Finding light in the dark
Merico Tesolin was born deaf. Now, he is also losing his vision. Jana Pruden tells his story in 12 Instagram snapshots.
1. There is darkness, and there is light. In daytime, the darkness is mostly around the edges, but at night, it is everywhere. Like being blindfolded, with only shapes and tone in the shadows. It's December in Edmonton and the days are short. It is dark far more than it is light. Merico Tesolin's apartment glows even from outside, the brightest spot on an evening street. There are overhead lights switched on and a green lamp glowing on the desk, a standing lamp casting light in the corner, beside his great-grandmother's chair. A series of bulbs pushing the darkness out.
He was born into silence. Darlene Niederhaus's first and only child. She named him Merico after his paternal grandfather, who had himself been named for Amerigo Vespucci, the Italian explorer who saw the New World and whose name christened a continent. As a baby, Merico was beautiful and quiet, and Darlene used to joke that he could sleep through anything. But at daycare they noticed how he didn't turn around when there was a sound behind him. All the other babies looked toward the noise, but Merico didn't. The first doctor snapped his fingers in front of Merico's eyes and said everything was fine. But Darlene saw the truth at home, when the smoke detector was blaring and the dogs were barking, and her baby kept playing as if nothing was happening around him. Darlene knew then that her son couldn't hear the world around him, and soon the doctors knew it, too.
For months, mother and son struggled to communicate. They were alone, living in an old farmhouse in Thunder Bay, the two of them frustrated and angry, trying to reach each other. She learned to sign symbols to Merico, showing him words over and over again with her hands, praying for him to understand. The first sign he made was "duck," moving his small hand at his mouth like a quacking duck. He was not yet two. Darlene jumped up and down and cheered, and she saw Merico's face light up with the knowledge of what they had done. It was the first time Merico spoke to his mother, the first moment she understood.
3. Many in the hearing world do not know that American Sign Language isn't English. That it is a distinct and complex visual language, with its own grammar, syntax and vocabulary. It is a world created in the air, a language of hands and face, with tone and grammar expressed through movement and expression. It is not the same as a spoken language. When people who sign learn to read and write, it is their second language. It is not the same. That is something the hearing don't always understand.
The view was once that deaf people should be like the hearing. They were taught to verbalize and to read lips, to mimic the hearing world and hide the reality of their deafness as much as possible. Deaf children were sent away to schools, forced to communicate in ways that didn't make sense to them, sometimes punished harshly for doing otherwise. But how do you make a sound you have never heard? How do you recognize the meaning of the movement of someone's lips if you have never known the sounds they are making?
4. "For many years, people have told parents, if their children are deaf, focus on learning English and focus on oralism," Merico says. "But it's not natural, because English is an auditory language, right? It's set up on sound, and that you can hear things and understand. But then the deaf are looking at English, and it's like, I don't get the concept. When they sign, they get it super fast. Sign language is a natural language if you are deaf."
He is signing to an interpreter, who lends her voice to his words. No matter who is interpreting for him, Merico's voice comes through. His tone, his warmth, his expression belong to him.
5. It felt to Darlene like they had just gotten their feet under them when Merico started getting in trouble at school. His teachers at the deaf school thought he was ignoring them, defying them, sometimes staring blankly when they waved to get his attention or signed to him from across the room. But Merico swore over and over that he didn't see them, and finally, a teacher suggested they check his eyesight. He was 11 years old when he was diagnosed with Usher Syndrome, Type 1. He had already lost 80 per cent of his vision in each eye, and the remaining cells that transmit images to the brain were slowly dying. He was born completely deaf and one day, he would be completely blind.
Merico moved west in his twenties. He had always been drawn to the West for some reason, and when a friend moved to Alberta, he followed her. His mother was scared for him, as she often is. But she knew she had to let him go, as she always does. She had always known he wasn't broken, that he was exceptional and truly special, and that it was her job to help him do what he was meant to do.
"I've tried really hard not to hold him back," she says. "Inside, there's lots of moments, but you have to learn to live with it. I trust that God is looking after him." There are so many bad things in the world but you have to think of the good ones, she says. And know that most people are kind and want to help.
6. The world is made for those who hear, those who see. There are problems every day, obstacles to overcome. The bank will not let Merico renew his credit card over the telephone. He is speaking to them using a video relay service, which uses a sign language interpreter. The bank wants him to use TTY, a typing telephone machine for the deaf that is so outdated, Merico threw his out years ago. They go over and over it, but the bank won't budge. They say it is for security reasons. He finally goes to the bank in person, but they tell him they can't help him there. He has to call.
That is one thing. One day.
It is frustrating, sometimes dangerous. People don't always see his white cane, or know that it means he is blind. When he walks, he has to train his narrow field of vision in front of him, so he doesn't fall. He can't hear vehicles approach or honk, can't see them coming at him from the side. He has felt the bumpers of cars on his legs. Once Darlene jumped in front of a truck speeding toward Merico, knowing the driver might still hit him, but hoping if the driver hit her first it would at least slow him down.
7. No one knows how long it will be before Merico is completely blind. Today it is like looking through a camera, like seeing through a long tunnel. He can see the face of the man sitting on the bench nearby, and maybe a foot above and below. Around that are shades and light, but nothing clear.
One day he will not see well enough for sign language. He is trying to plan, adjust, think about what it will mean for his ability to communicate, to his job, his life. He is learning braille, sliding his fingers across a field of white bumps, learning to hear through the tips of his fingers. His phone is already a lifeline, and there may be other technology in the future to help him. For now, when it is dark, he uses tactile sign language, a technique of hand placed over hand, of feeling language through skin and muscle. "I've always been deaf, I don't know any different," he says. "I have no issues with being deaf and I'm able to manage. But I'm going to be on the different end of the spectrum losing my vision, starting from scratch on how to live my life without being able to see. I don't know how different my life will be, I don't known what changes I'm going to have to make and that's scary. At the same time, I can't dwell on it. I want to enjoy my life, and what I have today."
8. The dog was red and skinny, with ears that folded down and a face that looked serious and sad. He was a rescue dog that had come from the country somewhere, and there wasn't much known about his life except that it hadn't been good. His left eye was gone, an empty hole. When Merico saw him, he knew right away it was meant to be, that they were meant for each other. The dog's name was Ace, but when Merico adopted him, he called him Popeye.
9. In the spring, Merico travelled alone to Australia and New Zealand. He had always wanted to see those countries, and he knew he could not wait any more. Before he left, he had to learn a different form of sign language, which the deaf use there. He knew that he would be vulnerable travelling alone, so he planned to avoid being out at night in the dark, stayed in places that were busy and safe. He used his phone to write messages to strangers if he needed help. It was scary, but also liberating, like he was proving something to himself.
"I'm not always going to get a chance to see the world," he says. "At some point in my life I'm not going to have that option to do that. So some part of me is thinks I need to do everything I can while I can."
10. He saw aqua-coloured glacier water, stared down at the drop from a bus navigating a narrow mountain road. At Port Campbell, he saw the rock formations called the Twelve Apostles. There are only eight left now, limestone towers rising tall from the ocean. He stood watching them shining in the tide. While they are still there, while he can still see them.
At the end of the trip, Merico went bungee jumping. He worked out the details with the attendants by writing back and forth, and they made a plan. On the ledge, they communicated through touch, strapping the bungee cord to his legs, touching him to let him know it was time to go. He paused a moment then jumped, diving into the expanse, a blur of colour below.
11. Sometimes Merico thinks about Helen Keller. Deaf-blind after an illness as a baby, she learned to communicate, got a university degree and became an advocate and a role model, showing people that she was smart, that she had value, that she was not afraid. In 1933, she took on Nazis who burned her books in pyres of writing by those they considered to be degenerate or un-German. "History has taught you nothing if you think you can kill ideas," she wrote then. "Tyrants have tried to do that before, and the ideas have risen up in their might and destroyed them."
When Merico got home from his trip, he had some of Helen Keller's words tattooed onto his arm. They are written in braille, a series of dark dots on the soft pale skin of his forearm. They say, "Life is a daring adventure or nothing at all."
12. Merico's life is busy and full. He works for the CNIB and teaches sign language at the deaf school. He advocates for the deaf-blind. In the evenings, he makes his own red wine, cooks, spends time with his friends and Popeye. He is teaching Popeye commands through sign language, and Popeye has picked it up quickly. This week, Merico cut off his long hair, to donate for wigs for people with cancer.
He has always dated people who are hearing, but he would like to date a deaf person, or maybe an interpreter or someone who grew up in a deaf household. He is 31 years old.
When he starts to get scared about what is coming, he tries to push it away.
There is darkness and there is light. Through the window at Merico's apartment, there are trees with tangled branches reaching into the sky, and the cool grey light of winter. There is a pan of peanut stir-fry warming on the stove, and the face of a one-eyed dog. He is gentle and quiet, laying his head on Merico's lap. One eye searching. The other without sight.