The first thing you notice about Zoyeb Md Zia is his disarming grin. He scarfs down cake with all the enthusiasm a starving 22-year-old can muster, and as he tries to sip his coffee, a spoon clatters to the floor. Without so much as a pause for breath, his cousin Sufiyan Ahmed Faizi promptly picks it up and puts it back on the table, even as he continues talking. With the same nonchalance, his father Iftikhar Md Zia leans over and wipes a bit of cake off Zoyeb’s mouth and lets out a belly laugh at something Sufiyan has just said. With slightly shaky hands, Zoyeb picks up another spoon and digs into his cake, bringing it up to his lips in a slow, carefully controlled movement. His father continues to joke with his cousin, but the tense lines around his eyes relax slightly.
Zoyeb joins the conversation, his speech deliberate, barely slurred. And when he gets up to leave, Iftikhar and Sufiyan sling their arms around him from either side for support while he staggers a little, then disciplines his gait. A passer-by might have thought the youngster had had one too many; however, the ataxia and its many manifestations are just another part of Zoyeb’s life. He does his best, aided and abetted by family and friends, to not let its debilitation affect his routine.
Ataxia is a neurological disorder that affects a person’s muscle coordination, balance and speech. It is degenerative, which means Zoyeb’s sense of coordination has only worsened over time. “Ataxia could be a symptom, a syndrome, or a disorder,” says Dr. Ennapadam S. Krishnamoorthy, founder, Neurokrish and Trimed. “The prognosis depends very much on the type of the condition. So there are disorders that progress rapidly and there are disorders that progress veryslowly. There are some conditions that progress so slowly that they are almost static for very long periods of time.”
***
Zoyeb first suspected something was amiss about nine years ago.
Until high school, he was the student who every teacher rolled her eyes at. Good at studies, and yet the ringleader of the class’s merry band of mischief-makers, popular among the students and great at sports— an athlete through and through. His love of football, in fact, was what made him realise that there was something wrong. In the middle of a game at school, he tried to kick the ball. “And I just couldn’t. I didn’t know why or how,” he says. What followed was a period of slow decline, both physically and emotionally. “I couldn’t swim, I couldn’t go out with my friends, I didn’t want to see my family. I couldn’t even play ball with my cousins.” 
“We ragged him,” says Sufiyan, who’s about three years older than Zoyeb. “We had no idea why he couldn’t hit a ball anymore or why he’d refuse to play with us.”
Zoyeb withdrew from his friends as well. While his behaviour puzzled his classmates and teachers initially, it was not enough to cause concern. “He kept his grades up,” says V. Suma Padmanabhan, the principal of Asan Memorial Sr. Sec. School, Chennai. “And he participated in class and on field, just enough that no one suspected much was wrong with him.”
Zoyeb’s mid-teens were the hardest. He couldn’t even walk across the school courtyard. “I would use a small passage along the cycle stand and grab the walls to support myself while stumbling to class so nobody actually saw me.” His ataxic gait — an unsteady, staggering movement because walking became uncoordinated — had officially set in. He hid his growing lack of coordination from everyone for about three years — no mean feat — until his father had finally had enough. “We thought he was suffering from a psychological disorder,” he recalls. “What with him walking into walls and being anti-social all the time.”
Father and son butted heads until the father’s will prevailed and Zoyeb was dragged to a line-up of doctors.
***
Dr. Zaheer Ahmed Sayeed, a neurologist, was the first one to diagnose Zoyeb correctly. And after that, Zoyeb’s life was consumed with visits to all kinds of hospitals to undergo all sorts of treatments. Iftikhar left his job and started working part-time so he would be able to take Zoyeb hunting for various cures and treatments and be able to rush to his side at a moment’s notice if required. Zoyeb still wanted to hide his condition, though. “Silly boy had a great group of friends. He drove them all away with his half-cocked notions of independence,” says Iftikhar.
Iftikhar has been by Zoyeb's side at every faltering step. Photo: Sufiyan Ahmed Faizi
“I just didn’t want anyone to know,” shrugs Zoyeb, standing up to play with his PS3. Sufiyan backs away slowly, knowing Zoyeb wants to do this on his own. He makes sure a chair is placed just behind Zoyeb in case his legs give way. As Zoyeb adjusts his controller and coordinates, Iftikhar calls attention to his posture. “Look at how he’s standing; it’s the typical ataxic way.” True enough, Zoyeb stands with legs wider apart than is normal, swaying slightly in place, his every movement deliberate and controlled — almost like someone who has had a little too much to drink.
“I refuse to allow him a wheelchair,” says Iftikhar. “He needs to be on his feet as long as his body lets him.”
***
Even after Zoyeb was diagnosed with Spinocerebellar Ataxia (SCA), he refused to let his father tell anybody. He didn’t want anybody’s help, or worse, their pity. He was determined to power through on his own. However, he was halfway through his Class XII, when he decided he didn’t want to continue his studies: things were becoming too hard. While Iftikhar was of the opinion that his son needed saving from himself and those half-cocked notions of independence, he backed down and waited for Zoyeb to come to terms with his condition on his own. One day, Zoyeb came home from school and told his father he was ready to talk to his principal. Ms. Padmanabhan had taken a class that day and the lesson had apparently hit Zoyeb hard. “I don’t remember the lesson exactly,” smiles Ms. Padmanabhan. “Einstein, perhaps.”
Once Zoyeb confided in her, things turned around. “We did all we could. I told him clearly that disability shouldn’t come in the way of education. We brought his classroom to the ground floor, got all his medical leaves and permissions and special allowances in place; we arranged for extra classes in lieu of those he missed as well.” Either a teacher or Ms. Padmanabhan herself would hold his hand and walk him to his class once Iftikhar dropped him off at school.
His academics were back on track, and Zoyeb more than made up for his earlier low scores. “I’m slightly above average, you see,” he says with an impish grin. It wasn’t an easy path to stagger along, though. Zoyeb was put on strong medication causing drowsiness and other side effects that led to him missing a lot of school. A low attendance score meant he had to work extra hard to keep up. However, his friends were told of his problem and they rallied around him. As did his family. While the youngsters helped him out with school work, the older members helped chart out the next plan of action. Iftikhar was by his side at every faltering step. In 2011, he sent Zoyeb a mail to which a YouTube video was attached. The >video shows how Derek Redmond tore a hamstring at the 1992 Olympics in Barcelona during the 400m event and attempted to limp through the rest of the race. His father fought through security and ran up to him on the track. “You don’t have to do this,” he told his son. “Yes I do,” he replied. “Well then, we’re going to finish this together.” And then his father held on to him as Redmond limped to the finish line.
“Hi Zoyeb/ Assalam alaikum/ We have work to do,” Iftikhar wrote to Zoyeb in that mail.
***
“I’ve taken Zoyeb all over the country, looking for treatments,” says Iftikhar. “We’ve tried everything.”
Iftikhar isn’t exaggerating, they really have tried everything. Allopathy, homeopathy, naturopathy, unani, ayurveda, equine therapy; even something as far out as pebble therapy that has father and son bursting into paroxysms of laughter at its absurdity.
Some of the suggestions have stuck, though. Zoyeb has a set of exercises he has to follow, including activities that would improve his coordination or at least help slow the degeneration down. He’s quite thrilled that the PS3 is under the list of approved ‘activities’ — the motion detection games are supposed be good for him. He also enjoys reading — Jeffry Archer’s Kane and Abel is his favourite — and loves comics.
“Batman, say Batman,” prompts Sufiyan with a grin, when Zoyeb is asked about his favourite superhero. He furrows his brow. “Honestly, I prefer Tintin or Asterix.”
***
Zoyeb's handwriting while he was studying for his BSc degree (left) and his present handwriting (right). He now needs a scribe to write his exams for him. Photo: Zara Khan
While undergoing all sorts of therapy, Zoyeb has proceeded to top his BSc (Zoology) course, simultaneously work on a BSc in Psychology and get cracking on his MSc. “I’ll be doing my PhD in genetics,” he says decisively. He also wants to supplement his doctorate with research on ataxia. He knows it’s going to be an uphill battle and is girding his loins. His handwriting has worsened and at present resembles an amped-up-on-sugar-preschooler’s. “What examiner would grade my paper with writing like this?” He has been attempting to get himself a scribe and is hopeful of something working out before his next set of exams. “Rules only permit a scribe to the visually or physically challenged. We’ve made several requests for his case to be considered. Most people have not even heard of Ataxia and it is not included in the list of physical disabilities that require special facilities in education,” says Iftikhar, who helps his son walk up to the first floor to his class every morning and picks him up again in the evening. “There are days Zoyeb finds it really tough. I’ve given him my word that we will continue walking up the stairs till the day either he or I fall.”
“He’s very intelligent, interactive in class and popular among the boys,” says Dr. M. Asrar Sheriff, Head of the Department (Zoology), New College, Chennai. “Being from the department that we are, we understand and are sensitised to his condition. There is a certain degree of leniency that we provide to Zoyeb — his classmates help out with experiments, help him draw his diagrams, we also give him extra time to finish his papers. However, it must be said that Zoyeb has never let us down. In fact, we are hoping that he continues his research with us once he’s done with his masters.”
Zoyeb receiving an award. Photo: Special Arrangement
Zoyeb, generally the affable type, has gone back to participating (and winning) quizzes and other onstage events, not to mention making new friends. He also wants to volunteer for the Coordination of Rare Diseases at Sanford — a registry that tracks rare disorders and the patients suffering from them. “Something similar in India would be greatly beneficial, but hasn’t materialised yet,” says Iftikhar.
“In India, we have two problems. One, of course, is that a lot of cases don’t come to medical attention. Second, developed countries have a centralised system where they can collect information about patients with rare conditions and then assimilate or build on that knowledge. Unfortunately, the Indian system is so fragmented that it simply does not allow for centralisation,” says Dr. Krishnamoorthy.
Lack of a registry hasn’t stopped Zoyeb from seeking and providing support online. He knows of and is part of several support groups, not just in India, but across the world. He’s Facebook friends with Michael Carter, a fitness trainer and body builder, not to mention the founder of www.disabilitydontmeancant.com. “He has the same type of ataxia as I do — SCA,” says Zoyeb. He also has several ideas of his own. He hopes to be able to develop a mobile app that puts volunteers in touch with people with special needs. Giving back — that’s what Iftikhar has been trying to teach him. And give back he shall.
A few of the awards Zoyeb has won. Photo: Zara Khan
What is Ataxia?
The word "ataxia", comes from the Greek word, "ataxis" meaning "without order or incoordination". The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias.
Typically balance and coordination are affected first. Incoordination of hands, arms, and legs, and slurring of speech are other common symptoms. Walking becomes difficult and is characterised by walking with feet placed further apart to compensate for poor balance. Impaired coordination of the arms and hands affect a person's ability to perform tasks requiring fine motor control such as writing and eating. Slow eye movements can be seen in some form of ataxia. As time goes on, ataxia can affect speech and swallowing.
— courtesy National Ataxia Foundation
Zoyeb blogs at willnddesire.wordpress.com and anataxicsblog.wordpress.com
You can contact him and his father at zoyebonline@gmail.com
For more information on Ataxia, visit www.ataxia.org and ataxia.in
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