"How are Jayne's Eyes?

People have been asking AJ this question, I just found out. I didn't know people were asking that. Personally I think it is the weirdest question ever. How do you answer that? Fine? Bad? Okay? Can you answer that in one word? What do people really want to know?

So I will tell you how my eyes are doing, not so you feel sorry for me because I hate that. Maybe just for me to write it down so I stop being in denial that I have a problem or that I do need to do something about it.

I have Retinitus Pigmentosa. It is a degenerative hereditary eye disease. I have it, half my siblings have it, my Dad and half his siblings, and many cousins and extended family. And half of my kids will have it though it is not detectable until the teen years usually. First thing to go is night vision. I stopped driving at night in college. I have always had trouble in movie theaters and camping and in the dark.

The past two or three years I have lost more vision. I wonder if pregnancy stress and depetion of my body's resources have contributed to my vision loss. This last fall I really felt like I needed new glasses and that something was wrong. I went to an optometrist and she wrote me a new glasses prescription but said the glasses wouldn't help much. So I went to a specialist who said I should rethink driving and didn't give me too much hope. My visual field test was terrible revealing a lot of blind spots. I also have constant twinkling or light flashes. I don't know what causes this and I didn't understand the doctor's answer.

So if I were to decribe what it is like to look through my eyes I would say hold a piece of saran wrap over your eyes (not your mouth of course) then hold up a donut infront of that so you can see only on the sides and down the middle, and then add some light flashes like when you stand up too fast and get light headed. Yeah, it's probably a good thing I stopped driving before I ran somebody over or killed us all.

I have also stopped wearing my glasses lately because I am not driving and they were giving me headaches. Also the kids have a tendancy to bump me (a lot) and my glasses would get bent and skewed and then my vision was distorted.

Some frustrations have been not driving. Not being able to get out and do things I wanted. I was already resticting my driving so this isn't such a big deal, but it is hard. Another thing is recognizing faces. Since I am seriously near sighted. I don't recognize people from far away. I feel like I am going to a new ward every week because everyone looks so different. The way I recognized someone the week before (a hair style, a red dress) has changed and now they all look new. It takes me three or four times after meeting someone to remember their face and put a name to it. This is why I stare at my kids a lot to burn their cute images in my brain so that I can remember what they look like when I lose more vision.

I feel like I have to tell people about my vision because I need rides but feel bad not returning the favor. When I tell people they say, "That is so hard." and give me the poor you face. I hate this because I am trying to not let it be hard. It is just a change. I have known I would lose my vision since I was 16. I just didn't think it would restrict me so young. Even AJ knew when we were dating that I had some limited vision and that it was deteriorating.

I asked AJ a few weeks ago what it will be like for the kids to have a mom who cannot drive. Who cannot take them to practices, parties, appointments, etc. He was super sweet and gave me an answer that helped me feel good. He said, "They will have a mom who is not so concerned about getting to the next thing."

Some adjustments we have made

I have my own profile on the computer that has super big font. I have stopped driving. AJ has started graveyards so that he is more accessable to do things for and with us. I try to call people in my ward or neighbors to help with grocery shopping and taking the kids places. (I haven't done to much of this yet, but see a time when I will need to do this more.) I shop on Amazon more to buy gifts or other things to appease my love of shopping at Target. We don't go to the movies very much. Since I don't see detail very well I have AJ help me sometimes with plucking my eyebrows and double checking my makeup. Sometimes I get a little carried away with the blush and that is never a good look (unless it is my night on the street corner).

So I have been in denial for a few months but now it is time to do something. I want to try contacts to see if that helps with the blurry nearsightedness and astigmatism. Then I may need to go to low vision rehabilitation wear they can teach me somethings before I lose more vision and would have a harder time learning new things.

Some possitive things about this whole things is that I have a very supportive and loving husband who helps me a ton. Not just with the phyisical loss of my vision but the emotional loss. So many neighbors and ward memebrs have offered to help and I feel like I am giving people an oppurtunity to do service and have the joy that comes from helping others. I am very grateful that we live close to Jeff's school so that I can walk him everyday and be close enough to help and volunteer. I have discovered audio books and love to listen. I can do two things at once and not just sitting and reading. Like I love to listen and put away laundry. You know how much laindry I did while listening to "The Hunger Games"?

So for all those asking how my eyes are doing, there you go. I appreciate your love and concern. I do need help sometimes and I am trying to be as gracious as I can. This has definatly been an adjustment time for us in our marriage and family. But I hope it will make us stronger and closer. And leaning on other people can hopefully mean we have more friends than we would otherwise have.