How does an average teenager spend their time? Movie marathon, fiddling with gadgets, playing games of the non-electronics variety, pursuing hobbies, “chillin” with friends all top the list. That is, when not attending school, doing studies related activities and projects, or going for the almost compulsory tuition classes.
These activities come as second nature to teenagers and are taken for granted by most. In fact, some parents even find it odd if their teenager is confined to the home.
An exception to this norm is 17-year-old Thinesh Kumar, who lives in a desolate part of Selayang Baru, in the fringes of Kuala Lumpur. This teenager is unable to lead the normal life of a person his age because he was diagnosed with spina bifida at birth. But in abnormality, he leads an extraordinary life.
His mother, Amutha, has a soft and kind face. She recalls the time when doctors explained to her that there was a hole in Thinesh’s backbone at birth. “The doctors were saying things about my newborn baby that were quite confusing. I was far from prepared to understand the implications of the disease.” The devoted mother also had no inkling to how her life was about to change forever.
Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect. Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube doesn’t close all the way, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves. Spina bifida might cause physical and intellectual disabilities that range from mild to severe.
If there was one thing that Thinesh’s mother realised at his birth, it was that she had to pluck up the courage to deal with whatever difficulties that were to come in her way owing to her baby’s medical condition. She already had four older children but realised soon enough that caring for Thinesh was a different challenge altogether.
Thinesh’s numerous medical issues include not having sensation or control to excretion and defecation, which means he is constantly in diapers, to this day. Unable to clean himself, the teenager goes through the embarrassment of having his mother do it for him. He is prone to infection and since the wounds do not heal he has had a fair share of minor surgeries. His legs are bent, with one shorter than the other, leaving him unable to balance himself.
Until the age of 11, his mother carried him everywhere. Having a wheelchair now gives him mobility at home. However, his mother still cleans, bathes, dresses and prepares him for school. She then gets him onto her motorcycle and they are off to school.
Amutha spent most of Thinesh’s pre-school and primary school days with him at school. Now that he is at the secondary level, she works her routine around his time-table as she needs to return to school to carry him to the upper floors for his laboratory classes. Despite doctor’s advice not to be seated for more than two hours at a time, Thinesh has to spend six hours at school and this has led to scoliosis, meaning his backbone is badly bent.
It’s no wonder that Thinesh dotes on his mother. “Needless to say, she has been my pillar of strength. My siblings and I are aware that she has had to sacrifice her own life and happiness to make us her absolute priority, especially me and I am very grateful to her. We are all very proud of what she has made of us, even as a single mother.”
Although he occasionally wonders and internalises about the curve ball thrown at him by life, Thinesh had accepted his condition from young. With a twinkle in his eye and a wink at his mother, he says, “How many people can boast they live with God? I have God with me all the time.”
The charming twist to this story is that both Amutha and Thinesh have benefited greatly from the support and contributions of caring members of society. In their case, it is the Tzu Chi Foundation that stepped in to provide them with comprehensive care and support.
More than the financial and medical aid, it is Tzu Chi Foundation’s constant motivation and inspiration that Thinesh holds most dear. Today, after two years of support from the NGO, Thinesh, with his insight and maturity, has requested that they cease his financial and medical aid as he has seen many other more deserving cases than himself.
In another age-defying gesture, this teenager also gives motivational talks to other care recipients at the NGO, sharing his life challenges with the hope he can inspire them to progress in life no matter what their situation.
Thinesh also uses social media to reach out to a wider group and make people more aware of spina bifida. He has researched on his condition and puts his research on Facebook for others like him to gain knowledge and make informed decisions. As he has undergone several types of treatment, he also writes about the success or failure of the same. In all this, he has the full support and backing of his mother who works tirelessly to ensure that Thinesh lives a life as normal as possible.
Amutha is also grateful to the schools for keeping Thinesh’s classroom on the ground floor whenever possible, to ease her burden of carrying him, his schoolbag and wheelchair to the upper floors. Some teachers too have gone above and beyond their call of duty, giving Thinesh extra classes when he misses school due to illness or when he is hospitalised. Amutha is also appreciative of the hospital authorities where Thinesh gets treatment because they have support groups and she has gained useful information on Thinesh’s physical condition and understanding of his emotional needs.
Amutha and Thinesh have the same hope and fire – for Thinesh to be totally self-dependent. The mother prays that technology can one day give such an opportunity to her son to rise above his challenges, while the son, matured well beyond his 17 years, certainly has the strength of character.
The determined youth parts with words of wisdom, ”Only my body is confined to this wheelchair. My mind and my spirit are free. As long as I refuse to allow my mind and spirit to be imprisoned, I have wings to fly.”