How old are you and what grade are you in?

I'm 17 years old and a senior in high school.

Can you tell us more about your disorder and how you were diagnosed?

On the evening of February 8, 2004, I was jumping on the bed, rocking out to American Idol. All of a sudden, a horrible pain started shooting through my left knee. I had no idea what happened. I went to the doctor several times. At one point, they put my leg in a cast, and that ended up making it worse. Once the cast came off, my leg was stuck in the same position as the cast had held it. I was unable to bend or unbend it, much less walk on it. Luckily, after about two months, I was diagnosed with reflex sympathetic dystrophy (RSD).

I had never heard of RSD before, so I was scared. I don’t think I realized at that time that it was something I could potentially have for the rest of my life. After nine months of intense physical therapy every day, I was finally able to bend, unbend, and walk on my left leg. It’s been seven years now, and I’m much better than I used to be. I’m still in extreme pain every day, but I have learned how to live with it and what makes it better and worse. It’s hard for a lot of people to understand how bad it can be. On the McGill Pain Scale, RSD is rated higher than childbirth, cancer pain, and it’s just above getting a finger amputated with no pain medicine. Some days I can’t walk or leave my bed. The only thing that really distracts me from my pain is reading.

That must make doing the things you love to do really hard. Can you explain what living with constant pain is like?

There are so many things I have to avoid. I’m sensitive to touch, cold, vibration, and so much more. When I’m in pain, it is very difficult to concentrate on what I’m doing. School is so much harder because of that. People would hit my knee just to see how I reacted all through middle school. So, I decided to take my high school classes online because I was getting bullied. My doctor said that getting hit so much at school was ruining all the progress that I had made in physical therapy.

Because of being sensitive to touch, I couldn’t wear pants or sleep under a blanket for years. Crowds make me nervous because I never know when something or someone will touch my knee. Even if someone walks by me holding a sweater and it touches my knee, it hurts. My knee hurts when wind and rain hit it. I stay away from fans and air conditioning vents. A slight touch feels like I’m getting slapped. A harder touch is like being stabbed. Cold is horrible. Winter is the worst time for me. If someone opens a door when I’m nearby and cold air comes in, it’s the most difficult thing imaginable. Going outdoors in the winter is very hard as well.

Vibrations are another difficult thing for my pain. Most people don’t realize how hard it is to avoid vibration. When someone walks by, the floor vibrates. If music or sound is too loud on TV or the radio, that hurts. I even had to stop going to church because of the vibrations from the speakers. Even when a car near mine has loud music on, is going really fast, or a motorcycle drives by, it hurts more than you could ever imagine. Doors slamming, people jumping, and most things that people never think about make my life very difficult. I try not to complain, because that doesn’t make anything better, and I feel like I have to hide my pain to appear normal sometimes.

You mentioned reading was your only escape from your pain. Is that how you came up with the idea for Sheltering Books, Inc.?

I knew that reading distracted me from my pain. I told my doctor this and she told me about the Murphy Harpst Children’s Center in Cedartown, Georgia. It’s a home for some of the most abused children in the country. They built a library, but had no books. My doctor asked me what I did with my books I no longer needed and asked if I would mind donating them. I decided that I had to do more than that. I asked all my friends and neighbors if they had books to donate. I spread fliers around my community asking for book donations as well. Before I knew it, I was swamped with books! I filled their library to capacity at 11,000 books! I realized that if they needed books, then other places that helped children would need books too. So, I started Sheltering Books, Inc. to do just that!

What is the most rewarding part of helping others through Sheltering Books, Inc.?

When I meet the children I help and see how happy a book can make them, I feel amazing. Many of these children have never had the opportunity to read for fun. The cutest little kids will come up to me and thank me. The homeless kids look like any other children you see every day. I feel that if reading can help distract them from their emotional pains, fears, and worries like it helps me with my physical pain, I will do whatever I can to make it possible for them to read. It’s turned out pretty good so far!

How many books have you collected so far?

I have collected more than 56,000 books so far, and I get more donated almost every day. I sort them to make sure the right books go to the right shelters. For example, some shelters request books for boys ages 6 to 12. So I make sure that they get the perfect books for boys in that age range. Luckily, my mother and brothers help me with the sorting.

What is your favorite book?

This question is so hard to answer, because I read different varieties of books. I’m going to say that my favorite is the “Confessions of A Shopaholic” series by Sofia Kinsella. They are adorable, sweet, and funny. The movie is good, but the books are a lot better. I also love mystery and suspense, teen fiction, comedy, and anything about fashion. But I’ll pretty much read anything that sounds interesting.

Besides reading, what are your other hobbies?

I love anything creative. Sewing, painting, designing clothes, and scrapbooking are a lot of fun. I also play the harp, which is a lot of fun but hard to do because it vibrates when you play it, and that hurts my knee. I also love hanging out with friends, shopping, and pageants.

What advice would you give to other girls that want to give back to their communities?

It really is easier then you think. Decide what you want to do and who you want to help. You can do it by yourself or ask a group of friends or classmates to help. If you are collecting items like books or toys, a great way to get donations is to go to garage sales. Ask the person running the sale if they would be interested in donating their items that don’t sell. Many people will donate them. Also, putting fliers all around your community is a great way too. Whatever you do, try to have fun with it. Good luck, girls!

What do you plan to do after high school and in the future?

After high school, I plan to continue working on Sheltering Books and trying to make it as successful as possible. I also want to go to college to become a psychologist to help children with disabilities. I think I would be good at that because I know what it’s like to grow up and to be different from everybody else. I try to turn my pain into something positive, helping others through the gift of reading.

Content last reviewed March 01, 2011
Page last updated March 01, 2011

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