LIving with Osteogenesis Imperfecta
My name is Tamara Morgan. I am a lover of life, faith, achievement, perseverance, and the well-being of all people. What fuels the demeanor that I have, you ask? Well, it started early on in my life. You see, I have Osteogenesis Imperfecta (O.I.), Type III, aka brittle bone disease. Maybe you’ve seen the documentary film called Children of Glass. It’s a true description of what life with O.I. can be like, though it only covers a small fraction.
Osteogenesis Imperfecta can occur in different ways. If there’s a family history of the condition, the chances of O.I. occurring are greater. In my case, though, there was no family history. I have O.I. because of a spontaneous mutation in just one of our 46 DNA (collagen gene) strands before my conception. The predictions at my birth were pretty grim according to my parents. Once I was older, they told me that the doctors said that I would not live past the age of three years because I’d more than likely die from a brain hemorrhage.
It’s safe to say that there were still many unknowns about O.I. People didn’t understand what full lives one could live with the condition. Thirty-two years later, I’m thankful that those predictions weren’t correct. While I did endure multiple fractures during my youth, like broken arms, collar bones, scapulas, femurs, hips, jaw, ribs, fingers, toes, hands, and knees. And, yes, I still experience some stress fractures in the area of my scapula, but you’ll be surprised to know that my nickname as a child was Bubbles. I definitely know now why. The many people that helped rear me saw a sense of resilience and joy in me about most things. I was bubbly because I had so many siblings to play with and learn from 14 siblings, to be exact. Bubbly because I got to eat a cheese doodle in one hand and a carrot in the other. Bubbly because I got to converse with doctors, nurses, therapists, teachers, and x-ray technicians. Bubbly because I had biological and foster parents that loved me no matter what my physicality was.
No matter what immense pain I might have experienced -- and believe me, the pain can be blinding and immobilizing -- neither the fractures nor the surgeries could stop my laughter, smiles or curiosity about what this great big world had to offer me and everyone I get to share it with. I learned to be appreciative of every moment that I was healthy and without pain, because all of that could change in a blink of an eye. In a blink, I could get a fracture during my sleep by rolling over in bed, or I could break my wrist from pushing my manual wheelchair too fast, or I could fracture my collar bone from giving my younger brother a nudge to move over on the couch. My family instilled in me that my physicality wasn’t all of who I was, but just a small piece of what made me great.
During my adolescent years, I developed some self-doubt because of some teasing, not looking like my peers, and not being treated the same as my peers. This caused me to question the lessons and love I was given by my family. Regardless of the fractures, and the teasing, they never failed to remind me that I could and must contribute to the world in a meaningful way. As so many of our childhood influences determine who we later become in life, I can definitely say the same applies to me. I became fascinated with human behavior and cognition which ultimately led me to pursue a degree in psychology.
That led to a career as a Creative Art Therapist for teens and to pursuing art through painting, drawing and etching. I’ve had the opportunity to travel to 4 countries and 4 states, to participate in multiple disability-awareness events and talks. Last year, as a result of my job at the Adaptive Design Association, Inc. and my amazing Executive Director, I got to visit the White House and lock eyes momentarily with the incredible President Obama. I’m just as glad to be an aunt to nine incredible young ones who make my heart sing every time I see or talk to them. To all of you readers: please never, ever forget what a gift to the world each and every one of you are.