What last sights would you savor if you were going blind? This NC woman had to decide.
If you ask Shelley Allen to explain what it’s like to see the world through her eyes right now, you’ll have to forgive her for struggling a little in giving a clear response.
After all, she spent the first 50 years of her life with normal vision.
She’s only been legally blind since June.
“I can see right down the middle right here, if I’m looking straight ahead,” says the mother of four and grandmother of two, her hand over her right eye as she sits next to her husband, Scott, in their Mint Hill living room.
“I know he’s over here,” she continues, gesturing to a visitor sitting off slightly to the left, “but I can’t really make him out.” Then, to another visitor directly in front of her: “The top of your head (looks like) clouds. Same thing with all the —” and here her description starts to drift out of focus “— it’s — just depends which direction I’m looking in.”
Shelley uncovers her eye. “I can see my hands, but they’re going in-and-out visible. Does that make sense?”
She then puts a hand over her left eye. “On this one — this one I see nothing,” she says. “Everything’s dark, dim. ... I can make out shapes. ... Shapes, forms, but I can’t see bodies, heads.”
The relative swiftness and severity of her vision loss — she lost the sight in her right eye over the course of two weeks last September and then most of that in her left between late spring and mid-summer of this year — has confounded her, her family, and medical professionals.
It’s negatively impacted their finances, since she can no longer work either of her two jobs and as medical bills have piled up; it’s robbed her of the immense enjoyment she got out of seeing the beach, or the mountains, or taking in her youngest son’s ballgames; it’s rendered some of the simplest of household tasks next to impossible.
And in the darkest moments, it made Shelley wonder if life was worth living anymore.
Her deepest, darkest thoughts
Shelley sniffled while sifting through a box of old family photographs on Father’s Day, figuring that soon she would only be able to see those images in her mind.
During a midsummer trip to the beach, she choked up while staring out at what she feared might be her last look at the ocean.
She fought back tears at one of her son’s baseball games not long ago, because she couldn’t tell where he was on the field, and wound up asking Scott to take her home so she wouldn’t have to suffer through it anymore.
Her lowest point, however, came before any of those things, not too long after that second eye started giving her problems. Shelley’s oldest child — Kayla Yarbrough, 32, who until recently had been living in Albemarle with her two young boys — recalls her mom’s rock-bottom matter-of-factly:
“She was like, ‘Just poison me if I ever go blind. I don’t wanna live like that.’”
Shelley does remember saying that to her daughter and sons. And saying this, to her sisters: “‘I’d rather be paralyzed in a wheelchair than be blind. Because at least I’d know what’s going on, I could still see everything, or if somebody’s trying to rob me, or somebody’s breaking in.’”
And this, to her husband: “‘I wish if it was gonna go, it’d just go completely. ... If I was gonna be blind, yes, I’d rather been born that way. Then I would have learned how to deal with it, and not know what I’m missing out on.’”
What depressed her most was the thought of not being able to bear actual witness to milestones in the lives of her children and grandchildren — graduations, weddings, births — as well as the notion that, from here on out, she’ll never know what anyone who enters their lives looks like.
She feared her new disability would make her feel, in a general sense, less attached to her family.
But to her surprise, the opposite has turned out to be true.
First one eye, then the other
When her first eye went late last summer, it was distressing, of course. Especially since it happened seemingly out of the blue, and because doctors couldn’t pin down a cause.
One ophthalmologist thought Shelley had sinusitis, which in severe cases can cause blindness that can be permanent, but that theory was discarded. Another specialist suspected it might be multiple sclerosis, the symptoms of which can include vision problems that can eventually subside, but a third doctor ruled out MS.
The only conclusion they could seem to agree on was that the vision in her right eye was not going to come back.
Although it took awhile, once her initial anxiety subsided, she came to see that it wasn’t anywhere near the end of the world. After all, she could still drive without difficulty, could still cook meals and read text messages on her phone comfortably, could still work her one job helping in an office at a subcontracting company and her other in a Bank of America Stadium suite during Carolina Panthers games.
But six months into her different-but-not-debilitating new normal, her left eye started to feel funny.
The initial warning signs, Shelley remembers, materialized on the last Monday in May. That morning, her sleep was interrupted around 3 a.m. because she needed to unlock the front door for her youngest son, who was returning late from a trip; later, while at work, she noticed issues focusing with her left eye. She chalked them up to lack of sleep.
The next day, though, things got slightly worse.
And — probably because she had such a fresh and frightening frame of reference for what might be to come — Shelley was overcome by a tidal wave of panic.
‘That was a difficult thing to hear’
Within a matter of days, she was in the office of Charlotte Eye Ear Nose & Throat Associates neuro ophthalmologist Brian White, who would deduce that she might be suffering from a rare condition that is a result of insufficient blood flow to the optic nerve.
He told her that if it was this condition, he had no way to stop what was happening. At the same time, he was open to the slight possibility that it might not be, so he recommended she immediately start a treatment regimen to see whether it helped preserve at least some of her vision.
But despite exploring multiple options for treatment, the vision in her left eye continued to worsen — albeit more slowly.
Finally, once he’d exhausted the possibilities, White remembers telling Shelley: “‘I think at this point, we need to then step back and say, what more do we have to gain from further treatment that likely doesn’t have a benefit and could only cause you harm?’ And I think that was a difficult thing to hear. They were partially ready to accept that, but not fully.”
Scott, in particular, wasn’t ready to give up yet, and he convinced Shelley to seek a second opinion at Duke University Hospital in Durham.
There, doctors surmised that it was possible that the vision loss was triggered by blood vessel dysfunction caused by COVID, which she tested positive for in August 2021 — five days after she had a major surgery.
But they also would come to the same conclusion as White: Although it is far more common in men, far more common in older individuals, and often less severe, Shelley did indeed appear to be dealing with non-arteritic anterior ischemic optic neuropathy (also called NAION).
Physically, it was painless. Emotionally, it was excruciating.
How to visualize what it’s like
Here’s how White would explain what it’s like to see the world through Shelley’s eyes right now:
“We can think of it as a visual field,” says the neuro ophthalmologist. “Imagine that each eye has a circle — to make it simply understood — a circle of field. So you cover your left eye, you look out of the right, and you’ve got a 360-degree area that you can see. The same in the left.
“In her right eye, she doesn’t have much functional vision. She’s got this area up and out to the right, where she can kind of detect a little bit more motion and maybe some very, very large print. But just because she can do that for me in the exam room doesn’t mean that it’s very functional.
“The left, based off of her last visual field, you could estimate somewhere between 10 to 20% of her field is present. And it’s not like that is crystal-clear, allowing her for perfect vision in that area. It’s reduced clarity of vision as well as loss of field. It’s kind of like someone’s taken a tube and asked her to look through that narrow straw. Then on top of that, that remaining straw is hazy and blurry.”
White says he does not expect her vision to improve. He also says reactions like the ones Shelley has articulated are not at all uncommon.
“It really is like suffering the loss of a loved one,” he says, “because you’re losing something so precious to you, that spills into every other aspect of life. That every other aspect of life is dependent upon. And as a result, you go through ... those five stages of grief.”
He empathizes, he says, with what he sees as a “fellow human just dealing with something that’s really, really difficult to process.”
Carrie Duston, one of Shelley’s two older sisters, recalls the moment when White told them that he’d tried everything, but that there was nothing else he could do:
“We thought he was gonna cry.”
Learning to look on the bright side
Shelley is still getting used to all this.
Although she’s lived in their 1,300-square-foot house for 32 years and knows every crevice of it, that doesn’t make it any easier for her to pick the specific drink she wants out of the refrigerator without assistance. She’s not allowed around the stove, and when she tries to help with dishes or clean the floors, she inevitably misses spots. She can’t go out to get the mail, much less jump in the car and run an errand on her own.
Scott, who likes to light candles around the house, is hesitant to do so now because Shelley recently set down a bag of items she’d bought from Target on an open flame that they didn’t notice until she’d burned a hole in the bag and a new shirt.
She misses work, and her work friends, and her customers; she also misses the paycheck. Meanwhile, Scott — a self-employed plumber by trade — has had to take time off due to knee problems. Shelley is drawing some short-term disability, but that could run out before she’s approved for Social Security Disability Insurance.
Soon, she hopes to enroll in orientation and mobility classes. Eventually, she may be paired with a guide dog.
But bigger than any of that is this: Her daughter Kayla, with whom Shelley has had a strained relationship in the past, is moving back to the tiny house she grew up in with her own two boys to help out with her mom as she adjusts to being blind.
Kayla says she would still be living in Albemarle if none of this had happened.
“I’ve been through so much,” says Kayla, revealing a yearslong struggle with opioid addiction and that the father of her children died of an overdose. “For so many years, I was just kind of in limbo in the world. You know, didn’t really know what to do other than take care of my kids. This gives me a purpose. ...
“My mom and I, we’ve had a pretty crazy past. But I think this is helping us — we’re a lot closer now. We get along a lot better now. We spend time together now. Which we didn’t before. So that’s a plus.”
Another plus? Shelley, these days, is spending more time looking at the bright side than the dark side.
“I mean, I still have my moments,” she says. “Every day’ll be a challenge, but it’ll be a challenge I’ll figure out how to get through. ‘Cause I’ve always had challenges and obstacles, and I always got through them — and I’ll get through this, is what I tell myself.”
“We just try to look at it that she’s had 50 years to see,” her sister Carrie says.
“Right, that’s the way I look at it,” Scott chimes in.
Shelley smiles. “I did get to see the beach, and mountains, and go on a cruise and out of the country, and watch my kids grow up.” Her voice shakes a little bit. Her sister and her husband nod, silently, as a couple seconds of silence pass.
Then: “The good thing,” Shelley says, “is I won’t see my face aging.”
She closes her eyes and smiles again, as the living room fills with the sound of her family’s laughter.
A GoFundMe has been set up to help Shelley’s family. For more information, or to donate: https://bit.ly/3dEA1hb.
This story was originally published August 19, 2022 at 6:00 AM.
