Author: Dr. Monika (HOD, Occupational Therapy) with inputs from Poornima Ranganath | 27th September 2025
The title of this blog would have most likely intrigued you. What am I trying to convey… a friend who is patient by nature OR is a friend also a patient OR a patient who became a friend? Well, all three are possibilities and true at various points of my life and career.
But today I will be writing about a patient who became a friend and stayed that way till his passing in 2022. He would have turned 50 in July 2025. I wish to write about him as a memory that will stay with me forever because of the life lessons he taught my children and me, as we approached the eve of his final journey on 1 October, 2022.
Udai lived with his parents and little sister in Chennai. He had SMA or Spinal Muscular Atrophy. In the words of his sister Poornima, or Poorni as I call her fondly, “diagnosed at the age of 11 months, it was as if the world stood still for my parents. They never imagined that life could change so suddenly. The words from the doctor felt heavy and unfamiliar, yet painful. There were unspoken fears and a silence in their life that seemed louder than any words ever spoken. But beneath the shock, a quiet resolve began to take shape – the kind that only a parent’s love can forge. They promised themselves that no matter what lay ahead, they would give him every ounce of care, treatment, opportunity, and joy they could.” And they did just that….till the time he needed the care no longer.
“Udai’s love for painting began early in life, but somewhere along the way, the brushes lay still and the colours waited. It wasn’t until 1998, when Udai had just finished Class 10, that he joined a painting workshop organized by the Lalit Kala Academy and his passion was reignited. From that moment on, he returned to painting with renewed energy, creating and exhibiting his work ever since.”
How did I meet Udai? Fresh out of college after my postgraduation degree from AIIPMR Mumbai, I was appointed as faculty in SRM College of Occupational Therapy in Ramapuram, Chennai. My colleagues in SRM, Dr Isaac and Dr Suresh, were with me in AIIPMR as well. They knew me well, enough to understand that I enjoyed challenging assignments. Additionally, I could not and would not say NO to a job given to me …. So, there I was … from the northern part of India working in a small village of Chennai in the southern region – heading off into the interiors as Lead of Community Based Rehabilitation OT programme along with two students who were fluent in Tamil…spoke a bit of English and zero Hindi.
But, as the saying goes, actions speak louder than words… and I was then experiencing the reality of the proverb, as we traversed the length and breadth of Ramapuram, for the door-to -door survey to identify persons with disabilities. The purpose was to give them the necessary Occupational Therapy either at their homes in terms of self-care, intervention, or any other environmental adaptations in order to facilitate functional independence. We were also to advise them to visit the Occupational Therapy Department for further management.
That’s when we met Udai and his family. He was 24 years and already completely bedridden. In stark contrast, there was me … the same age but walking around without a care in the world. We connected instantly. His sheer grit and determination, a never say NO to any challenge struck a chord. Udai was an artist who painted using the only part of the body that moved-his mouth. I had never seen a person with SMA earlier, albeit I had seen many with muscular dystrophy (MD). The difference between a person with SMA and MD is that the former affects the nerves first and then the muscles, whereas the latter affects the muscles first. Ultimately, the progressive nature of both conditions calls for similar care in terms of rehabilitative support.
For me, Udai was an inspiration. His parents and Poorni, who was all of 10 years at that time…a little school-going girl in two long plaits, proudly showed me Udai’s works. I was in awe….and completely speechless. The lines blurred. Udai became the guide and I the student.
Over the next 9 months, my student days returned as I experienced and lived the life of a person with a progressive, neuromuscular condition first-hand through my interactions with Udai and his family. They could not travel to the college for therapy due to financial constraints and so all occupational therapy intervention was home-based. We modified his exercise programme to suit his current health status. As Udai was only able to move his head, he had to depend on his family for everything except for talking … which he did extensively, cheerfully and in a voice that was sometimes difficult to comprehend in terms of clarity and texture, but always filled with hope and positivity. As he followed his physical exercise regime that included breathing and range of motion exercises, I began understanding the challenges of a person with SMA.
The time I spent with Udai changed the way I looked at life in many ways. It taught me to be grateful for what I had, thankful for what I could do as an Occupational Therapist, and sensitive to the needs of others …. what Udai and his family wanted was not exactly what I could do for them as a Rehab professional… but we adapted and changed therapy goals to align with Udai’s, so he could feel truly empowered and not just enabled.
I headed back to Delhi after 9 months but continued to stay in touch with Udai and his family. Much later in 2015, I took my children to visit the family…they had shifted from Ramapuram into their new home. We met like old friends; his parents were as affectionate as ever and absolutely thrilled to see Abir and Myra. Poorni was married by then with a daughter of her own. I could not meet her.
Nothing much had changed… Udai was as chatty as before… but older …as was I, and had slowed down a bit… not much. He got his parents to show us the many paintings he had done….and I particularly remember his fondness for painting horses… Udai went on to holding a few exhibitions and would continue to paint till one day … he could’nt.
That was the last time I met Udai…. November 2016. But I still have the painting he gifted me …it adorns the wall of my room at the highest level…. as a symbol of his friendship to me that reminds me that warriors are not just those who fight for their country or who wear a uniform… but also those who, despite being challenged in every possible way, still fight for their dreams and hope that one day they will achieve what they wish in a limited span of life vis-a vis all of us who have a lifetime of good health and still fall short of that mark.
