I was born with retinitis pigmentosa, a degenerative eye disease that caused me to go blind. Then, at age 53, I signed up for a groundbreaking $190,000 retinal implant that promised to give me back my sight
When I was eight months old and starting to crawl, I began bumping into furniture and people. I couldn’t find my toys. My parents figured I had poor vision and eventually took me to an optometrist for my first eye exam. It was 1962, and we were living in Karachi, Pakistan; all the doctor had was a flashlight and an eye chart. He said that because my eyes looked normal, the problem was likely caused by optic nerve damage at the time of my birth. He told my parents that my vision would improve over the next few years as the nerves repaired themselves.
Aside from my bad eyesight, I had a happy childhood. My father, Essa, ran a successful tote bag exporting business that employed 150 people. My mother, Fatima, stayed home and took care of the kids. I was the youngest of three, with two brothers: Jalaludin, who is 10 years older than me, and Hussein, who is seven years older. We were comfortable and content, in a three-bedroom apartment in a middle-class neighbourhood. On Sundays, my dad would take us out for a picnic or a day at the beach.
Growing up, I told myself I wasn’t blind—I just had lousy eyesight. I had about 10 per cent vision, which meant everything was blurry, without texture or definition. The world appeared to me the way it looks to a sighted person underwater. I saw shapes and some colour, and could differentiate between light and dark, but I had trouble distinguishing similar shades, like green and blue, or pink and red. And I couldn’t recognize faces: I just saw amorphous blobs of skin, dark patches where the hair and eyes and mouth would be. On a sunny day, the light helped me make out more nuanced details. When it rained, I was in the dark.
My only visual aid was a pair of Coke-bottle glasses with a -7 prescription. In 1960s Pakistan, my options were limited. We didn’t have many specialized schools for people with disabilities. My doctors had never heard of Braille. No one carried white canes or owned service dogs. Most of the time, I took my mom’s arm to guide me when I walked. We had nannies who took care of me, cooked for me and helped me cross the street. And when I was alone, I used my other senses. I could memorize the layout of a room after feeling my way around it once or twice, and I was able to detect where something was by assessing the volume and direction of the sound that bounced off of it. It was my own version of echolocation.
My dad was overprotective of all his children, but especially me. I was the youngest. I was a girl. And I couldn’t see. When it came time for me to enrol in kindergarten, he was reluctant to send me to the Montessori school that my brothers had attended. He was afraid that other kids would bully me, that I’d hurt myself on the playground and that I’d fall behind. I was home-schooled long before it was trendy. An instructor would come by for two hours in the morning and run through my lessons. Slowly, painstakingly, I learned to read and write. I always did my homework between 2 and 4 in the afternoon, when the light was brightest and my sight was at its strongest.
The author at age three
All the while, my doctor encouraged my parents to send me to a proper school. When I was eight years old, they finally relented. That fall, I enrolled in Grade 2 at a private all-girls school near my house. Even though my parents told my teachers about my impairment, my eyes looked normal, and no one really believed I was blind. I couldn’t see the blackboard. I had to hold my books millimetres away from my face. It took me much longer than the other kids to complete my work. I got by on memorization, with lots of help from my older brothers. Some teachers thought I was faking it. Once, on a dark and rainy day, the light wasn’t strong enough for me to write a test. The instructor accused me of lying and smacked me on the forearm with a wooden ruler.I struggled through my teens, with my parents largely in denial. By the time I turned 20, the reality started sinking in. Most girls my age were getting engaged, and yet no one was interested in me. In the Pakistani Muslim tradition, parents arranged all marriages, and they all wanted the ideal woman for their sons: gorgeous, educated, family-oriented. Blindness didn’t fit the bill.
My dad did everything he could to make me feel normal, but deep down he knew the truth. I had little education, no career prospects and no husband—when he and my mother died, I would be lost. My two brothers had gone to school in Canada, married and started new lives—Hussein worked for a typewriter company; Jalaludin had an IT job. My father decided we should immigrate, too. That way, I would have a strong support system. He had another reason as well. Canada was medically more advanced than Pakistan, with new technologies and treatments. My dad wanted to believe I could be cured.
We arrived in Toronto in 1983, when I was 22. I stayed with my brother Hussein; his wife, Najma; and their 17-month-old daughter, Tasneem, in their Thorncliffe Park apartment, while my parents lived with Jalaludin and his wife in their Victoria Park home. I spent the first few months watching soap operas, hoping to pick up some English. The first time it snowed, I jumped out of bed like a kid and stared out the window for hours, mesmerized. I could see the flurries, if not the individual flakes.
Six months after the move, my father and Jalaludin pooled their resources and bought Hunts, a bakery franchise at Jane and Finch—my father invested his life savings, close to $100,000. Unfortunately, neither of them knew much about running a business in Canada. Within a year, the place had gone bankrupt, and we lost everything. The failure was devastating for my dad, and a few months later, he had a heart attack. As soon as he recovered, he picked himself up and got a job as an attendant at a Texaco station.
In the meantime, I got an appointment with an ophthalmologist at SickKids. He was the first doctor to properly diagnose me. I learned I’d been born with a degenerative eye condition called retinitis pigmentosa, which causes a slow, progressive loss of vision. He told me that the retina is equipped with millions of receptors called rods (which receive light) and cones (which take in colour). Retinitis pigmentosa causes the rods and cones to wither away until they disappear entirely, eventually leading to total blindness. Though the cause is unknown, the doctor explained that the disease was genetic—and testing revealed that both of my parents carried the traits that caused RP and had passed them on to me. And then he said the words I never wanted to hear. “Unfortunately, there is no cure. Your vision will continue to deteriorate until you are completely blind.”
The author at age seven
My world crumbled. In Canada, I thought it might be possible to attend college one day. I wanted to travel. I wanted to live by myself. Suddenly, I knew I’d never have any of those things. I couldn’t let my parents know how much it was affecting me. For the next few weeks, I pretended everything was fine. The doctors gave me a collapsible cane to help me get around. When I was with my parents, I hid it in my purse so they wouldn’t think I was struggling. Every night I would break down sobbing in my room after my parents had gone to bed. What was my life going to be?The next time I saw my doctor, he referred me to the Canadian National Institute for the Blind, or CNIB. They taught me how to use my cane on stairs and public transit, and which clothing colours work best together so I could assemble my own outfits. The staff, who were mostly blind, were educated, with lives of their own. They helped me realize that I could become independent. I could do something with my life.
Armed with newfound confidence, I signed up for courses at the CNIB Career Centre. For the first few weeks, my brother would drop me off at school, but eventually I learned how to use the TTC. CNIB staff taught me where to stand while waiting for the subway, so that the conductor could give me extra time to get on the train. After that, I used the TTC wherever I went. Some regulars on my route even watched out for me. It was risky, though—once, someone jostled my cane during rush hour at Pape station. I fell 22 steps and broke my arm.
In 1991, I got a call from a friend at the CNIB telling me that the Ontario Trillium Foundation was looking for a receptionist. When I told my parents I got the job, they were thrilled—especially my dad. He’d left his friends, his culture, his successful business at home, all in the hopes that I might have a life one day. “Now it’s okay for us to die,” my dad said. “You have a good job, and we don’t have to worry about you anymore.” My mom wept, telling me that the sacrifices they’d made were worth it. “Your future is secure,” she said. The thought terrified me—I was 30 years old and couldn’t imagine living without my parents.
I stayed awake the night before my first day, anxious thoughts racing through my head. “I can’t see. I’m not fluent in English. What if I don’t know how to answer the questions? What if I type the wrong information?” And yet things went better than I’d hoped. I organized the photocopy room so I’d know where each type of paper was. I memorized all the extension numbers and learned to recognize the voice of every board member who called. My employers provided me with a computer that displayed copy in a large font, and a projector that magnified my faxes and mail on a TV screen. A few months after I started the job, my parents and I moved to a new apartment in the Don Mills and Eglinton area. By that time, I was confident and self-sufficient. I’d become the main breadwinner for my family.
I’d been at the job for six years when tragedy struck my family. It was Christmas, and my father walked down the street to give our family doctor a gift. Once he was in the office, he started having chest pain. He was huffing and puffing, and within a few minutes he was lying on the exam table, unable to move. He’d had another massive heart attack, and he died later that day. He was 71 years old.
The author at age 10
The loss hit my mother the hardest. She was an uneducated 69-year-old woman from Pakistan who couldn’t speak English. And she had spent decades looking after my father. I went back to work after a month of mourning, but she never recovered. Nine months later, she had a heart attack, and died within a week.Losing both of my parents in the space of a year was devastating. I had never cooked, cleaned or paid any bills. I wasn’t prepared. Soon after my mother’s death, I moved in with Jalaludin and his family at Jane and Finch. My loneliness was crushing. I wasn’t sleeping or eating. Worst of all, my eyesight was deteriorating. The world was literally getting darker every day. Soon I developed cataracts from stress. And within nine months of my mother’s death, I had lost 100 per cent of my vision. I woke up one morning and discovered I could no longer see shapes or blotches, no longer catch movement in front of me. I couldn’t even detect the shifting of the light. For the next few days, I still tried to take the subway. It was difficult: there were times when I accidentally sat on people. I was 35, blind and alone.
My friend Bruce, a man I worked with, finally helped me snap out of it. He pointed out that I was still paying $1,200 in monthly mortgage instalments for the condo where I’d lived with my parents, and suggested I live by myself on a trial basis. If I couldn’t handle it, I could always move back in with one of my brothers. I listened to him.
I had to teach myself to do all the things my parents had taken care of. I registered for my first bank account. I figured out how to use a coin-operated washing machine and dryer by groping around for the slots. And I was lucky enough to have a network of people helping me. My friend Kimberly stayed with me until I felt comfortable enough to be on my own. Another friend recited a whole recipe book on cassette so I could listen and learn to cook. I had one friend who took me grocery shopping, another who helped me pick out clothes, and on it went.
Those first few weeks at the apartment were strange—the place was so empty without the familiar sounds of my father walking around, or my mother puttering in the kitchen. I’d never been alone before. I placed fuzzy stickers on my oven and microwave to know which buttons to push, and whenever I used oil, salt or pepper, I poured them into the dish over the sink, using the grooves in my measuring cups to figure out the amounts. I learned to cook Indian dishes like rice and curry, along with soups and salads. I even started hosting occasional dinner parties.
My manager at the Ontario Trillium Foundation hired another receptionist, named Stella, who took on the sighted tasks such as faxing and mail, while I did the work that didn’t require vision, such as answering phones. During the 2003 blackout, Stella had a hard time transferring calls in the dark. For me, it was a breeze.
The author with her father, Essa, brother Jalaludin, sister-in-law Nafisa, mother, Fatima, and niece Sharmeen
Accepting my blindness was liberating—I was finally independent. As the years went by, I started filling up my social calendar. I discovered a biking program for the visually impaired called Trailblazers, where we cycled on tandem bikes with sighted volunteers who navigated for us. A few years later, I volunteered to participate in a blind triathlon. I’d never been swimming before, and at first I was hesitant to go any further than waist-deep. Within six months, I was ready to swim in the race. I swam 750 metres, biked 20 kilometres and ran five kilometres with the assistance of a guide named Kate. I finished in two and a half hours.
Three years ago, I was listening to CBC Radio and stumbled on a story about Robert Devenyi, a retina specialist and the ophthalmologist-in-chief at UHN’s Donald K. Johnson Eye Centre. He was talking about a futuristic new device called the Argus II Retinal Prosthesis System. The implant, also known as the bionic eye, is a retinal chip that can help restore a blind person’s vision. Only 113 people in the world had done the surgery, two Canadians among them. And Dr. Devenyi was planning to start performing the operation in Toronto. As soon as the radio show ended, I called Dr. Devenyi’s office and made an appointment.
The Argus was invented by Mark Humayun, an American ophthalmologist and engineer at the University of Southern California. He had been researching the success of cochlear implants for deaf people, and wondered whether a similar device could be used to help the visually impaired. A company called Second Sight started manufacturing the product in 1998, with $200 million in grants and venture capital funds. The first Argus prototype came out in 2002, followed by a more advanced model, the Argus II, in 2007. Both systems were specifically designed for people with retinitis pigmentosa.
At my meeting with Dr. Devenyi, I learned how the Argus works. During surgery, doctors place an implant on the patient’s retina: 60 electrodes to replace the damaged rods and cones, along with a receiver chip that resembles a watch battery, held in place with a tiny titanium tack. After recovery, the patient wears a special pair of glasses equipped with a camera on the bridge of the nose. They’re attached to a small battery-operated unit that the patient wears in a belt around her waist, which processes the camera footage and sends it wirelessly to the retinal implant. The receiver then sends an electrical signal to the brain that produces an image, and voilà, sight is restored. Because the signal is going from the camera straight into the retinal chip, patients can even see with their eyes closed.
I endured test after test to confirm that I had no functional vision. Every time, a computer would flash lights, and every time, I wasn’t able to see them. In this case, my failure was my success. The test results showed that I was a perfect candidate for the Argus II. Dr. Devenyi explained the risks. My eyes could start bleeding or become infected. My body might reject the implant. At worst, my retina might detach from my eye. And because the sample size was so small, there was no way to measure how successful it could be. I didn’t care. I was 53 and completely blind—I had nothing to lose.
The only thing standing in my way was the cost of the procedure, which ran around $190,000 per patient. A charitable organization called Foundation Fighting Blindness generated some funds, but it wasn’t anywhere near enough. Then something incredible happened. Dr. Devenyi sent fundraising letters to his patients, including Sally Horsfall Eaton, a philanthropist and the wife of department store heir John Craig Eaton. Sally’s son was born deaf, so she already had an interest in cochlear implants. She also happened to be the former executive director of the Ontario Trillium Foundation—we’d worked together when I’d first started at the organization in the mid-1990s. Sally and I had always been friendly, and one day she called and encouraged me to go ahead with the procedure. Then she told me that she’d bankroll it herself—she donated $150,000 to UHN for my operation. Sally’s incredible generosity filled me with courage and confidence. I felt like the surgery was meant to be.
POST-OP: The author holding her Argus II glasses and video processor, which connect to the chip in her retina and help her see light and shapes (Image: Derek Shapton)
On March 30, 2015, at 7 a.m., I went to Toronto Western Hospital to prepare for the operation. The surgery lasted four hours. When I woke up in the recovery room, I had a patch over my left eye. Dr. Devenyi had implanted the chip and electrodes in my retina, but we had to wait three weeks for my eye to heal before we could activate the Argus with the accompanying glasses. I had the hardware, but I was still missing the software.Three weeks later, I went to see Dr. Devenyi. It was the day I would receive my glasses and activate my chip. I was terrified. What if it didn’t work? What if I’d wasted all this time and money for nothing? I put the glasses on my face and waited for the technician to set up the wiring. Slowly, he increased the electrical impulse, gradually cranking it higher and higher. And then it happened: I saw light for the first time in 15 years—a soft, radiant glow that illuminated the room. It was overwhelming. I burst into tears. I could make out Dr. Devenyi, the technicians, the nurses, my friends. Even though they were just dark shapes, without detail or definition, I had enough sight to see that people were moving around. My new bionic vision looked like a piece of negative film: I didn’t detect any colours, just black and white. But I could see!
Since the device gives stimulation to my retina and my brain, it improves over time. It takes a lot of practice: the more I use it, the better my brain can interpret what the Argus sends it. I see something new almost every day. The first week, I was walking with my friend, and I saw what looked like a fuzzy black tower on the street—it was a traffic light. Then I saw the button you press to change the traffic light. I had no idea what it was—my friend had to explain it to me. When I was crossing, I saw the white lines on the road, which meant I could cross the street safely. Before, I would go over the line and people would sometimes have to help me stay within. Now, when I take the TTC, I can see the empty seats—no more of those awkward moments, sitting on someone by accident. Once, on a clear night, I even saw the moon.
I will never see perfectly. I’m still working on my hand-eye co-ordination. Objects are often a few centimetres away from where my eye tells me they are. I have to grope around for my phone, for food at restaurants, for the doorknob when I’m entering my house. I will have to use my cane for the rest of my life, but it’s been almost a year since my operation and I’ve regained more of my vision than I ever thought possible.
I am 54 years old as I write this. In addition to sailing and running and swimming, I have just started playing blind tennis, which involves navigating the game by following the sound of the ball. I’m still working at the Ontario Trillium Foundation—if you call there, I’ll most likely be on the other end of the line. And I am taking some computer courses and thinking of going to school for social work at Ryerson. People have always told me we live in a beautiful world. I’m glad I finally get to see it for myself.