FORT ST. JOHN, B.C. — Fort St. John resident Edwina Nearhood continues to crush barriers, enjoying life as a grandmother and making banana bread in the afternoons.
What is extraordinary about Nearhood’s story is the fact she became blind following a heart transplant in September 2022 when she “traded her eyes for her heart.”
Speaking to Energeticcity.ca about her journey coming to terms with the loss of her sight, she said she wouldn’t want anyone to take pity on her.
“I speak on behalf of my experience of losing my vision,” said Nearhood. “[Blind people] find it so belittling when people do come and do an interview, bring some news or do a profile and say ‘oh, look, they’re feeding their cat and they’re washing the dishes.’
“That’s not a big deal. There are blind architects and blind lawyers. There are blind psychologists. They had to go through medical school like everybody else, which means residency for everything. So those are the people that I look to for inspiration.”
A former real estate appraiser from Fort St. John, Nearhood was born with congenital heart disease, first experiencing symptoms as a teenager, when she fainted during a bike ride.
“[I] fainted at 16 riding my bike down the street,” said Nearhood. “[You’ve] got to love Fort St. John, because a cab driver picked me up and took me to the hospital.”
She said she managed it “for a lot of years,” adding “it wasn’t too much of an inconvenience,” before being officially diagnosed at 25 years old.
“Doctors said, ‘walk and do yoga,’” said Nearhood. “I am a competitive [person], so yoga was not my personality type. But I eventually did yoga.”
In 2007, she underwent a septal myectomy – a heart surgery that removed a portion of her thickened septum, the wall located in the heart’s ventricles. She was discharged three days later.
“The surgeon said, ‘you probably need a pacemaker, but just go and live your best life,’” recalls Nearhood. “Some people have the septal myectomy and they’re good, the problems don’t resurface.”
Unfortunately, further difficulties did arise for Nearhood, including an irregular rapid heartbeat, known as atrial fibrillation (AFib), for about nine months in 2015. Failure to treat the AFib eventually led to a stroke.
“It [the AFib] wasn’t captured right away,” said Nearhood. “I started clotting and had all of these weird symptoms present themselves. Everything was misdiagnosed. Nobody once listened to my heart and looked at those symptoms, despite the fact that I was pretty good at giving [my medical] history.”
Her experiences led to a position on the Northern Health Steering Committee of Physician Quality Improvement and a trip to the International Healthcare Symposium in Florida.
She also spoke at the 2017 BC Patient Safety and Quality Council event ‘What Matters To You?’ in Fort St. John.
“Every step I touched in healthcare, there was a problem,” said Nearhood. “I was really trying to support that. My mentality [is], if you don’t complain about something, you’re not going to try and make it better.”
Eventually, after her son left the house, Nearhood left her appraisal job in Fort St. John and moved to Vancouver, landing a job with the Canadian Revenue Agency.
During the Covid-19 pandemic, she described working remotely as “working in 385-square feet for two or three years,” and having eventually been unable to cope with day-to-day life due to her condition, she was eventually placed on the transplant list in 2022.
“I came home – and we went to Jasper on a bit of a holiday, and then I had a conference in Edmonton,” said Nearhood. “When I finished, I came home. At that point, I got a larger apartment because I knew a transplant wouldn’t be far away. I talked to my team, and I said, ‘I can’t do this anymore.’”
She was put on the transplant list in August and got the call 21 days later, on September 22nd, 2022.
She awoke 12 days later, unable to see. Although optimistic she described her initial reaction as “being numb.”
“I was just so frozen,” said Nearhood. “[It was] heavy, heavy denial, [telling others], ‘I can do this.’ I often say, ‘I traded my eyes for my heart.’”
She said her way of masking her grief was to be really positive to the point a surgeon commented “she was too nice.”
Nearhood recalled an instance when she went to vote in an election, assisted by her partner, which “really touched on the edges” of the grief of losing her eyesight.
“I was not treated as a person,” said Nearhood. “You walk in and people don’t talk to me. They talk about me.
“[It] was the first thing when I walked in the door. I’m like, ‘oh, I’ll give them a hall pass.’ I always don’t know what’s going on. And then we got to the second person that was directing us to where we were going, and the same thing.
“At that point, I had just said, ‘you need to talk to me like I am a person,’ and I really reacted, and I’m like, ‘you guys have training on accessibility.’ I really overreacted.”
While still navigating through her condition, she said she took the six-week Vision Odyssey workshop offered by the Canadian National Institute for the Blind (CNIB), which Nearhood said was a “turning point.”
“It was a supported six-week program where we talked about certain topics and kind of led us through, teaching us that people weren’t doing things to us,” said Nearhood.
While she said she is still “navigating” through her condition, which she calls “low-vision,” she has a profound sense of community.
Her daily routine involves waking up at 4 a.m., followed by meditation and yoga. Three days a week will involve exercise or pilates. On Tuesdays, she attends a Northern Health meeting, where she serves on the accessibility committee.
In November, she will sit on a panel discussing the future of healthcare and artificial intelligence (AI) at the University of British Columbia, representing both rural communities and accessibility patients.
Nearhood says technology is something that has helped her adjust to her condition.
“I cannot imagine adjusting to blindness without the technology that is now available,” said Nearhood. “I was in the hospital when they announced ChatGPT. I remember listening to a podcast going, ‘hmm, that’s so interesting.’
“I have used ChatGPT, CoPilot, Claude and Llama. All those large language AI models help me do any number of things.”
She also attends CNIB peer support groups once a week, and is planning an event to promote awareness for BC Transplant, in her words to “celebrate the gift of life.”
Entitled Grinding for Gratitude, the event will involve Nearhood hiking Grouse Mountain in Vancouver with her surgical team.
“I’ve been gifted borrowed time,” said Nearhood. “That was what the big driver was that got me through the [eyesight] loss, I was not going to waste [my donor’s] life. Life has given me lots of opportunities to fall down and have hardship. I know the route to get back.”
