So I once posted on facebook that "I ran into an armadillo, we must not have seen each other." My friend, Heather, got a kick out of that. I thought it was funny too. Definitely should have fun with what I have been given and not take Life so seriously. I believe that Indigo Girl's song "Closer to Fine" says, "It's only Life after all."
There are armadillos all over where I live. There was a time when my horse back riding friends and I would go riding in the fields, those darn armadillos would make holes all over the place. Armadillos, of all animals, should know that they are making it more challenging for me!!!
I took on the name of "Blind like armadillo" when my riding buddies were coming up with "Indian" names. So was I offended? Well, I am not blind nor visually impaired, my body is. Although, I do find it odd that when people talk to me they comment on how blind I am or tell me I cannot see.
I have two responses to that comment. I have so much to offer and yet someone can only see me as the "blind" one. That is very odd to me. The other response is if someone is in a wheelchair; would every time you see them would you say "so you cannot walk," or "here is the paraplegic."
I have learned that people are uncomfortable around someone who is disabled or handicapped. They do not know what to say or how to act. I am not offended when someone says "what did you see when you went to the zoo," or "did you read that book?" Everyone has their own experiences. Everyone sees reality differently. I have adapted with the help of technology to live in this world in a body that is visually impaired. I really get to see things in a different Light!
Jodi
Saturday, August 29, 2009
Monday, August 24, 2009
To The Question: Have You Always Been Blind?
Well, actually, I am not blind; the correct term is visually impaired. I remember being in second grade and crying to my parents that I could not see the black board at school. My parents took me to the doctor and sure enough, I needed glasses. When I was between the ages of 10 and 12, I was sent to Bascom Palmer Eye Institute in Miami. I was diagnosed with Retinitis Pigmentosa (RP), which is a progressive eye disease of the retina. I inherited it from my father's side of the family. For about ten years, my two sisters, father, and I, went yearly to the Eye Institute for research purposes. As a teenager, my parents and I never discussed my eye condition. I was never treated any differently. I went through regular public schooling and had endured my struggles. I would get by by asking people if I could copy their notes from the board.
I was also very involved in sports growing up. I was on a swim team, dancer, track and field team, and practiced judo. Thinking about it now, each of those sports were a challenge for me, especially at night. RP first progressively takes your night vision and as a child my night vision was already poor. I did not realize how differently I saw compared to others. Sometimes, I had a swim meet at night or dance performance in dim lighting. I also had to train and compete in judo tournaments without my glasses. Contacts were not an option for me then.
The term night blind was never used when I was growing up. I never thought of myself as being partially blind. I used the term partially blind because my day vision was still in the legal limit to drive. By the time I started community college, my "eyes were opened" you can say, to my condition.
In community college,I had to write an essay. I had a hard time seeing the lines on the paper the teacher handed out. I will never forget my experience. The whole class was quietly writing and I went up to the teacher and whispered to her "I hope that you don't mind that I wrote on my own paper because my eyes are bad and I can't see the lines". She said out loud, "What? I am hard of hearing." I wanted to die! Here I was trying to be discrete, and the teacher was getting the whole class's attention. I had to repeat myself. My teacher gave me a paper with a room number an told me to go there. I had know idea what was about to take place.
In the room was a blind man. He was sitting at his desk. I told him I wasn't really sure why my teacher has sent me here. After speaking with him for a few minutes, he asked me if I had RP. I was surprised by his knowledge. The man asked if I understood what the prognosis of RP was. I did not, but did not want to sound unintelligent. So I said, yes. Then the shocking statement came when he said "so, you know then you could eventually go completely blind?"
At that moment, I had felt like someone just sucked all the life out of Me. My cracked voice told him that I had just learned something about myself . He was very compassionate and gave me his contact information to educate me on the assistance the school can provide to make school easier with my limitations.
As soon as I walked out of the room, I literally fell against the wall. When my Mother and Grandmother picked me up,I told them what I had just learned. My Grandmother does not speak English well so when I saw the look my Mother gave my Grandmother as she translated what I had said got me angry. I felt like I was given information that they were hiding. I went to my room and cried.
The question that I contemplated was "why didn't my parents tell me?" Since we never discussed my eye condition, I didn't feel comfortable bringing it up. Like when you are ready to wear a bra but nobody brings you to buy one :) I just figured that they did not want to worry me or maybe cause my mind to speed up the progression of the disease.
I just went about Life and got my driver's license. I drove for about 4 years. Eventually my day vision decreased and I could no longer drive at all. Next on my journey, I started going to the Light House for the Blind. This place provides skills to make daily function easier for people with low vision. I also learned how to walk with a cane.
RP is challenging because you don't really fit in the sighted world or in the blind world. I know I have been blessed in the sense that I have been able to experience both worlds. Not many people would think being blind could be a blessing. For me, I have seen things that sight could not reveal.
Janice
I was also very involved in sports growing up. I was on a swim team, dancer, track and field team, and practiced judo. Thinking about it now, each of those sports were a challenge for me, especially at night. RP first progressively takes your night vision and as a child my night vision was already poor. I did not realize how differently I saw compared to others. Sometimes, I had a swim meet at night or dance performance in dim lighting. I also had to train and compete in judo tournaments without my glasses. Contacts were not an option for me then.
The term night blind was never used when I was growing up. I never thought of myself as being partially blind. I used the term partially blind because my day vision was still in the legal limit to drive. By the time I started community college, my "eyes were opened" you can say, to my condition.
In community college,I had to write an essay. I had a hard time seeing the lines on the paper the teacher handed out. I will never forget my experience. The whole class was quietly writing and I went up to the teacher and whispered to her "I hope that you don't mind that I wrote on my own paper because my eyes are bad and I can't see the lines". She said out loud, "What? I am hard of hearing." I wanted to die! Here I was trying to be discrete, and the teacher was getting the whole class's attention. I had to repeat myself. My teacher gave me a paper with a room number an told me to go there. I had know idea what was about to take place.
In the room was a blind man. He was sitting at his desk. I told him I wasn't really sure why my teacher has sent me here. After speaking with him for a few minutes, he asked me if I had RP. I was surprised by his knowledge. The man asked if I understood what the prognosis of RP was. I did not, but did not want to sound unintelligent. So I said, yes. Then the shocking statement came when he said "so, you know then you could eventually go completely blind?"
At that moment, I had felt like someone just sucked all the life out of Me. My cracked voice told him that I had just learned something about myself . He was very compassionate and gave me his contact information to educate me on the assistance the school can provide to make school easier with my limitations.
As soon as I walked out of the room, I literally fell against the wall. When my Mother and Grandmother picked me up,I told them what I had just learned. My Grandmother does not speak English well so when I saw the look my Mother gave my Grandmother as she translated what I had said got me angry. I felt like I was given information that they were hiding. I went to my room and cried.
The question that I contemplated was "why didn't my parents tell me?" Since we never discussed my eye condition, I didn't feel comfortable bringing it up. Like when you are ready to wear a bra but nobody brings you to buy one :) I just figured that they did not want to worry me or maybe cause my mind to speed up the progression of the disease.
I just went about Life and got my driver's license. I drove for about 4 years. Eventually my day vision decreased and I could no longer drive at all. Next on my journey, I started going to the Light House for the Blind. This place provides skills to make daily function easier for people with low vision. I also learned how to walk with a cane.
RP is challenging because you don't really fit in the sighted world or in the blind world. I know I have been blessed in the sense that I have been able to experience both worlds. Not many people would think being blind could be a blessing. For me, I have seen things that sight could not reveal.
Janice
To the Question: Do You Mind If I Ask About Your Eyes?
Sure. I have retinitis pigmentosa and was diagnosed at five. It ran in my family. My older sister, Janice, has it the worst. My middle sister is mildly affected; she still drives and raises two kids. My Dad did not have any symptoms until he was in his 40's and only in one eye.
The disease referred to as RP effects both acuity and field of vision. You are first effected at night and then eventually during the day. Each individual progresses differently. But, ultimately, you can lose all your vision like my Uncle and my Grandfather did.
It is hard to explain what I see. I have small "islands" that I see out of. Therefore, if you are in my field of vision, I may see it and if not, then it is not there. But, if I move my head I may see it. So I do ALOT of scanning!
It is a challenge for people because sometimes I see something and sometimes I do not. Even when I do see something, it is very unclear with no details. So, for example, if I look up at a tree and see something moving, I may say I saw it! But really, I only saw "something" move. I could never identify it in a line up. But, if someone tells me to look into the tree and look for something, the chances of me finding it is slim to none. Ironically, this is frustrating to people...how funny is that!
I get by with the attitude to "just go for it." There is a safety factor but I do OK 90% of the time. The other 10% I just have to laugh and say, "didn't see that, oops!"
At least I stopped driving almost nine years ago. First, I had just stopped driving at night, but continued during the day. Then, I started only driving during the day in familiar areas only. Then, when cars starting appearing out of thin air (my islands were getting smaller) I had VERY strong intuition to stop. And I did. Cold turkey. That's the best way to break a habit. I actually felt so relieved when I stopped driving, it was scary. I'll tell you another time the adventures of no longer driving as a young adult living in a rural area.
Jodi
The disease referred to as RP effects both acuity and field of vision. You are first effected at night and then eventually during the day. Each individual progresses differently. But, ultimately, you can lose all your vision like my Uncle and my Grandfather did.
It is hard to explain what I see. I have small "islands" that I see out of. Therefore, if you are in my field of vision, I may see it and if not, then it is not there. But, if I move my head I may see it. So I do ALOT of scanning!
It is a challenge for people because sometimes I see something and sometimes I do not. Even when I do see something, it is very unclear with no details. So, for example, if I look up at a tree and see something moving, I may say I saw it! But really, I only saw "something" move. I could never identify it in a line up. But, if someone tells me to look into the tree and look for something, the chances of me finding it is slim to none. Ironically, this is frustrating to people...how funny is that!
I get by with the attitude to "just go for it." There is a safety factor but I do OK 90% of the time. The other 10% I just have to laugh and say, "didn't see that, oops!"
At least I stopped driving almost nine years ago. First, I had just stopped driving at night, but continued during the day. Then, I started only driving during the day in familiar areas only. Then, when cars starting appearing out of thin air (my islands were getting smaller) I had VERY strong intuition to stop. And I did. Cold turkey. That's the best way to break a habit. I actually felt so relieved when I stopped driving, it was scary. I'll tell you another time the adventures of no longer driving as a young adult living in a rural area.
Jodi
Why A Blog?
A blog? For fun! And to educate and share with friends, family, and curious people how my sister, Janice and I (Jodi) manage with low vision. We will voice our experiences through our eyes :)
Many people often ask the same questions and we hope to answer those questions through this blog.
We hope you enjoy reading our adventures with Life.
Jodi
Many people often ask the same questions and we hope to answer those questions through this blog.
We hope you enjoy reading our adventures with Life.
Jodi
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