August 1, 2010
Darkness had descended on the warm Sunday evening. 28-year-old Ashla was on the night train back to Chennai, after a long weekend with her mother in Kerala. She finished the dinner her mother had lovingly packed for her. Making sure her valuables were in the handbag secured over her shoulder, Ashla left her seat, walked down the vestibule, and pulled open the coach door to get some fresh, cool air. Holding the handrails securely, she looked up at the night sky and thought about the next day. An internal audit of her team was set to begin. Had she done everything she needed to as the team’s quality manager? Was she ready? The train went around a bend, and with no warning, the door swung shut. Ashla was hurled from the speeding train into the inky darkness.
The second girl child
Ashla was born the second girl child to her parents in a rural village in the municipality of Iritty in Northern Kerala. Second girls were not very welcome in the community those days; boys were preferred. Her parents embraced her arrival, however. They loved and looked after her to the best of their ability. “I had a pretty good childhood until the age of eight when my father suddenly died of a heart attack,” she recalled, “life changed after that.” Her mother was devastated; widowed at the age of 34 with two young daughters to raise. Visitors told Ashla that it was now her responsibility to look after her mother.
The eight-year-old vowed to study hard, get an education, and find a job so she could do just that. “My uncle’s little library instilled a love for books in me,” she recounted, “that was a blessing.” Ashla obtained a master’s degree in computer applications, and at the age of 24, was one of the first in her village to get a job in the IT sector in Chennai. To young Ashla, Chennai – a 13-hour train ride from the nearest railway station which took two hours to get to from her village – seemed a world away.
Life was cool
A carefree young woman, Ashla enjoyed her work and leisure time. She occasionally helped with community projects – painting a local elementary school and helping set up a computer lab for the students. “Life was actually very cool as a software engineer in Chennai,” Ashla flashed me a dazzling smile, “I loved working at my job Monday through Friday. On the weekends I read books from the library, and enjoyed long walks on the beaches around Chennai – even in the hot weather, when I’d be one of the very few sitting on the beach and watching the waves come in.” Every couple of months, she would take a Friday off and ride the Thursday night train back home to Iritty to visit her mother.
Waking up in the ICU
Some young friends returning from watching TV at a local club that fateful Sunday night spotted the unconscious Ashla lying in some bushes. They took her to the nearest clinic which arranged for transportation to the medical-college hospital in Thrissur. “It was a difficult time,” Ashla told me in her understated way, “I woke up in the ICU unable to move any of my limbs with a very heavy collar strapped around my neck. One palm was broken and in a sling.” Severe injuries to the spinal cord sustained in the fall had rendered her a quadriplegic.
“One memory that stands out is of Nurse Ashwati. She was one of the few people in the hospital who treated me as a person and not a case,” Ashla recalls. “Ashwati enabled me to read, propping me up in bed and setting up old magazines that she would procure for me.” Ashla’s love for reading and her mother’s constant presence kept her going during her hospital stay. Her mother had been traced from the ID cards and mobile phone found in Ashla’s handbag. She was discharged from the hospital for rehabilitation in six weeks, following surgery and recuperation.
Picking up the pieces
Ashla spent four years in physiotherapy and rehabilitation. “The most difficult words for me and my peers to hear are ‘you’ll be wheel-chair bound for the rest of your life’,” she said. “It was a painful and slow process, one day at a time, to try and regain some of what I had lost.” Unable to move her fingers, she learned to hold a spoon to feed herself, and a pen to write. She taught herself to sign her name and to use her knuckles to type on her laptop. She began to sit up a couple of hours at a time – first in bed, then in a wheelchair. Ashla learned to smile despite her condition.
Reinventing Ashla
Her rehabilitation was over in 2014, four years after the accident. “I couldn’t call what I was experiencing a life,” Ashla told me, “It was merely an existence, receiving care from others.” She had no purpose. All the money her mother set aside for Ashla’s marriage had been used up for her care and rehabilitation in one facility after another. Ashla was at a crossroads. Returning to their village – to their little house with no attached bathroom or toilet – with no facilities nearby, no internet connection would lead to a dead-end without hope. It was not an option for Ashla, notwithstanding the care, love, and support her mother was sure to provide.
She put on her project-management hat to seek other solutions. Listing her skills and what she was now capable of doing – listening, talking, and typing, she wondered: could she read to others? Teach basic math or English? Do administrative work? Ashla knew she also needed to be in an environment where someone could care for her and help with her daily needs. She decided to seek opportunities in elder-care homes and schools for disabled, special-needs children. A friend helping Ashla in her quest serendipitously came upon a small announcement in a two-day-old newspaper about a rehabilitation project for individuals with spinal cord injuries at an organization called Pallium India. She decided to contact Pallium. “That turned out to be such a blessing,” she says.
A new home
Dr. M.R. Rajagopal, then Chairman of Pallium, responded to her inquiry. He also happened to be looking for an executive assistant at that time and saw in Ashla the potential to fill that role and much more. Two months to the day after contacting Pallium, Ashla moved into a room at Pallium’s Trivandrum facility that had been modified for her special needs. She began helping Dr. Rajagopal with scheduling, correspondence, and travel, and learning about the world of palliative care and hospice. “I am lucky to have learned the purest form of palliative care by observing him with patients over the years,” Ashla says with a smile.
Ctrl-Alt-Del
As Ashla participated in the spinal cord injuries project that first brought Pallium to her attention, she began to learn what went on there. “When my laptop hangs up on me and I am frustrated or angry, I can press ‘control-alt-delete’ and reboot it to its nominal state,” Ashla says, “people in need of palliative care have no such magic options to restore the quality of their lives. Dr. Rajagopal taught me what we can do to help – make them feel supported and cared for. I learned from him to care for not just the patient but for the family members too. They are at their most vulnerable, and it is a privilege to be there for them as well.” She took courses in counseling patients and families. “Good intentions and a big heart are not enough,” she said, “I have been hurt by very well-intentioned people saying the wrong things.”
God sent me to be there for others
In 2020, Ashla was invited to join Pallium India’s Board of Trustees as the voice of patients and families. “Representing receivers of care is a huge responsibility,” she says, “the moment I think I understand all their suffering, I will have failed. I have to keep working hard to know them.”
Ashla often meets with physicians, nurses, and other healthcare professionals to share her own experiences as a patient, and life as a quadriplegic, and describe what someone like her needs from them. “Life is good today and I find meaning in what I do. My goal and responsibility are to ensure Pallium never loses its focus on caring for the individuals we serve,” she adds.
Ashla’s message for others who face what she’s been through in the past 14 years is to keep their faith and hold on to hope, even during the darkest moments. She encourages them to seek and accept help from all who are willing and able, to hold on to them, and not worry about the others. It won’t be easy, she says, but stay strong and you may realize your hopes.
Enable me to live in your world
“The harsh reality for us disabled people is that others invariably do not see us,” Ashla says, “they see only our disability. People do not engage us in conversation like they would others. Children don’t have inhibitions – their natural curiosity drives them to ask about me, and even more so, about my electric wheelchair. That opens the door to communication, and I am no longer an alien, just another person to engage in conversation.” Parents, and other grownups, on the other hand, resist interaction. “The moment we become adults, we become awkward and complicated,” Ashla asks adults to treat the disabled as people. “As long as you are genuine and caring, you will not hurt me,” she says.
Ashla – an inspiration for all
“There are a thousand things that I can no longer do,” Ashla told me as we wound up our long conversation, “but I’m happy now. Pallium is my family, and I have a calling.” Addressing a large gathering once, she said,“If you ask me whether I would like to walk again, I would say yes, certainly; but it is equally true that my life in the last few years has been more meaningful than it was till the age of 28 when I could walk.”
I asked Dr. Rajagopal about Ashla. “She sits at her desk in her wheelchair with a tiny statuette of Buddha beside her and greets everyone with a smile that widens every time. I wonder where she hides her wellspring of joy! How did she develop this extraordinary ability to find happiness in little things and to exude it!” he marvels. Dr. Rajagopal says that her journey from being a carefree software professional to ‘that case of quadriplegia in room 3’; to Ashla with a name and an identity in Pallium India – first as a care recipient, and now a care provider, serves as a powerful lesson from which he hopes to draw strength when it is his turn to be a care recipient. “I hope that her wheelchair will roll towards me then, and transform me from a ‘case of something’ to a human being deserving of life with dignity,” he concluded.
Ashla’s remarkable journey, calm demeanor, gentle tone, and dazzling smile will forever inspire and lift me during my dark moments.