My brain is my powerhouse’ she said with a twinkle in her eye when I met her! And I was infected!! Diagnosed with Limb Girdle Muscular Dystrophy, which is a progressive terminal disorder, at a mere sixteen and a half years, when all at her age are brimming with energy and enthusiasm and spiritedly looking forward to life, Deepshikha was given a maximum life span of 10 years.
While other teens ran and jumped around in their various pursuits of teenage excitement, she noticed walking issues while climbing stairs and carrying bags which led to this diagnosis. She wanted to be a doctor. However, she had to drop that career pursuit because of her daily routine of 4-6 hours of physiotherapy at that time. All academic goals changed. The family also gave up all such goals for her… So she took to arts.
Another trauma that ran along through this was to keep her condition hidden from the world so that this did not jeopardize her younger sister’s future prospects of marriage. The frantic family tried all alternative treatments, through the first few years, as Deepshikha tried to continue her study and to face the world. She found her friends moved on as they followed their individual quests in life. It was cruel seeing and feeling left behind. She felt that no one had the heart to be with her. Except for her younger sister. She learned to be content with the fragrance of the ‘madhu-malti’ drifting up to her room from the garden below. Good happens to good people said Shivani, egging her on daily through every step.
She struggled with the emotions of a young girl, that could not come to fruition alongside the fact that you are dying. She found her parents busy as well – dealing with their own trauma and trying to find treatments and solutions to get their girl back up and around.
The next ten years were very tough. Seeing her friends move on, it was only normal for her to ask questions like ‘Why me’…Despite this, she went on to excel academically – the one strength to prove something to the world of her existence. Deepshikha graduated in law but could not complete her master’s – not because she could not but because of the inaccessibility of the exam room which was on the first floor…she could not bear the humiliation of not being able to reach anywhere alone, having had to be lifted to the exam room – the mortification was unbearable. Eventually, she had to stop painting in 98 when she lost the dexterity of her fingers. The artist was living but the disability took over. The last straw came when her younger sister moved on to work. Her only remaining friend through life was lost to her work. So at 28 years of age, when she had totally lost her mobility and could not drive as well, she took a hundred sleeping pills and also tried to slash her wrists. Fortunately what she tried was not to be.
Home alone, at her lowest ebb, sister at work and parents out of town, someone knocked on the door and a young guy asked, ‘ Madam aapne bulaya tha, boutique kholne ke liye tailor chahiye’…This turned out to be a Godsend. The sharp mind which was alive and ticking despite all disability made a mental list of all things required for a boutique… And so the artist took a different turn in 1999 and started a boutique with 3 people and a meagre investment of Rs.10,000/- because she sensed an opportunity…
Her parents gave in to her demand of the paltry sum, thinking that some happiness would pass her way and would keep her busy. The family looked at this as a paid companion which they had been looking for… Meanwhile, the young made did make some good outfits and she started yet another journey.
‘If you apply yourself, you can do just anything’…
Deepshikha earned, sustained herself, and returned the paltry investment to her parents in just the first month. A big high came when she became a taxpayer and was earning more than most of her classmates. And while that was a high, it was also a learning point that earning money is not that big a deal – anybody can earn it.
Realizing that at 30 years she was indeed alive and doing well, she told her mother ‘ I want to live a full life. If people live 100 years, I want to live everything in 30 years, I want a family and responsibilities, and I want to feel and enjoy everything so I want to adopt a child. And so Inara came along in her life. Her parents helped her work through the process and since she comes from a family background of law, she became a single parent to a lovely girl to complete her circle of love. Perhaps one of the firsts in the country…
Her greatest strength came from her powerhouse ‘her brain and mind’ with support from the most loving family to help her overcome her greatest difficulty – the disability that keeps increasing by the day.