“Crawled to class,” says Alma Chopra on living with cerebellar ataxia

Alma Chopra was diagnosed with cerebellar ataxia at the age of 10. It is a disease of the nervous system caused by damage to the cerebellum, the part of the brain that is responsible for coordinating movement.

This means everyday tasks such as walking or picking up things are daunting.

Despite the challenges brought on by this debilitating disease, Alma has not only received honours degrees in Psychology, English, and Spanish but has also pursued a law degree from one of the best law schools in the US, Case Western Reserve University in Cleveland State, Ohio.

The 37-year-old is now an influencer, a motivational speaker, and a cerebellar ataxia champion.

The diagnosis

Alma was born in New Jersey on the east coast of the United States as a normal child with no physical illness. She was one of the popular kids in her school as she was good in academics and extremely athletic. She participated in gymnastics at six and continued with the sport for four years until she was diagnosed with cerebellar ataxia.

“When I used to do gymnastics, none of my teachers, school doctors looked at me and think there was anything wrong with me. But my parents could see that even when I stood up straight, I was swaying like a flower swaying in the breeze while being rooted in the ground. That was my initial symptom – I was standing but I was continuously moving,” Alma told HerStory, adding that she was also into baseball and soccer up until the age of 13-14. She was determined to continue playing her favorite sports for as long as she could.

Her parents were devastated knowing that their child has developed such a serious illness, Alma, on the other hand, didn’t think much of it.

“I was a disciplined child with very strong willpower. So, when I say I was in denial I don’t mean that I was being naïve but that I was strong-minded to not let it impact my life heavily. It also affected my prognosis as usually anyone dealing with this disease would be on a wheelchair permanently at around 18 years of age, but I am 37 and I am still not there yet,” she shares.

Initially, Alma didn’t talk to any of her friends about her condition. Talking about growing up with a disability in a suburban American city, Alma reveals, “Being a teenager growing up at 14, it’s not cool being different. Everyone wants to be the same, follow the same trends in clothing, be skinny etc. So, telling people that I had a disability and that I was different from them would exclude me from the crowd. Since my symptoms were relatively mild at that time, I chose not to tell anyone about it.”

Frequent doctor visits meant Alma had to take more leaves from school that further distanced her from peers, but she continued to excel academically.

Facing bullying in college

By the time Alma got into college and started living on campus, her condition worsened and she required physical assistance to perform everyday chores. However, she was determined to study in a regular college instead of distance learning.

She explained how her college had its own security force and they would be informed every day in advance once Alma left for college and then it was their duty to take her from one class to another. She traveled in a car as classes were held in different buildings on a campus that was spread across four acres.

On days when she couldn’t access the college security, she remembers crawling to her class because she didn’t have any physical support, and no one came forward to help her.

“I remember I had to crawl sometimes to class to make sure, I get in. There were elevators and a corridor to class, and everyone was sitting on the corridor and leaning on the wall, waiting for their class to begin. So, I usually walked with one hand on the wall to support myself. But in this case, I had no support, so I got down on my knees and hands and just crawled to my class,” she says.

Cerebellar ataxia is quite rare, affecting about one in a million people. At her college, Alma was the only person with this illness, which made her a target for bullies.

“I faced a lot of bullying in my first year of college. I remember this one guy who bothered me so much. He ridiculed me and made fun of me so much so that I started crying and stormed to the dean’s office to file a complaint against him. Apart from that, usually, people wouldn’t bully me on my face, but I knew that they made fun of me behind my back, but I tried not to think about those things,” recounted Alma.

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How she coped with melancholy and loneliness

The impact of bullying on the mental health of adolescents is widely discussed now, however, in the early 2000s when 18-year-old Alma was navigating her college life, such discourse was absent.

Bullying by her college peers made Alma unsociable and melancholic.

To fight her mental health woes, the imaginative and artistic Alma started to write poetry.

“I remember the times when I used to cry myself to quiet. I found my solace in penning poems that often portrayed my state of mind and so were filled with sadness as that way I emptied my woeful emotions on a piece of paper. It's a way for me to release what I was feeling,” she recalls.

Apart from her poetry, Alma confided in the one friend she made in college. “I was 18 and I felt lonely in my state, but I never really gave myself too much time to dwell on this feeling. My focus was more on my academics and that’s one way I shielded myself from the real world,” she adds.

A physical illness can scar even the most determined and Alma was no different. She went from being a popular kid in the block to becoming a recluse only because society wouldn’t break its biases and taboo against people with disabilities. However, her determination and dedication to excel in her studies and her vigour for life need to be acknowledged and seen as an inspiration for people who feel gutted in life.

Alma’s life is a living example of how the right and positive outlook towards life can push one to achieve success. Today she has completed over a decade in her professional career. After finishing college in 2007, she joined a private firm in the US as an administrative assistant and over the years she worked in many roles. Now, she is the Vice President of Human Resources in the same company, Campuseai.

Two years ago, determined to share her story with others, Alma also became a motivational speaker. “To be precise, people with different abilities aren’t at all different from any other physically fit person. We all have baggage, and the physically disabled person just may have a little more to carry. But one thing is for sure that we all are unique, and we shouldn’t let anyone tell what we are worth,” she signs off with this thought.