Disclaimer: Tyler Sneesby is the author’s uncle.
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When someone loses one of their five senses, memories of life before can result in self-doubt, uncertainty, and profound sadness and grief. But that loss can also spark hope, change, and learning. Living with this paradox can be a daily battle.
Tyler Sneesby sits at his dining room table as his cat, Alfie, walks across the surface. Stroking Alfie, then fidgeting with his fingers, Tyler peers out the bright window across from him. He seems to be looking at something, but to him, the window is just a big rectangle of light.
Tyler, 45, recalls a day in October of 2015.
He points at the chair to his left; he was sitting there when it happened: “The left side of my face was towards the window, and I was thinking to myself, ‘You know, the brightness of that light is really sort of bothering me. And it’s like, I can’t really…I just feel like, fuzzy or something.’”
Tyler says he began to cover up his right eye, and then he’d cover up his left eye — and again, and again.
That’s when he says he realized it: “Holy shit, I can’t actually… I can’t actually see out of my left eye. That’s odd.”
Tyler has many titles — DJ Hunnicutt, part-owner and manager of The Good Will Social Club, and photographer — and he was about to receive a new one: blind.
That same day, Tyler headed to Winnipeg’s Eye Care Centre of Excellence at Misericordia Health Centre. He waited to see the on-call ophthalmologist — the visit that would spark a rabbit hole of what seemed like never-ending eye exams: visual field tests, retinal exams, CT scans, MRIs, eyeball, eyeball, eyeball.
The sight in Tyler’s left eye never returned. Tyler’s ophthalmologist said the eye was fine, and that this might be an optic nerve issue.
Tyler and his wife, Sarah Michaelson, had plans to go to Los Angeles. They had everything booked when Tyler’s ophthalmologist told him he needed an MRI. Tyler told the doctor he’d be back at the end of the month, but the doctor said Tyler needed the MRI the following day. He recalls the ophthalmologist’s urgency.
At that moment, Tyler says he knew something more serious was happening. He and Sarah cancelled the Los Angeles trip, and Tyler had his MRI.
Five weeks of appointments later, Tyler’s doctors told him he likely had multiple sclerosis (MS).
MS is an autoimmune disease of the central nervous system, which includes the brain and spinal cord. It causes swelling and damage to the protectant layer around the nerves. People living with MS experience a wide range of symptoms, and no two patients are the same. Tyler’s symptoms included balance issues, dragging his feet when he walked, fatigue, and in the end, optic nerve damage in his left eye.
Growing up, Sarah’s uncle had MS, so she had spent many birthdays and holidays in the hospital with her immobile uncle. Sarah says her reaction to the diagnosis was definitely not as relaxed as Tyler’s.
“I basically just put Tyler’s face on my uncle,” Sarah says. “[Tyler] was pretty neutral because he didn’t know much [about MS], but I knew too much.”
Tyler had opened up The Good Will Social Club (The Good Will) in Winnipeg with some buddies about a year before this, so he thought the strange feet dragging and balance issues were from overworking. With his new diagnosis, Tyler began to make sense of these behaviours.
“I love walking, and I’m used to walking across the whole goddamn city,” Tyler says. “I could barely walk the one and a half kilometres from home to work. I thought, if people saw me walking down the street, they must have thought I was drunk or something.”
Along with the stress of managing a new bar, Tyler had to start going to the MS Clinic every morning to get cortisone injections, a steroid that should’ve helped the vision return in his left eye. However, with five weeks between the loss of vision in Tyler’s eye and his MS diagnosis, the steroids failed — there was not enough time to save the nerve damage in his eye.
Before Tyler’s diagnosis, he had been watching The West Wing on Netflix.
“That’s how I learned what actually MS was. Because the president, Jed Bartlet, played by Martin Sheen, has MS in that TV show. And I was having these sort of leg issues, and I was being sort of flippant and joking saying, ‘I could have MS. His legs don’t work, my legs don’t work, I betchya I have MS,’” Tyler recalls with a scrunched-up face, as he touches his hand to his beard and locks eyes with Alfie.
With one seeing eye and one blind eye, Tyler thought he was in the clear. He could learn to live with only one eye picking up information, and he could learn to live with MS. He thought if he was able to keep his MS symptoms to a minimum with medication, he could continue doing the things he loved — DJing, running The Good Will, and taking photos. And he did — for nearly four years.
Tyler had been using reading glasses for roughly a year. The vision in his left eye wasn’t returning, and his right eye started to become slightly blurry, so he figured it was time to go to an eye doctor for a prescription.
Tyler’s optometrist determined that Tyler’s right eye was seeing at 20/20 vision, but he needed help with up-close reading. She said he could continue to use his reading glasses, or she could write him a weak prescription. Tyler chose the prescription.
“It was kind of nice to shop for glasses and pick out a cool pair.”
Tyler has always liked to express himself through stylish sneakers and hip t-shirts, so cool frames were no exception.
Tyler tried on several glasses and found a pair he liked. He put in his order and waited for them to arrive. The three-week wait was too long for someone whose eyesight was on a rapid decline. When his glasses came in, Tyler was too blind for them.
He waited another couple of weeks to follow up on this added vision loss.
“Tyler tends to tough things out, so he didn’t go to the doctor right away because he thought he was just tired,” Sarah says.
When he eventually went back to the optometrist five weeks after his initial appointment, she said his vision was five times worse.
Tyler had the same unnerving feeling he had before his MS diagnosis. He knew his eyesight shouldn’t be declining that drastically, that quickly.
That summer brought another series of doctors’ visits: two MRIs, two separate neuro-ophthalmologists’ appointments, and appointments with his MS neurologist, a glaucoma specialist, and a retinal specialist.
“I would say, between April and September, I probably went to 19 different doctors’ visits.”
Tyler’s voice is soft but annoyed. He lets out a sigh and looks down. It seems the memory is aggravating.
Every doctor had different theories about why Tyler was losing his eyesight:
One neuro-ophthalmologist was certain Tyler had optic neuritis, even though the MRIs didn’t detect it. Optic neuritis is a common symptom of MS where the optic nerve is inflamed.
The other neuro-ophthalmologist, along with Tyler’s MS neurologist, didn’t know what exactly was causing the vision loss, but they disagreed with the optic neuritis theory. They thought it could have something to do with his MS, but it could also be something different, like glaucoma. So, Tyler saw a glaucoma specialist and a retinal specialist. Still, nothing seemed to make sense, and none of the doctors gave Tyler answers.
Amid these doctors’ appointments, Tyler had to give up driving.
Sarah remembers Tyler’s last time behind the wheel in June of 2019.
“He was commenting on how it felt a little weird driving. It was a hard talk to have because I had to suggest to him that he had to stop driving.”
She says as soon as she suggested this, Tyler immediately agreed: he knew that was the last time he would be in the driver’s seat.
“After I was home, parked safely, I was like, ‘I will not do that again,’” Tyler says.
He describes what it’s like now as a passenger only being able to see a shadow of a car once it’s a few feet away.
“Wow, if I was driving, that would have been real trouble,” he says, envisioning scenarios.
Tyler used to hop in the car and go. Now, he has to find a ride to get around.
“The act of driving, I’ve always enjoyed, but what comes with this is the loss of independence,” Tyler says quietly.
Tyler would get rides to his doctors’ appointments with whomever he could — Sarah, his sister, his niece, his friends, taxis, and TappCars.
Tyler was quickly realizing blindness was his new reality. He didn’t know how it was happening — but he knew it was happening. The daily thought that tomorrow could be the day he fully loses vision was constantly on his mind.
He found himself unable to do the things he normally would in a day. He couldn’t text people back without using Siri. He couldn’t check social media. He couldn’t see his computer properly to DJ with ease. He couldn’t help run The Good Will. He couldn’t see.
He was lost.
Legally blind, barely working, and unable to do his daily routine, Tyler made his first visit to the Canadian National Institute for the Blind (CNIB). CNIB supports visually impaired people in many ways. They helped Tyler set up his phone with all the accessibility features for blind people. Tyler can still see his phone, as long as his right eye is a centimetre away from it and the font is set at the largest size.
CNIB also gave Tyler an identification (ID) cane. He doesn’t need it for walking yet, but its purpose is to let other people know he’s visually impaired. This ID cane reduces the number of “I’m blind” conversations.
People will recognize Tyler in public, and Tyler won’t see them to say hi. He can see their figure, and he knows someone’s there, but he can’t see who it is.
“When we are in public together, I will whisper into his ear when we are walking up to someone we know. I am always whispering in his ear,” Sarah says. A lot of people Tyler knows still aren’t aware of his blindness, so Sarah tries to help any way she can. “I am trying to learn how to not over help him.”
Tyler’s years of community involvement means he knows a lot of people.
Tyler asks that people approach him and announce who they are, so he doesn’t walk around repentantly thinking he may be ignoring people he knows. This is just another part of Tyler’s life that is now different.
Tyler’s work life changed too. He retired from his position as general manager at The Good Will on Jan. 10, 2020. He kept his share as an owner of the business, but after running the place since it opened in 2014, this was a big shift.
“I’m synonymous with The Good Will. I’ve been running it for five years now, and to suddenly not be able to do that job, and to suddenly think about, well, maybe I cannot do this job anymore is a real big thing — it’s troublesome, it’s depressing,” Tyler says.
David Schellenberg, 28-year-old co-owner of The Good Will, speaks highly of Tyler: “Tyler is a real gem of a man. An incredibly hard worker and one of the most clever people I’ve ever met. It breaks my heart that I don’t get to work with [him] anymore. You sit two feet away from someone for five years, and you really get to know them.”
David says Tyler has done a lot for The Good Will, and David explains the recent shift there: “No one is routinely buying everyone lunch like the incredible boss that he was.”
The last few months of Tyler working was hard for David to watch. David had to see his friend’s frustrations and struggles while going blind.
“He was angry and tired and didn’t have the energy to be here anymore. So yes, I am sad to see Tyler go, but I am happy for Tyler’s sake that he got to go.”
Tyler says this will be the first time in years that he won’t have a place to go for work. The stress of running the bar is something Tyler admits he needs a break from while he figures out what being blind is all about, but he knows he has to keep himself on track.
“I’m worried about, you know, sleeping till 3 p.m. and not being motivated to leave the house or do other projects, or even being able to do other projects,” Tyler says. “I’m a little worried about falling into a depression once I’m not engaged in the business.”
Along with the loss of his manager position, Tyler had lost the ability to do a lot more of what he claimed makes up his DNA. He has a Bachelor of Fine Arts majoring in photography, and he DJs as DJ Hunnicutt, but blindness stole Tyler’s bliss. He didn’t know how to photograph blind; he didn’t know how to DJ blind. Tyler found himself in an identity crisis.
“My identity is so much wrapped up with what I do. Beyond the loss of independence, I think the bigger hurdle I’m encountering is the loss of identity, and who am I if I can’t do these things anymore? Who am I if I’m not running The Good Will, or if I’m not DJ Hunnicutt, or if I’m not taking photos?”
The room is silent, and Tyler’s energy is low after saying this. Tyler’s cat, Alfie, joins him again on the table. Alfie’s presence seems to comfort him.
“It’s been hard to watch him lose so many things,” Sarah says. “He doesn’t want to feel disabled. Is that his identity? Being disabled should never be anybody’s identity. But it’s something he thinks about from when he wakes up ‘til he goes to bed.”
When people describe themselves, they often mention interests, occupations, and hobbies first. That was just the scenario Tyler found himself in — wrapping his character in his jobs, not his values.
Tyler didn’t have time to learn how to be blind. Tyler’s family didn’t have time to learn how to help him be blind. Daily, Tyler was hit with new challenges and obstacles.
“Every day, you wake up and go, ‘Well, this is it,’” Tyler says, describing his new life. “That takes its emotional toll on you.”
Tyler says he’d wake up to look at the time on his alarm clock, and it’d be a green blob of light. He’d stop at the grocery store to pick up something for dinner, and the shelves looked like a blur of cans and colours.
“Everything just takes more time now,” he says. “That can be a real bummer. And by bummer, I mean soul-crushing depression.”
When describing his loss, Tyler remains composed.
“He is reshaping his identity. Being blind is forcing him to think about stuff that he never had to think about,” Sarah says.
Tyler and Sarah echo each other, even though they tell these stories on different occasions.
“That being said, I think I am getting there. One of the things about the identity crisis that I’m having, that I’ve sort of began to wrap my head around, is that the DJing and The Good Will are only outlets for my identity — they are not my identity. My actual identity is creativity, and compassion, and community, and things like that,” Tyler says.
Retiring at 45 was never in Tyler’s life plan, but neither was having MS or being blind.
Tyler wants to learn, as a blind person, how to do the things that bring him joy. He knows that to rediscover the outlets for his identity, he has to accept this new life. With Sarah, his family, and CNIB supporting him, Tyler hopes to get back to doing what he loves.
One thing that truly brings Tyler joy is walking.
“I still managed to walk across Winnipeg [in September], despite the fact that sometimes I couldn’t tell what street to turn on,” he says.
Walking across Winnipeg is something Tyler does once a year or so. He starts at one end of the Perimeter Highway and makes his way to the opposite. In September 2019, Tyler completed his first walk across Winnipeg since going blind. He now uses an assisted maps app, which is connected to Siri, Google Maps, and his headphones. This app tells him what his surroundings are as he walks, so he can still get around on foot safely.
Tyler hopes to start up photography again. He hasn’t taken many professional photos since going blind, but he wants to relearn the art. Tyler wants to host a photo gallery called Remains to be Seen later in 2020, where half the gallery will showcase photos he took while seeing and the other half will showcase photos he’ll take blind.
Along with photography, making and producing music has always made Tyler happy, and he wants to restart this in 2020. He says he might need to buy external hardware, like a drum machine that plugs into his laptop, as opposed to using the computer software he is used to, which isn’t accessible.
Of course, Tyler also wants to continue to DJ as DJ Hunnicutt for as long as his eyes will let him. Although his face is an inch away from his laptop as he chooses a new song, the actual turntables and mixers are second nature to him.
Tyler calls 2020 “the year of perfect vision,” though it can’t be perfect for everyone.
“I hope to learn to live with this blindness. I hope to learn to live with it so that everything else will sort of follow suit. The art making, and the music production, and all those things will hopefully just come. It’s easy to be discouraged when you try to do something that you’re so used to doing. So, my hope is that I become more accustomed to this new reality and become more patient, so that I can make art again, make music again; and if that means learning new ways of doing that, then that’s what it is. Right, Alfie?”
Tyler looks to his cat for a response. Alfie looks back — the way cats do when they love their owner: eyes wide with compassion, ears tall and curious, and body relaxed and loving. Tyler peers down at Alfie, as if he can see these details on him after all.
An update from the author: Since I wrote this article, Tyler’s blindness has gotten worse. On February 27, 2020, Tyler was diagnosed with Leber’s hereditary optic neuropathy (LHON) — a genetic optic nerve disease caused by mutations in the genetic code of the mitochondria, which are small subunits within a cell. Currently, there are no known treatments or cures for LHON.