Ten years ago, I would never have imagined myself to be who I am today. At age nine, I learned that I had a strange thing happening in my head--to be exact, an arteriovenous malformation (AVM) in the right frontal lobe of my brain. It seems that this collection of tangled up blood vessels had been there since birth, though I sure didn't know about it until 4th grade.  Because of it, I lost the use of my left hand, and I've walked with a limp ever since.  Now this might sound strange, but the physical problems were the easy part.  The hardest part was accepting that some people would always see me as different. When I was told that the injury only affected one in one million people, I thought to myself, "why am I that person?" For a long time, I felt like I was the only person who had ever had a brain injury or knew what it was like to feel so alone... like no one cared.  My parents were the only ones who seemed to understand.

I can remember going back to school after having surgery to remove the AVM.  I had to change schools since my old school wasn't comfortable dealing with someone with such a disability. You can just imagine how really hard it was for me to make new friends when people shunned me even when I said hello. I felt just awful. Because my hair had to be shaved during the operation, I looked a little different from everyone else.  I guess that scared people. I think they must have felt like they had to hate me in order for them to be considered cool. And because I was an only child, I felt especially alone. 

People told me that I'm pretty lucky. The doctors thought I was going to die in the hospital. Since the malformation had gone past the middle of my brain, my parents were scared that I might not make it. In fact, get this...the doctors told them that if I awoke from my coma, I would be a vegetable and  I wouldn't been able to recognize anyone. Thank God they were wrong!

Actually, I was lucky in the physical sense.  The artery was so big that it was possible I might never have walked again.  I used a wheelchair for months, and  I remember the cold stares I'd get from people.  I felt like an alien.  My friends drifted  away, leaving me behind while they enjoyed what seemed like wonderful lives.  I didn't feel as if I deserved that. In fact, it seemed like I was being punished for this disability. I was eventually able to get rid of the wheel chair, but in its place I developed seizures. It was always something!

I can remember this boy Joe calling me a retard when he saw me in a wheelchair. And some people would talk to me, then later gossip about how strange they thought I was. 

It wasn't until I got older that people started to understand what I was going through.  I have met some wonderful people with disabilities who have taught me a lot.  We're people...just like everyone else...with feelings and a desire to have fun.  Dancing has become a part of my life.  Not only is it fun, but it's made me more outgoing than I was before. Even so, it was very tough for me to meet guys.

I loved to go to school dances in high school, and I can remember clearly the times guys turned down my invitations.  Sometimes I thought their reasons were legitimate, but more frequently I felt like they saw my leg brace rather than my true character. 

In a way, I'm glad this happened to me.  I'm sure you must be thinking how crazy I am to say this, but it has changed a lot about me.  I think it's made me a better person.  I can see past things I didn't before.  I can see people for who they are, and recognize the prejudices that still exist--the ones I feel each day. Besides that, if this hadn't happened, I would never have met some of the most wonderful people in the world.

Today, I am a journalism major at a community college.  My disability isn't going to hold me back from realizing my dreams. I suffered a lot of pain and cried a lot of tears to get over the stigma that seemed to surround me.  Believe me, it's hard to ignore thoughtless comments and stares, but I've learned that you are who you are, and that's special in itself. 

If you want to be a friend to kids who don't look the same as you do, the best thing you can do is to treat them just like you'd treat your other friends.  I know how special it makes a person feel just to know that someone cares. 

Thanks for taking the time to read my story, and to learn how you can help with "the hardest part".

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

Last updated: November 16, 2004