Seeing Double
By H Conley
Voices in order of appearance:
H Conley/HC: Host
Max Bordenca: Four-year-old with diplopia
Dr. Mario Toro: Italian Ophthalmologist who wrote a paper on eye conditions affected by Covid lockdowns
Chucky Bordenca: Max’s dad
Rachel Bordenca: Max’s mom
Sara Kurtz: Adult with the same condition as Max
H Conley [Narration]
A Note before we start, this story is meant to be listened to with headphones. A single earbud won’t work, so for the best experience, wear both.
I recently went to Queens to meet a four-and-a- half-year-old. Max is tiny with long blond hair and endless energy. She bounced around her house, showing me where everything was, introduced me to her cats, Echo and Whiskey…
[Scene in Bordenca home]
HC [scene]
Is this your room?
Max
mhmm
HC [scene]
Yeah?
HC [Narration]
…and climbed up on her bed to tell me about all her drawings on the walls.
[Scene continues]
HC [scene]
Can you tell me what you drew?
Max
I drew a cat, a hammer, SpongeBob, a thing, somebodies vehicles, somebodies things, somebody with a maize, these are my two drawings.
HC [scene]
Wow, you’re a real artist.
Max
I love painting. [sound of Max hitting paper on the wall] I did a painting and a drawing.
[music fades up]
HC [Narration]
Max has a cocktail of eye conditions: exotropia, oculomotor dysfunction, accommodative infacility, and diplopia.
To simplify, she has lazy eye. That essentially means her brain doesn’t use her eyes together. It might not sound that serious but it’s the leading cause of visual impairment in kids. It makes focusing your eyes really challenging, leads to headaches, and means you lack depth perception, which can cause a dangerous level of clumsiness.
I don’t want to get too into the weeds on all the different conditions, so I’ll try to keep this simple. Lazy eye and crossed eyes are caused by strabismus, which is where your eyes are out of alignment. If it’s one eye, it’s lazy, if it’s both, it’s crossed. An inward turn is esotropia and an outward turn is exotropia, which is what Max has. Strabismus can cause Amblyopia and Diploplia.
Amblyopia means you have one strong eye and one weak eye. Your brain opts to get the information from the strong one and ignores the other. Italian Ophthalmologist and Professor Dr. Mario Toro illustrates this by comparing eyes to cars
Dr. Mario Toro
The brain decide to choose the best eye, Ferrari, and to leave the Fiat Cinquecento. Because of course, if I am my driver, I want to go with the Ferrari or with the Porsche, and I don’t care if I have all the Fiat cinquecento.
HC [Narration]
You’ll leave that Fiat in the lot till it’s rusted and unusable while the Ferrari stays well oiled and in good condition.
Diplopia means your eyes have equal strength but your brain is struggling to line the information up. This causes double vision.
Left untreated these conditions CAN lead to partial blindness. I’m gonna try and show you what this is like, so imagine your ears are your eyes.
[Bell rings]
LAZY EYE AFFECTED NARRATION
For people with amblyopia, their brains only use information from one eye at a time. As your brain is consistently getting information from one eye over the other it ignores the second eye more and more. When you’re a young kid, your brain is developing the connections to your eyes, so if you’re consistently only seeing out of one side, the connections to the other won’t develop and you can lose the ability to use that eye altogether.
DOUBLE VISION AFFECTED NARRATION
People with diplopia have equally strong sight in both eyes but their brains struggle to add the information into a single image. They see two of everything and often can’t tell which is the real object and which is the ghost. If they concentrate really hard they might be able to line the two images up, but then as they lose focus or get tired they separate again. Your brain knows this is wrong and will try to correct the situation by ignoring one eye, which Dr. Toro says like amblyopia can lead to blindness in that eye.
[Music starts]
HC [Narration]
While the brain is still developing, these conditions are still correctable.
Dr. Mario Toro
Children have a plasticity, so the brain, after six years old, is not anymore able to-to develop all connection.
HC [Narration]
Once these connections to your eyes are fully formed, treatment can only be so effective. Once kids get to about 8 or 10 not much can be done. Covid lockdowns had major ramifications on treatment. Kids weren’t going to their ophthalmologists, they weren’t in schools where they get tested, and those in vision therapy had to stop for a long period of time.
Dr. Mario Toro
We don’t know how huge is the problem because we are just going outside from the COVID pandemic.
HC [Narration]
Max is in vision therapy, occupational therapy, and speech therapy. The pandemic put it all on hold. Her parents, Rachel and Chucky, didn’t want her to lose the progress she’d made so they tried to continue her treatment on their own. The therapy games she played at her doctor’s office aren’t sold commercially, so Chucky tried to recreate them at home.
[Scene in Bordenca home]
HC [Scene]
Lots of DIY, cool toys
Chucky
Yeah, I’m all about that.
HC [Narration]
Max has trouble focusing her eyes and needs practice with fine motor skills.
[Scene continues]
Rachel
A six-foot busy board. Yeah, so long the entire living room wall. It was like two feet high, six feet wide, had different like locks and lights and like.
[Max babbling]
Chucky
You know, that box would split box frame. It had like the numbers, the dials. So I took it apart and I put it on a board with adding locks and chain things and different things to motivate hand-eye coordination.
HC [Narration]
Some of the games are simpler like putting a pencil through holes in a wooden board that are marked with numbers and letters.
[New scene in Borddenca home]
Rachel
All right now we’re going to try this.
Max
Now?
Rachel
Now we’re going to go down here, A.
HC [Narration]
After Max pokes the pencil through each hole and pulls it out the other side, Rachel holds the board above her head and has her do it again, before holding it in her lap.
[Scene continues]
Max
5
Rachel
Good job! All Right, now over here. A
Max
A…B…C
HC [Narration]
This all helps Max focus her eyes so she puts the pencil through the real hole, and not the ghost hole her double vision might show her.
[Scene continues]
Max
One…two…three …four [pencil noises].
Max
Five, I made it!
Rachel
You made it.
HC [Narration]
Seeing her play these games hit me shockingly hard. I used to have a lazy eye, which was fixed with corrective surgery when I was three. I also have albinism, which makes me legally blind. I still struggle with a lot of the fine motor skills I saw Max practicing and it made me wonder what vision therapy could have done for me growing up.
Now that the pandemic has calmed a bit, Max is back in therapy every two weeks. Rachel told me in our first phone call this therapy isn’t cheap.
Rachel
When she was younger, it was every week. Like we’ve downgraded every other week because that’s all we can afford everything. But like at one point, it was ten grand for a year.
HC [Narration]
She and Chucky want to stick with therapy despite the cost. Their insurance would cover corrective surgery, but it doesn’t seem like the best option for Max right now.
Rachel
We were told by several doctors that she would most likely need a second surgery around the same time she starts to read and that she would need a corrective surgery as she got older and her face changed shape.
HC [Narration]
They want to wait until she learns to read to see if it’s necessary.
Rachel
Why put her through three surgeries, especially with the first one during COVID if we didn’t need to? We actually had to go through four different doctors to find somebody who did therapy
HC [Narration]
Choosing corrective surgery for your child is a big deal. It worked out great for me, but not everyone is so lucky.
HC [Narration]
Sara Kurtz has some of the same conditions as Max, exotropia and diplopia. She’s 27, a year older than me, and had two unsuccessful surgeries when she was a kid. Sara’s teachers noticed something was wrong when she talked about the two clocks or…
Sara
About my two moms and I have a mom and a dad household, so they knew something was up there too. I only remember getting double vision. I don’t remember before.
HC [Narration]
Both her parents worked in the hospital. So when they brought her in for her first surgery at 4…
Sara
I was used to visiting… I got some apple juice that was spiked. So I basically got drugged and then I woke up and I had stitches in my eyes. But I got a stuffed bear out of it.
HC [Narration]
She recovered just fine but, then the vision in the eye she’d had surgery on started to get worse.
Sara
As my left eye’s vision got worse. The right eye exotropia became more noticeable. When I was about 13. I was given glasses to try to make it better and that was something I think they did to hope I wouldn’t have to get surgery in the right eye.
HC [Narration]
She ended up needing surgery not long after she got those glasses.
HC [Interview]
When you had the second surgery, did that correct the double vision?
Sara
No, it–the cosmetic issue helped like my eyes weren’t going out as much.
HC [Narration]
To account for the doubling
Sara
I just got used to reading with one eye closed and I’m still comfortable with it. So sometimes I find myself doing that anyway. And the eye doctor kind of like not yells at me, but they’re like, Don’t do this.
HC [Narration]
She has to keep exercising her eyes to keep them working together. But, she wonders what her vision would be like now if she’d had therapy instead of surgery.
Sara
I think that it would be better personally if–now I could have gone through every visual therapy and needed the surgery anyway. I know plenty of families have gone through that. I know it doesn’t work for everybody,
it also could have just been. How it happened for me has kind of drugged with some apple juice and woke up with stitches in my eyes, but that was kind of traumatic. And I didn’t understand what was going on so the pain really got to me, I just remember it too well, especially after being 13, it kind of felt like having an eyelash woven through your eye
HC [Narration]
Sara recently got prisms in her glasses, which have made it so she can see in 3D for the first time in her life.
Sara
It was all I ever really knew. So to me, it was normal, but I was very clumsy. I tripped pretty often. I was awful in gym class
HC [Narration]
Someone would throw her a ball and…
Sara
I would think it’s coming right at me, I would think I was about to grab it all felt great and then they would bounce off my head.
HC [Narration]
She’d never known what she was missing. When she got the prisms…
Sara
it felt like a whole new sense.
HC [Narration]
When we spoke, Sara had an 8-month-old baby. Lazy eye can develop anytime between birth and about 7 so. I asked what she would do if her daughter ends up having a lazy eye. She said her first move would be to go to her own doctor who she trusts.
Sara
She’s seen the people who needed surgery, she’s seen the ones that just needed vision therapy. She understands if vision therapy doesn’t work for you. She’s really all about what works best for this individual patient.
[Music Starts]
HC [Narration]
Correcting lazy eye is clearly really complicated. There are so many different conditions that can come in all sorts of combinations. Sara and I represent 2 possible surgical outcomes for Max. Surgery could be an easy fix like it was for me, or she could have multiple unsuccessful procedures like Sara. But there’s also the possibility that therapy is effective and she never needs to go down the surgery route at all–although there is debate between optometrists and ophthalmologists about the efficacy of vision therapy in the first place. Her family’s insurance has a one size fits all model, surgery or bust. But Rachel and Chucky are committed to doing what’s best for Max, and they’ve been noticing some real improvements recently.
[music fades out]
[Scene in Bordenca home]
Rachel
Oh are we going to do a maze now, wanna try one?
Max
Yes. Wanna do this.
Rachel
You start and where do you finish?
Max
Over here?
Rachel
Great. So how do we do it?
HC [Scene]:
So have you noticed that these games have gotten easier over time?
Rachel
Oh yeah, like it’s great to see where she’s progressing with things and like these mazes are getting a lot more complicated obviously.
Max
Oh no, it’s a dead end. Oh no, it’s a dead end!
Rachel
But we can even see it in her coloring skills because like like the red scribbles is like three months ago and then this is her SpongeBob from this weekend. So you can start seeing like she knows what SpongeBob looks like or and she’s trying to make it something that was a couple months ago. So we went from like straight scribbling to like, let’s draw a person or something.
HC [Scene]
Yeah, you know, a rectangle.
Rachel
Yeah. Yeah, it’s definitely improving and it’s taking time. But even visually like before her eyes were every single picture one eye was completely off kilter.
[music fades up]
Rachel
But like while she’s concentrating right now they’re pretty straight like it’s really cool to see the difference.
Max
Aw man, I got to the wrong way. No. OK, we’ll try again.
Rachel
And she’s actually drawing like without hitting the lines now, and that’s very new for us.
Max
Yay!
Rachel
Good job you did it.
HC [Narration]
This piece was produced and edited by me, H Conley. Music for this story is by Sugartree from Blue Dot Sessions. Thank you for listening