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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities

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Smell the Roses

Rayna Segelman

In 1991, May 29 — Rayna’s tenth birthday — was proclaimed “Lefties Day” in Massachusetts. Rayna has limited use of her right hand, and with her mother’s prompting, she had written Governor Weld asking that her birthday be recognized.

I met and interviewed Rayna nearly six years later. At fifteen, she was as upfront and matter-of-fact about her disability as she had been at ten. She also enjoyed the same respectful and loving support from her mother and was as ready to find good fortune in a difficult situation.

I opened our interview by asking Rayna to describe her disability.


R: I have a cavernous hemangioma in the left part of my brain. It’s basically a mass of twisted-up blood vessels, and I was born with it. It didn’t bleed internally until I was three and a half.

L: So you didn’t know about it till then?

R: No, there was no way of finding out. And then, after that bleed, it left the right side a lot weaker — what some people would consider paralyzed. It was sort of like a stroke, in a way.

L: The whole right side of your body?

R: Yeah. From top to bottom. I had surgery to help my hand and my leg work better. The surgery was successful, and then, the summer I was going into the fifth grade, I had another bleed internally.

L: How did you know there was a bleed?

R: I have MRIs every year — you know, they’re pictures of my brain — and they can see if it bled. Well, it did bleed. But how we could tell was my whole right side basically went numb. That was a flashing red light that something was wrong. It was very scary to me. The doctors didn’t know if they should do surgery. I’m very fortunate to have a father who is a doctor. He pushed for a kind of radiation to shrink my blood-vessel mass. They’d never tried that particular kind of radiation on somebody with my condition. The doctors felt it would be the best thing, because they knew if they left it alone it would be very dangerous and I might have another one.

So I went through a series of 25 treatments, and at that time I lost big chunks of my hair. I was ten. I only went to school for a couple of hours a day, I came home, and I went to the cyclotron where I had the radiation four days a week. They were trying to shrink the mass by the proton-beam radiation. It turned out it did shrink, and the next year it did shrink. The year after that it didn’t shrink, but this year it did shrink again. So it’s half the size it was, which is wonderful. Whatever we got out of it was fantastic. I made medical history, and they’ve tried it on other people and it has been successful.

L: You haven’t had a bleed since you were ten?

R: No, not at all.

L: I understand that what you have is a very rare condition.

R: Yes. Not a lot of people in the world have it. You know, when I was first getting diagnosed, they weren’t sure what it was. Some people thought it was cerebral palsy.

L: Besides making your right side weaker, does your condition affect you in other ways?

R: Yeah. I have learning problems because of where it is in my head. I have word-retrieval problems. I am sometimes slow processing things — you know, something you could have told me to do five minutes ago, I might not remember. But then something that happened three or four years ago, I could remember just like yesterday. You know, if you give me three things to do, I’m bound to forget one of them or two of them.

L: Is it harder for you to keep up with certain kinds of school work than it is for your friends?

R: I’m in the Learning Program, which is a special needs setting. It goes at a different pace, and it’s a little bit different than a regular classroom. So, you know, it adapts to my needs. Up until I was in, let’s see, seventh grade, I wasn’t in a special needs classroom. I went out for special help, but I was always in a mainstream classroom. Then when I got to middle school, I was put into the Learning Program, and then I went to a high school based on special needs learning disabilities.

L: Do you like being in a separate environment?

R: It has its pros and its cons. The pros are you get a lot more attention and the teacher does go slower. So you can understand the material that we’re working on at that given time. But, you know, it’s very hard because I have these classes with the same kids every single class. So I don’t get to go and be with my other friends. I do see my friends in the halls and I do have an elective, but it does limit me like that, the social aspect of it.

L: What grade are you in?

R: I’m a sophomore. I like it a lot. It’s a good year. It’s fun just hanging out with friends and talking a lot and just, you know, relaxing. There’s a time to work and there’s a time to relax.

L: Where do you hang out?

R: In school, in the hallways — stuff like that. It’s nice. But my physical limitations do hold me back, ‘cause it comes with the territory — a “package deal.” Because it’s hard — I can’t get to places. I have trouble getting to the cafeteria because it’s down a ramp. Walking outside, it’s very spread out, it’s hard to get around. But I deal with it.

L: So, is it traveling long distances that’s hard? Do you have difficulty with coordination? Balance?

R: Balance, yeah. I have trouble with my balance. Also, I get tired very easily. So it limits me. But, you know, I’m working on it. I exercise and I’m building up my strength.

L: You said you’re limited but you deal with it. Can you say a little more about that?

R: My school days are not that “normal” because, you know, I can’t get to places — I don’t take electives; I take them out of school. I take one elective in school, which is fun — I’m not saying it’s not fun. I mean, I have a very good social life — it’s not that — but it still makes it harder.

L: Do you talk about your limitations with your friends?

R: Yeah, but I try to look at myself as not what I can’t do but what I can do. I might not be able to, you know, do track, but mentally and socially I’m fine. I mean, that doesn’t hold me back. Why bring up my disability? I mean, I’m not my disability. I take control over it. I never want my disability to take control over me. I think it’s very, very important with your own self-esteem to feel that way and not feel sorry for yourself. I think that’s extremely important with your outlook on life, especially when you have a disability. If you let your disability take over you, your life is going to be a lot more depressing. Why bring it up?

L: How do you take control?

R: Well, I try not to let it get to me. Yeah, I have my moments that maybe I get frustrated or I can’t do it. I’m not saying I’m perfect or anything like that, but, you know, I just try not to dwell on it. Otherwise, I’m going to miss out on so many beautiful things in life. Why do that? Life isn’t a dress rehearsal. Everybody has something in life, if it’s a disability or problem, everybody has something and that’s okay. It might be more challenging for others. But you try to get by it and try to get through it.

And I have a wonderful support system: my friends, my family, my parents, my sister, my mom, my dad, relatives, grownups. I have a huge support system, and I feel that whenever I need someone to lean on, they’re always there for me. That’s a very nice feeling.

My sister, Tovah, is just wonderful. I couldn’t have asked for a better sister in this whole wide world. We have our fights. We have our moments. We have our arguments. But she’s always there behind me, supporting me, loving me, caring for me. She would do anything in this world for me and the same with me; I would do anything in this world for her. You know? My mother and my father, they’re wonderful. My father’s in the medical field. He pushed things and he got it — for me, you know? My mom is just — she’s wonderful. She’s my best friend. So is my sister, Tovah.

L: How did you learn to have such a positive attitude toward your disability?

R: Well, I think I’ve always had it, but I think I really learned how to use it when I went through the radiation when I was ten. When I was having radiation, I think that I just had to have a good outlook and, you know, be positive. I’ve always had it, but now I really know how to use it.

L: You discovered something about yourself that’s always been there?

R: Yeah. It’s like opening a door, you know, unwrapping a present for the first time — that’s exciting. I love learning things about myself, about people. I really love doing that. Why dwell on things that you can’t do? Anybody, not just disabled people. I don’t look at myself as a “disabled” person. Because, you know, I’m Rayna.

L: Can you say a little more about who Rayna is?

R: Rayna is — I try to be a very caring person, a very giving person, a very kind person. At least I try to be, to the best of my ability. I’m not perfect. I do make mistakes. I do hurt people, not realizing it. Or realizing it, I will say I’m sorry, because I’m not the kind of person that will go, you know, “Oooh, I’m going to hurt somebody — yay!” I’m not like that. I’m very giving. I’m very honest. I’m very open. I think I’m very loving. I think I have a wonderful perspective on life that a lot of people without disabilities don’t have. I always have the saying, “If you smile at somebody, somebody’ll smile back at you.” And I think that’s the truth. Stop and smell the roses. Life is too beautiful. I think because I’ve gone through so much and had to understand so much medically, I think that, in a way, forced me to grow up in a much faster way than normally.

I play tennis and at the end of the year, my tennis group goes to the Special Olympics, and I have to say it’s one of the best feelings in the world to see people with so many problems, that it feels like my problem is nothing compared to all the hurdles that they have to try to go over — the triumphs that they come to and all the pain and suffering in their lives. And I go and I see the smiles on their faces and the “yes, I can do it.” That is one of the best feelings in the world that I could have — seeing the confidence in themselves. And the confidence in me; I think I have a very good confidence.


Rayna first introduced herself to me with her Hebrew name, and I now asked her what part being Jewish played in her life.


R: Ahh, a tremendous part, a tremendous part — in a big way, faith has helped me so much along the way, in my life. When there have been good times and bad times, I kept my faith through everything and I prayed. I love my Judaism. It’s just been, you know, a tremendous support, and I believe in God and miracles and everything like that. It’s very important to me — very.

People have been so supportive, so caring, so wonderful. Just the prayers and, you know, the sense of community that I have. It made me who I am, and I love who I am.


For more information about the disabilities discussed in this story, please visit the Resource Links page.

 

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spacerHOMEPAGE
INTRODUCTIONACKNOWLEDGMENTS
TABLE OF CONTENTS PART 1PART 2PART 3PART 4
RESOURCE LINKS
INDEX CONTACT


spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
The combined contents of this website are © 2006, 2008 Linda Hillyer. All rights reserved.