminal. I spend time with them and the family. It is a privilege to be with them during the last moments. Nothing happens medically; a lot happens emotionally.” Is this a service under The Doctor Foundation? “Yes, it falls under my free home visits,” Dr Bhalla said.
Walk into the Foundation’s clinic at Bhawani Peth in the evening and you are likely to encounter boys and girls learning to dance, young women learning to be beauticians, a tuition class and a couple of sewing machines that used to train would-be tailors until recently. Aren’t these rather strange engagements for The Doctor Foundation, headed by a medical doctor?
“The Doctor Foundation’s objectives are rather broad, but the main goal is medical care,” Dr Bhalla explained. “We were registered in 2013 and started out with home visits in 2015. We started this clinic in 2016 and opened another in Kondhwa (another locality in Pune) in 2017. I am fortunate to have a team of doctors, mainly specialists, offering their services at the clinic on different days. The idea is to offer professional medical service at a nominal cost. Why should the poor be denied the service of a medical specialist just because they cannot afford it?”
And the dancing children?
“My original idea was a care and community centre for the elderly. We ended up attracting more children from the neighbourhood. In any case, once we finished with the patients during the day, the entire space was available. Why not put it to use?
“An NGO donated sewing machines to teach the women in the community. Somehow, tailoring seems to have fallen out of favour, and so the machines are now idle. Then we had a part-time choreographer come in, keen to teach the boys and girls dancing. He is a big hit now! We also had an employee who was already qualified, volunteering to conduct a beautician’s course. Then a couple who takes tuitions free of cost for poor children asked me if they could conduct their classes here. So, we have a lot of young people coming to the clinic and, in my view, that really energizes the place,” Dr Bhalla said.
That explained the dance performances I saw at the annual day celebration. “I thought it was a great opportunity for the children to showcase their talent. The money for hiring the hall was donated by a well-wisher. In fact, the Foundation has not spent on a single piece of furniture you see here. Some came from my house; others are kind gifts from various people. I prefer to spend only on essential overheads. The rest is all for the patients,” Dr Bhalla was very clear.
Plans to do more
So far, Dr Bhalla and her team of visiting specialists have cared for more than 5,000 patients across the two clinics. She is very keen that the Foundation does more.
Her wish list for The Doctor Foundation has three main items.
Set up a network of partner clinics. She wants to identify clinics that provide ethical, efficient service to patients and make them Preferred Partners of the Foundation. “I would like to begin with Pune and then spread to other districts.”
Improve the home care programme. Recruit the minimum essential team and train them. “I have a couple of old cars lying around. I will be happy to begin with those.”
Set up a hybrid home. “It will be a home for the elderly to begin with. Then I would like to add on an orphanage for children. I think the young and the old will provide each other very healthy company. It will be a happy home for both. They will not be just put there; they will want to be there.”
Would the plans be commercially viable? “I am counting on cross-subsidization. Those who can afford to pay will get better facilities. In the process they will help us serve more poor patients. The service quality will be the same.” Dr Bhalla is positive her dreams would come true.
Dr Bhalla is grateful to her fellow trustees for helping her set up The Doctor Foundation. “It has given my life purpose. I have a good reason to wake up every morning.” She also thanks her fellow doctors, the specialists who spare the time for The Doctor Foundation. “It is hardly remunerative for them. But they do it in the spirit of giving back.”
Several hundred beneficiaries may not understand the intricacies of a trust. They are simply grateful that Bhalla Madam will hear them out and tell them what is wrong with them. They know she is on their side. And she always has the time to sit with them and hold their hand.
… and they went back and lived