By: Kimber Lee Empson
As told to: Dan Roberts, Founding Director
Macular Degeneration Support
Sixteen-year-old Kimber Lee was diagnosed with Stargardt disease at the age of eleven. Now preparing to enter college, she tells about living with visual impairment through her important formative years as a teenager.
With uncommon candor, she relates her feelings, her relationship with family and peers, her schooling, her successes and failures, and her strong desire to rise above what others might see as a disability. By doing so, she hopes to help others deal with the challenges that threaten to stand in the way of living a full and independent life.
This unique story is in the words of a young girl who is living it. It should be read by all family members, educators, physicians, counselors, and other acquaintances of visually impaired children and teens. It should be read especially by those who are living in Kimber’s world of low vision. They may see a little of themselves in it and will hopefully gain comfort in knowing they’re in good company.
Chapter 1: Diagnosis
I was eleven years old and in sixth grade. Mom picked me up from school to take me to the eye doctor, because I was having difficulty seeing the board and reading my books. Finally, I thought, we would figure out what was wrong. I had been having eyesight problems for as long as I could remember, but my vision was definitely getting worse.
The eye doctor wasn’t very nice. After the examination, he told Mom I was playing games. He said I was just being lazy, and that there was nothing wrong with me a good psychiatrist couldn’t fix. I was devastated. I was even more devastated when it became apparent that Mom believed him over me. For the next three months, I was punished for not being able to see things. My parents said acting like that was
I went to my guidance counselor at school. We researched ways vision could be affected by diet, stress, and other psychological issues. I brought my findings home to my parents to show them the doctor was wrong. My persistence paid off. Mom made another eye appointment for me with another doctor.
This one was very nice. He took his time, and after the examination, said “You’re not crazy. Something is wrong. I’m not sure what it is, but I can assure you that you’re not crazy. I want to send you to a specialist.”
I was so relieved to have someone believe me, I really didn’t stop to think about what could be wrong with my eyes. I was also angry with my mother for not believing me. I told her she needed to apologize to me. Five years later, she still is.
The elevator ride was very quiet. The expression on Mom’s face was one that I had never seen before. I saw fear, anger, and love all at once. The ride home seemed long, because she didn’t speak. Later, she said that was because of the lump in her throat.
The specialist’s office was three hours away. A snow storm was moving in, so Dad decided to drive us into town the night before. We arrived at the motel, and that’s when the fear of blindness really hit me for the first time. I was truly scared of the unknown, and I knew my parents were afraid, too. So we played some games to pass the time.
The appointment with the retinal specialist couldn’t come fast enough. He did a series of tests and then sat down with us. He said I was legally blind, which meant my vision was worse than 20/200. Still, he said, I should be able to live a normal life with the exception of not being able to drive or join the military. He said I had Stargardt disease, a juvenile form of macular degeneration that might eventually take away all of my central vision. He explained there wasn’t yet any cure or treatment, but some good research was being done. Meanwhile, I would have to make some modifications in order to do certain things.
I could tell that Dad was worried, but he was trying to be strong. I saw a tear roll down Mom’s cheek. It was then I realized how serious this was. The specialist gave us his home phone number in case we thought of any other questions or had any other concerns.
I took Mom’s face in my hands and told her I wanted to stare at her so I wouldn’t forget what she looked like when my eyes got worse. Trying to hold back her tears, she held me and told me everything was going to be all right. I wondered who she was trying to convince: herself or me. Life for all of us changed that day.
By the way, I went back to the first doctor and told him he was wrong. I suggested maybe he needed to think about how he made me feel, and maybe he should become better educated so he won’t do that to some other kid. He apologized, but it meant nothing to me. What he did was unforgivable.
Chapter 2: Parents
It was a time of adjustment for our whole family. Mom became very depressed and obsessed with trying to fix things. Later, she told me one of the jobs of a mother is to make all the bad things go away for her children. She is supposed to make everything all better. She felt at the time that life wasn’t dealing me a good hand, but she kept her faith in God and her faith in me. She truly believes there’s a special reason God chose me to have Stargardt disease. We may never figure out why or for what, but we know there is a reason.
Mom felt like it was her fault at first. She thought she must have done something wrong, and her guilt nearly got the best of her. She became ill from depression that lasted several months. I kept telling her I was all right, but it didn’t seem to help. Eventually, though, she started putting one foot in front of the other and became my strongest support system. She is still sometimes way too protective, but I know it’s because she loves me so much.
We have a strong bond. She’s my mother first, but she’s also my best friend and my role model. I don’t blame her for anything. I’m very proud of the way she was able to take charge and advocate for me. She has taught me that, with hard work, dreams can and do come true. I know I wouldn’t be who I am without her strength.
The first thing Mom did was notify the school and make an appointment to see a low vision specialist. She spent hour after hour, day after day, week after week, on the Internet researching Stargardt disease. My older siblings started to resent the time she was spending with me, for me, and about me. I didn’t want the attention. I just wanted to be normal. And when Mom was sick, my father was the one who kept our family going.
Dad is a kind, responsible, hardworking man, but he is, oh, so very strict. He never allowed me to come up with a good enough excuse as to why I couldn’t do something because of my visual impairment. And trust me, there were times I tried. Whenever I said, “I can’t.” he would say, “Yes, you can, and you will.”
One time he asked me to wash the dinner dishes. I told him I couldn’t, because I couldn’t see if they were clean. Well, he spent the next two and half hours lecturing me. He said I could feel if they were clean, that I didn’t need my eyes to do it. He told me that, when I go out on my own, there won’t always be someone there to do things for me, so I had better figure it out, and that until I did figure it out, I could forget about any privileges. I thought he was mean and didn’t care. Now I know he was only trying to make me as independent as possible.
photo of Kimber with prize deer
Before I was old enough to hunt legally, Dad would take me out in the woods with him to teach me gun safety. I loved to walk in the woods and see nature at its amazing best. In Pennsylvania, you have to be twelve years old to hunt, and by the time I reached that age, I had already lost some vision. I wanted to go so badly. I couldn’t let my low vision stop me.
I knew if I was with Dad I would be all right. He taught me the importance of being absolutely sure I recognized a deer before I pulled the trigger, and that if I had any doubt, don’t shoot.
It was fall, and hunting season was just around the corner. I couldn’t wait for Dad to take me to get my license. I presented my hunters’ safety card at the store to show I had passed the course. The man selling the licenses looked like he was going to faint when my dad told him I would need a little help filling out the forms because I was visually impaired. I can only imagine what that man must have been thinking. I smiled at him and told him not to worry. I would be hunting only on our property.
That week, Dad and I did some target practicing and sighting with our guns. We always had a little contest before the season actually started. My older brother, my older sister, Dad, and I would target practice to see who had the best aim. The winner would be taken out for a banana split at the expense of the others. My brother went first, then my sister, then Dad. Finally it was my turn.
The target was a hundred yards away. I looked through the scope, aimed, and exhaled. I pulled the trigger and won the banana split by hitting the tack dead center of the bulls-eye!
At 4:00 A.M. on the first day of hunting season, Mom made us all a big breakfast, and we went out to the tree stand. Mom doesn’t hunt, because Dad says she can’t keep quiet and be still. He said one year he took her hunting and told her to wait under the apple tree. When he came back to check on her, she was singing and snapping twigs off the branches. She stays home now.
Anyway, since it was my first year, I stayed by Dad. Shortly after the sun rose, he saw a buck. He told me to get ready, and he pointed in the direction the buck was coming from. I found the animal in my scope. He was broadside, which makes for an easy shot. I aimed, exhaled and pulled the trigger. The buck went down, and I jumped with excitement. Dad hugged and hugged me. It was an eight point buck–a whole lot better prize than a banana split.
That’s the only deer I ever shot. I still go out hunting with Dad every year, but I no longer carry a rifle. Instead, I walk through the pines to see if I can flush anything out. I love the outdoors, and especially the memories we make.
Mom has a different way of caring. In many ways she has tried to protect me from the cruelties of the world. Sometimes that’s not bad, but she’s extreme. When I would want to go to a school dance, for example, she would make sure the people I was going with knew I had Stargardt disease. It didn’t matter that I didn’t want everyone to know. Many arguments spawned because of this. Over and over, I tried to make her understand it was my decision who knew and who didn’t need to know. She would try to make me understand it was my safety she was concerned with. This still comes up for debate at times, but I believe I’m gradually prevailing. As I’m getting older, I understand her protectiveness. I still don’t always like it, but I don’t think that has as much to do with my vision as it does my age.
Mom has literally put her life on hold to make sure I succeed. Her sacrifices are too numerous to mention. She has gone without in order to provide me with expensive assistive technology. She has changed careers to be more available for my education. She tells me I am her strength and inspiration for whatever this world has in store. She tells me my courage is the reason she fights for what she believes in. In truth, though, she is my strength, my inspiration and my courage.
Chapter 3: Siblings
I can’t help but think my situation caused resentment in my older siblings. The time and dedication my parents invested in me was time and dedication they went without. I have three older sisters. The oldest experimented with drugs. The next oldest became a teenage mother. If my parents didn’t have to spend so much time with my problem, maybe none of that would have happened.
The third oldest caused all sorts of chaos in our house when she was a teenager, which I think was her way of trying to get attention from my parents. She is now a responsible mother and a good friend who finally understands that our parents were doing what they thought to be best at the time. She and I are very close now.
I also have an older brother who moved out when he was a teenager. He said he felt like he was in the way, which I think was just an excuse. He tried to play on our mother’s sympathies, and probably would have come up with any reason he could to leave. Still, to this day he doesn’t truly understand what I go through, nor does he seem to want to.
My younger brother is a gift from God. One time, kids were teasing me at his baseball field, because I couldn’t find a ball that flew over the fence. They were telling me where it was, but I just couldn’t see it. One of them said, “What is your problem? Are you blind or something?” My brother flipped out and came right to my defense. He made that boy feel awful and got him to apologize to me.
My family has become my security net. I know I can go to them with anything, and they will be there for me. I know if it wasn’t for the love and support of my parents, I would not be where I am today. I’m grateful and blessed to have them.
Chapter 4: Peers
Children naturally want to fit in. They want to be popular, and they want acceptance. Stargardt disease doesn’t change that. There was a time in my life, though, that I thought fitting in was going to be impossible. I felt alone. I was afraid. I was very insecure. I just wanted to be normal.
Mom asked me for my definition of normal. Rolling my eyes wearily, I said she knew what I meant: I just wanted to see like everyone else. She sat with me and told me I could, but I just needed to see in different ways.
I don’t have very many friends my age. For the most part, I was tormented in school. I would be teased if I used my magnifiers, so most of the time, I chose not to. My peers had a hard time understanding that I sometimes had to do things differently. I tried to explain that I couldn’t recognize faces and they had to speak to me first so I would know who they were. Still, many thought I was stuck up or mad at them, because I didn’t notice them somewhere. Most people I associate with are older than me, but that’s my choice.
When I was first diagnosed, my guidance counselor made me stand in front of the class to explain what I could and couldn’t see, and why. I didn’t want to do it. I didn’t want to be treated any different. That was one of my biggest fears, because there was a boy in my class who had retinitis pigmentosa (like tunnel vision), and everyone picked on him and was very mean to him. Well mostly everyone. I never did.
I tried to help him, and I found myself feeling bad for him. I certainly didn’t want anyone to pick on me or to pity me. I told my classmates that no matter what, I was still the same person inside. That was sort of my plea to them that our friendship shouldn’t change, just because my eyesight did.
For the most part, people did treat me differently. My classmates stopped inviting me over for birthday parties and sleepovers. The friends I made when I twirled baton seemed to move on without me.
I had to give up playing baseball, because I couldn’t see the ball anymore. My coach had tears in his eyes the day I told him I could no longer play. I was the only girl on the team, and he always boasted to others that I was his girl. He offered me the job of “bat girl,” but I told him it bothered me too much to attend the games and not play.
I concentrated on go-cart racing for awhile. I could still get around the track with the best of them, but I started worrying about injuring myself or someone else.
After that I tried basketball. I went to all the practices, and I was really good. I wasn’t the best player on the team, but I was good. However, disappointment came again when my coach wouldn’t play me in the games, because she thought I would get hurt. So there I was, a bench warmer being reminded of yet another thing I couldn’t do because of low vision.
School dances were another issue. Mom always feared that the boys would shy away from me because of my condition, but that didn’t happen. I had plenty of opportunities to go to the dances with a date. At first, I was still able to recognize faces, but when my eyes got worse, it became difficult. I feared I would go up to someone thinking they were someone else and make a fool out of myself. I stopped going to dances for a while because of that.
Then I figured out I needed to start being more open about my needs. I should tell my date to not leave me standing alone without letting me know who was around me. And if I needed to use the restroom, I should ask him to wait outside or ask him to stay in the same place until I got back.
I started realizing that, if I wanted popularity, I had to find it in a different way than most. I told my friend, the one with retinitis pigmentosa, that we needed to stick together. We would get a laugh now and then, because he could see centrally just fine, and I could see peripherally pretty well. So when we looked at something, he would tell me what he saw, I would tell him what I saw, and we would put it together.
I couldn’t help but feel sorry for him, though, because he didn’t have the kind of family support I had. All they seemed to care about was getting a disability check from the government. They never came to school meetings, and they never tried to get him any help. My parents offered to pay for both of us to attend a camp for the visually impaired, but his parents wouldn’t let him go. I think that was when I finally realized how wonderful my parents are and how lucky I am to have them.
Chapter 5: School
School is very difficult for me to talk about. I try to forget some of the awful things that happened to me, but here goes.
In the beginning, Mom and I held a meeting for all of my 7th and 8th grade teachers. We wanted to educate them about Stargardt disease and what modifications I would require in order to receive an appropriate education.
We provided each teacher with a set of simulator glasses and asked them to read from the marker board. They couldn’t. We asked them to read from a book. They couldn’t. We asked them to pour liquid from one container to another. Most couldn’t. We explained that I would need larger print and that the print should be non sherif (no fancy squiggles, like Times font). We told them things like I couldn’t recognize colors, and that it would be cruel to give me an assignment requiring me to follow lines like longitude and latitude on a map.
Our time and preparation for this demonstration was wasted. Over the next three years, I learned that ignorance, cruelty and discrimination exist at all ages. Most of the teachers refused to provide the accommodations I needed. It took the district nine months to provide me with an electronic magnifier. That’s a desktop monitor you can put printed materials under to enlarge the words and pictures. Then my science teacher refused to let me use it, because he didn’t want to be responsible for it in his classroom.
My math teacher gave me what he called “fun sheets,” which were practice worksheets in eight-point font (not much larger than in a phone book). He ridiculed me in front of my peers with comments like, “What’s the matter? Ray Charles can do it, so why can’t you?” He gave me a ruler to measure things, and when I said I couldn’t see what I was measuring, he told me to just do my best . Of course, he said, I would have to take a zero.
Once, a teacher threw a piece of candy at me and hit me in the temple. I didn’t see it coming, and I was embarrassed and humiliated.
I was allowed to participate in basketball, but I was never allowed to play in an actual game. The school district felt I might get hurt, even though they had a letter from my retinal specialist saying I could participate.
I was dismissed from the cheerleading squad. In cheerleading practice I was always one of the flyers, and I simply asked if I could be the flyer at the next game. The captain of the squad told me the coach said I was not allowed to fly, due to my visual impairment. I was mortified. For one, the coach had no business discussing my visual impairment with a student. Secondly, I had provided documentation from my retinal specialist that I would be able to participate without any limitations. And thirdly, I was the best flyer on the squad.
I ran to the restroom so no one would see how upset I was. I just wanted to hide. The girls on my squad wouldn’t leave me alone. They kept telling me I needed to understand. I definitely understood. I understood they were just as discriminative as my coach. I understood how ignorant and cruel people can be. I understood that I was not going to let this go without a fight. I protested and attempted to advocate for myself through the superintendent’s office, but it was an exercise in futility. I was kicked off the squad.
Most of the time, the teachers would send me to the office copy machine to enlarge my own papers, which meant spending time out of the classroom. I was missing valuable instruction, and my grades were suffering for it.
My parents did everything in their power to get the district to comply with my educational needs. They set up meetings in between my regular individualized education program (IEP). They brought in experts to talk to the district. They provided documentation from my doctors. They spoke to my teachers individually and provided them with examples of proper assignment formats. Mom spent hour after hour reading textbooks and novels to me or recording them on tape so I would be able to learn.
My low vision specialist provided a letter to the principal explaining that I should be allowed to wear sunglasses, hats, or visors in the school to reduce glare. The principal stopped me in the hall and removed my hat. He told me in front of everyone that I had detention for not complying with the school dress code.
One of my science teachers required the students to place their assignments in a class folder on her desk. Each class had its own folder, and the label was the only distinction between them. I asked the teacher if she could use a different colored folder for our class so I could tell ours apart. She said she wasn’t going to do that. She said her system had been working for years, so why change it now. I received several zeroes for misplaced work.
Mom asked my older sister to take my assignments to the science classroom before school started to make sure they were put in the correct folder. The teacher told her to leave the room, but she decided to try and plead my case. For that, she received an after school detention.
Another teacher told me if I could apply make up so perfectly, I ought to be able to read my text book. He told me I was just lazy and making excuses for not completing class work. I tried to tell him I had a magnifier mirror, but he wouldn’t listen.
I can’t count the times I had to leave a class so others wouldn’t see me cry. I can’t count the times the teachers stood back and did nothing when the other kids would tease me about my vision. I can’t count the times I called my mother to come to the school. I always tried to remain calm and explain why I couldn’t see what the teachers wanted me to. I tried to explain how I needed things to be, but I felt so defeated.
I thought I would never graduate, and I wondered if life was always going to be this tough. I would beg Mom in the mornings to not send me to school. I would cry that she didn’t understand how horrible it was there.
I didn’t know it then, but Mom had been documenting every time she went to the school. She had been keeping a log, noting whom she spoke to, the date, and what the conversation was about. She had been recording all the meetings with the school board, superintendent, teachers and other school officials, all the phone calls, how long it took the district to provide assistive technology, every time I would come home from school crying, and why.
My parents set up another meeting. About twenty school officials were in the conference room. Twenty of them and three of us. I could see the rage in my mother’s face, as she laid out piles of teacher’s assignments that were not in compliance with my IEP. Still, she remained calm, as she made it clear that she had done her homework on the legalities of the district obligations to provide me with an appropriate education. Dad told them it was apparent there wasn’t a place in that school district for a child with a disability. Mom gave them warning that she had been in contact with an attorney, and that we had every intention of filing a lawsuit. I saw my parents in a new light that day. They became my heroes.
It took a year, but the lawsuit ended in a settlement. During that year the district provided me with a teacher at my house. My grades improved, and so did my confidence. I do miss a few kids, but I don’t miss anything else about attending public school.
Now I complete my assignments over the computer. I’m still a student in my school district, but I do all my work at home. I have a wonderful vision teacher who comes to my house to teach me Braille and mobility skills. Completing assignments over the computer is hard, but I can work at my own pace, modify things when needed, and use my equipment without being afraid of someone making fun of me. The district has agreed that, if I complete the required courses, they will allow me to graduate a year early. They probably can’t wait to get rid of me.
I’m proud to be a high honor student, and I know my future holds great success for me.
Chapter 6: Gaining Confidence
A year ago I wouldn’t have gone anywhere with a white cane. I don’t need it around home, but I’m finding it easier when I use it in unfamiliar territory. I was embarrassed at first, but not anymore. I like the idea of a little independence, and if that darned white cane gives it to me, well then, who cares what others think?
I’ve decided I don’t want to have to rely on other people all the time, and I really don’t need to. It’s the little things I can do that make me feel good. For instance, the other day my vision teacher went with me to my bank, and I filled out my own deposit slip. I used the ATM without help. I used to worry about little things like that, and now I’m wondering why. I think I’ll be able to manage most things life is going to throw at me. My teacher says it’s a sign of maturity. She has also complimented me for being her first visually impaired student to go to college.
I may be sounding self-important, but I just want kids who are visually impaired to know they’ll be all right if they can take advantage of the opportunities. I take advantage of my Braille classes now. I take advantage of the time my teacher wants to spend showing me how to walk with my cane, I take advantage of audio book services.
There is so much help out there, a person with visual impairment would be crazy to not try to learn something that will help them be more independent and more safe. And whoever cares for and teaches kids like me should be ashamed of themselves if they don’t take the trouble to find out what’s out there. Sure, it bothers me that I can’t see very well, but I know I’m going to be all right, because I have people who care.
Chapter 7: Driving
Every teenager looks forward to getting a driver’s license. It’s a sign of freedom and independence with added responsibility.
I have known since I was eleven I would not be allowed to drive. It didn’t bother me too much then, and I really didn’t think about it. The days before I turned sixteen, though, were a different story. I was angry and sad at the same time. I cried and asked why this horrible condition had to be part of me. When I turned sixteen, not being able to drive hit me hard, even though Mom always told me I can’t throw a pity party that lasts more than one day.
My parents bought me a go cart and an ATV a few years back. We live in the country, where they let me drive on old abandoned dirt roads and in the fields. One day, Mom, Dad, and I went ATV riding with my aunt and uncle.
My ATV was not as powerful as my dad’s and uncle’s. Mom saw that I was having difficulty keeping up and trying to see which direction everyone else was heading. She decided to ride with me, which must have boosted my confidence, because I drove faster.
She kept telling me to slow down, but I didn’t listen. She screamed that we were heading for a ditch, but I couldn’t stop, and we went airborne. Our ATV rolled at least three times, and we were both thrown off. My uncle had to flip his machine to avoid us, as we tumbled down the road. My aunt broke her ankle, and Mom and I had “road rash” all over our bodies. It was a hard lesson, but it taught me I had no right to put myself or others in that kind of danger again.
I’ve thought long and hard about how I’ll be able to get from one place to another without a driver’s license. I’ve come up with two solutions: a horse and cart or a moped. My retinal specialist says if I go slow and stay on roads less traveled, I should be fine. I wouldn’t be able to drive in the city, but it would give me a little independence. This is just one of the many ways I’m having to learn to adapt.
Chapter 8: Adapting
It was Mother’s Day, and I wanted to do something special. I woke up in the morning and took off to the upper fields above our pasture. I love to sit there and feel the breeze and the warmth of the sun.
I took some paper and a pen, thinking I would make Mom a card or write her a letter saying how much I love her. I also took my new minocular with me. That’s like a miniature telescope. Mom bought it for me, but I never liked to use it in school, because kids would tease me. We live in bear and bobcat country, though, so I wanted to take it with me in case I heard a noise in the woods.
And I did. I thought it was farther away than it actually was, though. I started scanning with my minocular, but I couldn’t locate the sound. Shrugging it off, I went on trying to be creative.
I heard the noise again, but this time it was closer. Again, I used my minocular, and this time, I saw it. A litter of gorgeous baby fox playing just a few feet from me!
I watched for awhile and then tore off down the path to my house. I wanted to share this with my family. We quickly gathered a picnic lunch, hurried back to the spot, and ended up staying the whole day.
I thanked Mom for buying the minocular, and I apologized for giving her a hard time before about using it. “Who would have thought,” I said, “that on Mother’s Day, my mother would have given me the best gift ever? It’s supposed to be the other way around.”
Hugging me, she said I was the best gift ever. If I had continued to refuse to use that minocular, we never would have had that incredible moment.
Mom and I have had wonderful times thinking of ways to accommodate and adapt so I can be more independent. Simple things like how to tell the difference between the shampoo and conditioner bottles. No problem: we put a rubber band around the shampoo bottle.
One horrifying morning, I accidently grabbed the hairspray bottle thinking it was deodorant. I don’t buy spray deodorant anymore.
I can’t tell the eyeliner from the lip liner, so Mom put a rubber band around the lip liner. Now I just have to not confuse my lip liner with my shampoo.
To tell if I have enough toothpaste, I put it on my finger first, then on the brush.
I learned there is a bump or a raised line on the number five of a telephone keypad.
I have found it easier to read Braille than large print books.
I love my electronic magnifers, especially my portable one. I can read price tags and menus with it.
I’m no longer afraid to ask for help when I need it, but I do have to be careful about whom I ask.
I have learned to use a white cane and a sighted guide.
I hope to learn to use a guide dog someday.
I have learned to fold my money in different ways so I can tell what I’m using to pay for things.
I use a program on my computer that not only enlarges the pages but reads to me if I need it to.
I have learned to stay organized. It saves a lot of time and hassle. I used to rebel and never clean my room. That is, until Mom said enough was enough and let me fend for myself finding my clothes and jewelry. At first I thought she was being mean, but I now know she was just teaching me the skills I would need to become independent. I organize my school classes in separate binders labeled in Braille. Everything has its place in our kitchen, and I have a few items that help me cook, like a talking timer and a liquid level indicator.
I have also learned how to advocate for myself when necessary. I have learned that I can accomplish more by keeping a polite, but firm, voice, by being direct, and by being informative. This was the hardest change for me, but I have had two wonderful parent role models to help me along. They have taught me not to be afraid or ashamed to ask for help, but only if I really need it.
Chapter 9: Proving Myself
A few years ago, I started thinking about what I wanted to do when I grew up. I knew I wanted to be successful, and I knew I wanted to be known for something. I felt like I had to prove to people that I was “normal.” Looking back, though, I think I really had to prove it to myself.
That’s where horses came in. Ever since I can remember I have had a passion for the equestrian life. When I was little, Mom took me to local farms and enrolled me in riding lessons. I could ride, even blindfolded. I could feel the horse collect under me. I could feel the looseness of the reins and when the horse drove into the bit. I knew I could do this, and I didn’t need my eyes. And I think it might be my visual impairment that has made me a better rider. I rely on how the horse feels to me under the saddle. I feel his shoulder lift, telling me it’s a good time to transition into a canter. I feel his back rise ever so slightly, letting me know he is collected and balanced.
It wasn’t long before I was begging for a horse of my own; and this time begging paid off. Mom and I walked my new horse eleven miles to our house. He was a beautiful bay Arabian gelding they said was too hot to ride. I named him Storm, and I was determined to make him my own.
Mom found a wonderful riding instructor who took the time to listen and understand about my visual impairment. Sometimes she would blindfold herself before asking me to do something with Storm. I practiced and practiced, and I couldn’t get enough.
I’ve tried so many times to explain the feeling that I get when I ride. Storm accepts me for myself, no questions asked. He’s freedom, independence, security, pride, a best friend, and a sense of accomplishment, all wrapped into one. Storm and I worked hard with the intentions of someday entering a competition ring. I knew I could do it. He could be my eyes, and I could feel what he needed from me to succeed.
Whenever I felt a little blue about my eye condition I would go to the barn. Storm always made me feel better. He needed me just as much as I needed him. Together, we developed ways to let each other know what we needed to make our ride successful. I learned to feel his body collect beneath the saddle and how the reins felt when his head set properly. I learned by feel and by the way his mane swayed what lead he was going to pick up. We were on our way to being a force to be reckoned with!
My riding instructor talked to me about riding in 4H classes. She told me I would be eligible for therapeutic classes because of my vision, but she thought I could also compete in the regular ones. I chose the regular classes, because I didn’t want to take a trophy away from someone who may have a worse disability than mine.
My first show was just a walk trot event at the county level, but I was still nervous. We entered the ring to the right at a strong trot. I knew the judge should be somewhere in the center of the arena. I couldn’t see him, but I listened. Storm and I did everything we were told and then lined up at the end of the ring to wait for the judge to place us.
“First place to rider number 837 and Keystone Storm.” When I heard that, I couldn’t stop smiling. My first horse, my first blue ribbon! It was easy for me to find Mom in the stands, because I could hear her cheering. It was a day I’ll never forget, and I knew horses would be in my life forever.
Since that show, I have competed in many others in Pennsylvania and New York. One of the most memorable was at the State Fair. Storm and I practiced and practiced. I had to count his strides so I would know where I was at in the ring. It was Storm and me again with many other competitors. The ring seemed crowded, but Storm knew what needed to be done. I could hear Mom cheer each time we passed her.
Then it was time for us to maneuver a pattern of cones placed throughout the arena. I memorized the pattern beforehand and knew just how many steps Storm would have to take. The judge called my number, and I took a deep breath.
We nailed it. I was so proud waiting in the line up, I didn’t even care what place we would get. And it was another blue ribbon!
The patterns are very difficult to complete. It took many hours to figure out the strides and steps, and each arena and pattern are different. I wanted to quit competing in those classes, but Mom wouldn’t let me. She contacted the different shows and asked if they would allow any accommodations, such as a receiver, or if I could walk the pattern before the event. Some were willing to accommodate, while others felt it may be perceived as cheating.
I have had many rewards and successes with Storm and other horses I have since acquired. At age sixteen, I own my own ranch, where I provide beginner lessons for children. I offer the service of breaking and training horses, and I have been asked to assess other horses. Storm and I have placed top ten in the state of Pennsylvania, and I have earned enough points with another gelding to go on to the national level. I have found something I love to do and am really good at, despite my condition.
For years, I did my best to hide my visual impairment. I didn’t want people to know, because I didn’t want anyone to make fun of me or think differently of me. And I especially didn’t want their pity. But I’ve changed. And I think I’ve changed, because I’ve learned that, if I want to be successful, I shouldn’t worry so much about what someone else may think.
I know I’m a good person. I know my visual impairment isn’t my fault. And I know what I want in life. I want to be a trainer/breeder, an equine massage therapist, a national competitor, and I want to provide artificial insemination services. I plan on expanding my ranch by offering things like boarding, training, camps for inner city youth and children with disabilities, rodeos, and carriage and sleigh rides. And I know that, to accomplish all of this, I can’t hide my impairment.
Chapter 10: Coming Out
While I was at my second State Fair show in 2008, I decided to use my white cane in public. I knew if I wanted to get around on my own, I would have to. Mom had sewn an inside pocket into my riding jacket for my folding cane. I thought it might be fun to see what others might think if I dismounted after my riding class event and took it out to walk Storm back to the stables. On the other hand, it might backfire on me, but that was a chance I was willing to take.
It was an exciting show. I think it’s the biggest one in the state, and I’ve been told it’s an honor just to make it to that level. The type of seat I ride with Storm is called saddleseat. I know he really doesn’t stand too much of a chance against the Saddlebreds because they are the true saddleseat horse. Where I live, however, because Storm is an Arabian, he would not even get looked at in a hunt seat class in 4H. The judges look at the quarter horses and the paints. So that’s why I put Storm in the saddleseat classes. Anyway, I had made it to State in two different classes: “pleasure,” which is about the horse, and “equitation,” which is about me.
I started to panic before the show when Mom read the pattern to me for my equitation class event. But at practice we paced out the steps and strides I would have to take to be in the right place in the arena. I had to enter the ring at a strong trot to the right, continue up the rail, and stop just before the first curve. Then I had to stop, acknowledge the judge, walk Storm to the center of the ring, stop, acknowledge the judge again, pick up a canter and circle to the right, stop at the center again, acknowledge the judge again, pick up a trot going to the left in a circle, end up at the other side of the arena, pick up a counter canter (which is an incorrect lead), stop at the end of the rail, acknowledge the judge again, and return to the line up. Acknowledge the judge? I couldn’t even see the judge! I decided I would just smile and turn my head entirely around the arena instead. Hopefully, that would count.
My first event was the pleasure class, and the size was almost double from last year. Storm and I did our thing, and I blew the lead on the final canter. I took only 11th place, which was the same as the year before.
Then I had three minutes to change out of my pleasure class attire, which was a daycoat, vest, and tie. I had to change from that into my equitation attire, which is sort of like a formal tux with cummerbund and bow tie. Mom held Storm while I changed, then I entered the ring. I was shocked that the class had tripled in size since last year. Mom purposely didn’t tell me before, because she knew I would just work myself up.
Another horse cut me off, and Storm apparently didn’t like it. He picked up speed, passed the culprit, and kicked him three times. He’s never done that before. I didn’t think I stood a chance after that, but I went on with the regular part of the class.
Then they asked us all to line up at the one end of the arena to begin the pattern. Each horse and rider had to do the pattern one at a time. The judge’s nod was the signal to begin. Well, I couldn’t see the judge, let alone see him nod. So Mom and I had developed a code word she would yell from the stands when it was my turn. This year, the signal was “Cody.”
Storm and I completed the pattern, and everyone from my county cheered loudly. As they began to call the placings, I didn’t expect to get anything, but the judge apparently didn’t see Storm kick the other horse. We received tenth place which, again, was the same as the previous year.
When I dismounted at the exit gate, I did it. I unfolded my white cane. The other participants’ reactions were totally unexpected. Kids from all over the state came up to me to say how amazing I was and that they had no idea I couldn’t see. I explained that I could see, just not very well, which led to another hundred questions and comments, none of which were negative.
I know Storm and I placed only tenth, but the pride I felt was overwhelming, and the acceptance I felt was even more so. I don’t want to sound boastful, but some of the horses and riders that placed higher than Storm and me were professionally trained, and we beat some of the others that were professionally trained, too. Coming in tenth in that group was a great feeling. The best part of all, though, was the kids coming up to me afterward and making me feel so worthwhile. They didn’t ridicule or pity me. Actually, I think I might have somehow made them feel proud, too.
That boosted my confidence. And it has also confirmed something a wise friend once told me. Success is addictive. The more you get, the more you want. And I now know that courage and hard work are the only ways I’ll be able to do that.
College is in my near future. I have been accepted to a college in West Virginia pending my high school diploma. I’m still scared of the unknown, but I know I can face it as long as I have the support of my family and the will to succeed.
Chapter 11: Funny Moments
Through the years, I’ve learned to have a little fun with my condition. When I was in public school, I had a teacher that would yell at me and make rude comments about my loss of my sight. So I would entertain myself by blotting out some of her body parts with my blind spots. Like, I would remove her head so all I could see was her arms flopping around. One time she must have noticed something, because she asked me what I was grinning about.
I would also play a game with my friends to show off my good sense of hearing. Better hearing is sometimes a benefit of vision loss in kids, but it’s more of a necessity than a gift. My friend and I would close our eyes and I would drop a coin on the floor. If my friend could find it before I did, she could have it. If I found it before she did, she would owe me the same amount. I always won, usually winning enough change to get an extra snack now and then.
Sometimes I see things that aren’t really there. I’ve been told those are phantom visions caused by a condition called Charles Bonnet syndrome. At first it frightened me a little, but it’s harmless and pretty common in visually impaired people. The images are always of something beautiful, whether swirling lights or lovely ladies. I have fun with it, because I have convinced my little brother that I can see ghosts. Every night before he goes to bed, he asks me to check his room for them. Sometimes I tell him there is one, but it’s an angel ghost that wants to be there only to make sure he has good dreams.
When I friends come over, we often go for an ATV ride. They always let me drive, because they say that it’s like going on a carnival ride. You know you’re going to be all right, but there’s that thrill hitting the bottom of your stomach when it looks like you might run into something.
We’ve given my best friend the “backseat driver award.” She always tells me if I am getting too close to the edge, or when to turn left or right. If she tells me to slow down, and I don’t, she clobbers me. But even with her sometimes painful help, I’ve hit a few things. Last fall I took out my uncle’s hunting target. I also ran into the back of my father’s 4-wheeler and broke out his tail lights. I remember that really well, because I had to pay for the damage.
Many times, I have been out in public and have run into people or religious groups who want to pray for me. They call it “laying their hands” on me. It makes me uncomfortable, especially when I don’t know them. I believe in God, and I do believe in people who can heal, but sometimes it just makes me uncomfortable. So I wondered what I should say the next time this happened to me. Of course, “No, thank you” came to mind, but being a little devious, I had another plan.
Mom and I went to the mall to do a little shopping, and we were approached by a religious group asking if they could pray for me. I politely said they could, which pleasantly surprised Mom. Then, after they did their thing, I opened my eyes and yelled, “Oh my gosh! What did you do? I can’t see anything now! Mom, where are you? Help me!”
It was priceless. The people were apologizing, and a crowd started to form. They didn’t know what to do. I know it was mean, but you have to admit, there is some humor there. Mom wasn’t very happy with me, but we shared a good laugh when we hit the parking lot.
The next time, when I was being prayed over by a young man, Mom kept poking me in the ribs. She thought I was going to play my trick, but I surprised her and simply thanked him. Afterwards, she told me she was glad I didn’t embarrassing him. I just smiled at her and said, “No way. That guy was cute!”
Being visually impaired, I sometimes rely on a sighted guide to help me get around. While we were at the State Fair, Mom and I went to a restaurant for dinner. After eating, we stopped by the restroom. I let her lead the way, which was a big mistake, because she accidently led me through the wrong door. We were about five feet inside when she said, “Oops. Kimber, this is the men’s room.”
She managed to apologize to the occupants and blurted out that I was visually impaired, so not to worry. I couldn’t see anything, but I’m sure my face turned bright red. Mom and I laughed all the way to the parking lot. Now, every time we use a public restroom, I never pass up the chance to ask if she’s sure it’s the one with ladies in it.
Okay, one more story. One evening, just before dark, I looked out the back door and saw our cat sitting on the stoop. Thinking she must be hungry, I put some food out for her. When I bent down to pet her, something was wrong. She just didn’t look right. I leaned closer and saw that I was petting a wild raccoon! In that totally cool way I have, I screamed really loud and slammed the door. It was not one of my most shining moments.
Chapter 12: Finding My Stride
It’s been almost six years since my diagnosis. I’ve had to overcome much diversity. At times I’ve had to comfort those who should have been comforting me. I have days when I pity myself. But then I have days when I think nothing is going to stop me from accomplishing the things I want to do in life. I guess, like my horses, I’ve been trying to find my stride.
Having Stargardt disease is very hard to deal with, but it’s not the end of the world. When I was a little girl, I knew my disease wasn’t catching. What I hadn’t yet learned, though, was that how I handle it could affect everyone around me. Now that I’m older and getting ready to be an adult, I’m learning how important it is to make those effects as positive as possible. I hope this first part of my unfinished story will be a big step in that direction.
Mom says, “God might not have given you sight to see the world, but He definitely gave the world a sight to see.” That always makes me smile.
©2009, MD Support