Visual Wisdom

My name is Keara

Hello! My name is Keara.  I am 21-years-old and just finishing my sophomore year in college.  I'm majoring in psychology with great plans to go into music therapy and work with special needs children.  I play 5 instruments, I sing, and I act for theatre productions at school. 

I was born in Greece and lived in an orphanage until I was 5-years old.  At that time, some Americans thought I was "cute" and decided to adopt me.  When I got to the states, though, they realized just how much medical care I required and would continue to require, so I ended up being passed around to 23 foster homes...until I was 18-years-old, just 2 years ago! 

You see, I was born with congenital nystagmus, caused by some damage to the part of my brain that handles sight.  As a result, I am legally blind.  Now, of course I can't drive, but I can do so much more. I have special equipment that scans print and actually reads it to me. The computer that I received from Vocational Rehab is AWESOME!!! 

The worst kind of blindness I have found is not the physical darkness that I live in, but rather a mental block to all the beauty that surrounds us. 

When I was 12-years-old, I picked up some virus that caused a nasty problem called Gullian-Barre Syndrome (GBS).  It did a lot of damage to my muscles and nerves, so now I have limited feeling in some parts of my body, and in other parts, the slightest touch makes me want to cry the pain is so bad.  GBS is related to an immune deficit my body has where the white blood cells that should be protecting me are actually attacking me.

I also have a related condition called fibromyalgia. Sometimes I find that when I move, I'm shot through with pain in almost every muscle in my body. That's what fibromyalgia does.

Finally, I have to test my blood and give myself Insulin shots every day, since I have Type 1 diabetes. I'm waiting for scientists to discover a type of insulin that doesn't have to be given through injections. Cross your fingers that it will be soon!

Although I don't know my biological family,  I do have a friend, Chris, who is like a little brother to me (he's 18-years-old). He was shuffled through the social service system as I was, so we managed to become close.  Chris has CMV (Cytomegalovirus) brain damage.  He communicates orally but cannot write or type his thoughts down.  He also has some fine motor problems and is visually impaired to boot.  Chris has stuck with me though, and I have learned a lot from him, about how to keep going and never give up!  We might not ever meet our biological families, but we’ve learned that the real meaning of family goes beyond just flesh and blood.

I have some really awesome friends here at college.  They are mostly accepting of my disabilities and medical problems.  My friend Dennis calls me "tigger eyes" because my eyes bounce a lot since they're unable to focus.  My roommate is studying pre-med and she always asks me lots of questions, which makes me feel important.  I would rather people ask me why I do things than to stare or talk about me behind my back.  I think a lot of people are scared of what they don't understand, so if I can help people understand that I am a real person underneath all these "challenges", then I can help to erase that fear. 

I've had my share of being teased.  Even though I have great friends, there are people in this world who simply like to focus on the limitations of others.  I think the biggest disability is the inability to accept everyone as equal.  We're all human, and if you prick my finger, my blood will look just like yours.  If you tease me, I will hurt just like you would if I teased you.  Now having medical problems and disabilities doesn't mean I am this positive inspirational person 24/7.  I speak a lot in local high schools, and the one thing I always emphasize is that there's nothing so special about me except that I've learned from the experiences life has dealt me. Not everyone has done that.

If you know people with visual impairments, let them show you how much help they need.  I hate it when people automatically grab my arm and try to lead me everywhere.  I also don't like it when they assume I am deaf and shout at me.  I'm not sure why people tend to do this in the presence of low vision, because hearing tends to be more sensitive when vision is impaired, so actually, I hear better than most people, not worse.  If people with visual impairments ask for help, make sure to try not to do too much for them.  Help orient them to their surroundings.  Explain where they are if they ask for help.  Listen to them, and let them teach you. You will be amazed!

My freshmen year of college, I discovered I was the only person on campus with a visible disability.  On such a small campus the word spread quickly.  Most people were either very friendly or helpful, or they tried to stay out of the way.  I wanted to be independent and learn my way around campus so I wouldn't have to depend on others so much for help. 

One day on my way to the cafeteria a group of football players decided to get in my way.  They started asking me if I could see what they looked like and how many of them there were.  Just stupid questions.  I wanted to believe that maybe I could answer their questions by telling them what it was that I could see.

"What I see looks like a picture painted by a child, who then sticks his finger in the wet paint and begins to swirl it around, and in my painting those colors are constantly moving.  I have no ability to focus so it is constantly changing."

There are always times when what we say to people, no matter how hard we try to make them understand, won't make a difference. They're still going to tease us.  For whatever reason, these guys continued to pick on me--everyday.  Some days I still pass them by.  You'll be happy to know that they've slowly gained some respect, because now I know their names and I know what voices those names go with and I walk by and say "Hi Joe, how's it goin' David?".  And I can just "sense" the looks on their faces. 

It may take more than one day to convince people that people with medical problems are first and foremost people, not a bunch of diagnoses.  Sometimes more is expected of a person with a disability or medical condition.  People look for that "savant" syndrome, some special talent.  It isn't right for them to expect more, we're all human.  I learned, though, that if I just keep being who I am, eventually they will see the "me" beyond the challenges.  I've just got to give them time.

Thanks so much for taking the time to read my story. 

More about congenital strabismus
More about Gullian-Barre
More about fibromyalgia
More about about a poem about diabetes?

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004