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My experiences being one of the first 20 people with AFM

I was living in Los Altos Hills California when I was 7 years old. In our backyard, there is a large patch of dirt surrounded by trees. When I was watering the plants one day, I noticed that a small marsh was forming around the trees. I had just watched the marshland episode of Wild Kratts, so I was fascinated by it. I rushed back inside the house, and grabbed my plastic elephant, rhino, and lion. I threw myself head first into the little muddy pond, and smacked the lion and elephant together. I jumped up and down like the hippos in Wild Kratts, and felt like a true adventurer. “Vish, come back inside the house for lunch!” yelled a voice from the kitchen. My stomach dropped about ten feet as I realized that my Mom would be furious that I was muddy. I sprinted through the back door, and took and rinsed myself in the shower without washing my hands. 



A couple of weeks later, I was playing Monopoly with my cousins, and I was losing badly. My head had a dull pain, and I felt so weak that picking up the dollar bills was like picking up iron blocks. My parents, sitting to the left, noticed that my neck was tilted severely. They asked to move my head, but it felt like it was being bound by chains. I felt as though I was slowly getting weaker, transforming into a human jello. By the time they rushed me to the doctors' office, I was unable to walk inside without leaning heavily on my mom’s shoulder. 

The nurse asked me to hold my arm out to test my blood pressure, but my arm would just not budge. I tried to move it again, but it was completely lifeless. The nurse smirked at my mom, and then said “Honey, please stick out your arm. I promise it won’t hurt.” I was so furious with her that I wanted to get up and punch her in the face, but for better or for worse, I wasn’t able to get up from my seat. After observing my failed attempts to lunge at her, and eventually just collapsing on the floor, the nurse rushed out the door to find a doctor. My mind and breathing felt just fine, but the rest of my body felt like a mushy lump. A lot of strange people came to look at me, and after a loud argument with my parents and a lot of confusion, my parents told me that I was going to Lucile Packard Children’s hospital. I did not understand the seriousness of the situation at the time, and I was excited to miss school for the next couple of days and ride in the ambulance with lego minifigures come to life, a.k.a firemen.




The ambulance stopped at the entrance of the hospital, and a team of doctors surrounded me. I was scared and confused, hearing the frantic questions of my parents go unanswered while doctors talked in hushed tones. A nurse finally walked up to my bedside, and said “Honey, we’re going to check your breathing”. She held a mask in her right hand that was connected to a large machine with several tubes. The mask looked intimidating, but I was comforted by the fact that “it wouldn’t hurt at all, so there’s nothing to worry about”. She placed the mask on my mouth, and turned a couple of knobs. I was drowning, clawing for air, as my lungs rattled and shrunk to the size of a tin can. I tried to rip the mask off of my face, but my arms were completely lifeless. I wanted to jump out of the bed, but my legs were limp. I managed to let out a small shriek, and the nurse removed the mask from my face. I started to cry as the doctors compared notes on my results. I slowly turned to my parents who were watching at the corner of the room. How could they let the doctors hurt me? Why weren’t they coming to comfort me and tell me it’s ok? The doctors ushered my parents out of the room, saying as they left “Treatment must start immediately”. 

I have always had a fear of needles, but that fear skyrocketed when I was left paralyzed in the hospital with AFM. For my five month stay at the hospital, I would receive almost three shots every single day. Something about the needle coming toward my arm and knowing that I couldn’t move or hide made the fear of the shots unbearable. I screamed and cried everyday for the first month, and I would beg my parents to take me home. I spent hours watching movies with my virtual reality goggles as I lay in the MRI. After the first month, however,  I simply stared at the black screen instead of watching movies, and I stopped crying for my daily injections. Miraculously, I started to cooperate with physical therapists, and did all the exercises they asked me to do without complaints. The doctors and my parents called me a dream child, they spent thousands of dollars on lego sets to make me happy and bought me an xbox to play on when we got home. The doctors told me that I was the AFM patient who wanted to recover the most, and that’s why I got the best results. They were wrong. I had completely lost the will to live, and was so lonely in my burning hell filled with needles, electrical stimulation, and hours staring at claustrophobic disney characters in the MRI that I did not care whether I lived or died. My parents were gaunt and starving, skeletons of what they were before the virus. None of my cousins, aunts or uncles came to see me once during my entire stay at the hospital. I felt abandoned by the world, my family, and I was ready to abandon myself. 



When I was finally discharged from the hospital, I was able to walk, and even run for a short distance again. The doctors and my parents were amazed at my physical recovery, and over the next six years, I worked tirelessly in physical therapy to fix everything that I had lost. To this day I am one of five AFM patients who has ever “partially recovered”. However, I have never truly recovered mentally for AFM. In my first couple weeks readjusting to home life, I developed a severe anger towards my parents. At my elementary school, I was made fun of because I couldn’t play sports during P.E and I couldn’t write, because my wrist was so weak. I also couldn’t sit in a chair because it hurt my back, so my parents brought a chair with back support. As a result of the bullying, I blamed my parents for myself getting the virus, and often blurted to them “that they ruined my life”, impacting their mental health greatly.

Over the following years, my parents and I tried to leave AFM in the past. Whenever I asked them about it or tried to bring up the subject, they would tell me that we would talk about it more when I grew older. The memories of AFM  slowly withered away as I finished elementary school and moved on in my life, but the scars of the pain and suffering I experienced never left. I often find myself having nightmares of the hospital, being completely paralyzed as a doctor stabs me with a needle. I have tried my best to forget AFM, but I realize that it will always be a part of my identity. Instead of leaving my memories to die, I share them with other families, hoping to let them know that they are not alone in their suffering and there is always hope. Life will hurl obstacles in my way no matter where I go, but I know that I can stand tall because of my experiences with AFM.



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