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Living fearlessly with blindness

Americans rank blindness among their top four fears, according to a recent survey. Four interviews show it’s not as scary as it sounds.

Charles Goumas in front of a roller coaster

Cancer. Alzheimer’s disease. HIV/AIDS. The life-altering potential of these conditions – including humans’ inability to completely control them – can send shivers down anyone’s spine. But there’s something else all three have in common. A recent Zogby poll, developed by the Association for Research in Vision and Ophthalmology, ranked blindness alongside this trio as the top four “worst things that could happen to you.”

Not everyone submits to this declaration of disaster. What follows are the words of four individuals living with blindness – people who had no choice but to confront that fear head-on. Each story is different: some were born with blindness, whereas others acquired it. One has additional disabilities. All experience their share of good days and bad.

And each one of them is a living example of the power of perspective.

Charles Goumas ’64
Roller coaster enthusiast

Charles Goumas '64

Photo credit: Anna Miller. Image of Cyclone coaster by Nick DeWolf.

When I was 4 or 5 years old, my sister and I would go to Revere Beach (Massachusetts) to watch the rollercoaster. At one point I expressed some interest in maybe riding it. My sister would say, “Oh no, you never want to go on a thing like that – they’re awfully dangerous.”

When the day came when I was to ride this crazy thing, I remember how afraid I was. I got a terrible panic attack as we were going up that first hill. You could hear the chain make that metallic sound, and by the time we got to the top I thought I was finished. It tilted forward and started to drop and for whatever reason I thought, “Gee, this isn’t bad.” By the time it started shooting up the second hill I thought, “You know, I think I might want to go on this again.” It was that first ride that completely convinced me. I was hooked. I don’t think I had ever experienced anything as much fun as that first ride.

Since that day I kind of made a hobby out of it. In my lifetime I decided I would ride as many different rollercoasters as I could. To date I’ve ridden some 78 different rollercoasters.

I’ve been blind all my life. I was born blind. A lot of people have these really strange misconceptions about blindness. They think if you’re blind, life might as well be over. I try to tell people that I’m normal in every other way; the only difference is that you can see and I can’t, so I have to figure out other ways of doing things that you normally would use vision for.

I was scared out of mind to go on my first rollercoaster. Then I realized, well, I’ll never really know what it’s like until I somehow overcome the fear and do it. If you’ve never tried something you’ll never know what you might be missing. One ought to always be willing to explore.

Kate Katulak
Math and technology teacher at Perkins School for the Blind

Kate Katulak

Photo credit: Anna Miller

When I was in high school, I caught a virus that attacks the nervous system. I went from having perfect vision to being totally blind in a matter of days. It was a frightening, traumatic experience – I had to relearn how to smell, how to taste, how to walk.

Other than a few years where I was really struggling, I’ve been happy. It sounds so strange, but I think it’s like anything in life – things come at you that you’re not expecting. You just have to roll with it.

I teach math at Perkins, which encompasses a lot. It’s functional skills like money management and timekeeping all the way up through algebra and statistics. I also teach some assistive technology and a study skills class as well. I wear a lot of different hats.

The most rewarding thing about being a teacher is the ability I have to connect with students and their disability. I see myself in some of the struggles they have that I’ve now overcome. I’m able to say, “It sucks, there’s no question about that, but you’re going to get through it.” It’s been as fulfilling as I hoped it would be.

When I moved to Boston I found an organization that connected me with a guide runner. He met me at my house and we went for a run. A half mile in, I fell in love with running. It wasn’t just an activity; it became part of who I am. Now I run four or five times a week and cross-train on the other days. I did my first half marathon in December and my first marathon is May 3.

When it comes to blindness, people need to realize that yes, it’s hard. Any type of impairment you have is hard. But with the right attitude and the right effort you can be totally independent and totally content with life. It is challenging being blind, but it is a lot less challenging than a lot of other things. It’s not only doable, it’s doable with happiness.

Rachel Labella ’12
Perkins graduate, volunteer, Taylor Swift fan

Rachel Labella '12

Photo credit: Anna Miller

Rachel Labella lives in a group home with three roommates and attends a day program operated by Horace Mann Educational Associates (HMEA), an organization that serves people with developmental disabilities.

I am 24 years old. I have some challenges, like a vision impairment called retinitis pigmentosa. I have pretty good central vision, but to the sides and looking down, I can’t really see as well. I have poor depth perception and poor night vision. I have to read and do things with glasses. I am taking a braille class in case I go blind.

I came here in 2012. It’s called a group home. I like all my roommates, but my best friend is Jessica. We’re kind of close in age. It’s cool that I get to be friends with someone in a wheelchair. We have 24-hour staff. They come in and hang out with us and help. We all do chores like vacuuming and dusting the living room, cleaning the bathrooms and sweeping the floor. I don’t mind doing chores. I like keeping busy.

I like going to my day program. I fill candy trays for Green Mountain Chocolate. Yes, we get paid. I save some of it. Some of the money, we order out lunch on Friday. I was a volunteer with Meals on Wheels. We would pick up meals at the Senior Center and go to apartment houses where the seniors were. I walked up to the door and delivered the meal. I like helping out and going around the community.

I like living here. I love to read and go on the computer. I love Taylor Swift. I really like her song “Shake It Off.” Of course, I know how to shower and dress myself, and I am learning how to do my diabetes. Now that I am a Type I diabetic, I have learned to test my own blood sugar levels by pricking my fingers and giving myself insulin shots. I don’t like needles, but I can do it. People can learn how to do things.

Jerry Berrier
Lifelong birder
Jerry Berrier

Photo credit: Anna Miller

I’ve been blind since birth due to something called retinopathy of prematurity. I had light perception until I was a teen, and then that went away. I never saw colors or shapes.

I was in a biology class in college and the instructor didn’t know what to do with me when it came time for dissecting frogs. So he let me borrow a record album of Cornell bird recordings and he said, “At the end of the semester you and I are going to go for a walk in the woods and your grade will be based on your ability to identify what we hear.” I remember saying to one of my friends, “Oh man, I’ll never be able to do this. What do I know from a robin, a cardinal, whatever?” But I got hooked and by the end of that semester I had learned about 10 or 15 of the more common bird calls. One thing led to another and now birding is one of my primary passions.

I’m into it no matter where I go. If I’m on vacation, I’ll usually try to do at least one birding event. You’re always likely to find good birds when you’re at the edge of two different habitats, like when a meadow abuts a forest. My favorite places are wooded areas with easy paths and not too many rocks.

I like the pretty sounds birds make, plain and simple. But birding has also given me common ground for conversation with other people who are interested in birds. It’s given me a connection to nature, because I believe that those of us who have never been able to see are robbed of some of the beauty that’s readily available to people who can see it. When I’m inside I don’t have the ability to look out the window like you do. But sometimes I hear birds through the window. That connection to nature really is one of the greatest gifts that has ever been given to me.

A clear picture of a dog next to a blurry picture of the same dog.

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A young man skydiving with his instructor

Taking the leap

Headshot of Ashley Purdy

At Perkins, Ashley Purdy found her way out of the darkness and into the light