Posted on September 30, 2006 at 10:19 AM
As I mentioned earlier, I had asked those in the OI community to send me their stories to post during the blogathon. This is the first one I received and it is from Kristal, a young woman who recently graduated High School last spring. Here are her words:
Please allow me to introduce myself. My name is Kristal Nemeroff and I am eighteen years old. I have a story to share with you about overcoming a genetic brittle bone disease called Osteogenesis Imperfecta. Surprisingly, more people have heard of less common diseases like Progeria then Osteogenesis Imperfecta (OI). OI is a physical disease that affects one person in every 20,000 - 30,000 people.
My family knew that I was going to have OI since I was in utero. During an ultrasound, doctors discovered that I had a fractured right femur a few months into my mother's pregnancy. Upon this discovery, when my mom was six months pregnant, the doctors took her and my father into a room and asked them if they wanted to terminate the pregnancy. My parents were so appalled that they walked out of that hospital and never went back again! I could not be more thankful of my parents' fearless decision to raise an OI child.
Appropriately, they named me Kristal. My Mom chose this name because crystals are usually fragile, just like my bones. She didn't like the "cry" in crystal and she changed the first three letters. I see now why she changed them. I grew up with lots of fractures, lots of surgeries, and lots of casts, but never grew up with self-pity. In fact, I was taught from my Nana at a very young age that "self-pity stinks!" I had my first fracture when I was six weeks old. I broke my left femur and was put into a tiny spica cast to heal. Throughout my short lifetime, I have had approximately 10 surgeries and 25 broken bones. I have broken my femurs and fibulas many times. I've also broken my arms, vertebrae, ribs, fingers, and toes before. When I was young I would break ribs from something as simple as a bad case of the hiccups!
OI bones can bow outward due to gravity but I am amazingly 4' 6'' tall, which is pretty incredible for someone with OI. I am in a research study at the National Institutes of Health who study OI children from infancy to adulthood. It has been over a year since my last fracture and this has been a huge accomplishment for me. Every single break and surgery just makes me stronger, although it is a scary experience. During each surgery, I have to get my femur broken (if it isn't broken already) and re-rodded. I have metal rods placed in the center of my femurs to give them stability so that I can walk. After surgery, I have to manage a spica cast for six to eight weeks that basically goes from my ribs down.
One of the most terrible feelings I have ever felt, is the feeling of walking into an operating room, knowing that it will be months before I will walk again. I remember waking up in recovery rooms groggy, sad, and alone. I would feel more defeated by the fact that I was lying in a cast in a hospital bed then pain from the surgery itself. The pain of a femur fracture is something indescribable. It is one of those things that you have to experience to fully understand. I never once questioned my faith, because through those hard times, it was all that I had.
My "true life story" is about conquering OI. So many people take walking for granted, but for me, it was a goal and a dream. I used to walk when I was young, but a vicious cycle of fractures made it hard to do as I got older. I used to use a wheelchair and a walker, but now I have accomplished my dream of walking independently. I have always believed in overcoming every obstacle. When I decided that I was going to walk on
graduation to get my high school diploma, I put my words into actions.
I began doing physical therapy at home twice a day EVERY day. I think I might have driven my Mother crazy with my loud music and daily exercise routine, but she knew that I wasn't going to let this dream go. She and I were both nervous about me getting off of the walker and onto a cane full time, but It was a risk I had to take. I would literally be in tears working the muscles that had grown so weak from atrophy due to surgeries, but I would push through it. I knew that if God wanted me to walk, he would somehow help me through it. There were times when I didn't know if I was going to be able to do it. I was just being hopeful and I had this overwhelming desire to walk to get my diploma. When I had my surgery back in ninth grade, I didn't think I'd be able to pull it off. Even after breaking my Fibula in a library in May of 2005 I didn't think I'd be able to do it. By the end of the day I always felt very fatigued, but it was the best feeling of exhaustion ever. Every night after I finished exercising I would thank God that he kept me safe. I knew that I wasn't alone. I knew that God would help me. I'm not sure if it was the exercise or the prayer that let me walk.
On graduation day, I was more excited to walk to get my diploma then to actually get my diploma itself. Oddly enough, I was in the shower when it really hit me, I was going to accomplish my dream of walking on graduation day! I exceeded my own expectations for myself, because not only did I walk on graduation, I kept up with my classmates at graduation practice. I don't know how many times I had to march down that football field, but I did it. It was hard to keep up because one stride of the people in front of me was probably three of my tiny strides, but I actually did it.
Not only did I walk on graduation, I graduated Summa Cum Laude. I've often had to miss school for long periods of time due to fractures but I still managed to keep my grades high. I ranked in the top 5% of my class.
"Mind is everything: muscle-pieces of rubber. All that I am, I am because of my mind." (Paavo Nurmi)
I find this quote very true and inspiring. I am who I am today because of how I think and work.
I feel like I beat OI, that walk was my victory walk. You have to understand that it has taken me so long, and it's taken so much hard work to be able to do something that everyone else usually takes for granted. The hardest step was getting off of my walker for good. It was one of the most frightening steps I had to take because it is extremely risky. All it would take was one wrong step or a tiny mistake and I would have to start all over again. I have broken many bones and endured a lot of pain. I am so
fortunate, how can I ever thank God enough? I don't think I can. I don't think I would have even tried to get this far if I didn't have God in my life. I think I'm starting to understand the "whys" and "hows" I've asked him all my life. I know this may sound hard to understand, but I feel blessed that I have OI. I've learned more about life from what I've had to go through then I ever thought I would. I would never change my past. I may have brittle bones, but I have one tough soul. And as I write this, I am sitting here in my college dorm praying that God will continue to teach me about life, lead me to an amazing future, keep me safe, and do the same for you.
I am a very strong person although my bones are weak. Nothing can stop me from doing the things I love to do!
Thank you for sharing your story Kristal.