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What It’s Like to Slowly Go Blind

‘Your world crashes a little bit when you find out you’re going to slowly lose your vision: From worrying about your career to wondering whether you’ll see your child’

Every person has a lowest point: A moment in their life where, whatever the cause, it seems impossible that things could get any worse. These intensely personal experiences come in many different forms, but they all share one thing in common: The question of, how will I ever dig my way out? In this series, we’ll be talking to the people who somehow managed to pull themselves from the deepest depths and once again find steady ground.

Name: Mike O’Brien
Age: 34
City: Boston
Occupation: Co-founder of a footwear company
Rock-Bottom Moment: Gradually losing his vision to Retinitis Pigmentosa, a genetic eye disorder  

The Diagnosis

I was diagnosed about a year and a half ago with RP, or Retinitis Pigmentosa. It’s a genetic disorder, so it’s something I got from my parents, but it’s a recessive trait, so it’s something I didn’t know I had.

I don’t have complete vision loss, although it can eventually close in completely. Right now I have a visual field of about 80 degrees. My central vision is still relatively strong — I have 20/40 vision with glasses, which isn’t bad. I can generally function on a computer and this and that. But an 80-degree field of vision is pretty much half of a healthy eye — most people have about a 160-degree field of vision.

It was my wife who pushed me to get my vision checked. We had to deal with this about four months into our marriage. I was naïve to what was happening to me: I was an athlete growing up — I played college sports, I was a football player. Which, in hindsight, made sense that I didn’t notice it because when you’re wearing a football helmet, your peripherals are blocked anyway.

My wife and I would go play tennis, and I’d either have difficulty tracking the ball, or she’d hit a high lob shot and it’d go into the sun and I’d lose it. I’d make excuses, like, “Oh, I just lost it in the sun,” but they were more than just your normal issues. It was little everyday tasks, where we’d be out to dinner and it’d be hard for me to read the menu. It was things like that, that made her say, “Mike, you really need to get this checked out.”

The Family History

My grandfather had RP as well — he was legally blind by 29. So there’s a family history of it, but I’d also gone to ophthalmologists, I’d always worn glasses and contacts. I’ve always thought that was the root of these issues, not that I was going blind, necessarily. 

If you and I were talking face-to-face, you’d never know that I had visual issues, because I have central vision and I’m able to see the people I’m talking with. There are times I think back to, pre-diagnosis, and things I didn’t realize I was doing that I may have been doing because of what was going on. My friends would always tell me I was a great listener, and thoughtful — especially in a crowd, it was like I was the only one they were talking to. But my eye wouldn’t wander because I wouldn’t necessarily see other people.

I went through three different ophthalmologists, going up the ladder. I met with a general ophthalmologist who said, “You should go see a retina specialist. I think you’re showing signs of RP.” That was a tough pill to swallow. I then met with a retina specialist. We did a half day of imaging and dilating pupils, and he said, “Yeah, you’re showing early signs of RP. You should go to Mass. Eye and Ear.” I met with the head of their inherited retinal degenerations department and went through genetic testing and he found the genetic marker. My grandfather was treated at Mass. Eye and Ear, and they randomly still had his sample, so they were able to compare it back to his and find the genetic markers there.

The Impact

When I first got the news, yeah, your whole world crashes a little bit. Things that you think are part of your future, you may have to reevaluate. So there’s a lot of questioning that.

It’s just a huge gut punch. Honestly, it’s something I’m still dealing with today, it’s still not something I think I’ve fully wrapped my head around. There’s obviously a lot of tears, a lot of questioning: Why is this happening to me? What do I do? How do I handle these things? It’s still very raw. I actually just had my year and a half follow-up about three weeks ago, and they found my central vision is still relatively stable, but there was some degradation on my peripherals. That’s the general progression of what’s happening. So it’s good that my central vision is still where it’s at — I can work on a computer or watch TV. The one thing that did happen this last time around was that I can no longer drive. That was the first thing that wasn’t really my choice to give up.

In hindsight I feel a little naïve and stupid for thinking there wasn’t anything greater going on: I never had 20/20 vision my entire life. But relative to what I know, vision is how you perceive it. And I never perceived myself as having “poor vision,” for lack of a better word.

There are so many things and questions that are unknown with this. RP only affects a few hundred thousand people in the U.S., so as far as diseases or disorders go, it’s exceedingly rare, and there are a hundred different causes of it. I’ve been fortunate to have gotten some of the best care in the world around this, but I’ve also found out that there’s a chance I may be one of 50 people in the world with the exact genetic defects that I have. So coming around to treatment, there’s no real economic value in someone trying to cure this.

The good in it, if you can think about it, is for a long time I’ve always sort of wondered what was wrong with my vision. So getting answers can give you some sort of solace. There’s obviously a notion of “ignorance is bliss” for a long time, too. I wrestle with the idea of, should I have known this sooner? Should I have tried to push this sooner? Yet at the same time, would I be the person I am today if I’d known this? Because it’s something that can mess with the core of who you are.

The Struggle to Stay Positive

Vision loss is a mental struggle, because there are constant daily reminders of what’s happening. For example, I was washing dishes this morning and I broke a wine glass. It was just something that I didn’t necessarily see out of the corner of my eye, because for lack of a better word, I don’t have a corner of my eye! Or if I trip on the sidewalk, or if I go outside and it’s a little bright and the sun hits me and I just don’t see where I’m going.

You have to take things slower. I have to constantly scan areas with my central vision because I don’t have the peripheral vision that you can take for granted. So there’s that constant tug of both knowing what’s going on and struggling with that, while also just trying not to think about these things and be normal and calm as I go about my everyday life and keep working toward things. It’s the future that I sometimes worry about, and it’s hard to come to grips with. For example, there’s the aspects of — and I’ve talked with my wife about this — when my daughter is at a sleepover and gets scared in the middle of the night, I’m not going to be able to pick her up. There’s also things like, will I be able to see her hopefully for some years to come? 

But there’s hope around some potential treatments, too, so there are things to hold onto. It’s a constant mental game to try and not let yourself be down, because it’s very easy to dig yourself into this hole and think of all the negatives that could happen — you have to stay positive, because there’s no other way to live. Being negative and being sour about what’s going on is just not worth it.

One of the things I’ve done over the last year and a half is try and learn as much as I can about what’s going on, both with myself and with the research around potential treatment options. One of the things people don’t realize is your eye is like a supercomputer, and the peripheral vision is more of a signaling mechanism to tell you to look in that direction. When you’re actually looking at something, watching TV or working on a computer, it’s just a small part of your central vision that’s actually doing the seeing. So that part of my vision I still have. It’s when I’m at the grocery store with my wife, and she’s off in the distance waving at me: Until she gets into my little cone of vision, I don’t see her. I joke that I leave a lot of people hanging because when they go for a high-five, I don’t always see it.

Vision loss does affect what you want to get out of life. My wife’s mentality now is that we need to prioritize travel and seeing the world. But the specific thing I worry about, honestly, is my career. That’s the biggest question I’m struggling with. Granted, there are some amazing things happening with technology, but at the same time, I’m wondering where I can add value where I may not necessarily need to rely 100 percent on my sight?

The Future

Right now my wife and I are helping the Foundation Fighting Blindness as part of a strategic council to provide more engagement for people in my age group who have visual issues. It’s easy to get closed off when you’re in your 20s and 30s and have visual issues — you throw on glasses and you’re like, “Okay, I have glasses, no big deal.” The biggest barrier for finding a way of treating this is, unfortunately, money. Research efforts are happening — there is a theoretical treatment that could help a lot of people. There are amazing things going on, so it’s crucial that the scientists working on this have the necessary funding.

I want to be an open book about this. I’ve told all of my friends, because at some point we are going to start to fundraise for FFB and really work this — and be as much a part of the change as we can be to help combat this.