What it feels like: Having glaucoma since childhood

'It was a growth process. I think part of it was accepting this is who I am, I can't change it.'

Emma Jones 12 minute read July 27, 2021
John Maloney

John Maloney says recent technology has made things like completing a Master's degree much, much easier. Supplied

John Maloney was only 18 months old when he developed cataracts. A surgery to have them removed resulted in the loss of both lenses in his eyes. When he was seven, doctors also discovered that the glaucoma that had been in his left eye was now affecting his right.

Glaucoma is a condition where the optic nerve, located at the back of the eyeball, is slowly degraded, leading to vision impairment and, in some cases, blindness. There is no cure for Glaucoma, according to the U.S. National Eye Institute, but modern treatments can slow or completely stop the progression of the disease.

John sat down with Healthing.ca to talk about coming to terms with his disability, living with visual impairment, and how he managed to do almost a complete Master’s degree on his phone.

Content Warning: Contains conversations about neglected children and a suicide attempt.

This interview has been edited for length and clarity.

Do you have full or partial sight loss?
I’m pretty much blind. I lost vision in my left eye when I was a kid; it’s half a real eye and half a fake eye. My right eye maybe has two or three per cent vision. I have a little bit of perception, but I really don’t see things properly anymore.

What led to the loss of your sight?
At about 18 months old, way back in the early 70s, I had cataracts. They took out both of my lenses in my eyes. I can’t get implants because there’s some scar tissue where the lens should go and my eyes are shaped weirdly.

I got hit in the left eye when I was two and had a bunch of surgeries. Then when I was six, lucky enough for me, I got hit in the eye again [which resulted in] retinal detachment – that’s when they took out half the eye. I already had glaucoma in that eye, and when I was seven, they discovered I had glaucoma in my right eye, too. They said I was supposed to lose my sight by the time I was 16, but I’m still barely hanging on and I’m almost 50 now. Good odds!

In 1999 or 2000 I started seeing with a red tinge; I haven’t seen white for about 22 years. But the interesting thing that happened is after a couple of years, the red tinge turned into a green tinge, then a blue tinge. It’s kind of like a really wicked light show going on in my brain sometimes. One of my co-workers told me it sounds better than a drug trip.

Was the glaucoma connected to the eye injuries?
No, the glaucoma wasn’t connected to the accidents; I think it has hereditary links. My mom had cataracts, my grandma had cataracts. My sister and I both have glaucoma.

Glaucoma can cause a blockage in the tear ducts that causes the eye to swell up and then crushes the optic nerve. I’m on medication right now, so the pressures is down.

Does the pressure in your eyes hurt? Can you feel it?
I don’t. It was weird, because when I was in high school, the pressure was crazy high. The doctors were surprised I wasn’t doubling over in pain, but I didn’t feel anything. That’s when I had trabeculectomy surgery, basically where they cut a three-flap hole in the top of your eye to allow it to drain.

A couple of years ago when I was working on my Master’s, my vision was really blurry, so the doctor did another pressure check and [the pressure was really high again]. There were also cysts forming on the eyeball itself. He put me under the knife and I got local anaesthetics, [but I was still awake] so I got to experience a needle being put into my eye. And then he zapped [the cysts] off with lasers. I could hear the lasers and I could smell it and stuff.

It’s a weird feeling, to have your eye open. It’s an experience. But with that and changing medication, the pressure went down, big time. That really, really helps.

What was it like being a kid with glaucoma?
It was a struggle. I grew up in the ’70s and ’80s and [was always] trying to find my identify, trying to find that sense of belonging. I was lucky enough to have a couple good friends. I went to a mainstream school, which I was quite happy at, but the teachers were like: You’re the first person that we’ve had with a vision problem. I had some good teachers growing up and I had some not so good teachers growing up; the experience was mixed. Especially when you get into gym stuff — because I couldn’t see out of the one eye, there was no depth perception. If I could see the ball coming towards me, it would be really hard to judge how far it was.

Socially, it was a struggle. School-wise, academically, too. If I were to grow up now, I think I would do way better in school because the technology is advanced so much. When I was doing my master’s a few years ago, the technology was phenomenal — I did about 80 per cent of my master’s on my phone. The only thing I couldn’t do on my phone was type out my papers. Whatever else — reading, watching videos, connecting with people to do assignments — [was all on my phone]. Ten, fifteen years ago, the technology just wasn’t there.

What kind of technology did you use for school?
There’s one program called Voice Dream — it’s a PDF reader and it’s phenomenal because it sounds very human. What I really like about it is it has a great word search feature. Kindle Reader is also [great], because you just turn on your screen and it’ll read the book for you.

There’s another awesome resource called SeeingAI by Microsoft. It’s a free program for your smartphone that will read short text and scan documents. It’ll actually recognize people’s faces — you can take a picture and save the person’s name with it, and it will describe the person when you’re taking the picture, like “43-year-old male with brown hair and glasses.”

Another program I’ve used is called Be My Eyes. It’s a free service that you can call in for support; a volunteer will actually use your camera to see. A couple of times I’ve been wandering in a neighbourhood I know really well, but I feel lost, so I call them and they look through my camera and say ‘Turn the camera left’ or ‘Turn the camera right’ so they could see and help.

How do you navigate in your daily life? If you’re going to work, for example, do you have a route mapped out?
I use a cane. Before I started, I was really anxious, because for [a lot] of my life I just wanted to fit into the sighted world. But I had a cane from high school, from when I had my surgery and couldn’t see for a little while, so I pulled it out and started using it, and I haven’t stopped.

Bus drivers are really helpful. I ask them to remind me when we get close. [My local] transit is experimenting with a verbal GPS that the bus driver can turn on, so everybody on the bus can hear where they are, which helps everybody. And there’s another great app, Seeing Eye GPS, that you can point around, it will tell you things like ‘Tim Hortons at 11 o’clock.’ It’s very accurate. I can tell it where I want to go and it’ll tell me how to get there. It’ll tell you, okay, in 10 meters you’re going to hit a curb.

The technology is phenomenal. I don’t know if I can say that enough.

How did you used to explore a new area, before this technology?
I’m fine asking people for directions. Even now, sometimes I still have to. One time, I had to go for an eye appointment, but they changed the bus route: the bus stopped in the back of the hospital. I just went up to somebody and asked if they could help me find the main entrance. Then I was basically in a relay race, because they were handing me off to different people. Like, someone would say, ‘I can help you to this point,’ and then somebody else walked me to another point. It was one of my funniest experiences.

A lot of it was being comfortable with my own disability. I struggled with that a lot of my life. I find when I’m not comfortable with it, other people around me are uncomfortable too, because they can really read off you.

I used to work with disadvantaged children, kids who had been abused, neglected. Kids don’t have a problem asking questions. But adults tend to be a little more uncomfortable with that. I would always invite people to ask — if you don’t ask, you don’t understand. I think that a lot of people have anxiety around people with disabilities in general. With sight loss, they just don’t know what questions to ask — they don’t want to offend people, but their heart is genuine in wanting to know. I say take that step and ask, because a lot of people with sight loss are more than happy to talk about it, versus having people make assumptions about them.

It sounds like you’ve done a lot of work to get comfortable in your own body and in your own sight. Was that just a growth process, or were there specific things you did to make that happen?
It was a growth process. I think part of it was accepting this is who I am, I can’t change it. Part of it was to let stuff go from the past. Part of it too is understanding that I can’t really control what other people are going to do or how they’re going to respond to me. All I can do is influence others with the information I share.

I worked with clients, and I would ask them to tell me some of the most difficult parts of themselves — what gets them angry, what’s going through their head. And I thought, Well, I’ve got to be able to give as well as to receive. That was kind of my philosophy.

After school I got a child and youth care diploma, and I think that started me on that journey of understanding it’s okay to be who I am. We all have our struggles, we all have our differences, and it’s about people understanding those challenges. And along with our challenges, we also bring strengths. My memory is solid, my writing and editing are good. At work it was like: You go take the kids out to the park and I’ll do the reports for you. Or, if you did the grocery shopping, I’ll sit here and do the logs for the day. [My journey has] really helped me gain skills. Like my memory skills — it’s not photographic, but I would say it’s probably higher than average. I’m very adaptable.

I’m down on myself sometimes, but it doesn’t take over. If you allow ourselves to experience those emotions to the point where they start to take over, then you really need to find a way to work through them. But there’s nothing wrong with feeling sad for a few hours. We’re all human. It’s like Indiana Jones trying to run from that rock: eventually it would have got him. You have to stay and deal with it.

What drew you to work with disadvantaged children?
When I was when I was younger, in high school, I had a lot of a lot of struggles and difficulties. I actually tried committing suicide just because the pressure, the frustration, the vision problems were pretty intense for me. After I went back to school and talked to the counsellors there, they got me hooked up into the peer support group. It was awesome because you’re learning to help yourself while you’re learning to help others.

I went into child and youth care, and my first-year field placement was at my high school, running the peer support group, running events, stuff like that. My second-year field placement was with Catholic social services, and I worked there for 22 and a half years. But it got to the point in 2008 where I couldn’t work with the clients anymore, because my vision just got to the point where it was unsafe. To this day, if I could do the frontline work, I’d be there. But it was not about me, it’s about the client. The organization found a place for me at the office, and I was there for five, six years. But I missed working with clients.

I’d like to give a shout out to the Canadian National Institute for the Blind. I’ve been volunteering since last September with the men’s group and it gave me a sense of purpose again. It’s been just as good for me as it has been for them, I think.

In your career did you ever have an experience where somebody misunderstood your abilities because you were visually impaired?
Lots, yeah, especially the people I didn’t interact with on a regular basis. For example, I don’t take notes, because if I take notes, I won’t be listening to you. That’s created misunderstandings. Or people might not think I’m listening to them when my eye moves around.

When I was first in the office, after a year, my boss said, ‘Wow, John, I thought I’d have to hold your hand a lot more in your job.’ I was offended, but happy at the same time. I just said I appreciated the feedback, but it made me wonder how other people think of me. But, again, I can’t control what other people think. I can just do a good job and work hard and people will take me as they take me.

I’m a pretty good advocate for myself, but I think that sometimes people would rather you do what they tell you to do versus you advocating for yourself. I struggle in situations where people don’t want to listen, and I tend to be a little more aggressive, which doesn’t work well because then people can just throw it out: ‘Oh, he’s just defensive,’ versus just trying to get you to understand.

I can’t make people understand. I can only share with them what I know.

That takes a lot of emotional maturity.
I appreciate that. It’s tough to come to, but you get there eventually. Otherwise, you’re just going to keep hitting your head against a brick wall. Some people just grew up in a particular way as well, so it’s hard to judge those people. It’s a whole empathy thing.

John Maloney is the co-author of “How to Be a Leader.”

Individuals looking for support or to learn more about glaucoma and other experiences of visual impairments can check out the Canadian National Institute for the Blind, the Canadian Federation of the Blind and the Canadian Council of the Blind.

If you are struggling with mental health or thoughts about suicide, the Canada Suicide Prevention Service is available at 1-833-456-4566 or 45645 by text.

emjones@postmedia.com@jonesyjourn