Osteogenesis Imperfecta.
That’s a term that may sound foreign to you — it may also sound like a mouthful, which is fine — so you can call it “OI” for short. Or you can call it “brittle bone disease," because that’s basically what those two words stand for. By brittle bone disease, I mean that those who have this disease can fracture their bones a lot easier than someone who does not have the disease.The disease can range into four types that vary in symptoms, physical attributes and fracture significance.
Growing up I was told I had type three.
Yep, I was born with Osteogenesis Imperfecta. However, I never really focused on the type that the doctors labeled me as. I focused on the Osteogenesis Imperfecta community as a whole and their “unbreakable spirit.”
You see, that’s our motto- “unbreakable spirit,” and I think that it’s the best of the best. It’s a phrase that I have been trying to live up to.
Growing up with OI meant a lot of time in and out of the hospital. It’s safe to say that Hasbro Children’s Hospital became my second home. I hope that doesn't come across as a sad, dis-heartening sentence, because I have so many positive childhood memories from that hospital. I can thank the nurses for that, as well as my family and friends.
It’s hard not laugh and feel cheerful when your dad is using a straw to make spitballs or your older sister gets clay stuck to the hospital ceiling.
It’s hard not to smile when you think about the many trips your mom would take you on in the hospital wagon so you wouldn’t become sick of your room. Or your brother sitting at the end of your bed as you play whatever video game system the playroom had to offer. Yeah, my family has always been my biggest support system and the reason why I always have good childhood memories to look back on.
As I grew older with my disease, I started to become more adventurous. I thank my friends for that. They’re always willing to help me try and experience the exciting parts of life. They’ve always seen me and the person that I am, rather than just looking at me and seeing my wheelchair. I can’t thank them enough for that and I often think of how lucky I am to have found them.
I can also thank my parents for my independent side. My dad has OI as well and all my life he has been teaching me tips and tricks on how to maneuver my chair, make my cast itch less and so on. Last week, he even diagnosed my injured shoulder before the doctor could. We may or may not have high-fived when the doctor confirmed he was right. My mom, she’s always been my number one supporter through every fracture, surgery, or physical therapy session. I don’t know what I’d do without that woman. I know she worries a lot, especially when I go out of my comfort zone, but she’s never once held me back and I’m very thankful for that.
My academic independence comes from the support of teachers and aids who looked at me and saw a smart, capable girl. If they’re reading this, they know who they are. Thank you for preparing me for college physically, and mentally (and for putting up with any of my stressed-out, dramatic, and occasionally sassy mood swings).
I’ve had this disease for twenty-years and I know it’s not going anywhere. I’ve embraced it, I’ve always had and I hope the same is happening for those who live with OI too. Though I know our experiences with the disease may be different, may our motto “unbreakable spirit” ring true for them.
I often think of One Republic’s song “I Lived” and the lyric “With every broken bone, I swear I lived."
Life is unpredictable, but I know my adventure isn’t over yet. I’ve overcome many obstacles and every broken bone, surgery, and hospital stay has brought me to new points in my life. Once I heal from this current shoulder fracture that I have, I’ll go back into the world prepared for new experiences. It’s inevitable that I’ll break more bones in the future, I know this. But, I won’t let that hold me back.
At the end of the day, nothing will break my spirit.
