Anjana Rajguru spoke to Ex-RJ C. Pallavi Rao Narvekar on her trials and tribulations of living with Myasthenia Gravis.
A Bharatnatyam and Kuchipudi dancer, painter, ex-NCC cadet, an erstwhile teacher, former theatre writer/director, current Group Head- CSR of Radio Mirchi and former RJ, C.Pallavi Rao Narvekar, the talented lady has donned many hats and played all her roles with equal elan. Life was on a roll but cut to, August 2005, when Pallavi was rejoicing in motherhood with her newborn son, she suddenly woke up one day finding something amiss and unable to breathe. An emergency visit to the hospital allayed her fears which unfortunately was short-lived as within fifteen days of the attack, she found herself slurring and unable to speak – a nightmare for any Radio Jockey and more so for one who was ruling the roost. Pallavi shares “One morning, as I started to brush my teeth, I could not spit the froth out. It went splashing all over the wash basin and my cheeks felt lifeless. I had to put my fingers inside my mouth to get the froth out. I thought I would choke. My gynecologist directed me to neurologist Dr. Vinit Suri who after a series of tests, diagnosed my condition as “Myasthenia Gravis” which at that moment was Greek to us. What we also did not know was that OUR beautiful life was changing forever from that precise moment”.
Pallavi was an all-rounder and dabbled and excelled in everything ranging from NCC to theatre, painting, winning the Miss.Geography and best dressed female contests in college, being a college topper; she was even offered a National scholarship to pursue her Masters from Delhi School of Economics which she refused at that time opting instead to be a teacher in St. Mary’s School and choosing to do B.Ed through Distance Education from Annamalai University. She was also part of a theatre group called “Darpan”, where she wrote and directed about 15 odd plays and came either first or second in the Delhi State level Nukkad Natak competitions for 7 consecutive years!
On Her Tryst With Radio
Pallavi comes from a family of journalists, her father retired as the sports editor of the Hindustan Times after working with AIR, her mother Girija Rao was a film journalist with ‘SCREEN’ and her brother Rajashekhar is also a Sports journalist and presently is with the ICC. He is also an author, having penned short stories as well biographies of Dhoni and Virat Kohli.
Pallavi shares of her tryst with radio “I loved teaching and interacting with children. Yet my first love ALWAYS remained RADIO. As a kid, I used to listen to the radio with my father and was fascinated with the idea of capturing the attention of listeners with just the power of one’s voice. By 11, I knew I had to be inside that black transistor one day! After a lot of cajoling, my father took me to All India Radio (AIR), Parliament Street, where he was a senior and much respected sports journalist in the 80’s and 90’s. He used to do sports update, a weekly sports magazine on Radio and I would be after him, requesting him to give me a chance to read his script on air. Obviously that wasn’t possible. So one day, he took me to AIR and then left me to fend for myself. I went from one room to the other looking for work. Everywhere I was told to wait till I graduated. But I just had no patience and fortunately, got an opportunity of being a Quiz Master on Yuva Vani. As luck would have it, the original host arrived and I was relegated to being the score keeper! That was my debut on air and thus began my long affair with the love of my life – Radio. My ultimate ambition in life was to be a newsreader on AIR like Barun Haldar and Vijay Daniels. Post my graduation, I went on to become a Hindi announcer with Doordarshan and from a professional Voice Over artist, doing Radio ads, TV commercials, corporate films, Emceeing, reading the news for Rozana (DD), being on Aap ki Adalat Aap ka Faisla (Zee TV), to voicing some of the best shows on Zee of those times – “Zaika ka safar”, Lets Talk with
Anuradha Prasad, Insight, I did it all. I became an English Radio Jock with Times FM first and then joined AIR FM as a Hindi Radio Jock.
In 2002, the private FM opened in India and I got through the best radio station – Radio Mirchi. I was the prime-time jock with them when we started in Delhi, hosting the evening drive time show called ‘Bumper to Bumper’. The show and the frequency got such immense popularity that I became a “mini local celebrity”. Post Pallavi’s illness, since she could no longer host the show as she had lost one of her vocal chords, she went on to become the breakfast show producer. But Pallavi was determined to get back on air and had promised herself that one day she would. In 2011, Pallavi made a comeback on air with the breakfast show ‘Hi Delhi’. Pallavi shares “Hoardings across the city screamed, ‘Pallavi Is Back’. I did not mind sharing my story on air with the Delhi listeners. All I got back in return was love-love and more love. However, the single vocal chord could not sustain the 4 hour high pressure show and I stepped down. Radio Mirchi supported me all along and I was made the Group Head, CSR, the role which I don even now. Mirchi Cares is the CSR initiative of Radio Mirchi that I consider my baby. We provide not just audio support and entertainment to the blind and visually impaired but also provide music education to them and the under-privileged children. Am proud to be associated with the making of the first braille menu for the blind in Delhi at Chungwa restaurant as also the 3-in-1 all accessible menu in the Bombay Blue chain of restaurant in Mumbai”.
Living With Myasthenia Gravis
Myasthenia Gravis is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups with symptoms that can include drooping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficult breathing. Pallavi says of her condition “Frankly speaking, the year it hit me, that is 2005, I had no time to give it undue importance since I had a small baby to look after and a target of getting back on air as soon possible. However, as the months went by, I realized that the steroids were not of much use and the main medicine for muscle strengthening was also not working well. That is when the doctor suggested Thymectomy, removal of the Thymus gland which involved cutting the sternum. That surgery done, Thymoma was discovered and I had to undergo chemotherapy and radiation that pulled me down completely. What however, came as a rude shock was that post my surgery too, I was unable to speak clearly. The slur was gone but the voice was feeble. No one could hear me. I had to keep a bell next to my bed to call for help. People had to keep their ears next to my face to hear what I whispered. Apparently, one of my vocal chords got paralyzed on the operation table, during the surgery. Luckily, we have two of them which somehow got me going. The ENT had clearly said I would never be able to go back on air. I took it up as a challenge and told my mother who was nursing me, that I would prove the doctor wrong. Soon after the (open heart) Thymus removal, I took help from Pawan Kumar – my yoga guru, who further instilled confidence in me saying that he would ensure I got back my voice. Since one vocal chord was paralyzed, we worked on the other and I did yoga, pranayam and meditation. And within months I could feel the difference. My husband Rahul, my rock solid support – forever optimistic, goaded me on. He encouraged me to do the 7 km dream run in the Airtel Delhi Half Marathon the following year. Training with a supremely talented Reebok Instructor, Shiba Mehra for the Marathon, I continued my training the entire year, and the next year, thanks to her and Rahul, I ran, jogged, walked and dragged the 21 km Airtel Delhi half Marathon. My husband, a serial marathon runner, let go of his timing, to be right next to me in the entire 21 km track and telling me time and again, that it is ‘All in the mind’. We completed the half marathon. All was good. Or so I thought”.
Pallavi continues “A few months later the breathlessness started again and once again the tumour surfaced behind my left lung and I underwent another major surgery and 5 tumors were removed followed by chemotherapy and radiation. This time I questioned. Why? Why this? Why now when I had been looking after my body so well. I had never been fitter than this ever in my life. Eating the most nutritious food, being responsible, taking life easy, respecting each breath – life changed drastically. I was suddenly prone to all types of infections all the time. If I went barefoot on the floor for as much as less than a minute I would catch a cold that would take 20 days to go. Pneumonia and lung infections became so common in my life that ventilator now seemed a friend and the ICU, a second home. I still got over it all. Post the second major surgery, my action and daily life was restricted after a very bad attack of pneumonia. Suddenly I lost a lot of weight and was losing strength in my hands, legs, shoulder, facial muscles and my neck. A quick MRI showed “Hot spots” in the right lung. The doctors, after much deliberation, decided to remove the hot spots as a precautionary measure. That meant a third major surgery which gave short term respite. In October 2016, I had Type 2 lung failure and was back on the ventilator and the ICU. The year had been tough. Insomnia had charred my life. Post the third surgery, my diaphragm had not only moved up causing the left lung to shrink with no space at all but it had also forgotten its job. The result was that I was unable to sleep on my back; I would sleep sitting on the bed for 2 hours at a stretch only to lose balance and fall of the bed. It worsened to the extent that I would doze off during day time, in meetings and even while standing. One day I fell 180 degrees on my back barely missing my brain. I was rushed to the hospital and was in ICU for a fortnight. Since then I have been on an AVAP BIPAP machine, an external non-invasive ventilator, that I need to use for 2 hours during the day but now at least, I can sleep well in a lying down position”. Pallavi’s medical nightmares continued to haunt her and due to long-term use of steroids, she developed premature cataract in both her eyes and was unable to see clearly. She underwent a surgery for one eye recently and is due for the other anytime now. Due to her medical complications, even a seemingly simple cataract operation is a big surgery with constant monitoring in the ICU.
Support By Radio Mirchi And Winning Numerous Awards
Pallavi shares “In my entire struggle over the past 11 years, the office has stood by me rock solid. Never questioning my absence and allowing me to work from home. Thanks to technology and now the nature of my work where I do not have to work in the studio hands-on, working from home has been a boon. I can’t thank enough Prashant Pandey (CEO), Tapas Sen, G .G.Jayanta and Riya Mukherjee for reposing that faith in me. And that is why I too ensure not to disappoint anyone. Working as Group Head, CSR, Radio Mirchi, I have both the pleasure and satisfaction that I need from my work. Radio Mirchi’s CSR projects have won many accolades over the years like ABN News CSR Awards 2016 and 2017, ACEF CSR Awards 2016, National CSR Leadership award 2016, Blue Dart-Global CSR Excellence Leadership Awards 2016, E4M awards, Readers Digest Pegasus Award, Golden Peacock CSR awards to name a few”.
Pallavi was adjudged one of the top 100 CSR workers globally last year during the World CSR day and this year, was honored as “SRL Woman of Substance 2017” on the occasion of International Women’s Day.
Countering Emotional And Physical Challenges
Pallavi optimistically states “Thanks to yoga and meditation, I have been able to calm my mind and regular body massages are helping me get back my strength in my legs and hands. I have recently given up on gluten and try to consume at least 70% of my daily food intake of only raw vegetables and fruits, juices, soups and salads. I gave up on sugar and milk a year ago. Refined food is almost totally out of the household. And the difference is staring right at our faces. High energy levels and a happier us”. “Also, the support of my family – my husband, mother and brother, has been phenomenal and that has kept me going”.
With Husband Rahul.
Pallavi says of her enormous challenges and experiences “I believe all of us have to face our share of downs in life. I accepted this to be mine. What has helped me to remain sane and positive through this journey is simply put “GREED” – the sheer greed of living this life fully with no regrets, of wanting to be around till I grow old to see our son become one handsome, independent man, of being around my mother and brother and see their happy faces each time I smile at them. The utmost greed of being with the love of my life, my husband for a much much longer time and ultimately settling down in a house by the beach with him. The greed of living this lovely life just a bit more and a bit more healthily”.
Advice To People Battling Similar Problems
Pallavi feels that acceptance is by far the first step towards management of neuromuscular disorders in general and Myasthenia Gravis in particular. She adds “Listen to your body and rest when it wants to! Take help from whoever is close by and or is close to you. There are things that you might not be able to do all by yourself today so it is OK to ask for help. Take someone’s help for having a bath, changing clothes, lifting things etc.. Myasthenia Gravis and other neuromuscular issues are such that they come and go into remission. So there would be good days too! Small changes need to be incorporated when the going is tough”.
Release Of Her Book In ICU.
On Reasons For Writing Her Book – “ICU- Love Stories”
Speaking of the book she wrote while in ICU, she informs “I wrote it simply because I was the only one conscious in the ICU, with a phone in hand and witnessing love stories unfolding in front of me. What began as an observation of an old couple ended up as a short story in the Evernote app of my Samsung Neo 3 handset. In the Neuro and Stroke ICU, where I spent a substantial number of days in 2015, all patients on the beds were zoned out and were in another world. I would see their near and dear ones come with the same amount of exuberance and hope and of course love, to see them morning and evening during the visiting hours. Completely bored with nothing else to do, I started observing and noting the story of each bed. A little bit of a chat with the sisters/nurses to get more info on the patient and a lot of observation had love stories waiting to be told.
Pallavi has a blog where she shares her life with fellow Myasthenia Gravis sufferers. Pallavi sighs” I feel maybe this is what the purpose of my life is, to share my story so that others with MG know that they are not alone. I know and want others also to know that this too shall pass”.