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“Why me?”, the niggling question that pervades one’s sense of being when something catastrophic hits them out of the blue — is seldom met with a satisfactory answer. So, at what point does this soul-destroying question transform into unconditional acceptance? The answer lies in Gulshan Narang’s journey to finding acceptance in a situation he could barely make sense of.
At age 53, Gulshan is a Parkinson’s Disease warrior, whose life changed forever, around five years ago. While the initial few years passed by, peacemaking with the news of being diagnosed with a serious brain disorder, Narang no longer stands at crossroads with coming to terms with his ‘new normal’. But as one may imagine, it takes strength of a special kind, to visit the depths of your own heart, embrace your life’s greatest obstacle and turn it into victory.
Starting his first job in 1994 as a sales executive in Dubai, Gulshan quickly climbed the corporate ladder and eventually opened his business in creative gifting. Even though the business took off to a good start, life had other plans for Gulshan. A few years later, he was diagnosed with Parkinson’s — a disorder that affects the central nervous system, compromising body movement and leading to symptoms such as tremors, stiffness, problems with balance and coordination. Upon his diagnosis, doctors suggested less stress, limited time with gadgets and regular counselling. The couple had to shut shop in Dubai and find other ways of earning a livelihood, which meant moving back to their hometown, Mumbai, India. “We miss Dubai every day, we had built a life there,” said Gulshan, who had been living in the UAE for over 25 years, prior to getting diagnosed with the neurological condition.
“We moved to India once the symptoms started to get more serious,” says Kajal, his wife and caregiver, who previously won season four of a popular food reality show in the Middle East, Foodshala, and was running her own restaurant at the time. But once Gulshan’s condition started deteriorating, she was ready to wrap up her passion project and relocate to India, in order to better manage her husband’s condition.
The grief of illness
The symptoms of degenerative, neurological conditions, such as Parkinson’s, can often be mistaken for more common causes, such as fatigue, weakness, vitamin deficiencies, as a result of which the issues can go undiagnosed or misdiagnosed for a long while. So, how did the couple discover Gulshan’s condition in the first place?
“It started with tremors in my thumb and my vitamin D levels went down drastically. We thought it was weakness or lack of vitamins and it would pass,” said Gulshan.
“Gulshan had always been a very hyperactive person, he could never sit still. He was always multitasking, and would do 10 jobs at a time. And suddenly, I felt that his energy levels were very low,” mentioned Kajal. “We got him checked, through the usual blood reports and additional tests, after which we consulted a neurologist. That’s when we found out it was Parkinson’s.”
Up until that point, the couple had no idea what Parkinson’s was and had hardly ever heard of the disorder. To get struck by something they didn’t even understand, added to the mental unrest caused by the diagnosis. “It felt like the worst thing that could happen to anybody,” said Gulshan.
For Kajal, the lack of knowledge around the disorder meant that she didn’t know how to offer adequate support. “I started reading up about it, to make sense of it and figure out how we can manage it. The medications have to be very timely, and the dose can be varied, there’s a lot of study behind how to manage the condition,” said Kajal.
The medications also control the person’s sense of normalcy. Based on the dosage, people with the degenerative disorder go through ‘on and off’ periods, in cycles, every day, depending on how long the medication’s effect lasts in the body. “After his medication, he would appear completely normal, as though nothing has happened. Whatever the symptoms might be — tremors, slowness, dyskinesia, rigidity — it comes under control. But once the effect wears off, he would face a huge downer and would go back to being reserved,” said Kajal, adding that being on lower dosage and staying active is what has worked for Gulshan “because once you increase the dose you cannot go back,” and the higher the dosage, the greater the discrepancy, in the ‘on and off’ periods.
The ‘right’ way forward
Navigating the ‘right’ way forward caused a lot of sleepless nights for the couple initially. “It’s a progressive disorder, so it’s not something that comes in and just stays that way. The pace at which it progresses depends on person to person. No two people with Parkinson’s have the exact same symptoms, which makes it even more difficult to manage,” said Kajal.
But the mental hardships that ensue in the process of coming to terms with a situation as difficult as this are too complex to navigate. “He started to distance himself from social situations,” mentioned Kajal. “I was very social earlier. But after this happened, I found myself completely withdrawing from going out or being around people,” Gulshan continued.
What Gulshan was unable to come to terms with was the uncertainty of the situation and what it would mean for him and his family, but in doing so, he disregarded the fact that nothing in life is certain, except its uncertainty. The path of coming to this realisation got accelerated through an eerie instance shared by his close friend. “My friend pulled me up one day and said to me ‘Nothing in life is certain. Look at me, I’m here today and suddenly I could meet with an accident and be gone forever. So, just appreciate life in this moment, who knows what will happen tomorrow?’” His friend’s words echoed in his mind long after the conversation.
As it turned out, the friend actually met with a severe accident on Abu Dhabi-Dubai highway and passed away. Just a week after he had urged Gulshan to come out of his shell and tell people he had Parkinson’s. “He said, ‘Once you accept your situation, things will become very easy for you’,” recounted Gulshan. “I have to accept my situation first, in order to make others accept it for what it is.” His friend’s departing life lesson then became the mantra in Gulshan’s newfound zest for life, transforming his life for the better.
Now, never mind the challenges, Gulshan lives an inspiring life, fostering an online community and spreading joy through the arts. To overcome the inevitable challenges that lay before him, Gulshan found hope through his love for dance and continued to practise his passion as therapy. From family functions to weddings in Dubai and India, Gulshan choreographs beautiful dance routines to not only spread awareness on the disorder that usually doesn’t find a place in mainstream conversations, but also creates awareness for other Parkinson’s warriors. “Two things happen when I dance, my energy levels come up and my mind feels fresh,” mentioned Gulshan.
The Parkinson’s warrior founded his own YouTube channel ‘Khul Ke Naacho’, where he shares his dance routines focusing on certain hand and leg movements that help in coordination, featuring both him and other people with Parkinson’s through a digital community. “Dancing has helped me in so many ways. It took my mind off things. The content creation is also a lot of fun and something I’d never imagined myself turning to. But it made me a lot happier,” he added.
The energy radiates to other people facing similar hardships in life as well, believes his wife Kajal. “Other people with Parkinson’s have got inspired by him. He was performing at weddings, choreographing for family functions. Seeing him live his life, it encouraged other Parkinson’s warriors to do the same,” she added.
Gulshan has also worked on a short film showcasing his story, shedding light on the challenges faced by Parkinson’s warriors. Directed by Dev Sajnani and produced by him, the film titled Life with Parkinson’s, includes Gulshan’s real-life instances, of what his version of ‘normal’ looks like, so the audience can relate and understand what people with similar situations have to endure in this journey. “I was left with only two options — either I sit and cry the whole day, or I go out and live my life. I chose the latter,” the Parkinson’s warrior signed off.
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