A testimony to courage
Three years ago, I suffered a great personal crisis and when I prayed for support, fate directed me to a centre for disabled people.
There, I realised that my troubles were comparatively insignificant.
Every person I met, had a sad tale to tell, ranging from failed relationships to suicidal tendencies. I could only imagine the horrors they had encountered.
But each tear-jerker of a story was usually followed by another which spoke volumes of their courage and determination to conquer the odds.
These friends, some of whom have become like family, have helped me pick up the pieces. They showed me how I had taken life for granted all these years.
No different
One of my closest friends from here is the ever-jovial Sugumar whose legendry driving skills earned him the reputation of being the fastest disabled driver in this part of town.
Sugu as he is affectionately known drives a modified car, which unlike others, does not have the compulsory sign to warn other road users that the driver is disabled.
He reasons that when he is behind the wheel, he does not consider himself any different from others. After travelling with him on numerous occasions, which included a gut-wrenching descent from Cameron Highlands, I could not agree more.
Mention his car and Sugu will have plenty of stories to tell. I remember the one about how he tried driving before his car was modified cars for disabled people are fitted with special gadgets which allow the driver to accelerate and brake using the hands.
Unable to resist the temptation of cruising in his Proton Saga, he took it for a spin using a broomstick to control the foot pedals. This proved to be a misadventure which ended in an accident. Fortunately, nobody was hurt.
The accident
Sugu became partially paralysed at the age of 18 due to a motorcycle accident.
On that day, during a school break 11 years ago, he had rushed off for work without having breakfast. As he rode his motorcycle along a winding road, he suddenly felt dizzy and passed out.
He was told later that the motorcycle had crashed into a concrete wall and the impact had damaged his spinal cord, leaving him a paraplegic. The doctors said he would never walk again.
What followed for the youth, whose ambition was to be an engineer, was years of denial and depression. Suicide was often considered a viable option.
Numerous times, Sugu would recount his experience of being warded at Hospital Kuala Lumpur, where he spent more than a year undergoing rehabilitation.
He said drugs and alcohol were easily available from external sources for patients who wished to escape their sorrows, for the moment at least.
The staff, he said, were of all sorts. "Some were nice, others after working for many years in the hospital, were a little insensitive."
Sugu vividly remembers the words of one such person.
One day, his urine bag sprang a leak and the hospital bed was soiled. An attendant who witnessed this was enraged and shouted, "Why do you people live? It would have been better for everybody if you had just died."
Such hurtful remarks were commonplace in the ward for 'spinal cases' the commonly used term of reference.
Facing reality
After being discharged, Sugu spent several years at home, hoping against hope that he would walk again. His father, a cendol vendor, painstakingly raised enough money to send him to India for treatment. But nothing changed.
Following the encouragement from another disabled friend, he finally decided to face reality and continue with life.
He got himself a modified motorcycle and started working as a telephone operator. Later, he saved enough money to buy a second-hand car and landed a position as an administrative assistant with an insurance firm.
Work was another battle. Being wheelchair-bound in a building with not a single disabled-friendly washroom can be quite a dilemma. In order not to risk a stomachache, he would avoid having lunch.
For Sugu (third from right), the only indication of a stomachache is when his body breaks out in sweat.
Once in the toilet, he has to transfer himself from the wheelchair to the bowl. Because of the absence of any internal force, he has to insert a rubber hose into his anus and lubricate it with water before he is able to defecate.
There are several other physical problems he must deal with, such as incontinence and violent spasms. Because of the latter, he is forced to tie his legs to the bedposts when he sleeps, in order not to be thrown off the bed.
Another great predicament is dealing with emotional and sexual desires.
Sugu suffers from erectile dysfunction and has to accept that he will never be able to indulge in normal sexual intercourse or become a father, unless through artificial insemination.
This sexual disorder, more often than not, impedes emotional wants as well.
"Being in a relationship with a disabled person is not easy. One needs to meet a person who is willing to make great sacrifices. How often does that happen? The body is crippled, but unfortunately the desires are not," he said.
Since his accident, Sugu has been in and out of relationships. His last girlfriend, of four years, left without a word.
"I guess she found someone better in every sense of the word," was his reply when I asked him about it.
Limited space
There is little solace for Sugu at home as well. The family's double-storey low-cost house is far from ideal for a wheelchair-bound person.
Since both the rooms are upstairs, a bed is put in the hall for him. If he needs to change his clothes, his three siblings and parents have to either step outside or go upstairs.
He often tells me how he longs for a room of his own, with a computer, stereo, television, but most of all, a place which offers him privacy.
Due to limited space, there is nothing he can do at home apart from watching television. This prompts him to spend most of his time out with friends.
He used to love driving and his adventurous attitude took him far and wide Port Dickson, Cameron Highlands, Genting, Perak, Melaka ... to name a few destinations.
But unknown to others, he had been suffering from a pressure sore all the while a common and dangerous affliction among disabled people, which is caused by being seated for long hours.
Sugu had dressed the wound himself, fearing that if he were to go to a hospital, he would be admitted and hence lose his job.
He was afraid that this would hamper his plan to buy his "dream machine", a Proton Wira.
Unfortunately, at the beginning of this year, the wound became deep and he was hospitalised.
He has been in the hospital for seven months now. The antibiotics have caused the skin on his body and face to peel. As a result of this, he has to use special bed sheets and pillow covers which are meant for burn victims.
He has lost a lot of weight and is just a shadow of his former bubbly self.
The sudden change of lifestyle and loneliness have wreaked havoc on his mind. He suffered from hallucinations.
He told me once that he had met people who are invisible to others. These people, he said then, regularly stole things from the hospital but were caught one day. Following this, they threatened to kill him, thinking that he had told on them.
Fearing for his sanity, the hospital has provided him with a television set and this has managed to keep his mind occupied.
Courage revisited
Last month, Sugu was dealt another huge blow.
The doctors told him that the infection had spread to his bone and the only way to stop it from reaching a life-threatening level was to amputate his left leg and remove the bone in his posterior.
When he told me about this, Sugu said the only consolation was that it was a leg that he was not using anyway.
"However, I still feel sad because it's my leg and it's going to be different without it," he added.
Different it will be. He must now get used to the change in weight and the absence of the bone in his behind, which will pose a problem of balance when he sits in or transfers from the wheelchair.
When I met him after the surgery recently, the Sugu I knew was slowly resurrecting. Back, in little doses, were the humour and the zest for life.
"The next thing is to get out of here, see if I still have my old job or get a new one. I have to start driving again and get back to [where I was] before," he told me, wincing as a nurse inserted a needle into his vein.
Although, I have known him for more than three years, his courage never fails to amaze me. He prevailed in his first battle and I am sure his fortitude will see him through this one as well.
God bless you, Sugumar, my gallant friend.
