Archive for August, 2009

My View from My Eyes

16 months old with my glasses

16 months old with my glasses



My sister reading to me
My sister reading to me

My Eyes From my View

 Last week, I had a doctor appointment to see my eye doctor.  I have seen him since I was a baby. I got my first pair of glasses when I was 8 months old.  During this visit we talked about how people who have neurological disorders may see the world differently than others who don’t struggle with how their brain receives visual information.  My doctor told me that he has made some assumptions about what people with neurological challenges see, but he has not had much input from someone who may be able to share their experiences in detail.  He asked if I could write it for him, so I thought it would be interesting to put it on my blog, since other girls may experience the same thing.  I am really myopic, so my clear vision is within ten inches of my face. 

 I cannot wear eyeglasses for two reasons; one is because they feel so strange and irritating on my face.  I started wearing them as a baby.  I didn’t have the coordination to remove them when I was very little, so I couldn’t get them off. But now, on most days, if someone puts glasses on my face, I can’t get them off fast enough. The second is because I can’t handle what happens in my brain when I wear them. Recently I was able to wear sunglasses for about 20 minutes, but they didn’t correct my vision.  It felt good to not have the sun be so bright, but they irritated my face. 

 I wore eyeglasses until I was five. I couldn’t see any better with them on, than I could with them off.  I hated the way they felt, but I couldn’t remove them until I got a little older.  I took them off and chewed on them so they always had chew marks on the glass.  I lost many pair because they got dropped and my parents didn’t see them fall.  The funniest time was when I was about three.  I was in the garden with my mom in my wheelchair.  It was by the pond and there were ducks playing in the pond.  I had dropped my glasses and it wasn’t until my Mom saw the ducks playing with something that she realized it was my glasses.  They took them into the pond, and that was the end of them!

 My doctor said he has made some conclusions about how people with neurological disorders handle information they receive from their eyes.  He has assumed that for many people they can handle information if they don’t look directly at something, but they see it out of their side vision.  It is true for me. If I look directly at something it is only briefly, and only on days I am able to do it.  It is physically painful to be forced to look at something directly in front of me.  I am better able to handle it if it is on the side of me.  I often move my head back and forth in order to not get too much stress from looking directly at it.  It is hardest with people.  They often think I am not paying attention if I don’t look directly at them.  I remember many teachers and therapists insisting that if I didn’t look into their eyes, that I would not be paying attention.  Nothing could be farther from the truth.  I can handle most situations better if I am not forced to look at something. I can see much better and my brain is not stressed if I can use my side vision. There is something inside me that wants to run away when I am forced to look at someone who is inches from my face.  I am sure that many other girls with Rett struggle with this too.  If I look directly at someone it is because I am able to at that moment. But if I’m not able to do that, don’t assume I’m ignoring you.  I am very aware of everything that is happening around me.  If I am fiddling with something it helps to calm my brain.  I can do both.  I don’t need to be forced to look in order to understand.

 My eye doctor said he had some ideas about how some people with neurological disorders process information.  He described looking directly at something is like sand being poured through a funnel.  He said if it is poured slowly it goes through the hole, but if it is poured too fast it gets blocked. He is assuming that looking directly at something is like sand being poured too fast into the funnel. We are not able to handle that much information coming into our brains, but if we use our side vision the information is like sand that is poured slowly.  It comes to our brains slower, and we can handle it better. It is a good description for me. 

 Our world is so full of interesting things to look at.  The trouble is most of us are expected to be thrilled with lots of activity. To me it often gets overwhelming when there is a lot going on.  I can calm myself sometimes by playing with a fiddler.  Today I am able to focus if I have a fork in my hand.  It makes my brain feel relaxed.

 I went to a dance recently with some friends.  It was very loud and there were lots of people.  One of the men was in my face a lot. I couldn’t tell him to back off, and he was just being friendly, but I would not have chosen for him to be that close.  It was a very overwhelming environment, but I could handle it that day. There were a lot of lights, which distract me.

  I read something this morning with my Mom that Carly Fleishmann wrote. It was about how she sees things. She says that when she looks directly at someone, she sees a thousand pictures.  I think that’s a good description about how my brain sees things too, if they are right in front of me.

 Love, Karly

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An Adventerous Life

I went to church this morning with my Mom and Gregg and heard a message that inspired me.  It was about having a spirit that is open to God and receptive. It was the way he described being lead by God.  I have written a number of blogs lately that give you a better idea of my spirit.  I focused for a long time on my physical body, because I hope it helps others who love a Rett girl, but now I think sharing my spiritual life is what I’m suppose to do.  I loved the message today, because when I live aware of God, my life is so much more interesting than if I focused on my physical being.  Giving my life to God, has made my days so much better. I don’t believe that most of the great things that have happened this year would have taken place if God was not involved.  I have no authority on my own.  God has given me places to speak, and music to share and people to love. I would never have been able to make any of these things happen on my own, because people who have my level of disability are not seen as someone who has a lot to say and insights into spiritual things, let alone a relationship with God.  I want to say that even though my life is not easy that I feel content and have goals, and as I sit here today on our couch, I feel love.  I don’t need to have a lot of things, but when I listen to God, he encourages me to connect with someone and when I do it, it is so amazing what happens.  

Love, Karly

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A Special Request




Beau came into the house to meet Deb because it was a hot day.

Beau came into the house to meet Deb because it was a hot day.

 I was so happy to see my new friend Deb this past weekend.  We met at camp in Iowa, and she was able to come to my house for a visit.  It was so fun for both of us to see each other again.  We both work hard to communicate, so it always takes time to get our thoughts out, but it was fun to be together.  While we were visiting we talked about something that both of us experience, and I know most people who have an obvious disability are very conscious of.  It is the way others who are not familiar with us act towards us.  It is often hurtful.


When we were little and people talked baby talk to us, it wasn’t unexpected, but to be an adult in your mind and still be treated like a little girl is incredibly hurtful.  One thing that often happens to those of us who use a wheelchair is people think we are hard of hearing and need to be spoken loudly to.  If we are also non-verbal, people are confident they have us understood as someone who is also lacking in intellect.  It is also interesting how people think that if they speak louder and slower, that we will be able to understand and maybe respond.  For me, in addition to being non-verbal, I don’t often look directly at people.  It is part of Rett where I feel overwhelmed if I look directly at someone.  If I can’t shake their hand, which happens most days, it is the final proof they need that I am a little low intelligent girl that needs their pity.  These are my words, not Deb’s, but as we spoke it was obvious that what we both experience is very similar. 

 If I could ask something of those who are interacting with someone who is non-verbal, it is to always assume we are intelligent and that we have very good hearing.  You can speak to me like you do anyone else my age.  I am capable of understanding.  It never hurts anyone to assume intelligence, but it can cause so much pain to assume they are lacking.  I am aware that most people are uncomfortable if they are talking to someone who cannot communicate back to them, but it is so appreciated by me when people get past their discomfort and just interact normally with me. 

Love, Karly

Deb and me

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Having a Purpose and Direction

This is a tribute to Eunice Shriver who spent her life giving dignity and purpose to people who have disabilities. To honor how she spent her life thinking of what she could do to make a positive difference in this world, and taught her children and others how to be less selfish and more honoring of others everywhere in this world.  I never knew her, but I respect her vision for her life and what she has left behind that gives many of us hope.

 I have been thinking about something this week that I think will help me and may help others.  It is related to my talks at camp about being created for purpose by God.  If we determine with God what we are to do for our lives and don’t have any direction we can lose the vision he has given us.  I don’t want to lose the vision that I have through getting too busy with the things that make life hectic.  If all I did was the things I need to do everyday to be healthy it would be an unfulfilled life. 

 I have so many activities to keep my body well but I still struggle most days. So if I depended on  those things for meaning in my life I would be very depressed, because no matter what I do I can’t stop the hyperventilating or breath holding or physical pain that I experience in my back and neck everyday. Since I try not to focus only on those things I have a life that I love.  I plan on living it fully while I am here on earth. It is not always easy to push myself, but if I sit around and do nothing, my life is pointless.  I try to get up everyday and pray and ask God what I need to do that day and then I do it.  God knows me better than any human so he won’t ask something of me that is impossible for me to do.  It brings me so much joy to know that even I can be helpful to others.  I don’t need to be useless and just keeping myself occupied. 

 Some of the ways God has directed me is through encouraging others.  Sometimes it’s through my blog, or something that I write for my class, and other times it’s sending an email to a friend who is lonely or isolated.  Sometimes it’s going to visit someone who doesn’t have company, like my Grandpa when he was in the nursing home.  Other times it’s creating a card with a photo of something or someone to surprise them and remind them of something positive in their life.  Sometimes I am inspired to call with my Mom’s help and we put the person on speaker phone so I can hear, and then I am able to type my message and my Mom speaks it out loud.  Yesterday, one of my new friends at camp and I chatted on Facebook for a while.  It was great for both of us, because she uses a keyboard as well, so we were able to communicate that way.  If I give someone one of my paintings it is something I am inspired to do if they would be blessed by having it.  

 If I live with this in mind, my days are meaningful and I have things to do that matter to me, and I hope to others.

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