Sydney Gujaratis to dance for Sanjay Vaidya, Stephen Hawking and MND

Sanjay and Hema Vaidya

By Aradhana Bhatt

Over the years, the Red Nose, the Pink Ribbon, the Bandaged Bear and the Daffodil have become icons of Australian generosity and empathy. The Blue Ribbon, the shaved heads and the grown beards and moustaches are relatively recent additions to the list of our medical missions to conquer the unconquered, to beat the unbeaten. On days of those special campaigns, media become rife with stories of survival, of tenacity, of beating odds with calmness and courage, of dedication and devotion.

Medical science has come a long way, yet there are a million miles ahead. This truth hits hard when we see Sanjay Vaidya, a patient of Motor Neurone Disease (MND), also known as Lou Gehrig’s disease or Amyotrophic Lateral Sclerosis (ALS). MND is a group of diseases in which motor neurons die. Motor Neurons are nerve cells that control the movements of the voluntary muscles, including muscles of the arms, legs, back and neck and of speech, swallowing and breathing. Luckily MND does not affect the workings of the brain and therefore in most cases the cognitive and behavioural functions remain largely unimpaired. Statistical information from MND Australia indicates that the average survival time after diagnosis is two and a half years, as there is no definite treatment available for this crippling condition. Happily, there are some remarkable exceptions to this generalisation- celebrated Oxford physicist, cosmologist and Stephen Hawking is a living miracle, who after three decades since the diagnosis of MND, now communicates with a speech generating device attached to a single cheek muscle.

Sanjay, an IT professional, who has lived in Sydney for around three decades, has always been a remarkable human being, remarkable for his gentleness and humility. A busy professional, a devoted family man and a father of two daughters, Sanjay has been a silent community worker. Having led an active and busy life, Sanjay looked all set for a healthy retirement when the time came.

A firm diagnosis of MND came just over a year ago, after several visits to specialists, and rounds of complex investigations. When I speak with them, 58 year old Sanjay and wife Hema recall the day the neurologist broke the news to him, when he attended the specialist rooms with his older daughter Ruhie.

“It took us a while to actually comprehend the gravity of this disease until we came home and looked up the internet. The reality dawned only after reading about it on the net. The first few months were quite easy. The disease appeared to progress at a slow pace,”says Hema. Sanjay continued with his professional commitments for the initial months, often working from home.

Now a wheel-chair-bound Sanjay looks a little frail, but is no less calm, no less cheerful, no less interested in everything and everyone around him and no less positive. Jokes about the ”˜man- flu’ are currently in season, but Hema admits she hasn’t seen anyone stronger than Sanjay, whose positive attitude has kept the spirits of the family going.

I ask him how he manages to do that and what lifestyle changes the family have had to make. “Instead of thinking about which of my body parts are not functioning, I try to focus on what is working and I ensure that I make the most of that by trying to do as much as I can, for myself and for others and the community”.

Hema describes at length how he needs to drink with a straw, his dietary changes, the morning nurse, the visits by physiotherapists and occupational therapists, and above all the need to move homes because their old family home had too many steps for Sanjay to negotiate. His daily routine includes Yoga and meditation; he tries the holistic approach, drinks a lot of water. He meets and greets the incessant flow of visitors to his home.

When life takes a sudden, sharp turn, it brings home a realisation of stark and simple truths. ”˜What have you learnt during the last year?’ is my final question to the couple, “Live in the moment, appreciate each day, laugh together each day, never take anything or anyone for granted, and ultimately resign and accept the will of the super-power”¦” they both respond in turns.

The Ice-Bucket Challenge is MND Australia’s fundraising event to raise much needed funds for research. This year the Gujarati community of Sydney will be dancing for MND during the Navratri festival. A charity Garba night has been organised at Bernie Mullane Sports Complex, Kellyville from 6.00 pm on Saturday 23rd September. All proceeds from the night will be donated to MND NSW.

One does not have to be great to inspire others; greatness is mostly found in the most ordinary of humans. The irony of life, however, lies in the fact that very often adversity unearths greatness. The only wish we could have for Sanjay and his family is that Stephen Hawking may not remain the only miracle of MND and that Sanjay may join the ranks.

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