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How disability rights activist Virali Modi came back from the dead thrice and went on to inspire millions over the years

Disability rights activist and motivational speaker Virali Modi on how she came back from the dead, thrice and her other struggles and victories.

15 years ago my life changed. I was an ordinary teenager, living my life and trying to understand the world. When suddenly a trip to Mumbai changed my life, leaving me disabled, and once again, trying to figure out the world.

I was born in Mumbai and raised in America for most of my life. I was a bright student, a dancer, and incredibly active in sports. During the summer of 2006, I decided to visit my relatives in Mumbai. I took an excruciatingly long plane ride in July and spent an amazing month with my family. Little did I know, that amazing month was going to be followed by the most difficult time in my life.

After returning to the states, I came down with a fever. After many visits to the doctor, I ended up in the emergency room. Surprisingly, all of the tests were inconclusive and I was sent home with another dose of Paracetamol. The next morning my mom woke me up and I started hallucinating. I couldn’t recognise my mother, I legitimately thought she was trying to kidnap me. After 5 minutes, I went back to sleep, and upon waking up, I was normal. No more hallucinations.

As soon as I got up to go to the washroom, I started limping. I wasn’t able to walk properly anymore, and suddenly I realised that I couldn’t pass urine either. I was rushed to the hospital where they did an MRI, they suspected that there was a shadow in the cervical region of my spine and performed a spinal tap.

I was taken into the testing room, laying on my side, while the doctor inserted a needle into my lower back, extracting the fluid that surrounds the spinal cord. As soon as I was laying on my back, I had a violent seizure that lasted for thirty seconds, resulting in dangerous levels of blood pressure, causing me to vomit. I aspirated and half of the vomit went into my lungs, causing respiratory arrest. I lost the ability to breathe and I went into cardiac arrest. I was declared dead for 7 minutes, while the doctors tried to revitalise me. Finally, after getting a minuscule pulse, I was transferred to the ICU. Unfortunately, I was put on a ventilator because they weren’t able to stabilise my breathing.

The next day the doctors performed another spinal tap, after which, I went into a coma for 23 days. Those 23 days were the most testing times for my parents, more than me. I was declared dead, two more times, in a matter of three and a half weeks. Once, I lost so much blood that my hemoglobin went below 4, another time my body temperature went below 32 degrees Celcius (90 degrees Fahrenheit). To this date, the doctors are clueless as to my diagnosis.

On the 21st of September, the doctors had a meeting with my parents. They wanted consent to pull the plug on my ventilator, they wanted to end my life because there weren’t any signs of hope. My mother begged for them to keep me alive because my 15th birthday was coming in 8 days. After convincing them and getting permission from the Dean of Medicine, my parents threw a huge birthday party for me on the 29th of September. All of my family members had come because despite getting permission from the Dean of Medicine, there was a condition. If I didn’t show any signs of hope on my birthday, the doctors would switch off my ventilator at midnight on the 30th of September. My mother agreed and signed the consent form, which is a metaphor for my death certificate.

On my birthday at 3:05 pm, the exact time of my birth, my family surrounded my bed singing Happy Birthday. My dad took my hand and as soon as I cut the cake, I opened my eyes, on my birthday, at the exact time that I was born. It was indeed a miracle! You can call it a rebirth if you must.

I didn’t know why I was in the hospital and I certainly didn’t know that I was disabled. When I found out about everything, I was beyond shocked, but what shocked me, even more, was that I was paralysed from the neck down. I was also on steroids for the inflammation of my spine, which caused immense weight gain.

I suffered from depression, anxiety, and panic attacks after I tried contacting my friends when I was discharged from the hospital. I was told that I was a burden because I was technically a vegetable. My self-esteem and confidence were shot, I even tried committing suicide, twice. Of course, I survived and I underwent many sessions of therapy and counseling. My parents helped me understand the true meaning of self-love, and of course, I practiced it and I continue to practice it.

In 2008, I shifted to India where I had the worst experience due to inaccessibility. While traveling on an expressway train, I was molested by the porters due to the inaccessibility. This happened three times, in the years 2008, 2011, and 2013. I never raised my voice nor did I ever say anything, not because of shame, but because no one would believe me.

In 2014, I won second place in the Miss Wheelchair India pageant, which gave me hope and courage to pursue modeling and acting. After being shot down by many casting directors due to my disability, I decided to put my dreams on the back burner and started working on myself and increasing my strength.

I had always struggled with weight due to the steroids that I was prescribed. I took them for two years, but I never let my weight come in the way. I decided to start working on my mobility, becoming as independent as possible and raising my voice for disability rights.

After three years, I started my campaign called #MyTrainToo, which focuses on the inaccessibility within the Indian Railways. My petition online has over 6 lakh signatures to this date. With a railway official, we made 9 railway stations in India totally wheelchair accessible, without any renovations. This landed me in BBC 100 Women, I became a TEDx speaker, I’ve won countless awards, and I became a motivational speaker. I also had the wonderful opportunity to model with Salman Khan for Being Human, I shot a print ad for Big Bazaar, and was the show stopper for Bombay Times Fashion Week, FBB, and Jewels Of India.

I was so busy in my career that I didn’t focus on my health, wellness, and what I was putting into my body. I gained so much weight over the years that I found it difficult to even begin. I did join the gym but I wasn’t seeing results, which left me demotivated.During the lockdown, I decided to focus on my health and wellness. I initially started doing IF and Keto, I did see results but it wasn’t a sustainable regimen for me. Then suddenly, one day my neighbour told me about Fittr and that’s when I decided to join the group and see what the fuss was all about.

I was surprised when I saw all of the transformations! I desperately wanted to be one of them. I posted a query on Fittr about losing belly fat (my biggest problem area due to my disability), where I was introduced to Hitesh sir. To be very honest, initially, I was a bit scared of the program. It seemed so intense, measuring out your portions to the T. It seemed overwhelming. Once I got the hang of it, it became easier and now it doesn’t seem like that big of a deal.

Once I started seeing the difference in centimeters, my clothes feeling looser, people who would comment on my weight were now commenting on my weight loss. It was an overwhelming feeling, I was emotional, really emotional.

Those steroids that I took 15 years ago, wreaked havoc on my body. Before my disability, I was 52 kilos, the steroids took my weight up to 90 kilos, and before I started training under Hitesh sir I was 67 kilos. It’s difficult to weigh myself, but I know I’ve lost weight because I’m in desperate need of a wardrobe change. This is still the beginning, I’m not anywhere near my goal and until then I have to keep pushing on and becoming the best version of myself.

I am so grateful to Hitesh sir, JC sir, Fittr, this group, and all of its wonderful participants. Thank you for making me feel so welcome and encouraging me to continue my fitness and wellness journey.

And as my mentor says – lehro se darr kar nauka paar nhi hoti, koshish karne walo ki kabhi haar nahi hoti.

Note: The article was originally published in a private Facebook group FITTR and by Virali’s mentor Hitesh Vaishnav.

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