Archive for October, 2008

In Loneliness

October 29, 2008 · Filed under Disability Awareness, Music & Art, Rett Syndrome, Writing · Tagged ,

It isn’t everyday that I feel alone, but I feel it’s necessary to share what it’s like for those of us who are non-verbal when we don’t have friends. I have many people in my life, and I am grateful for that. I don’t live alone, but I am in a time in my life when I don’t have everyday planned out. If we had chosen that I would stay in a program for adults with lots of needs, I would have my days structured by them. To people who are independent this may seem like a logical decision to be in a program where someone else determines the daily routine. But for me, it was oppressive.

I have a great friend who helps me during the day, so I am not entirely alone, but what I and others who are dependent on a caregiver experience, is that most people in our lives are employed to be with us. There is always fear that they will no longer wish to be with us, that their needs are different and that they no longer can be with us. When that takes place, it is scary because it takes so long for someone new to learn how to meet our needs, and even longer for them to really know us. 

There are always people who think they know us, but the information about who we are comes from tests and observations that in no way demonstrate our potential and our hearts. I have met other non-verbal adults who don’t have the support and beliefs of their families. They are known only by their tests, and they live in an isolated existence. If it weren’t for the belief of my family and caregivers, my life would be limited.

I am happier today because I feel hopeful that we will find other adults who are given opportunities to express themselves-who they really are-and that we can share our love of writing, painting and the arts, like music. I want to find that today, but I know it may take some time. I am finding patience today.

Love, Karly 

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Really Being Seen

October 22, 2008 · Filed under Disability Awareness, Rett Syndrome, Writing Memoirs · Tagged ,

It was while watching Oprah with my Mom yesterday, that I realized something important. It was about a Dr that studies brains who had a stroke. She recovered and is able to share her story. It was interesting to me because parts of her story are familiar to me, and yet others are very different. I heard Oprah say it changed her after reading this womans book. I loved to hear about her experience and recovery. She said she would see people who had strokes and brain injuries in a new way. The most profound part for me was the womans experience while in the hospital with the nurses and Drs. She described how she could feel their intentions and energy toward her, and it impacted her feeling either safe or cautious with them. For those who were kind and touched her and tried to connect to her as a person, it changed how she felt about working to heal, and trying to connect to the world around her. It made all the difference if the nurses showed compassion, and saw her. Really saw her.

It was important to hear this message because there are wonderful people in the medical profession, and teaching and caregiving, but they are often very distracted and distant. This was our experience too. If it weren’t for my Mom interfering the thoughts Drs and therapists and teachers had about me, I wouldn’t have a voice, and I certainly wouldn’t be seen for who I am. I would be seen as someone who is silent, unimportant and without purpose, who uses a lot of services, needs a lot of care, makes funny sounds, drools, someone who is a big challenge, someone who just doesn’t fit in.

If those of us who are visibily disabled were treated with the same respect and kindness as the most important person in your life, this world would be so different. But most of us are put in places we are not seen and often go unloved. I know God knows who we are. It’s the only thing that keeps us going sometimes. I am so fortunate to have my family love and respect me. I know I am loved. I am seen. I am unusual that I am still at home with my family. I have some really wonderful people in my life who see me. It is not easy to meet my needs, but I know that what I offer to my family is important to them. And for that I am fortunate and very blessed.

Please give the overlooked people in this world your attention, your goodwill, your respect, your face. Really see them.

love, karly

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It Feels Good to be Me

October 14, 2008 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome

This week was so special. I heard from people in Spain, a small village in southeast England, Hong Kong, the United States, and places I have never heard of like Istanbul. I would never have imagined that something so personal and painful could be used to help people see! (The Cruel Stare) It has been so fun to read the responses from people whose hearts have been changed because of our families painful day. I’ve heard from people, who like me, live in a body that challenges them daily, asking me to continue writing about my experiences. I am so honored by that.

I am very aware that it is not my writing that has opened peoples eyes. It is something God has done. I am cautious because I know it is hard for people to change their behaviors. I want it to happen today. I am eager for it to happen for all my friends around the world who live with great physical and emotional struggles.

I know people are not eager to change their behaviors. I wish I could make it easy for them. I wish they could see our hearts, and know that we would be the best of friends if we were given the chance. I hope you get to know one person who is lonely today. Your kindness could change their lives, and most of all yours.

This week we had 1499 people visit my blogpage. That is a number I never imagined. I know that my blog is being read by thousands and it has also been on a local radio station in our state. I am eager to see what takes place next.

I have been working with our filmaker Dan on my documentary. We are almost finished with the script for the introduction. It takes a long time to make a film, but I want it to be just right. It is not only my story, but millions of people who will not have the priviledge of having their own documentary. I am eager for my words to be accurate. I hope it will help my friends too.

love, karly

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My Gratitude

October 8, 2008 · Filed under Uncategorized

When I read your comments I am so inspired. I had so many people read my writings this week. It seems that my story is helping people discover new things about how to interact with those of us who are non-verbal, but also it has helped people see themselves in a new way.

It gives me hope for my life that my experiences are helping others. The struggles that my family and I have had, seem somehow less of a burden today. It inspires us to hear your kind words and encouragement to continue writing. I have loved to think about what I can do in my life that can matter. I never dreamed that someone who is silent could have such a powerful effect. I am not taking much credit for my ability to write. I know God directed my Mom and I to this method of communication because He had a plan for me.

I am grateful that there are ways of connecting with the world that I never knew about until this year. It is because of my blog that I have a way to speak to the world. Thanks for hearing what I have to say.

I am so aware that there are many of us who live without being noticed because we have no easy way to form words that others can understand. It is because of this that I am able to continue writing in the privacy of my own home and help my friends all over the world who have been misjudged and overlooked. I am with all of you in spirit and I share your struggles. I don’t want you to think that everyday is hard.  It is a great time right now for my family.

Sometimes we create stuggles on our own and those are hard to bear. For those who live with struggles not of their choosing, it is a hard life. However, I sit here this morning feeling great joy and gratitude. The struggles my family has faced on my behalf are coming together into something very beautiful. I hope my story can become part of people’s hearts, and as a result, their actions.

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A Miracle Happened Yesterday

October 6, 2008 · Filed under Disability Awareness, Rett Syndrome, Uncategorized, Writing

I have been so happy today because of what has taken place this weekend. On Friday, I received an email from our pastor Greg Boyd, asking if he could use some of my writing for a sermon he was preparing. He wanted to use “The Cruel Stare” to help with his message. It was so humbling to me because “The Cruel Stare” shared my experience from the previous week at church. It was a message that was not flattering to a church. I was pleased that Greg was open to reading my message and saw it fitting to help us as a church.

This may not be surprising to people who are used to being seen, but for me, someone who is non-verbal, this was an amazing event. He read the entire writing to the congregation out loud and as he read it I could hear crying around us. People rose to their feet to honor and support me and the message. Greg came to me and embraced me and asked me to forgive the church for the ways they have disregarded me and others who are in attendance every week. I don’t want you to think that our church is unfriendly to most people, but it is evident that the church is not much different than any other place I go in the community, where I am invisible or an object of curiosity.

However, my heart is so hopeful today because I know that people were touched by what I wrote, thinking it would only impact a few people who found my blogpage. To have it used for an audience of thousands is a miracle. I know that God was there. I saw it in the faces and the tears of the people who approached me and shared their thoughts with me. I am a stranger to them, but my experience helped God to have a way to touch their hearts and lives. When God is present people are moved to do and see things that they otherwise would not be aware of.

Karly

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Taking Time to Remember

October 1, 2008 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Rett Syndrome, Writing, Writing Memoirs · Tagged

I am amazed by how many people have read my last posting. It is hard to be honest about things like that because people see themselves sometimes. I don’t want to scare people off. I want others to imagine what it is like to receive unkind looks.

I am not in a day program like many of my other classmates who graduated with me. I was so sad when I was in a program with adults with high physical limitations. It didn’t allow me to pursue my dreams, so I spend a lot of time in our community trying to find a place to walk with my walker, trying to find other adults who like to write, paint and share music.

I am not sheltered in a program that has walls that keep others from viewing me. It seems many typical people are not used to seeing adults who are dependent in our community unless it is the mall. I don’t go to the mall. I don’t like shopping all the time. It is not my dream. Other adults cannot always share that they don’t really like walking around Wal-mart or going to the bowling place. I like to bowl if I have a friend to hang out with, but it’s to be with my friend, not because I am disabled and like to bowl.

I hope soon to have other adults like me to do things with. I have to walk in the hospital halls when it is cold or wet because there is no good place for me to walk. I want to have a committed group of people to get together with and share life. I hope I can do this and live at home with my family. It seems like a lot of people have to live in a group home to have friends. I find that sad.

I want to be in my community with my family and have friends too. I don’t think people like me are seen often enough in our communities, so we are objects of curiosity rather than neighbors and friends.

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