Archive for September, 2008

The Cruel Stare

September 28, 2008 · Filed under Facilitated Communication, Rett Syndrome, Uncategorized, Writing Memoirs · Tagged ,

What I have to say today may offend some people. It may make others shout for joy. I am not going to pretend that I am not hurt.

We just returned from our church service and the apple orchard we stopped at on our way home. We all love apple crisp so it seemed like a great day to pick a few apples and make something we all like so much. If I could give you a picture, it would be one you would NOT like to look at. It would be titled, “The Cruel Stare.”

In the picture I am doing what I love with my family. I am at church where I go to learn. I go to see people I know. I go to listen to the music that I can’t sing. I go to hear the Bible that I cannot hold myself.

It is a picture of me trying to be UN-noticed. I am eager to be there. However, I sit on my couch at home today, away from the stares and pauses that people give me whenever I am away from the shelter of home. I don’t think I look odd. In fact, I am told I am a beautiful person, and yet I can’t go anywhere without being stared at. I am not talking about a casual glance.

I am very aware that people are staring at me. It seems even babies are looking at me. The elderly are even more cruel. They act as if I don’t belong there. The children stare as if I’m an object of curiosity. Parents do their own cruel work by ignoring their children who are staring and pointing and gawking.

It is not the kind of stares other people get who are interesting or who are wearing something fun. It is the kind of stare that you would give when you are looking at a car crash, filled with curiosity and the gratitude that it’s not your problem, but the freedom to stare as long as you feel like it until the accident victim gets wheeled away.

The picture is the reality. It is not ok to stare at anyone out of cruel curiosity. It is my experience, and the reality of many of us who live with a physical disability.

It is hard to believe that Jesus would be impressed with the way humans have treated each other. If I understand it correctly, Jesus had great compassion for those who were mistreated and suffered in their bodies. He loved them. He showed compassion to people who were overlooked and begged for food because they couldn’t get their own. How can we be so off course?

We need each other. We need the wisdom and understanding that many people who live with great struggles have. And those of us who live with great physical struggles, need the wise understanding of friends and those who are stronger than we are.

I know that most people do not intend to be cruel, but I’m feeling too sad to share more about this today.

Karly

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In My View

September 26, 2008 · Filed under Uncategorized

I am so excited about what happens when someone really cares about those of us who don’t often get noticed for the right reasons. I am sitting in the paddock this morning with my mom and horse Beau. As usual he is eager to see us and can’t keep his mouth from being busy. He is eager to explore things with his mouth. I guess it’s not surprising he is my horse, because I have always chewed on things since I can remember. He loves the keys on my keyboard, my bandana and just being close. It is inspiring to write in the paddock.  Writing outside helps me focus.

This morning has been so exciting because a woman named Judy has been eager to find a way to include me in her writing and art programs. There are other adults all over the world who like me, are overlooked because no one has taken the time to help them express who they are. It takes more time for me to expose my talents because my physical body has its’ own plan.

If I were free to share myself easily I know I would be a writer and a composer independent of the support necessary to express myself now. I am proud of what I have been able to accomplish with the support of many people. My Mom has worked so hard to help me share who I am. My life would not be anything I would be proud of if my Mom hadn’t worked so hard on my behalf.

I want to honor my sister as well.  She has started teaching a a college in Ohio. She is also a musician and a writer. She was home last week and so fun to be with . I love her.

It has changed everything about my life to have the ability to share this with you today. No one has so little to say that they should live their lives in silence. Thank you for hearing my words.

Karly

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On An Impossible Wonderful Trip

September 18, 2008 · Filed under Uncategorized

From the Van

I can’t begin to tell you how I feel about the last few days. It has been an incredibly challenging and perfectly wonderful trip to the Blackhills. It is the best place I have ever been to. I don’t ever remember being this far from home. I am so grateful that my family and my friend Karen have shared this place with me. It is so beautiful here. I have never dreamed of feeling like this. I don’t want to go home. It is a gift to have the ability to go to places like this. I don’t think most people are aware of what it takes for someone who is physically limited to be here. In our travels I have only seen one other person in a wheelchair.

I think it would be so wonderful to travel often, but I know it would be nearly impossible for me to do that. So I am very happy to be sitting in the shadows of such beauty. The rocks are enormous, the hills are impossible to climb and the animals are so different than the ones I am used to seeing.

I really loved seeing the wild horses. I was so sick that day that I had to lay down in the back of the jeep. Some would say I should have stayed in the RV, but Mom and Gregg asked me if I wanted to go and I said yes. I can be sick anywhere. I didn’t want to miss something that I had planned on for months. I wasn’t dissapointed. The woman that gave us a private tour was so kind to us. She drove us right out to where the horses were and shared so much information with us. That is something I will never forget.

Evening Campfire

I am not eager to go home. I want to stay here and relax in this beautiful place. I feel so content. I have slept better than I have in months.

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Doing the Impossible

September 18, 2008 · Filed under Facilitated Communication, Music & Art, Poetry, Rett Syndrome · Tagged , , ,

I sit in the shadows of the Blackhills and all their beauty.

I am in awe

For me to see the hills has been a great feat

You see, I depend on the legs and backs of many people to enjoy this magnificent place,

I am not alone here.

If I was able, I would drive through the hills, and feed the burros that came up to my car. I would take pictures of buffalo as they came near me and I would run up and down the hills, shouting with joy!

I love my trip, and I love my family.

Thanks to them I have done the impossible!

Writing My Poem

September 16, 2008

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Gratitude

September 18, 2008 · Filed under Rett Syndrome · Tagged , ,

I am sitting on my couch at home, listening to my mom and sister practicing piano and viola for a family wedding.  It is hard to have our vacation over – I looked forward to it for so long.  One of my favorite parts to our trip were the burros that came up to our van looking for treats. There were so many of them eating our buns that the other people were taking pictures of our van. The baby burros were making funny faces with their lips moving fast.

 

I have never seen buffalo before. They were mostly ignoring us, but one of them was running in between cars on the road, and that got us very excited. He was huge! It looked like he could push over a car. It was fun to see him. I love the winding roads through the mountains. Gregg carried me out of our vehicle so we could get a picture together. It was fun and scary because the hill behind us was very steep and very long. The picture was by a tunnel that could only have room for one car at a time.  People were honking as we were getting our picture because they didn’t want to get stuck in the tunnel with another car. It was exciting.

I have many memories from our trip. The best part was, we did it!! It was not easy, but we did an impossible thing. I can’t wait to go somewhere again. It was something I will never forget.

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My First Road Trip

September 7, 2008 · Filed under Music & Art, Rett Syndrome, Uncategorized · Tagged ,

I am so happy about this week. I have never been able to drive for any distance because I couldn’t sit that long in my wheelchair. We could only travel short distances. I want to see the world, but I have only been able to read about it or watch travel videos.

I am so excited about this week, because my mom, stepdad and my friend Karen are going in a motorhome for a long distance trip! This is my first one I can remember. It will be a trip to remember for me. I am so thrilled because we are going to the Blackhills. I think it will be even more wonderful for me because I have never been on a family vacation. I love being with my family and if I can do it in a moving truck, it will be even more exciting!

It is so fun to think about. I hope to see the Wild Horse Sancutary, the hills and have lots of bonfires. My food is ready and we are bringing lots of warm clothes.

I am hoping to write another entry while I am gone and put some pictures on my blogpage. We finally have my music on my homepage. If you haven’t heard my latest song, check it out.

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