I was ten months old when I was diagnosed. After my second round in traction for femur fractures, the doctor advised my parents to take me home but try not to get too attached.
A person with brittle bones disease, osteogenesis imperfecta, OI, can look like every other person or they can present as extremely small, distorted and very disabled. It really has no rhyme or reason. It is a collagen disorder and can appear in a family seemingly at random.
OI in all of its extreme presentations has a cluster of symptoms. Besides un-earned and unexplained fractures, a person with OI can have shallow, loose joints, blue scelera (whites of our eyes), spinal curvatures, compression fractures, sweating at rest, and a general blessing of being good with words. Okay, that last part is not on the list. We can also have short stature.
I had over ninety fractures before high school. I spent a lot of time in body casts, arm and leg casts and a few rounds of traction.
I began to walk when I was ten years old, I never got really good at it and when I insist on walking during family outings my darling husband and children spend much of their time waiting for me to catch up. This is where a wheelchair is the best option.
Recently, I found myself injury free. Nothing out of the ordinary background pain was bothering me. I started a new trend of going to the gym on every week-day. On the treadmill I enjoy the freedom of clinging to the hand grips, cane lying along the side, service dog, Havan, on a down stay below the deck and most of all the ground is even and I don’t limp.
I had done 38 week-days in a row and was becoming rather full of myself.
On the morning of my 39th day, two weeks ago Thursday, I shrugged off a feather blanket in just the right way to cause my humorous, (upper arm bone) to come out of its rather shallow home. I have only a few ligaments attached on that part of my arm. OI brings wear and tear. A pop and a mournful curse word and two weeks later I am feeling just about ready to start a new goal.
Breaks, sprains, pulls, they all come to people with OI at the silliest and most inconvenient times. Just when we start to feel all of the world is normal some slight unexplainable injury happens and we feel betrayed by our bodies.
Would I trade this in for anything? Would I like to be taller than three feet even? Would life have been easier without a visible disadvantage?
I can say yes to all of those questions, I have spent my lifetime working hard to achieve what an average person has. I’ve actually done most of it.
I’ve gone to college, have a husband, family, mortgage, dental bills, just like most but I do feel I could have done much much more with a more reliable body.
As disabilities go, though, I am okay with the inconvenience of OI, for me, that’s life. Life is what you do with your time, how you see the world, how you interact and react. Life is and why would I look that gift horse in the mouth?
For more information on Osteogenesis Imperfecta or Canine Companions for Independence click those links.
Thanks for listening to me as I go a little stir crazy. Here’s me hoping to get back to that gym. Feel free to comment, see you next post.