January 20, 2021

Virali Modi on life, death and her mom

Mums and Stories is a platform where we feature true stories on inspiring and interesting moms. Over 260 real life journeys have been featured on www.mumsandstories.com We also feature inspiring and successful individual’s stories who would like to pay a tribute to their mom; who has been part of their successful journey. These stories are featured after detailed interactions over email, telecons and sometimes face to face meetings. If you are an inspiring mum or know someone, do get in touch with us at mumsandstories@gmail.com with your contact number.

This time we have the story of this hugely inspiring individual –Virali Modi who is wheel bound but didn’t stop herself from dreaming and achieving. She shares her journey of being in death experiences in extremely close quarters and fighting her way back to life. She also talks on her mom who has been one of the strongest emotional support systems for her in life.

Also a celebration moment in the ICU as a miracle gesture got Virali back to life before she has time and again reminded herself of cherishing her life. Apart from being Miss India Wheelchair 2014 runnerup, Virali’s efforts to make railways more accessible made her on the list of BBC 100 women 2017

“I was two months old when I shifted to the US. My childhood consisted of me moving to different places and traveling a lot due to my dad’s work. Other than that, it was quite normal. I was an extremely bright student, I’ve won awards for my handwriting, arts and crafts, and I’ve even gotten a letter from the superintendent of my school district because I topped the state exams. I was into sports, I played basketball, volleyball, tennis, and I was a great swimmer.

Along with that, I was into music as well, my parents really supported me in everything that I did. I used to play the guitar, piano, flute, and I was a decent singer as well. I was also fond of dance, I took up bharatnatyam, bollywood dance, and I also took to theater. I also took modeling and acting classes when I was 14 years old.

I survived death three times during a 23 day period. I was 14 at the time, located in Pennsylvania, USA. I had come back from a trip to India. I went during the monsoon season, July 2006. I came home in middle of August, I was to start school in about 2 weeks. Then one day suddenly, during history class I got a severe headache, it wasn’t like the normal temple headache. It was more like the headache formed a halo on my head. It started from the forehead all the way around in a circle.

I went to the nurse and took some Tylenol. The nurse called my parents and let me go home early. I went home and I fell asleep. I woke up after maybe 3 hours with a very high fever reached 102 degrees. My parents made an appointment with my pediatrician and he said that it might just be because of the season changing.

He advised me to take Motrin every 4 – 6 hours for the fever. I went home and started getting the shakes, I would be feeling extremely hot for an hour or two, and extremely cold the next couple of hours. My parents rushed me to the emergency room where they did an MRI, CT Scan, Blood and Urine work which all came back negative. As a final resort, they did a Lumbar Puncture (Spinal Tap).

During that time, my mom told the doctor that I have all the symptoms of malaria and that I had visited India during the rainy season. The doctor agreed and said that it does look like malaria, but since they didn’t have any proof; it would be unlawful for them to provide me any medication that may cause harm to me. The CSF checked out to be negative. I was sent home with Tylenol.

Once I reached home, I slept for maybe 4-5 hours. Once I woke up, I was burning in a fever and was hallucinating. I kept yelling at my parents to stay away from me because I thought they were going to hit me on the head with a remote control. I fell asleep after 5 minutes of hallucinating. After waking up, I was totally normal and got up to go to the bathroom but couldn’t urinate. As soon as I stood up, I started to walk as if I was drunk. I was not coordinated. I was rushed to the ER again, where they inserted a tube through my urethra to remove the urine from the bladder. I was transferred via ambulance to Hershey Medical Center. I was sent to get more testing done like an MRI which showed something in my neck, they assumed.

During that time, I was having very small seizures which I was not treated for. I was taken in for another LP, which resulted in me having a major seizure, respiratory and cardiac arrest. They declared me dead on the spot. They still paged CODE BLUE and called all the ICU doctors in the room to perform CPR.

After multiples times of fluctuating fever, a couple of days later, I lost a lot of blood resulting in my hemoglobin going down below 5 (the normal is 11.5-15 for women). They didn’t know where the blood loss was from. So they gave me 3 units of blood and again called it fatal. Finally, after the blood transfusion, my hemoglobin came up to a safe level.

The date was now September 19, 2006. A family doctor of ours is an Infectious Disease Specialist. He spoke to the team of doctors that were in charge, and requested them to give me a 14 day course of Doxycycline and Quinine because I didn’t have anything they were treating me for. I had malaria.

However the doctors didn’t approve of my family doctors’ request so my mom literally begged them. Then after several procedures, I was taken again for another LP, which resulted in my going into a coma for 23 days. The doctors said that there were uncountable white blood cells in my CSF, which meant a viral infection.

During the third day of the coma, my body temperature went below 90 degrees, it was sudden and there was no reason for this to happen. The nurses piled heated blankets on me and surrounded me with heated lamps. I was left like that for about an hour. The doctor called it serious and said if my body temperature didn’t go above 90 degrees, I could die. After one hour, they removed the lamps and blankets, my body temperature rose immediately.

Finally, at 4am the doctors injected me with the first dosage of those medicines.

On September 21, 2006. The doctors decided to take me off of life support and told my parents to call all of my family. My mom begged them and told them to keep me on life support until September 29 because it’s my birthday. The doctors said that if there was no improvement after the 29th, they would pull the plug from my breathing machine which would lead to death.

On September 29, 2006, my mom catered for 60+ people, decorated my room in the PICU and called all my family. At 3:05 pm, the exact time I was born, everyone was signing Happy Birthday and my dad held my hand and cut the cake. I opened my eyes and was staring up at the ceiling, I couldn’t recognize anyone.

My family screamed for the doctor, he came in and gave me a quick check up and screamed and jumped himself. He hugged my mom with teary eyes and said, “Mom, you saved us from committing an unforgivable sin! God bless your spirit. Your daughter will survive”! But I went into a coma again after 10-20 minutes.

On October 5th, 2006, I was sent into the operating room to transfer the breathing tube from my mouth, to my directly through my neck and vocal cords. After the anesthesia wearing off, I came out of my coma and started to recognize everyone.

But the coincidence is that, when my mother was pregnant, her original due date was October 5, 1991. Another thing, everyone in my family except my mom knew I wasn’t going to make it. Her faith and belief is what saved me. I was paralyzed from my neck down, it’s been over 10 years and I am able to move and contract a few leg muscles which the doctors thought I would never be able to do.

I am an unknown diagnosis. They like to diagnose me as meningitis, enchephalitis, meningioenchepalitis, spina bifida, and/or transverse myelitis.

The doctors call me a miracle” she says and we too believe it is no less to hear this story of life and death expereince from her.

Virali Modi who now stays in Mumbai, has been actively campaigning for rights for disabled individuals for accessibility. “I am a youth ambassador with Enable Travel and I can truly say that they are making up for what the government hasn’t been able to do. Enable Travel is India’s premier accessible holiday specialist and caters to the travel aspiration of the wheelchair user, the blind, the deaf, and those who have problems with speech. It empowers people with disabilities to travel – barrier free.

People to expect a lot from me, and I think they do that because they’ve seen the positive change that I’ve brought in Kerala Railways. It encourages me to work harder and to be more efficient, because I want the India to be accessible for all – barrier free. Plus, working with a company like Enable Travel has helped me to see the difficulties that people face and it’s taught me that when there’s a will, there’s a way. The expectations that people have from me empowers and inspires me.

I am extremely fond of music, live music, anything. Music resonates with my soul and it brings the best out of me, more than that – I love talking to people and getting to know a bit about their lives, because I feel that we can learn a lot from each other. I’m fond of art, fashion, acting. Plus, I’m a foodie so I love to explore places in my city – Mumbai, and try different types of cuisines.

My father due to his nature of work has to travel and we too get to  travel around a lot, which I’m grateful for. I love experiencing different cultures, foods, and traditions. My mother is a homemaker and together, we’re dynamite! My parents are my best friends and I don’t know what I’d do without them.”

On recommending tourist destinations Virali shares, “I would recommend the United States for it’s accessibility and versatility. Plus it’s incredibly beautiful during the months of September – January (albeit cold, but beautiful), likewise with Canada and I have been to Thailand which has been wonderful.

On mental health Virali shares her opinion, “ Please, please don’t ignore it. Get the help that you need, mental health is a big issue in our country and it needs to be acknowledged. Other than that, please start learning to love yourself, because you are incredibly important, whether or not you think so. Don’t give up, keep fighting for you, and for what you believe in. The most important thing is to surround yourself with positive people, people that love and care for you, and people that support you, because positive vibes will help you towards your mental recovery – if not more.

Honestly speaking, my friends and extended family had given up on me. They didn’t support me at all. I had tried committing suicide twice and I was extremely depressed. My parents really helped me through this, especially my mom.

My mom’s persistence, support, happy-go-lucky nature, playfulness, and love is what inspires me. She’s extremely special to me and I wouldn’t want her to change – ever.”


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