Living Rare

“I was to appear for my 12th board exams, and had nothing on my mind except the diagnosis and all the problems that came with it. I couldn’t help but think and overthink about how bad life would be when I should have been concentrating on my studies as most kids at that stage do,” said Zoyeb Mohamed Zia.

Zoyeb is a 27 year old Chennai resident, who has a rare neurological condition termed as Ataxia. He explains Ataxia is not a particular disease but rather one of the manifestations of a disease condition. The word “Ataxia” means lack of order, and one major symptom in an individual with Ataxia is their fumbling and jittery movements. There are about 35 kinds of these conditions that manifest as Ataxia and all of them have different types of symptoms. Sometimes even within the same disease varying from person to person, one universal symptom that you might see is an atrophy or improper formation in the cerebellum. The cerebellum is a part of the brain which is commonly called the small brain. The cerebellum controls the body’s movements and is also associated with emotions among other things. When people are drunk, the cerebellum is the organ which gets affected. In individuals with Ataxia, the cerebellum is permanently and irreversibly damaged. It is as if people with any type of Ataxia are perpetually drunk all the time. They have symptoms such as — the stumbling walk, the speech patterns, the eye movements, the hand movements, difficulty concentrating etc.

Most of Ataxic conditions are rare and genetic, are lifelong and have no cure and an early onset (either present at birth or start in early childhood). Zoyeb’s condition has a frequency of around 1 in 9,00,000. His condition hit him in his prime teens, when he was around 16 year old and had just cleared his 10th board exams with a score of 78%. Right after his exams when he had just started looking forward to good times ahead in his life, his symptoms of Ataxia became real bad. His family started looking around for medical help, and soon he was diagnosed with some type of Ataxia by a neurologist.

The actual diagnosis of Ataxia with oculomotor apraxia 2 came around 10 years later, that’s the thing with these rare disorders, even diagnosing them takes about an average of 7 years, said Zoyeb. The doctors told him that there’s probably no cure for his condition and he has to live like this and the worst of all, this condition is degenerative and gets bad over time.

“After that initial diagnosis, I had kind cut myself off from everyone and everything and had gone into a shell, luckily I had solid support from people around me, my school teachers, my friends and my family, due to persistent desire to help, support and watch me succeed and partly due to my acceptance of the fact that I actually needed that help and support, I slowly built up some self-confidence and came off the shell to appear for my 12th board exams and pass out of CBSE with around 60%,” told Zoyeb.

In 2011, after his board exams, Zoyeb was ready to move into college for further education. He decided to pursue bachelor’s in Zoology from a college nearby his place. He had always been interested in zoology and the syllabus and practicals were not too straining on his physical health.

Living with condition fatigue (another little bonus of life with Ataxia) is something I have to deal with (like many adults living with such disorders) for people like us the daily schedule has to be planned around the rest we need to function and then of course there are times when no amounts of scheduling or planning can help.”

Post his graduation, Zoyeb completed his masters and M.Phil in Zoology. He also pursued bachelor’s in Psychology from University of Madras, few certification courses in both fields, cleared SET (State Eligibility Test) in 2017 and he has been working as an Assistant Professor of Zoology since then. And now, he is looking forward to doing his PhD, Zoyeb knows that there are many hurdles to come but he thinks he is ready to face them. His dream is to have his own research lab and to help people get their PhDs and continue further research.

“I have had quite a journey so far and these are really big achievements from my point of view, but maybe to someone looking at just the end without the backstory, these achievements may look unimpressive, this is a big reason why we should encourage channels like these to bring out the backstories of achievers with disabilities. Obviously, a big part of my life lies outside academics, my hobbies mostly include those activities where my disabilities don’t matter – I am a foodie, bit of a movie buff and a gamer (mostly third person single player video games on my PS4), amongst physical activities as a hobby, I love swimming and like to think I would enjoy scuba diving but I tried it yet, would love to someday soon,” told Zoyeb.

He also volunteers at rare disease organisations by spreading awareness about rare diseases, giving motivational speeches and doing online campaigns among other work. Zoyeb’s father also runs a website called Possiabilities Home that helps people tell stories behind achievers and not just their achievements. Possiabilities Home is a platform for stories of those who face challenges and keep performing.

“Talking about daily life for me as a person with this condition, one of the major issues I have is my lack of independence, I need someone to physically hold me and help me move around – I cannot use a walker or a stick (think drunk person + walking stick), the only option seems to be a customized wheelchair, but unfortunately the place where I live – my house, my workplace, my locality ie the roads and streets around are not designed to handle anyone on a wheelchair. In Fact walking on the road around my house is something of a test to your agility and fitness. The other big thing that is always on my mind and almost over shadows everything is the commute to work — the schedule involves some able bodied person (mostly my dad) walking to an auto rickshaw stand nearby – bringing it back home – bringing me out of the house (down a flight of narrow stone stairs and through a narrow passage) and getting me into the auto – dropping me off at the college, coming back home, –customary haggling for fair repeat the whole to bring me back home. –This is what my dad has been doing for me ever since my diagnosis.”

Zoyeb also highlighted about the mental toll the individuals with rare diseases have to go through on a daily basis, “these things which seem trivial to anyone are the things which preoccupy the brains of people like us – like for example most people would just need to worry about getting to work on time doing the work and going back home – I have to worry getting up and getting ready early in the morning (super difficult and almost impossible for people like me – drains almost all the energy I have), working out like a 100 details for the commute to and fro and running and rerunning situations in your, compared to someone who might just have to worry about getting his job done, something else which might be very trivial to people is going to the toilet – going to the toilet anyone wouldn’t give much thought to, you want to go, you just excuse yourself and go, but in my case I have to inform like 10 people that I have to go to the toilet (I have to pre plan and schedule this) then one person would be allotted to take me to the toilet, luckily I can use the toilet on my own (even though it is not disabled friendly), that person has to take me from the outside of the toilet back to my seat on the first floor (a flight of stone stairs , no lift, – no ramp) –all this in the place I work (they have special well maintained toilets for the staff that I am entitled to use), imagine my plight when I went to school and college as a student.

Many buildings are now being designed and redesigned with accessibility in mind. Zoyeb hopes this trend will soon catch on big time and all buildings will become disabled friendly. Many NGOs are also petitioning the government to make roads and public transport more accessible.

Zoyeb also hopes that someday he would be able to take his electric scooter/wheelchair on the road to a totally disabled friendly workspace and be a lot more dependent.

Do tune in to the episode, “Breaking Free from the emotional costs of a rare disease” of “Rare Lives” by the host, Avantika Shrivastava which delves into the hidden emotional costs of being rare.




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Suno India

Suno India

Suno India is a podcast platform which is solely dedicated to audio stories on issues that matter.

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