On Her Blindness

I have mentioned before that I have a thing for English lit, well strangely enough I kind of like John Milton. Paradise Lost has meaning to me that few people will understand. Perhaps one poem will always come to mind. If you graduated from Hamilton High School after me then when you studied Milton with Rich you heard about me. Charlotte always mentions my relationship with this poem. Now at the time I really didn't realize how much emotion I brought with my recitation of the poem , but now I guess I understand. The poem is as follows:

On His Blindness

When I consider how my light is spent,
Ere half my days in this dark world an wide,
And that one talent which is death to hide
Lodged with me useless, though my soul more bent
To serve therewith my Maker, and present
My true account, lest he returning chide,
"Doth God exact day-labor light denied?"
I fondly ask, But Patience, to prevent
That murmur, soon replies "God doth not need
Either man's work or his own gifts; who best
Bear his mild yoke, they serve him best. His state
Is kingly: thousands at his bidding speed,
And post o'er land and ocean without rest;
They also serve who only stand and wait.

Now you can take from what you want of that poem or if you want an explanation then surf the web. The poem itself has meant a variety of things to me personally over the years. Different lines have come to me in different situations, but I am primarily gong to stick with one in this blog...."When I consider how my light is spent."
For many of you, you may think about this line as referring to what have you done with your life and honestly it kind of does for me, but in the following rambling blog you may come to understand why it has such an impact one me. Almost everyone who reads this will not read this with shock , but I am blind...well legally blind. You can go ahead and assume what you want but you should know by now what assuming gets you. Get ready this is going to be a long one.
As an infant my parents noticed something did not seem right with my vision. I would often gaze at the sun for periods of time, but it was obvious that is was painful, but I continued to do it. By the time I started walking it became more evident that something was not right because I stumbled and would walk into walls. Finally after going through a few doctors and the consideration to travel great distances to figure out the problem, I was diagnosed with Congenital Nystagmus (http://nystagmus.org/aboutn.html) will call CN, and Retinal Cone Dystrophy (http://www.naturaleyecare.com/diseases.asp?d_num=35) which Ill call RCD. I hope these links work. Now there are many sites to check out if you just Google the two diseases and if you are a facebook friend I belong to one group about CN but there are some related to RCD, but I feel like these two sites I linked have some good information. Let me begin by saying everything that you find does not necessarily mean I suffer from it. Also I really do not want to give lengthy descriptions of the diseases or list every little thing I suffer from. Read the sites then ask what you want. I should also say though I can sometimes be sensitive about it, so if we are not close friends do not expect me to to be completely open.
Okay so I will answer the most popular question, no I do not drive. Can I? Yeah I now how to, but I am mature enough to know that it would not be the wisest decision. I have considered using some new technology to drive at certain times of the day. There are people who suffer from CN who drive, but the thing is the two diseases combined is often the key reason why people like me can not drive. I guess RCD would be the primary disease because CN can be a result of it. My cones and rods do not operate correctly. Light really bothers me, but the upside I can see in the dark like a bat. If I have been in bright lights for long periods of time throughout the day then I get a headache. Also RCD causes some types of colorblindness. I can not explain my colorblindness, so please do not ask. I see shades of color but sometimes I can not tell the differences in blues and greens. I am more self conscious about this than any other part of the diseases. I will definitely joke about it to people who are closest to me, but if you are not do not go there because I will get irritated with you. My close family and friends just usually mention a lot of color talk. For example, they might say how do you like that pink shirt, etc. If you do the research you will find CN involves eye movement. Well I can not notice it, but my mom could always tell when I was sick because she said my eyes would move more. I do have a null that helps me focus but it really causes neck problems. Yes I definitely have to hold things up close to see because glasses can only do so much for someone who is legally blind.
Let me give you a little history. As a child i had to wear dark glasses. Of course ignorant people would always make jokes about it (Lesson: Be careful about sarcastically making fun of individuals because you never know if something is wrong with them). People would call me a little movie star or question why I did not take them off inside. (Thankfully my aunt Teena usually had some quick remark to hit them with...I guess I got that from her.) The reason was because I was extremely more light sensitive as a child. I am thankful that I wore them because now my eyes are stronger and most likely my sight will not deteriorate any faster than a normal aging person. I still wear sunglasses most of the time I am outside, but not indoors. I do use transition lenses, but I honestly like my polarized lenses in sunglasses because they are darker. You know I always liked the song " I Wear My Sunglasses at Night."
School was a major issue. At first, many people (okay some educators) felt like I should not go to a regular school, but my grandmother told my mother no way). They knew I was already pretty smart for my age since I could already read and do a lot of other things. My family just began to push me harder. My first teacher (Teena Cantrell) embraced me with no problem. She worked with my parents and did many things for me. Hey I mean she did not worry about me not knowing my colors because I sometimes helped the other children because I was the only one who could read the color name on the side of the crayon. You would thought that would have been enough, but in second graded my teacher seemed to think I needed to go to the "special reading" program, but I showed her. I went and with quickly Mrs. Lawler (glad she took more time to get to now me than my other teacher) realized I was a much better reader than those in my regular class and I did not need her program, but luckily I got to stay in there anyway well until it became evident that I needed to be in the highest level reading class.
I had some teachers who helped me in any way I needed and I had others who I felt just tried to see if I really could not do certain things. Little did they know that just pushed me even harder. I ended up doing quite well in school. For that I want to thank all my family, friends and those special teachers (I would never want to leave anyone out, so I should not try to list them. Of course I have already written about Charlotte).
When it came time to go to college my parents worried about me not being able to drive, but luckily my desire was to go to Freed Hardeman so that was not a problem since the campus was walkable. I did luckily have many friends who took me wherever I needed to go (Just like I did in high school). Lindsey of course always took good care of me. I really did not ever feel like my vision was a problem and really none of my professors ever questioned it. It was also never an issue about getting a job I think Vocational Rehab people had more of an issue than anyone. Do not get me wrong they helped pay for my school, but some of the advisors often were not the most encouraging. Also on a side note some of you may ask why I never considered SSI. Well I had to go through the process before Voc. Rehab give me school money. It was determined that I could do anything a normal teenager could do..apparently the inability to get a driver's license is not that out of the ordinary.
I guess the pessimistic person might say they do not know how I could do certain things in a classroom, but I really have not ever had any trouble, even when it comes to colors. I have worked with so many wonderful people who treat me as if nothing is different about me. I hope to them they do not think I am different because of my eye problems. I am sure anyone I know will tell you I am weird, but not because I can not see lie everyone else.
In conclusion it seems that I will not experience other serious eye problems as I age. I will lose sight just like other people will. As far I driving goes who knows what will happen. I am open to the possibly, but I do not want to put other people in danger. States are beginning to consider ways to allow people with my conditions to drive, so who knows. I know I can go from here to there, but long distances would not be a good idea. I do hope one day to get married and have children. Sometimes it scares me to think I might pass it on, but actually it was never found that I got it genetically, so most likely I will not pass it on. I would never say never.
I try to always explain to people that I might be considered legally blind by medical standards, but I can actually see just not the way everyone else does. In fact I often "see" things that most people miss because they are too busy looking past what is really there.
Sorry this was so long, but I wanted to try to explain a little about me, so when you are around me you are not wondering what seems to be wrong with me.