Narratives of Courage - Lives of Spinal Cord Injured Survivors in India

By Ketna Mehta

The purpose of presenting 'Narratives Of Courage – Lives Of Spinal Cord Injury Survivors In India' is to reveal an important stark gap in unserved healthcare, and medical rehabilitation. We should not forget that every human life is a human life. A poor, rural Indian citizen who has met with a road accident or has had an unfortunate fall, suffering the most devastating, permanent, life-long, incurable spinal cord injury, deserves to live a dignified life, fulfil their dreams, to take life decisions, continue their education in schools or colleges, earn a decent livelihood, raise a family, travel and experience life in its various hues. Alas, this lacuna still needs to be filled.

 

However, despite the tales of injury and struggle, this book is in no way bleak. It's a motivational and inspirational book about 25 spinal cord injury survivors in India. It will make you realise that our friends with spinal cord injury have meagre resources, live in dilapidated huts, with more than 60% of their limbs and organs non-functional, suffer from a lack of sensation, relationship woes, financial troubles, lack of food, mobility issues and the usual rural problems of poor mobile network, intermittent electricity, scarce drinking water and access to nutritional food or fruits. Yet they wake up every day with a broad smile and hope in their hearts, striving to fight and improve their life, without lofty expectations.

 

Our friends are happy, happy to be alive despite all their limitations and innumerable problems. Who knows, reading this book may change the way you think and make you realise how blessed you are!

 

When we experienced our personal spinal cord injuries that resulted in permanent disability, we too were clueless about what shape our lives would take. We were not aware of how we would live with our disabilities, but now all of us are considered 'Change-Makers' in our own spheres due to our efforts in making society aware of the huge hurdles that people living with spinal cord injury face.

 

Dear Readers, all of us at Nina Foundation urge each one of you to go through these life stories carefully, empathise with them, educate yourself about spinal cord injury and, in your own way, decide to act and bring about a positive change. For each of us has the power to initiate a positive change. Your smallest act can have a far-reaching ripple effect that will improve the quality of life for over 1.5 million people living with spinal cord injuries.

 

We express our gratitude to our Nina Foundation team, circle of family, friends, associates, corporates, institutions, students, children, volunteers, media, neighbours, sponsors, who willingly shared their emotions and thoughts through their wonderful quotes – 'They Said It' – about Nina Foundation. Their consistent support and kindness has enabled us to do what would have been considered impossible!

 

Thank you indeed for walking with us on this adventurous, tumultuous journey and spreading sunshine.

• Language: English
• Publisher: Nina Foundation
• Release date: Mar 30, 2022
• ISBN: 9798201678258

Book preview

Table of Contents

Dedication

Nina Foundation Team

Preface

Foreword

About Nina Foundation

VOICE OF NINA FOUNDATION – THE BOARD OF TRUSTEES

Keep Evolving – Dhaval L. Mehta

A Ray Of Hope – Dr. Himanshu Doshi

Joining The Dots – Dr. Riten R. Pradhan

A Synchronised Vision – Dr. Shekhar Y. Bhojraj

Winners All – Dr. V. C. Jacob

Mission Possible – Dr. Parinaz Humranwala

GUEST EDITORIALS

Sending The Right Signals – Air Commodore Nitin Sathe

Reinventing Life’s Journeys – Shraddha Jahagirdar-Saxena

A New Perspective Of Life – Shashi Nair

EDITORIAL

Nina Foundation: The Purpose Of My Life – Dr. Ketna L. Mehta

NARRATIVES OF COURAGE – LIVES OF SPINAL CORD INJURED IN INDIA

Ashvini Galgatte (32) – Finding Her Way

Tanmay Vijaykumar Galgatte (10) – Breaking Out Of His Cage

Kiran Ashokrao Shekokar (42) – Gaining Strength From Adversity

Prashant Kotkar (26) – Navigating A Tough Path

Pushpa Sunil Awjekar (49) – Combating New Challenges

Ramdas Vittalrao Kamdi (48) – Tutor On Wheels.

Samruddhi Prakash Patil (38) – Fighting With Grit And Determination

Rahul Sheshrao Wadankar (33) – Batting On Bravely

Archana Babaji Rawool (50) – Shooting Away The Challenges

Abdul Gani Naikodi (33) – Stitching Words Together

Manisha Chine (31) – Rising After A Fall

Daivenya Vilas Agarkar (26) – Getting Back On Track

Prakash Ainkar (41) – Scripting A Different Future

Chhagan Bhimraoji Sonule (32) – Recreating The Fabric Of Life

Ravindra Saranghdar Wankhade (33) – Getting Back On His Feet

Satish Pangarkar Wagh (27) – Surmounting The Shock

Abdul Jabbar Chandsab Mukadam (59) – Keeping His Spirits High

Gajanan Dnyandev Sanap  (34) – Overcoming Hurdles With Positivity

Vinayak Baburao Tathe (23) – Looking For A Better Yield

Haribhau Gulab Adhe (28) – Feeling Empowered Through A Strong Network

Ramesh Shivaji Ghuge (35) – Learning New Skills

Shantaram Dinkar Wankhade (36) – Looking Forward To A Better Tomorrow

Ravi Ravindra Shinde (42) – Driving With Hope

Uday Prafulrao Dikkar (24) – Living Positively

Bhimrav Pandurang Sirsat (45) – Dreaming Of Moving On

THEY SAID IT – ABOUT NINA FOUNDATION

Admiration for their Untiring Efforts – Dr. Mithu Alur

Purposeful Journey – Prof. Dr. J.V. Yakhmi

Working Together – Dr. Harvinder Singh Chhabra

Lighting Your Own Lamp – Dr. Veena and Dr. Mohan Chandavarkar

Determination – Divya Suvarna

Giving Wings To Wheelchairs – Bachi Karkaria

Rebuilding Trust And Faith – Saisuresh Sivaswamy

Of Grit, Focus And Generosity – Shameem Akhtar

Multiplying Victories – Suresh Lulla

A Beacon Of Hope – Professor Ernest Fernandes

Giving Hope To The Hopeless – Walter and Celine Vieira

Looking Forward – Jayshree Raveendran

Regaining Lost Dignity – Dr. Sunil Bhatia

Giving Hope – Gopalkrishnan Shanker

Spreading Optimism – Dr. Sruti Mohapatra

Turning Adversity Into Opportunity – S. Ramakrishnan

Reaching Out – Jyoti Verma

Filling A Void – Usha Athreya Chandrasekhar

Celebrating Life – Himat Advani

Laudable Effort – Niranjan Khatri

Advocating For Better Facilities – Dr. Razia Manjrekar

Courage And Grit – Balfour Manuel

On Dedication And Service - Niveditaben Sheth

Committed And Compassionate Work – Professor Rohinton Sahuraja

Pure Efforts – Mira Mehta

A Benevolent Service Mission – Prochy Khurshed Writer

Leaps Of Faith – Dr. Milka Vivek

Fighting Spirit – Manbir Kohli

Humanitarian Effort – Ashwin C. Shroff

Transforming Lives – Amit Shah

An Energetic Nurturer – Namrata Shah

Rebuilding Lives, One By One – Dr. Dhruv Mehta

The Transformative Power Of Para Sports – Jaspal Dani

T:\THEJENDRA-PRODUCTION\BOOKS-MAGAZINE-2021\LOGOS\DIVIDER1.png

Dedication

This Book Is Lovingly Dedicated To

Dr. Nina Doshi

Mrs. Manorama Laxmikant and Mr. Laxmikant J. Mehta

Dr. Sharad N. Sagade

Mrs. Kanta and Mr. Prabhudas Shamaldas Doshi

Mrs. Sunetra and Mr. Ramakant Pradhan

Dr. Atula and Dr. Kishor Parikh

Mrs. Usha and Dr. Yeshwant Ganesh Bhojraj

Dr. Mrs Kusum and Dr. Janak H. Mehta

Mrs. Vimal Nagorao and Mr. Mohaniraj Sagade

Mrs. Kamal and Mr. Gopal  Narayan Bhagwat

Dr. Nergish and Mr.  Jehangir Wankadia

Mrs. Dhanlaxmi and Mr. Ramanlal Mehta

Dr. N. H. Atthreya

T:\THEJENDRA-PRODUCTION\BOOKS-MAGAZINE-2021\LOGOS\DIVIDER1.png

Back to Contents

The Nina Foundation Team

Editor: Dr. Ketna L. Mehta, PhD

Honorary Consulting Editor: Shraddha Jahagirdar-Saxena

Guest Editor: Air Commodore Nitin Sathe

Editorial Team

Neenu Kewlani

Sunita Sancheti

Mohammed Yousuf Sheikh

Shabnam Sheikh

Research And Administration Team

Bhavna Chheda

Rajshri Patil

Rahil Sheikh

Mahima Sethi

Kunal Nalawade

Khushboo Gadda

Madhu Singh

Design: kreaté&young Advertising, www.kreateandyoung.com

Photography: Shashi Nair

Virtual Photo In-Charge: Sunita Sancheti

Virtual Photo Co-Ordination Team: Rajshri Patil, Rahil Sheikh

ConnectFor Volunteer Team; Courtesy Samina Bharmal

Tanvi Agarwal

Shwetal Patel

Shipra Agrawal

Drashti Shah

Richie Arora

Mabel Jain

Student Volunteer: Zalak Jogi

Book Publishing Coach: Thejendra Sreenivas, www.author-world.com

Publisher: Nina Foundation, 240/11, Shankar Sadan, Sion (East) Mumbai 400022, India.

Email: [e-mail], www.ninafoundation.org

Gratitude For Walking Together

kreaté&young Advertising

Print House (India) Pvt. Ltd

Spine Foundation

Blue Dart Express Limited

All India Women’s Conference (AIWC), Santacruz East Branch

T:\THEJENDRA-PRODUCTION\BOOKS-MAGAZINE-2021\LOGOS\DIVIDER1.png

Back to Contents

Preface

Dr. Ketna L. Mehta, Ph.D.

Founder-Trustee, Nina Foundation

Editor, ‘One World‘

Photographed by Shashi Nair

You can call it serendipity. I was introduced to Dr. Razia and Dr. Surendra Manjrekar (from the Rotary Club of Mumbai Sion) who soon became my close friends, by Dr. N. H. Atthreya, a prolific management author and my mentor, who urged me to establish Nina Foundation.

On one of the Manjrekars’ official visits to Toronto, (Canada) they got and gifted me a book titled ‘Exploring Disability Identity And Disability Rights Through Narratives: Finding A Voice Of Their Own’, by Morgan Rowe, co-authored by their friend’s son Ravi Malhotra. I perused the work and kept it in mind as the visual goal for Nina Foundation’s future book project.

I take this opportunity to express my heartfelt gratitude to all the people mentioned here and, in the dedication, for what you will be reading now is the manifestation of a long-incubating vision inspired by them.

It is often said that in every dark cloud, there is a silver lining. The last 2 years have shown that this has been so true for many of us. The first quarter of 2020 locked us in our homes. And almost all of us got involved with the multiple household chores – sanitising, cleaning, swabbing, cooking et al – that we, living in India, under normal circumstances, are so privileged to remain hands-off from due to our house helps. Yet despite these time-consuming tasks, we earnestly embarked on our project, ably supported by our willing, enthusiastic team members, a majority of us living with spinal cord injury. And the universe aligned marvellously with our goal, as whoever I reached out to readily offered to come on board. We  marched ahead confidently, and this coffee-table book is the result of a superlative virtual team effort.

Firstly, let me introduce you to our committed team members who multi-tasked and seamlessly worked on our  labour of love. The Editorial Board has been enriched with the loving, knowledgeable and dedicated involvement of veteran friends who readily came onboard: Retd. Air Commodore Nitin Sathe, Shraddha Jahagirdar-Saxena and Shashi Nair. Nitin, with his flair for words as an author, coupled with his military efficiency, interviewed the maximum number of our subjects and promptly converted the essence of their lives with an empathy which I wish most citizens would possess. He creatively wrote, typed, and emailed me the narratives, with much clarity and speed. His sincerity, dedicated focus, involvement and prompt turnaround were indeed awe-inspiring. Shraddha and I were greenhorn batchmates at our very first job at The Times of India, way back in 1985. An accomplished journalist, she is currently Executive Editor at ‘Verve’ magazine, and has edited several coffee-table books, and has also been a part of publications like ‘Femina’ and ‘Filmfare’. Shraddha surprised me with her interest and emotional investment in creatively editing the lives of  our 25  ordinary people with spine injury and presenting them as courageous survivors. Her meticulous approach, calm demeanour and reliable outcomes, undeterred by the several proofing sessions, deserves all my love, blessings and much more! Our baby has been in labour for over six months now and she has been multitasking with her professional work, sitting up late at night and working early in the morning to meet our various internal deadlines, smilingly. Indeed, an honour for Team Nina Foundation and me personally to be guided by her expertise and wisdom.  Shashi is an extremely accomplished senior advertising commercial photographer with whom I connected (thanks to ADAPT, earlier known as The Spastics Society of India) who promptly took up this challenge of an emerging concept – virtual photography. The impressive results are here for all of you to view, as he brought each narrative to life with his several years of experience and  terrific compositions.

Our in-house Nina Foundation’s extremely devoted, focused team, incidentally all friends with disability – Neenu Kewlani, Sunita Sancheti, Bhavna Chheda, Madhu Singh, Rajshri Patil and Rahil Sheikh. Mohammed Sheikh, assisted by Shabnam, his young talented daughter, who joined our team subsequently – all contributed immensely.

D:\DOWNLOADS\002.jpg

(Left to right): Rahil Sheikh, Sunita Sancheti, Rajshri Patil, Dr. Ketna L. Mehta,

Bhavna Chheda, Madhu Singh, Mohammed Yousuf Sheikh, Neenu Kewlani

In addition,  I had a wonderful ConnectFor Team as volunteers and my young grand-niece Zalak Jogi who helped with the copy proofing. For the last-mile editing, compiling and proofing, my profuse thanks to Mahima Sethi who, despite being based in Delhi and experiencing her fair share of personal tragedies, kept the flow going to help us take the project to culmination and bring our long overdue book to you, our dear readers.

I am also obliged to the ever-dependable expert designing (and much more!) kreaté&young advertising team led by Dhaval Mehta (the founder of this agency and also our co-trustee) and the immense co-operation from Bhawana Manral Roge, Mukund Pai, Deepali Pujara and the entire team.

image32.jpg

Front row - Left to right: Deepali Pujara, Dr. Ketna L. Mehta, Bhawana Manral Roge, Sandeep Gosai

Behind - Left to right: Mukand Pai, Sanjeev Sawant, Dhaval Mehta, Abhay Mhatre

And as we stepped into a new domain, the mentoring for Kindle Direct Publishing was a boon with the invaluable guidance of the acclaimed father-daughter author duo, Dr. J. V. Yakhmi and Geetika Singh. Ankur Gupta, a best-selling author and a trail-blazer in new technology, new publishing and new music, coming on board as our honorary advisor, was indeed a divine intervention. Thejendra Sreenivas, our book publishing coach of www.author-world.com, became the crucial link to collaborate technically to finally get our 2-years-in-making precious labour of love to several platforms: Amazon.com, Apple iBooks, Rakuten Kobo, Google Play Books, Amazon.in, Barnes&Noble Booksellers, Nook, Flipkart and Payhip with both an e-book and a hard-cover print version.

It would be amiss on my part not to mention our reticent, always preferring to remain behind-the-scenes Nina Foundation’s exemplary Board of Trustees – Dr. Riten R. Pradhan, Dr. Shekhar Y. Bhojraj, Dr. V. C. Jacob, Dr. Parinaz Humranwala, Dr. Himanshu Doshi and Dhaval Mehta. They were all in the frontline during the huge healthcare crisis that we faced and yet willingly acceded to my personal request to pen their views. They have each contributed their priceless Voice of Nina Foundation: The Board of Trustees note. Reading their profiles, you will realise that the vibrancy and vibe that our NGO reflects is because of our collective eclectic persona.

image33.png

(Left to right): Dr. Shekhar Bhojraj, Dr. Parinaz Humranwala, Dr. Ketna L. Mehta, Dr. V. C. Jacob, Dhaval Mehta, Dr. Himanshu Doshi, Dr. Riten Pradhan

And, last but not the least, I bow my head in deep gratitude to Major H. P. S. Ahluwalia, the Fraternity’s ‘Champion’ who was the Chairman, Indian Spinal Injuries Centre (ISIC), and who despite ill-health penned the foreword to our book. Shortly before going to press, he passed on and we express our heartfelt grief at his loss. He will be sorely missed. This magical fruition is all thanks to our dearest kind mentor, Dr. H.S. Chhabra.

But the real ‘Heroes and Shining Stars’ of  ‘Narratives Of Courage – Lives Of  Spinal Cord Injury Survivors In India’ are our 25 friends with spinal cord injury whose lives form the core of this work. They uninhibitedly poured their hearts out, sharing intimate details of their lives. We urged them to let us into their innermost dreams and aspirations, something they had earlier never thought of doing as they had always struggled to go from one day to the other. They were highly motivated by the several phone and video calls and WhatsApp and SMS messages sent by our team for over a year and half that enabled all of us to stay in touch. This interaction was beautifully supplemented by counselling, problem solving and providing a much-needed ‘Spinal Cord Injury Support Group’ during this ongoing crisis as spinal cord injury rehabilitation is a life-long process.

The purpose of presenting ‘Narratives Of Courage – Lives Of Spinal Cord Injury Survivors In India’ is to reveal an important stark gap in unserved healthcare, and medical rehabilitation. We should not forget that every human life is a human life. A poor, rural Indian citizen who has met with a road accident or has had an unfortunate fall, suffering the most devastating, permanent, life-long, incurable spinal cord injury, deserves to live a dignified life, fulfil their dreams, to take life decisions, continue their education in schools or colleges, earn a decent livelihood, raise a family, travel and experience life in its various hues. Alas, this lacuna still needs to be filled. 

However, despite the tales of injury and struggle, this book is in no way bleak. It's a motivational and inspirational book. It will make you realise that our friends with spinal cord injury have meagre resources, live in dilapidated huts, with more than 60% of their limbs and organs non-functional, suffer from a lack of sensation, relationship woes, financial troubles, lack of food, mobility issues and the usual rural problems of poor mobile network, intermittent electricity, scarce drinking water and access to nutritional food or fruits. Yet they wake up every day with a broad smile and hope in their hearts, striving to fight and improve their life, without lofty expectations. 

Our friends are happy, happy to be alive despite all their limitations and innumerable problems. Who knows, reading this book may change the way you think and make you realise how blessed you are!

When we experienced our personal spinal cord injuries that resulted in permanent disability, we too were clueless about what shape our lives would take. We were not aware of how we would live with our disabilities, but now  all of us are considered ‘Change-Makers’ in our own spheres due to our efforts in making society aware of the huge hurdles that people living with spinal cord injury face.

Dear Readers, all of us at Nina Foundation urge each one of you to go through these life stories carefully, empathise with them, educate  yourself about spinal cord injury and, in your own way, decide to act and bring about a positive change. For each of us has the power to initiate a positive change. Your smallest act can have a far-reaching ripple effect that will improve the quality of life for over 1.5 million people living with spinal cord injuries.

We express our gratitude to our circle of family, friends, associates, corporates, institutions, students, children, volunteers, media, neighbours, sponsors, who willingly shared their emotions and thoughts through their wonderful quotes – ‘They Said It’ – about Nina Foundation. Their consistent support and kindness has enabled us to do what would have been considered impossible! 

Thank you indeed for walking with us on this adventurous, tumultuous journey and spreading sunshine.

Ketna L. Mehta

February 2022

Mumbai, India.

T:\THEJENDRA-PRODUCTION\BOOKS-MAGAZINE-2021\LOGOS\DIVIDER1.png

Back to Contents

Foreword

Late Major H. P. S. Ahluwalia

Spinal cord injury and the resultant paralysis have devastating physical, mental, social, sexual and vocational consequences for the injured. Hence, comprehensive rehabilitation management is important for improving the quality of life of a person with spinal cord injury for it helps their integration into the community.

Spinal cord injury results in a major financial burden to individuals and society as a whole. A developing country like India has meagre resources, and is demographically large, and this  further accentuates the problems faced by persons with spinal cord injury.

More than 95% of the spinal cord injury population comprises civilians with no access to quality rehabilitation either due to lack of information, finance, awareness, transportation, medical equipment or physiotherapy. Nina Foundation, led by Dr. Ketna Mehta, Founder-Trustee and the editor of this coffee-table book, is working to fill this gap. Ketna suffered from spinal cord injury