A story about a young girl who lives with a little understood disability.
My name is Paxton. Paxton Rose Gebhardt. I am 10 years old. I live with my family in Boulder, Colorado.
I look okay on the outside, but on the inside, I am a mess. I was born with pain insensitivity disorder. That means I am unable to feel pain. I can whack my leg or cut myself, or even burn myself, but I don't even know I have done anything until I either look down or hear someone tell me: "Watch out!" It's really weird.
I have all kinds of scars on my body from past injuries, yet I somehow don't let it bother me. I have only heard of maybe two other people with this pain insensitivity disorder; one was a girl named Rebekkah Rachel Cohen, who used to live in California. She's now fourteen or so, and she's having all kinds of problems. In fact, she is in the hospital now as I write, and I guess she is doing better; I don't know. I have tried to e-mail her, but haven't gotten any response. I hope she is okay...
I met Rebekkah Cohen at a picnic last year; met her whole family. (The picnic was for kids who have chronic conditions or disabilities.) She is Jewish. She goes to temple every week, but she also goes to a regular church; she is what is known as a "Messionic" Jew; they believe in Jesus. That's the way she explained it to me.
I have a good family who takes good care of me. I have my mom Avril, my dad Blair, my little four-year-old twin brothers Bridgeton and Brighton, my teenaged brother Ulie (Ulysses), and teenaged sister Greer. Mom wanted to give us kids unusual names; she wanted us to be unique. I guess we are.
Because of my situation, people sometimes act mean towards me. They don't understand that I am disabled; they think that I am only faking my problems. Sometimes I have a lot of problems walking, and sometimes I get tired. That's another thing. Besides my PID, I also have chronic fatigue disorder; I get tired, and I often don't feel my best. I don't do sports because of the danger of getting injured, and dancing is out of the question for me.
Instead, I draw. I am a very good artist--or so I have been told. Some of my drawings have been featured in school art fairs, and I have even showed some of my artwork at art festivals here in Boulder.
I also sing; one of my dreams is to be a country-western songbird. I have sung at different festivals, and I have even met some of my idols: Martina McBride, Trisha Yearwood, Faith Hill, and the biggie, Loretta Lynn, who was really awesome. I even had my picture taken with them; boy, talk about a big thrill for a little girl!! WOW!!
I miss a lot of school because of my CFS, but I am good at making up my classes. I am very smart; I'm in the Gifted/Talented program at Evergreen Elementary, and I love my teachers, particularly Miss Farrera. She's really good. She makes learning fun, and I love the challenge that being in a class for "smart" students provides.
I get bored in regular classes because I already know what is being taught; therefore, I needed more stimulation, more opportunities to expand my cerebral organ. :)
Well, I am going to go now. I hope you enjoyed getting to know me. I am a fun person if you get to know me. I'm loud, I'm brash, and I am not afraid to speak my mind!
I watched a special on T.V. about this disorder. I can't imagine what that must be like to not feel pain... a curse and a blessing, I suppose. Surely is such for the parents. Thanks for enlightening us. Your knowledge and insight into these problems simply amaze me. You do your homework girl! I appreciate that. *smiles* Jean
Reviewed by chris stienstra
9/26/2007
And, we think we have problems....
Wow! This young lady deserves a silver star for valor. A great post to awaken our sometimes "tunnel vision" lives. Thank you for this reality check.
My very best
Chris
for the page to reach out with a linguistic hand, taking readers by the mind and walking them for a moment in each step taken in a world only known through reading the words created is a great gift to bestow. the voice here is irresistably touching.
When we were born, God has assigned us with our special unique talents, regardless of our physical and mental disabilities. We are all valuable children in God's eyes.
Nice to be acquainted with a friend of a Messionic girl, perhaps the adults around can understand tolerance when they see one going on.
Thanks for sharing, and Welcome to Paxton.
Georg
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