It's Official, My Thoughts and Feelings

Finally after 23 years in the dark, I have been diagnosed. I have been to numerous Optometrists throughout my life who never seemed to be able to figure me out. Growing up I was made to wear glasses that didn't help me. I went through a stint of therapy that didn't seem to help either.

Most recently Sharrid and I decided that we would pursue the problem further than we ever have before. Last spring I started going to the doctors. First I went to a regular Optometrist to have some regular testing done on my eyes and to get a referral. When he gave me a copy of my records I saw that he wrote under the "notes" section: "Left eye is useless, Right eye is horrible. Vision impaired is Neurological." That pretty much sums it up.

I then took those records of basic eye testing and went to the only Neuro Opthamologist in the state of Arizona. His name is Dr. Thomas Wolf and he is located in Scottsdale. He's an older man with white hair and has a very business like manner. He's serious and I was okay with that. I told him everything about my eyes and my past. After more testing including a look at the heads of my Optic Nerves, he ordered an MRI on the brain to confirm what he found. Meanwhile he told me that my Optic Nerves were too small and too pale and that there was nothing that could fix it right now. I went home and googled what he told me and found my diagnoses on my own. I think he wanted to get the MRI results back before he diagnosed me as you cannot see the actual Optic Nerve without one, only the heads. As soon as I started reading what I researched, I knew it. I still wanted the diagnoses from him though. I did do the MRI in early October after some minor set backs (I highly recommend being knocked out for one of those) and just got the results back. The MRI came back normal and everything looks good, keeping in mind that what he told me about my optic nerves is still true. I then checked with his office and sure enough he diagnosed me with the same thing I found through my research. I have a follow up with him in February......possibly the last time I see him. I'll always be very grateful to that man, Dr. Wolf. Whoever he is, he's helped me in my journey. He's finally given me a diagnoses which is HUGE for me right now. It's been so frustrating not having even a name to tell people. You'd be surprised how stupid you feel trying to explain something like this to people without having a legitimate name at the very least.

I have Optic Nerve Hypoplasia. It is a birth defect basically. Hypoplasia means underdeveloped. In this case the optic nerves (which are the main nerves that travel from the eye to the brain) are underdeveloped. There is a process of development and then pruning of the optic nerves at about 10-12 weeks gestation. Either the optic nerves were just underdeveloped or they were developed and then pruned too much. Either way, it doesn't really matter. Like I said, it occurs at about 12 weeks pregnant and 70% of the time the mother has no risk factors and it's completely random. The smaller the optic nerve, the less sight you'll have to travel through. Everybody has visual fibers that spread out of the optic nerve so to say and cover the head of the optic nerve which is right against the eye kind of. You have visual fibers for every part of your vision, peripheral, central. With Optic Nerve Hypoplasia (ONH) some or even all of those fibers are dead. For me personally I would guess that the fibers on the outside and around the top and bottem are decent (peripheral, for instance the vision that lets you know a ball is flying side ways towards your head or someone is standing behind you) The fibers that are right in the middle and aren't spread out to the edges are not so good and most likely there are a lot of dead fibers in that area. (central vision, for instance the vision you use to read and see daily things right in front of you) I know it's hard to understand the fibers but it will be easier when you see the pictures below later.

People with ONH most likely also have Nystagmus which is a "wandering eye" that has little to no control and has a hard time focusing. It's so weak that the other eye takes over it and even though it's not blind it is useless unless forced to use by covering the strong eye. I have Nystagmus with my Left eye. I don't use it other than for peripheral vision and I cannot open that eye while the other is closed, although I can open my strong eye while the left weak eye is closed. Also I cannot wink with that weak eye.

15-25% of infants with vision loss at birth have ONH. "Several hundred patients have been seen and diagnosed but there has never been one family with more than one ONH child. So whatever the reason for ONH, it appears to be a fleeting, difficult problem to solve or get a better hold of in terms of uncovering the reason or cause of the condition"

There is no cure or treatment for ONH at this time. It is not progressive and does not get worse with time, nor does it really get better with time. It's constant. It is not hereditary and is completely random. It is one of the 3 most common cases of vision loss in children. Research is underway and looks promising. Some even say that treatment can be found through stem cells from umbilical cords. I am just glad I have a name for my problem so that I can keep my ears and eyes open for the cure or treatment that will inevitably come.

ONH is very broad. Vision can range from blindness and only light and dark perception to nearly perfect vision. It depends on how many optic nerve fibers have died off. ONH can also affect or cause other problems in the brain and it has something to do with the pituitary gland in the back of the brain which basically controls your whole body. So people with ONH can have Thyroid problems, growth problems and even mental retardation. I have been blessed to live a normal life with only very bad eyesight.

People who have ONH (like myself) will describe a lack of detail (depressed visual field) but that the lack of detail is not comparable to the blurred reduction in vision when a person removes their glasses. EXACTLY! It is so hard to explain that I can't see certain things and that there isn't enough detail but that my vision is clear without blur.

Because ONH and the pituitary gland have some sort of relationship or connection, someone with ONH may experience these things that are related: bad depth perception, low blood sugar, hypoglycemia, fast metabolism, irregular menstrual cycles. That explains that then huh!?

This is a picture of a healthy normal optic nerve head. The color the brightness and the yellow opening is nice and big and bright.

This is a picture of an optic nerve head that mine would look like. The coloring is dark and drab compared to the other one. The opening is small and doesn't have the yellow glow that the other one does. The darkness around the outside and on the left side there are probably the places where the fibers died off during the pregnancy.

I have been doing a video diary/journal of this whole experience and also talking about my past as far as my visual history and how I have coped growing up with the problem. I also share significant stories of my life that might have to do with my vision or overcoming the hardships of my vision. I share my thoughts and feelings in the journal. It's an ongoing project but I think that we're closing a chapter here and we'll be playing the waiting game for a while until another chapter opens up.

This latest experience has opened up new thoughts of my own to me. It has made me think of how much longer I might have to live with this and where I'd like to be if that's the case. It has made me think of where it would be easiest and best for me to raise my children. It has made me realize how scared I am to send my children out to school and into the "normal" world. It has made me feel extremely proud of myself and how I have "fit in" and how I have compensated and pretended and faked it and slid by and worked 10 times harder than anyone else to do a certain something, It has made me realize how much we didn't know in the past and how frustrating it was. It has made me realize the true artist that I am. It scares me to think that fixing the problem would change that, that I wouldn't "feel" so much anymore, that I would come about it another way, but I can never let that happen. When I dance, I do it well because I feel so much, not because I've gone through any steps a million times, it's because I can feel what that artist is feeling from that music and I can relate to that so easily because it's naturally what I feel also. I don't write music because I studied music for years and I know what I'm doing and I know all of my notes. I don't. I write music because I was extremely inspired beyond all imagination by a person that has now been and done so much for me, and because I prayed to be able to do it, like him. I've never been inspired like that before and I have never had a stronger desire to know someone like that before, to really know them. I have never had an answer to prayer like that before or after, ever. I play music because I can feel it, not because I know my notes and not because I know how to hold my bass frat right and not because I can read music. I play music because I can feel it. I never want to lose that gift, that feeling that I do things by. I believe that I might feel that so much stronger because my vision is weaker. People who can't see, feel. I didn't play basketball for any other reason other than it came natural and I loved it. I didn't learn to dribble and shoot, I just did it. I have been thinking of all the normal things that I have been able to do throughout my life and all the normal things that I shouldn't have ever been able to do.....but did anyway. This has all made me think of the people who have been the most influential in my life and what they've done to me and what they've been for me and how it is that I even came across them and why, and what does it mean, and basically it means the world to me and my life because of what they did for me and they made my life. I know I was guided to some and was inspired to know them and received personal revelation that they were good and that I should know them. I'll never forget where I was sitting or what I was looking at or doing when those things came to me. I'm so grateful I was able to see who the people really were and I got a glimpse of the eternal person with each of them. I'm so grateful for these people that made my life and I feel so much love for them. I have no room for any other. I'm beyond feeling, that's how much. It's constantly overflowing and it turns to pain because of how much it is and because I can't bottle it, I can't contain it, I can't control it. It's so much that if I think about it I can't not cry. Part of the pain comes because most of these people are gone now and oh.....they meant the world to me and even though it might very well be for the better, I miss them so much and I think about them everyday and what they were and still are for me. It makes me so sad that they're gone because maybe I don't need them anymore, maybe they taught me what I needed and guided me to where I ought to be but not just for me, this world was a better place with every one of them, profoundly better, cleaner, more righteous, more giving, more meek, more peaceful, more friendly, better. So much better. And we're so much worse off without them but I have to let their influence change me and live in me and now I have to take it and live it and try and make the difference like they did. I won't let my people go in vain. Thank you so much to my parents. They have been the best. I owe them everything I am. Thank you so much to Michael who inspired me, taught me, made me so happy, made me so sad, was my example, showed me truth, and integrity, and right, and human, and eternal, and opposition, and everything, didn't make me "want" to be a better person, but just MADE me a better person hundreds of times over and made me love being a better person, all by knowing him alone. Thank you so much to Kim, who had faith in me when I didn't, who had confidence and knowing about me when I didn't, who picked me up and molded me and strengthened me with her belief, who showed me integrity, and hard work, and optimism, and press on, and inspired me to be the best I could. She helped me survive mentally and emotionally. She picked me up when I had been dropped and when I thought I'd lost my identity, she basically saved me from a dark void. Thank you so much to Fred, a true Christlike example to me. Thank you so much to Connie who has truly been my best friend for the past five years, who helped me in a difficult time of my life, a time of change and a different season. You have been my ear, my microphone, my diary, my sounding board. You have looked out for me and I would be miserable without you. You are my best friend and I love you so much. The things we have in common are so in common and bring us so close and the differences we have shine and make us know each other better and learn from each other. Thank you for letting me be myself, as quirky and eccentric and trendy and artistic as that might be. Thank you so much to Alma who also saved me from darkness. He held me, blessed me and was sensitive. He dried my tears when my feelings were hurt badly. He showed me what Christ would have done and I saw Him inside of Alma. He wrote me. He didn't forget me. He accepted me and showed true love. Thank you so much. I'm proud that despite the problem I have, I still became the person I always would have been, an athlete, a dancer, a poet, a writer, a musician, an artist. I'm so thankful for these people. Thank you so much. I have a lot to look forward to and a lot to look back on in gratefulness. I have to thank these people right now at this point. These are the things that I've been feeling.