Authors: Jamuna Rangachari
Dancing with Life (11 page)
N
O DISEASE OR PROBLEM SHOULD BE ABLE TO STOP
you from living a complete life. In this chapter I would like to mention the people whom I have met and read about in the course of combating my MS; whose stories have given me strength to live, and wings to fly.
Suresh Pandit* (name changed)
Suresh Pandit, an IIT alumni, has been dealing with MS quite well. In fact, this Mumbai resident spends most of his time counselling and helping others afflicted with MS.
In 2000, Suresh had been falling every three steps while walking. His doctor referred him to the neurology department of a hospital where he was diagnosed with MS. The neurologist told him there was no cure for this ailment and he would have to learn to live with it. Naturally, he was extremely depressed as he was just thirty-eight and had his whole life ahead of him. He did not know what to do.
However, he knew depression would not get him anywhere but only lead to stress which was sure to aggravate the problem. Hence, he soon pulled himself up to focus on solutions. For nearly twelve days, he did all his research (primarily on the Internet) and realized that steroids – which were the only medicines considered effective in treating MS – were neither safe nor really effective.
He knew he could have issues in reading, bowel and bladder movement and perhaps in mobility too. He began to do
pranayam
,
kapalbhati
,
anulom vilom
, and
bhramari
without fail. He also started to stand on one leg at a time to improve the strength of his leg muscles. He started this by standing for one minute, one leg at a time, and slowly graduated to standing for twelve minutes on each leg at a time.
Apart from these exercises, homeopathy also seemed to offer a ray of hope to Suresh. He continuously took homeopathy medicines for eleven years until he ‘felt’ cured. Knowing that diet is important, Suresh, who used to be a non-vegetarian earlier started following a strict vegetarian diet, as vegetarian food is easier to digest.
He hoped these steps would help but was not really sure if they would be able to stall the progress of MS. He began working out more vigorously and began preparing himself for being mentally strong in the face of any eventuality.
Since he knew he could have MS-related vision problems later in life, he started working on that too. The first thing he addressed was trying to understand how technology has progressed in the case of people who are blind. He learnt the Braille system and also downloaded the software, Jaws, that reads material from the computer to the blind. He regularly went to the National Association of Blind (NAB) and taught them Jaws, and in a sense began to understand their lives better.
Leading a purposeful life became his goal where he would counsel people to lead a normal life and encourage them to take part in all the activities they liked, instead of just being stuck in a web of self-pity. Till today, Suresh spends every Sunday with MS patients counselling them and their caregivers. Every Saturday, he volunteers with Teach for India (TFI), a nationwide campaign that focuses on teaching the underprivileged.
In 2006, he took another MRI test and found no lesions in his brain. Most of the Internet research he had done concluded that if there is no MS attack for seven years, chances are that MS has vanished from a person’s life. So yes, Suresh considers himself cured.
He still keeps reading on how he can become better and even guides other people afflicted with MS. We can see that he takes care of his body, mind and spirit and I do believe this is why he is on the path to wellness and shall remain there.
I, for one, surely believe that this attitude of his has contributed to his well-being as the focus has been on others and not just himself.
Divya Palat
I read about actor Divya Palat who had come face to face with the worst-case scenario of MS but had managed to bounce back. I had read about her story in a magazine.
In 2005, Divya Palat was a bubbly twenty-two-year-old Stanford alumni with a successful professional life. She was busy with theatre and TV assignments, and had done films like
Masti
,
Kuch Na Kaho
and
Krishna Cottage
. Then one Tuesday morning, Divya woke up and discovered that her speech was slurring. An MRI was done and her condition was attributed to a wisdom tooth that had just started to grow. The doctor didn’t take it seriously. Gradually, she developed a low-grade fever. By the end of the week things got progressively worse. She was supposed to deliver a lecture on theatre and she reached the venue at 3 p.m. when, in fact, the lecture was at 7 p.m.
She couldn’t speak properly and the lecture, which was supposed to take forty-five minutes, took her two-and-a-half hours. The next day, she got ready to go to an event, only to be told by her mother that the event was a week away. She was rushed to the hospital where an MRI was done and she was diagnosed with MS.
While she was in the hospital, her boyfriend, model, Aditya Hitkari proposed to her. With Aditya by her side, Divya decided to take up things she had always wanted to do. With the doctor permitting her to work after her second MRI, Divya started working fullfledgedly on her production company that she started a few years ago. She says, ‘…that defined what I really wanted to do. The work allowed me to direct, act and produce, so that every minute would be fruitfully used.’ She also started acting workshops which proved to be therapeutic. She said, ‘As I taught other people to act, I was teaching myself to live.’
As she was in Mumbai performing a play when I read the article, I went ahead and met her and bonded very well with her. She remains a friend and an inspiration as she combated the disease head-on.
Jigna Chanpura
Jigna terms her life from the age of twenty-eight, when she suffered the first MS attack, to today when she is thirty-eight ‘an amazing journey’ because it taught her to be strong, to be positive and also brought to the fore other qualities and talents she was unaware of.
According to Jigna, if one thinks positively half the battle is already won. Explaining her life philosophy she says, ‘See, you have two options. Either you think about what has happened to you and sulk, or work around your limitations and live your life to the fullest when you have the chance. I made the second choice. I don’t know what is going to happen to me the next day. So I want to live my life. Yes, I do have my limitations and restrictions, so what? I can always keep those in mind and still enjoy. This is what every MS patient should do.’
In August 2010, Jigna quit her job at a bank because tremendous fatigue and the daily commute were proving a bit too much for her to cope with. But being someone who cannot just sit at home doing nothing, after a few months’ break Jigna took up a job of handling creative activities for children at a preschool near her house. ‘I have always been a creative person and used to make wall clocks, pen stands, etc. So when I was offered this job I had to take it up. And being with kids is such great fun,’ said Jigna, who is grateful to her current employers who are very supportive of her.
In 2011, Geeta Mirchandani, a full-time volunteer with MSSI, asked Jigna whether she could counsel young patients attending the MSSI sessions. That became a turning point in her life as she felt a sense of fulfilment helping others in similar, and sometimes far worse situations.
Talking about what the society needs to do for MS and its sufferers, Jigna stated, ‘People with MS need to be given equal opportunity. They need to be understood and supported. Sensitization of the society is required.’
Jigna is among the few lucky ones who got the right support at the right time from her family and MSSI. She said, ‘My family was very concerned and a bit disturbed when they learnt about my condition, but then they have been there with me throughout. They are still concerned but have always let me live my life my own way.’
With so much support, Jigna has amazing plans for her future. ‘I want to take my creative ability to a higher level now. I want to have a gift shop of my own. I will surely find a way and fulfil this dream of mine,’ she said convincingly. And yes, she also intends on settling down, provided she finds the right man. ‘I need someone who will understand my problem and will be sensitive. If someone like that is out there, then why not?’ said Jigna with a smile.
On being asked to give a message to people suffering from MS and their families, Jigna said, ‘Do what you like the most. Keep yourself busy. Have a positive approach towards life. Give support to others. Never quit. You have to make things work. MS is not a full stop to one’s life, it is just a comma.’
Jigna also met former model and actor, Milind Soman, who is the cause ambassador of MSSI in India, and whose magnetic personality livens up its events. He is an active participant in many MSSI sessions, offering ideas and feedbacks. One day Jigna got an opportunity to talk to him. After hearing her litany of problems he tentatively suggested, ‘Why don’t you try some kind of fitness activity? Maybe it will improve the quality of your life. Why don’t you aim to run the Mumbai Half Marathon that will be organized in a few days?’ Even though she had laughed off his suggestion then, it lit a spark. She started taking short walks around her society compound. From ten-minute strolls she progressed to thirty-minute sessions. Her lap time improved with each passing day, until she was walking almost an hour non-stop, which for her was a huge achievement. She kept updating Milind about her progress and he persuaded her to stay focused on her ultimate goal, i.e. running the half marathon.
By the day of the marathon, she had spent close to four months preparing for it. Her family members were filled with anxiety. She, on the other hand, felt super excited even with all the self-doubts. MSSI had arranged a few volunteers including a physiotherapist, to keep an eye on her and help her through any crisis she might encounter during the marathon. The first five kilometres took her about 1.5 hours. The real struggle began after the fatigue set in, leading to dizziness. And with the sun slowly rising over her head, her energy levels dipped dangerously.
Although she had worn a protective full-sleeved T-shirt, comfy shoes, and a cap, and stayed well hydrated, the walk tested her endurance sorely. She could hear herself gasping for breath with each step as her lungs swelled with the effort. She had severe cramps in her legs from all the running, and she would have prematurely aborted her marathon effort had it not been for her physiotherapist who forced her to keep taking two to three minute breaks on the sidewalk to rest, stretch and massage her tired legs.
Time and again her running partners asked if she wanted to quit. She told me that after a period of time she had become so numb that she was in no state to analyze or process what was happening around her. Like a zombie she just plodded on, telling herself she could do this if she shut her mind and concentrated on the road ahead. At eighteen kilometers, she did something unexpected. A bus stationed at that point was picking up tired runners who had given up their running efforts. As the participants neared the bus, she was asked a number of times whether she wanted to join them. She was sure to take another two hours to reach the finish line but she refused to get into the bus and assured everybody she would make it on foot.
Ultimately, it took Jigna nearly seven hours to finish the twenty-one kilometres long marathon.
Her parents and relatives who had been waiting anxiously at the finish line were overjoyed. Teary-eyed and full of emotion, seeing the overwhelming response around, Jigna called Milind on her cell to share her success. He immediately went on Twitter to announce her achievement. Even the media went ballistic narrating her success story. She was later feted by MSSI for the feat.
Perhaps the best outcome of her ‘marathon effort’ was that it instilled the workout habit in her.
I would like to reiterate here that exercise is essential for everyone. If one has a health challenge, it becomes even more important.
I could see that Jigna was a heroine, able to inspire so many people at one go. She is clear that while MS may have fettered her body and her brain, her spirit remained intact because of her sheer willpower.
Mrinalini Bali
Mrinalini was pursuing MBA in human resources (HR) and a Masters in Labour laws & welfare simultaneously in Pune after finishing her graduation from Delhi University. It was at this time, in 2002, that MS attacked her. Very little was known about MS in India back then and it took a while before her affliction was properly diagnosed.
She underwent a protracted period of anguish and uncertainty, before she found a treatment that was helpful. Moreover, the treatment essentially comprised of being pumped with massive dose of steroids. She suffered from eight relapses and her condition was rapidly deteriorating despite remedial measures including acupressure/acupuncture, yoga, hyperbaric oxygen therapy (it uses a special chamber, sometimes called a pressure chamber, to increase the amount of oxygen in the blood), homeopathy and Ayurveda. The last treatment was particularly damaging for her and resulted in severe physical incapacitation and memory loss. Alongside, she was also administered interferon injections with negligible results.
Finally, as a last resort, she went and met Dr Yeshi Dhonden, a practitioner of Tibetan Medicine at Dharamsala in 2010 and within a month there was a perceptible improvement, including improvement in her symptoms of constipation, slurring of speech and shaking of hands. For the past three-four years now there has been no relapse since she started taking Tibetan medicine and is happy that she is improving steadily. She has resumed walking, jogging, cycling, driving a car and other activities that she had missed so much in the course of her illness. Apart from the Tibetan medicines, her affectionate bond with her parents, elder brother and her pet beagles have made her healthy and happy once again.