What Is It Like To Be Deafblind?

What Is It Like To Be Deafblind?
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Answer by Cristina Hartmann, Writer

I'll tell you about what it's like to lose your sight as a deaf person.

At the beginning ...

It was Halloween in 1990 when my mother noticed that I was stumbling when we were going trick-and-treating. Ever the perceptive one, she took me to several doctors, and wanted to see if it was Usher's syndrome.

By six, I was a fully integrated member of the local Deaf community. I used American Sign Language (ASL) as my main mode of communication and went to the deaf program forty five minutes away from my house. Most Deaf people know what Usher's is. It's the leading cause of deafblindness and most Usher's folks are deaf before they lose their sight.

The only thing I remember about the diagnosis was being in a dark room and having wired contact lenses shoved into my eyes. I was terrified because it was pitch black and I couldn't talk to my mother or anyone, not knowing tactile sign language. My mother tells me that the technician was sweat-soaked by the time he managed to get the contacts in (which, FYI, hurt).

The test results were confirmed. I had Usher's type I: profound deafness from birth and retinitis pigmentosa (RP). RP initially presents with night blindness, then develops into peripheral vision loss before moving into the central vision. It doesn't usually cause complete blindness, but it can.

They moved up my cochlear implant surgery to January, 1991, instead of a year later, due to the diagnosis.

My parents told me immediately. I don't remember them telling me, but I remember always knowing that I'd go blind someday. I didn't really feel like it was real. I thought it'd happen when I was really old, like forty. As children tend to do, I thought forty was ancient at that time. It was inconsequential to my life at that time.

I grew up like most other kids, except I was deaf. I skied. I was a member of my Little League team (to which I contributed a home run out of the other team's ineptitude). I was a happy child. I had a lot of friends and loved reading books, especially Star Wars books.

But blindness was always looming over my head. My family never talked about it much, but I remember asking my mother once, "Why did God do this to me?" before she turned off the lights. I can only imagine how she felt at that moment, since that was an unfair question. She paused, and then said, "Because he knew you'd be strong enough." I went to sleep, thinking what a crappy reason that was.

By sixteen, my lower field was gone and my night vision was crap. I compensated by constantly scanning around me, checking my blind spots, and following people instead of walking side by side with them.

I really wanted to drive, living in suburban-rural upstate New York. My mom begged me not to, but I fought long and hard to get my learner's permit. I told myself that I still had enough vision to be just fine. Through pure teenage willfulness, I forced my mother and father to teach me how to drive. After the fifth lesson, my hands were shaking at the steering wheel. Even though I had driven a few miles around my town, I was exhausted from constantly checking to see if a kid or a car had crossed my path. I knew I couldn't bear the moral responsibility if I ever hurt anyone, so I stopped asking for driving lessons. Thankfully, my parents never said anything.

When I went to college, I was determined to make the best of it. I had this strange sense that I would never have fun again. I wouldn't get another opportunity to party. Party I did. At one point, I was drinking every night of the week. Since I couldn't hear well in noisy environments, or see well enough to dance, I became a beer pong champion. The tables were always fairly well-lit and conversations weren't a must. I never went over the edge, drinking-wise, but I probably came pretty close more than once.

Dating is a weird thing when you know you'll go blind. I was already deaf, so that was already a big stumbling block for a lot of guys. I never had a proper boyfriend in high school, but I took whatever opportunities I could (some better than others) because I was convinced that nobody would really want me.

When I got my first boyfriend (whom I'm still with) at 19, I told him a few weeks into the relationship what I had. I figured that if he couldn't handle the news, I should walk away. He was okay with it, strangely enough. He'd walk me if I went anywhere unfamiliar at night, which was often in a big sprawling college in rural New York. He helped to make my college years what I wanted them to be.

One humiliating moment came my sophomore year. Cornell has beautiful Gothic buildings and tons of steps without railings. I was going there for the first time at night and I didn't see some curved steps. I fell hard. Luckily, nobody saw, and I didn't break anything, but it was a close call. It freaked me out, but I refused to tell anyone.

Sometimes I think the reason I stopped interacting as much with Deaf people and threw myself into the hearing world was because you can't hide Usher's from Deaf people. I'd get comments within a few minutes of meeting a deaf person, saying "Oh, you have Usher's, right?" It always pissed me off, since I hadn't succeeded in covering it up. Hearing people were always so much more gullible, sometimes attributing my clumsiness to my deafness.

And now...

Up until a year and half ago, I proceeded as before: being careful at night, taking public transit, only telling my closest friends about it.

Then I developed a blurriness in my left eye that started to interfere with my reading. The blurriness spread to my right eye. Now I have about 20/200 vision in my left eye and my right eye is worse, but I haven't gotten the exact dimensions.

From meeting other Usher's folk, I had thought that I'd lose my peripheral vision first, then it'd move into my central vision. That's not quite how it worked. Now I have what you'd call doughnut vision. I can see in the middle and my far periphery, but nothing in between.

In some rare cases (so rare, no specialist I've seen has ever witnessed it before), the central vision can get compromised before the peripheral vision closes in completely. With this development, I became even more light-sensitive and navigating became harder since I couldn't check my blind spots as effectively anymore.

What does it feel like? Frustrating. I feel like I can't depend on either my sight or hearing. I've found myself touching things to know what they really are like. This leads to some awkward situations, like when people wonder why I'm fondling the furniture at IKEA.

I've started to rely more on memory, organization, and rote, which is hard because I am naturally disorganized and forgetful. I memorize routes that I take through stores, locations of the things that I like to buy, where I put my cell phone. I clean the kitchen methodologically rather than just cleaning what's dirty. It's tiring sometimes, keeping so many things in your mind. Earlier this year, I'd have to sleep for nine to ten hours a day just to feel somewhat rested because I wasn't used to the visual and mental strains. Now, I'm better and getting used to it.

I also find myself turning on my cochlear implant more often to feel acquainted with my surroundings. I used to prefer absolute silence, and at some level, I still do. But I no longer feel safe.

It's sometimes a bit terrifying to even go outside. I feel like since people will assume I can hear, accidents may happen. But I don't want to become a dependent hermit, so I force myself to go out.

I really struggle with using the cane when I need it. I still don't use it all the time, preferring to walk unaided in places I know well. I can see well enough to see people's looks at me when I use the cane.

I find myself envying blind-hearing people because they can pick up environmental sounds that I can't, like the distance of things. I can hear basic things, like traffic, a honk, people talking, but I can't depend on precision. I'm trying to develop my hearing skills but I'll never attain the sharpness of most blind folks. It's strange to be pitied by both blind and deaf people. I'm their worst-case scenario: losing the sense that they depend on the most.

In a way, my declining vision is the hardest on my family and loved ones. As I start to struggle with what I used to do without a second thought, they must stand by and watch. I can learn adaptive measures like Braille and cane training, but they must sit and watch. It's also hard when I get instinctively pissed when they try to help, which leads to me feeling guilty.

So, I have to deal with the guilt of knowing that I cause pain to others who care for me. I don't like to bring others pain. I know they love me, but at the same time, their love of me is precisely what's so difficult. Their love for me brings them pain because they see me struggling.

Meeting new people can be awkward too. I've had a lot of people simply start talking to whoever I'm with about me, not realizing that I understand them. I try to tell people how to interact with me, but the problem is that I don't always know. Most people have never met anyone like me. I'd go as far as to say a lot of people are afraid of me. The worst thing is that I understand why. I'm their walking nightmare: someone whose perceptions are so different that they can't possibly start to relate. Funny thing is, I understand them far better than they understand me.

Most of all, I don't want to let deafblindness define my life. It's certainly a part of me, but it's not the only part. I want to live my life as a whole, full human being, not as someone who's always looking to find a missing piece. As far as I'm concerned, I'm a whole person who just has a hard time hearing and seeing.


Additional Reading

These are two articles about a far more impressive person than me: Rebecca Alexander who has Usher's Type III (losing both her hearing and sight).

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