An older child with JRA tells her story. (I have written about Nicole and Ronee' and their struggle with JRA; now it is time to hear from someone who is older who is dealing with the ramifications of the disease.)
My name is Hattie Dianne Wilson. I look like your basic teenager when you first see me. But looks can be deceiving at times.
I happen to be chronically ill. That is, I have a disease that has affected just about every aspect of my life. (I am 15 years old.) I have juvenile rheumatoid arthritis, which has affected my joints and my ability to walk well and has caused me unending moments of pain. I was first diagnosed with JRA when I was six; I have lived with this JRA for 9 years now, and it isn't easy, believe you me! I am picked on by classmates, and other than my friends from camp, I don't have much in the way of friends at school. School is oftentimes torture, and I don't like school all that much because of all the teasing that I have to endure each and every day.
My fingers and knuckles are rather deformed; this is usually the first clue to knowing that I have something wrong. I also tend to waddle when I walk because the arthritis has affected the bones in my knees, feet, and ankles; and it has also affected my hips. I usually use forearm (Lofstrand) crutches when I walk, but I sometimes use a wheelchair, especially if I am having what is known in arthritis circles as a "flare", which is where my disease is most active. I have the severe, or "systemic" form of JRA, which simply means that the arthritis can affect my bodily organs (kidneys, liver, stomach, lungs, etc.) in addition to my joints. Whenever I have a "flare", I get a fever, intense, severe pain that is often unrelenting, a telltale rash on my face and cheeks (but nowhere else), an upset stomach or chest pains, and severely inflamed joints. Sometimes I will get so sick I will then end up in the hospital for a few days to a week until they get my flaring under control. I am also given powerful medications that I can't get when I am NOT in the hospital.
Every summer, I attend a camp here in town for kids who have JRA, and the camp is called "Camp SteppingStone"; and it is put on by the local chapter of the Arthritis Foundation. The kids all have varying degrees of JRA, and the kids range in age from 6 on up to 19. I have been going to Camp SteppingStone since I was 8, and I have made many wonderful and lasting friendships with kids of all ages. Some of my best friends I have met at Camp S. include Nicole Aldape and HER best friend, Ronee' Le-Anne Reaux (they are ten), Gareth Teeters (he is 13), and probably MY best friend, Trisha Leconque. (She is my age, but doesn't seem to have JRA as bad as I do; still, she goes to the camp each year.) I am especially close to Trisha; she is funny, and she and I can talk to each other about practically anything!
As I said, my name is Hattie Wilson, and I am 15. I have lived here in Nashville, Tennessee, all my life, and I live in a nice blue house with my momma and poppa, and my two younger sisters, Morganna and Trinity, who are 8 and 4. I had a baby brother, Curtis, but he had cancer, and he died last year. He wasn't quite two when he died, and I still miss him terribly. I can't look at his toys or his room or his picture without crying.
I have struggled practically all my life with my JRA, but it seems that since Curtis' death last year, it has only gotten worse; and I am having more flares now than I have had since I was first diagnosed. My doctor, Dr. Hanson, says it is probably due to the stress of my brother being so sick and then dying; and that sometimes happens; but she has been an invaluable help to me. She has given me exercises to help my joints, and she has told me that if I ever need to talk, she would be more than happy to talk with me. She knows I am having a tough time emotionally and physically, and I am so glad that she is there for me. She is truly an angel, and I wish more of my doctors were as open or as caring as she is.
Well, that is my story. I will write more someday. So long for now!
i agree with mark, your stories reflect your heart, and the ability to transform your characters into real voices is extraordinary. excellent! (((HUGS))) and love, karla. :)
you have a way with the changing voice, with the alternate perspective, writer. i like the way that yu can pick up these disparate voices and make them all sound real. i see that ou are building a body of work. with each entry into this series, your style becomes more fluid, each voice, more real. it does read as if these excerpts are biographical, which is a testament to your growing talent. keep writing, soul. and peace.
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