3D render of a silhouette of a female in a wheelchair with her arms raised against a sunset ocean

I WAS DEAD THRICE – Disability is My Power – Virali Modi

My name is Virali Modi and I’m 26 years old from Mumbai. I’m a disability rights activist and a motivational speaker, so I guess my story starts back in the US.

I was raised in the US for 17 years and ever since a young age, I’ve always wanted to be an actress and a model but unfortunately, in 2006 I had come to India for a month and when I got back, I was assuming that I caught malaria. I was having all the symptoms of malaria, basically from feeling cold to feeling hot, having a very bad headache and fever. My parents took me to my doctor and he gave me a normal paracetamol or a Crewson and thought that is probably just a viral fever. The doctor asked us to keep a look on it!

Now, once I would take the medicine the fever would go away and once the effects of the medicine wore off the FIH woods the fever would skyrocket to 100 and 304 degrees, thus he went to the emergency room and they did all of their routine tests including urine culture blood culture MRI CT scan. And yet again, everything was normal! Thee doctors even did a spinal tap so that’s when you take a needle and insert it into the lumbar region of the spinal cord and that was also normal negative.

Now, my mother told them that I had gone to India and I probably caught malaria and if they could give me the medicine? The doctors said no because all of the tests were normal and on that evening I was discharged, taken home and I fell asleep outside in the living room.

The next morning my mom came in and said, runs as I had her hand across my head, I wake up and I started hallucinating. I didn’t recognize her and told her that you were dead, you’re not my mother, you’re dead, my mother is dead for me and you’ve kidnapped me and brought me here. I want you to take me home!

This really got my mother worried and she told me, okay fine you go to sleep and when you wake up I will take you to your house and I went to sleep again. Within five minutes my grandmother comes and she does the same gesture I wake up and I’m totally fine. I’m normal so my mom decides to take me to the doctor but before that, she tells me to get up and brush my teeth and have breakfast.

  • It Changed Everything

As soon as I get up to walk I’m limping I’m not able to walk properly. I’m walking as if I’ve had too much to drink and I go to the washroom and I can’t go to the washroom I cannot urinate so my mom and dad took me to the emergency room and they drained my bladder. They transferred me to a bigger hospital where they did an MRI. When they got the reports back they assumed that they saw a shadow in the back of my neck but nothing was conclusive so they went in to take me for another spinal tap.

And after they did the spinal tap and they turned me on my back I had a really bad seizure. After the seizure my blood pressure skyrocketed I vomited and half of it went into my lungs and half came out because of which I went into respiratory and cardiac arrest.

I couldn’t breathe and my heart was gone and I was declared dead for seven minutes. The doctors tried shocking my heart back three times and after the third time, they were successful! They then transferred me to the ICU, during that time they put me on a ventilator as I had breathing tube shoved down my throat.

Soon I was fine and gained back consciousness. I could now recognize everybody the next day. The doctors did another spinal tap and I went into a coma. I was in a coma for 23 days during which I was declared dead two more times. In total three times I was declared dead, one time my body temperature went below 90 degrees Fahrenheit and it regulated on its own after 40 minutes, the second time I lost so much blood that my hemoglobin went below 4 and again it regulated all on its own.

The doctors till date have no idea what happened to me and why all of it happened. On the 21st of September 2006, the doctors had a meeting with my parents where they said that wanted to pull the plug on my ventilator. Basically, they wanted to kill me! My mom fell on the floor while holding the doctor’s foot. She was crying and she told her that my 15th birthday is coming up and wanted to celebrate it. So, I don’t care what you have to do but you have to get me permission on the 29th of September

They decorated my room, called all of my family members and at 3 or 5 p.m. (that is when I was born) my dad took my hand and everyone was singing happy birthday. I cut the cake, opened my eyes and the doctors rushed in to the room because people were screaming.

They did an evaluation and they hugged my mom and they told her that he is out of danger. I went back into a coma after 20 minutes and on the 5th of October, they took me into the operation room. The doctors took the breathing tube out of my mouth and put it through my neck by a procedure called a tracheostomy.

I came out of my coma and everything was fine except for the fact that I was paralyzed from the neck down. A month later I was discharged and came home and I was like a newborn baby. If you would sit me up I would fall over and during that time I found out that my friends were spreading nasty rumors about me about how I became wheelchair-bound.

  • The Bitter Truth Of Life

When I tried contacting my friends, they would not talk to me and said that I was a burden on them and I lost my friends and for a girl that’s only 15 years old having no social life is really difficult. At that point in time, I had become so depressed that I told my mom that I don’t want to live, I have no right to live as I’m losing my friends.

My mom told me is that I shouldn’t seek validation from anybody and should learn how to accept myself. I cannot expect people to accept myself if I don’t love myself and the day that I started loving myself, I won’t need anybody! I’ll be happy in my own company!

I understood that I took it with a grain of salt to be honest now comes my 16th birthday my family and I, we all got together to celebrate my 16th birthday. We went to the Rocky Mountains and they rented out a cabin that wasn’t accessible which was their fault, to be honest, and because it wasn’t accessible I had to be carried and lifted everywhere with my wheelchair.

Now, my uncles started talking about me behind my back saying that oh my god she’s so fat we have to carry her and because of her now I’ve gotten back pain. I heard that and that really disheartened me. On my 16th birthday no one wished me, no one even spoke to me and if my cousins wanted to come and hang out with me, my aunt would stop them, telling them not to hang out with Verali because if you do now you’ll also become wheelchair-bound and disabled.

It was devastating for me! Again that is another point in my life where I had given up hope and didn’t want to live. I’d become depressed, my mother and father told me something and they said that people who don’t love you especially family members they don’t accept you for who you are. They don’t deserve to be in your life and you need to be content with yourself. You need to love yourself again and that same lesson that she taught me all over again!

  • A New Beginning

In 2008 I shifted to Mumbai, India and from Mumbai I had to take a train to Delhi. As you all know there is nothing like accessibility in India as our infrastructure does not support it, I got to the train station, to the platform and I looked at the trainer. I was near my compartment and thinking, yeah there must be a ramp or a lift, something that will help me get inside. But there wasn’t! Obviously my mom had to call the porters for help.

They’re staring at me as if I’m a piece of meat, a piece of luggage. They’re looking at me with dirty eyes and this one guy comes up and he holds me from my knees while the other guy holds me from my shoulders. When they lift me, the guy holding me from my shoulders he wraps his arms around my chest and gropes me. He’s manhandling me, molesting me and at that time I thought it was probably a mistake but his repetitive movements confirmed my doubts.

I didn’t say anything because I was scared of being slut-shamed. This happened two more times and I didn’t say anything. Until in early 2017, I wanted to raise my voice about this issue and I spoke to my parents, told them that I wanted to talk about this but should I? They said go for it, why not? I said because what will people say, what will people think?!  One really important thing they said was listen, we are the ones feeding you, we are the ones taking care of you and not this whole world so their opinion should not matter!! If someone has to say anything about it, we’ll be the ones to shut them up so you do what you have to do.

  • Holding Tightly to Your Dream

I started the petition calls hashtag my train too and currently, it has over two lakh signatures on individual levels. With the railway officials, I have made six stations totally views are accessible in the South, thank you. It was all made possible not with the help of the government but on an individual level.

After that, I was awarded the women’s achiever award by Delhi Commission of women, the rising star of India award by we are the city and I was also named as one of the most influential and inspirational women by BBC 100 women. In 2017, I was also featured in a two-page spread in Seminole magazine and along with that, I am currently working for a travel agency called enable travel. We’ve also started a petition together called ramp my restaurant where we are asking restaurants to ramp up and pleading them to have a ramp available because our 27 million people in India that are disabled, they don’t have anywhere else to go. This is because of the mentality and because of infrastructure and now I want to request all of you if you are going anywhere, if you see a place that doesn’t have a ramp, request the management, I’m sorry, demand the management to get a ramp in place because it is alright and we deserve the right to have it!

I always aspired and dreamt of being a model and being an actress, I’m so incredibly elated and so incredibly happy to share this with you guys that I worked Salman Khan. I shot with Salman Khan in the beginning of January we shot for the being human clothing campaign and out of all of the people in India, only seven people were chosen for this. I can’t tell you how happy I am, thank you! Along with that, I’m also winning the part of the Prerna award of 2008.

Now before I leave you guys, I just want to leave you with this one thought that never give up!! I know that it’s really easy to say and I know it’s really hard to put into action but don’t give up. I know people do get depressed and life is a struggle, believe me, that is the definition of life. Life is also beautiful and love is life!

Don’t give up! You have the strength within you to fight for what you believe in and to fight for what you want and if people aren’t supporting you, don’t worry as I’m there to support you. So, please don’t give up be strong, be positive and just carry yourself with a smile!

Written by Virali Modi

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