I had a normal childhood, till Ataxia came unannounced and uninvited

I was diagnosed with Cerebellar Ataxia when I was in the 5th grade. At that point, I was an exceptional student averaging an ‘A’ in school. I was a very social child and had a lot of friends. I remember my parents always teaching us to be generous, humble and helpful from a very young age. I immersed myself in activities requiring extreme coordination, like gymnastics and jazz. I was also good at regular sports like soccer (football in India), tennis, and baseball.

My first doctoral reference was Dr. Joseph Higgins, a neurologist at the National Institutes of Health (NIH). With each visit, I remember, I was adamant that nothing was wrong with me. I was in denial and refused to believe there nothing that could go wrong with me. This denial turned into hurt, but I had to be strong for my family. And in hindsight, it was a belief that allowed me to keep my head up and face this battle with a smile.

In the years following my diagnosis, my grades in school declined. I had to drop most of my physical activities, but I remained a very amicable person. During these years, my parents took me to every corner of the country, searching for answers and seeking more favorable prognosis.

For me there wasn’t a drastic change. I was still wearing high heels, still meeting friends, and doing my daily activities without interference. The only disturbance I faced until high school were my physical activities and excellent coordination.

I have always loved reading. I remember Enid Blyton, in one of her books, wrote, “I do not miss it, because I never had it, but you, you had it all and now have none and have no one to run to make it okay.” This quote fits my life like a glove. The challenge in living this life, inflicted with a disabling disease, is challenging enough, but what makes it worse are the memories of my life before it, when I ran free. Today, I am forced to compare my current experience with my abilities. My abilities then to my disabilities now, my success then to my struggle now.