From a mind-numbing accident 15 years ago that confined her to a wheelchair, Arlene D'Souza has clawed her way back. For her never-say-die spirit, she was recently awarded the Nina Foundation's Rockstar Award. We profile her inspiring story
The journey, literally, began on December 31, 1994. A day that began with tremendous excitement but ended in heart-rending tragedy. Married just five days earlier, Arlene D'Souza and her husband had boarded the Udyan Express at Mumbai, heading towards Bengaluru -- their honeymoon destination. A love marriage, this was a cherished moment. Things could not have been more blissful.
But, mere kilometres from their destination, a high-speed derailment left Arlene in a critical medical condition -- a serious spinal cord injury affecting the C6 and C7 vertebrae rendered her immobile. Thus began a long haul that took Arlene through a series of operations and surgical procedures, endless hospital stays, the bane of bedsores and an uncertain future. She was physically devastated, and just when it seemed like things couldn't get worse, emotional desolation was to follow.
After a few years, her husband, who was miraculously unscathed in the accident, told her he wanted to move on. She thought the accident had robbed her of everything, but now, fate was taking away the one thing that she needed most, love. But where others would have given up, Arlene somehow found it in her to dig deep into her reserves, and extremely painful as it was, she let him go. But hope kept her going against all odds. Slowly, bit by bit, she started to piece her life together -- with God's endless grace and the steadfast support of her family. She even found it in her heart to forgive her ex-husband.
Picking up the pieces
At first, unable to carry out even the most basic of motor functions, Arlene gradually regained the use of her right hand after a tendon transfer by Dr Bimal Mody at the Hinduja Hospital. This resulted in a fixed thumb, index and middle finger bent, so that Arlene could now clutch things, and was able to do her own catheterisation when she was on the bed, though she is still dependent on others for the same when she is on the wheelchair.
There would be no shortcuts to regain the control of her functions. Painstakingly she began physiotherapy -- first with the help of Josephine Fernandes, then with renowned physiotherapist Dr V C Jacob; finally with the help of her father, who would take her through her physio routine every day, without fail.
The regularity and discipline helped. Gradually, her strength returned and she began to do things she hadn't in years. Where earlier four persons were required to shift her from the bed to the wheelchair and vice versa, today she does it all on her own, with minimum help.
She started performing tasks that most of us take for granted, like bathing on her own, helping her mother cut vegetables, knead flour for making chapatis, scrubbing small items when her mother was ill and the maid absent (though it takes "ages") -- sheer triumph for one that has gone through such deep trauma!
An active office-going girl before the accident, the prospect of being dependent gnawed at Arlene. She was determined to generate income and become as self-sufficient as she possibly could. Beyond the money, it was about keeping her mind fruitfully engaged and her time productively occupied.
Working towards self-sufficiency
Sensing her mood, Arlene's brother-in-law, Leslie -- an IT professional with his own networking business -- gifted her a PC. He encouraged her to develop her typing skills all over again. It wasn't easy to begin with. In fact the bent fingers of her right hand made it impossible.
Like a child learning basic tasks, Arlene had to train her left hand to type. But the ray of hope and anticipation of an opportunity to stand on her own feet (even if not in the literal sense) and earn a living drove her.
Right-handed all her life, slowly but surely she developed left-handed proficiency, and today does all her computer typing with the left hand. Till today, Leslie ensures his personnel are always on call to promptly attend to any matters of PC up-gradation and maintenance, thus ensuring minimal downtime, much to the marvel and envy of her friends.
Fortune too favours the brave -- the first job since the accident to come her way was courtesy Dr N H Athreya. It entailed working at home on a PC. Thrilled at the prospect of inching closer to normalcy, even if still in a wheelchair, Arlene grabbed the opportunity with both hands -- although with the left-hand would be more accurate!
Then came the break with Datamatics -- again involving a work-from-home routine: data entry and proof-checking. Being a committed and meticulous person and one who fulfilled every deadline, the volume of work consistently increased. Today, she's been doing the job for Datamatics for over 12 years, with the same diligence and enterprise. And as productive as anyone blessed with all motor functions.
It would have been easier to shut out the world and curse her fate. Easier to call it destiny and give up trying. Easier to simply let others do everything for her. But Arlene was determined to regain control of her life -- however endless and arduous that journey seemed, overcoming dark days of despair and doubt and pain.
And, of course, with the steely support of her family. Especially her mother and father, who have stood by her like a rock emotionally, mentally, physically, economically. Her brother and sisters and their families, her friends and relatives, who've always been there for anything she needs.
Some in Arlene's emotional state would have resorted to anti-depressants. Actually Arlene did too -- except they were anti-depressants of a different kind her nephew and nieces! Little as they were, back then, they instinctively grasped the gravity of the situation. They realised she could no longer perform simple everyday tasks, and became her hands and legs. Having grown up into worldly-wise teenagers, they continue to be her emotional support.
Other support has poured in from all over. Arlene stays on the first floor, in a building that has no elevator. Her parents are senior citizens while her siblings reside far away. So it was her neighbours who came to her aid -- helping to carry her up and down whenever she required.
For one in Arlene's condition, the support system is critical to ride through the emotional rollercoaster that each day would bring. Arlene insists the degree of one's recovery is directly proportional to the intensity of this support system.
Miracles still happen
It's been over 15 years since that fateful day. Yet, in an inexplicable way, it has given her a new perspective on what life is all about. To appreciate the little things that most of us take for granted. To cherish even the most mundane of tasks. To value the priceless bonds of family and friendship. Underlining the axiom that life itself is a gift, and never a guarantee.
Life's tragedies inevitably leave its victims bitter and cynical. Not Arlene. Even rank strangers who have interacted with her are amazed by her calm, cool, collected, unruffled and cheerful demeanour. She keeps in touch with others in similar situations via the phone and internet, sharing problems, inspirational stories and tips on how to overcome common difficulties.
For those who saw her soon after the accident, the Arlene of today is a miracle, carrying out most of her personal tasks independently. Arlene insists that what pulled her through is her trust in God, the support of her family, friends and relatives, willpower and determination to confront the most overwhelming odds. For her sheer grit and the inspiration she provides to others, Arlene was conferred the Nina Foundation's Rockstar Award recently. An NGO, Nina Foundation offers rehabilitation services to people with spinal cord injury.
Through her ordeal and subsequent triumph, Arlene says she discovered one of life's most consoling truisms: That even when things seem at their lowest and most desolate, God never abandons us.
"Never give up hope. Because, sometimes, hope is all you will ever have," she says.
Image: Arlene D'Souza at the Spinal Cord Injury Awareness Day organised by Nina Foundation on June 25, 2010, in Mumbai. Photograph Courtesy: Nina Foundation