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how i care for vision loss: a mother and son's journey beyond limitations
alexis, like a lot of moms, is proud of her son because of what he can do, no matter his challenges with vision loss.
6 minute read
alexis nickerson, left, doesn’t put any limits on their abilities and harry, right, shines in a lot of different areas. he’s keen on science and will be competing at a national science fair with software he developed to classify eye conditions using a smartphone.
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alexis nickerson and her 16-year-old son harry compete at the canadian national level in goalball, a team sport for athletes with visual impairments. they’re fit and fiercely competitive—the kind of people who work hard and like to excel. maybe it’s good genes, but being driven has a lot to do with outlook on life.
“in our experience, it’s been helpful to have that mindset of you can still do what you love. you might need to adapt it, but, you know, let’s find a way,” says alexis, a physiotherapist and mom of two in halifax, nova scotia.
in goalball, everyone has degrees of vision loss and wears an eye mask to level the playing field. it’s a game where participants use hearing and touch to navigate a volleyball-size court and score by throwing a three-pound ball with bells inside into the opponent’s goal net (while the opposing team tries to block it with their bodies).
“the ground has tactile cues on it, so you can feel where you are. it’s a team of three versus a team of three,” she adds. there are co-ed teams, but she and harry play on their respective women’s and men’s teams.
“i think we both love the intensity and working with teammates on the court, it’s pretty awesome.”
seeing the signs of vision loss
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alexis was born prematurely and later diagnosed with retinopathy of prematurity, an eye disease that happens in premature babies and can cause vision loss or blindness. her case was considered stable and “there wasn’t anything else more to it.” she’s legally blind, but didn’t have extensive, modern testing for her vision loss until harry experienced his own vision troubles. a super-athletic kid from the start, he was in gymnastics at age two. but when he was nine, he had an accident. he ran straight into a bar during gymnastics training—completely out of character for someone so agile and coordinated.
right on the spot, alexis, who also trained as a gymnast growing up, immediately called the eye doctor for an appointment. harry had recently aced an exam at the optometrist where they only check your central vision, so he has good central vision, but this was something different. the ophthalmologist said that likely he had peripheral vision loss and made room for him the next day for testing.
that’s when everything changed. harry was declared legally blind and diagnosed with retinitis pigmentosa (rp), the term for a group of inherited eye diseases that affect the retina. rp is progressive, meaning that full blindness is possible. estimates suggest that about one in every 4,000 canadians has rp and by age 40, many are legally blind with a severely constricted field of vision.
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“before we got all of the results back, i don’t think you really let yourself fully go there until a diagnosis is given. you’re still keeping some hope. but waiting for the testing, we just needed an answer, but also getting that answer was devastating,” she recalls, sadness in her voice clouding over her enthusiasm for sharing their story. her family is involved in advocacy and fundraising for fighting blindness canada, a national charity that supports research and community-building for people with vision loss. may is vision health month, and alexis and harry will participate in the organization’s move for sight initiative on june 22.
misconceptions of vision loss and moving forward without limitations
parents, along with their kids going through vision loss, change their approach to daily life and future plans, alexis says. “i think even subconsciously, you’re always thinking about what your kids are going to do, what school might look like, what their social life might look like, and suddenly that changed, even though he’s a smart, dedicated, passionate kid. i knew he would go on to do awesome things. i think every parent thinks that of their kids. but we knew that would look different, and just that looking different was really hard.”
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the ophthalmologist suspected that alexis also had rp, so both mom and son went through the visual and genetic testing that revealed the gene mutation that had originated with alexis. none of her brothers or their kids are affected.
for alexis, though, talking to harry about his eye disease stands out like a physical “punch in the gut,” she says of answering his questions. “we were told just to answer when he asked about it, not to just go home and say, ‘hey, you’re likely losing all your vision.’ so one night he asked, ‘am i going blind?’ and one of his first questions after that was, even at that young age, ‘what am i going to do for a career?’ and i said, ‘you’re going to do whatever you want.’”
when she was growing up with her vision challenges, she wasn’t aware of adaptive devices and supports, so that’s something she’s adamant that others learn about. for example, both she and harry use a white cane to help navigate. but at school, people have said that he’s faking his vision loss because he can see to read his phone, but then he needs a cane to move around the school.
the misconceptions are frustrating. alexis wants people to know that only about 15 per cent of people who use a white cane are fully blind. “most people assume you can’t see them or see things, so people find it odd when you make eye contact or smile or say something to them.”
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the nickersons don’t put any limits on their abilities and harry shines in a lot of different areas. he’s keen on science and will be competing at a national science fair with software he developed to classify eye conditions using a smartphone. as well, he competes in gymnastics in all six of the men’s events. he joined goalball soon after his rp diagnosis to give him another athletic pursuit. even his mom says he’s a jock (with a big heart and inquisitive brain).
“i don’t know many 16 year olds that come off the court and want to give their mom a hug,” she says of attending goalball tournaments. “he is very comfortable in his own skin. he’s a big jock but isn’t afraid to show some love.”
just as important, she says harry is at peace with his eye condition. it can’t be easy, because there’s no pattern in families in regard to how it progresses over time. while he still has some central vision, no one knows if he’ll have vision in three months or a year or two years.
“there’s no predicting it, so i think that’s the hardest part,” she explains. “would he give a lot of things up to have some vision back or stabilize his vision? absolutely. my hope is that we do find some sort of treatment to slow down or even give him back a little bit of vision.” she’s often in contact with fighting blindness canada and looking at current research, hoping for a study he could join that might give him that chance.
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connecting with others in your shoes so ‘you can just be you’
her advice for others with vision loss is to reach out and find people who have a similar experience, because that’s where true understanding and empathy lead to friendships.
for alexis and harry, it’s goalball.
“we love the sport, but it’s not just about the sport. we have amazing friendships right across the country and beyond from goalball and there’s really nothing like connecting with people that know and understand what you’re going through. you feel like you can just be yourself. you don’t need to pretend to see things, you can just be you and it’s just a comforting feeling.”
team sports are not for everybody, she admits, but finding people who share your interests is a solid start to a support network and feeling that sense of belonging.
alexis, like a lot of moms, is proud of her son because of what he can do, no matter his challenges.
“i still get pretty emotional watching him compete. what he’s been able to do as a legally blind athlete is incredible. before a competition, i always tell him to ‘have fun and go show the world what you can do,’” she says smiling. “like there’s no limitation. and people are shocked when he picks up his cane between events or after events thinking ‘you were just out there and now you’re walking around with a white cane.’”
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