Showing posts with label bone deformities. Show all posts

Maybe it was around the time I started jumping, skipping, and running in my walker that my physical therapist decided to switch to crutches. Mind you it wasn't the kind of crutches that dig a deeper pit beneath your arms but the kind you slip your wrists through, and then grip. I'd had my red walker since I was in Kindergarten till the fifth grade, and very rarely did the arm rests need adjusting (maybe once every 3-4 years?). My red walker was like my own mini-fort of safety, confidence, and independence. There were four prongs, the front two were wheels and the rear prongs had rubber stoppers. There was a front piece to it that served to connect everything together, and in my mind also served to stop me from falling over or from otherwise getting hurt. I used to turn around and sit on that front piece (even though it wasn't really a seat, and even though my P.T. said it wasn't safe). I could put my entire weight on that walker! I was able to lift it just enough off the ground to be able to turn corners, or even do a full 360 turn-around. Suffice to say I felt safe in that walker, it was with that piece of equipment that I learned to take my first independent steps in.
So when all of the safety, comfort, and security was stripped away from me I got nervous. Immediately the first thing I noticed while wobbling in my crutches was: there is nothing in front of me. My face could see the immediate floor in front of me. I then noticed how much of my weight I had distributed throughout my forearms with the walker. In crutches all of my weight seemed to be leaning on to two metal extensions, resting on rubber stoppers that were never completely flat on the ground - but instead always at an odd tilt, this made me nervous. What if it slipped? All I could see in my head was the replay of me face planting onto the pavement, crutches flying with arms and legs pointed in every which direction - kind of like a cartoon dog slipping about on ice skates.What if I forgot which I was supposed to move first - my leg or my arm? With the walker everything seemed so basic, so intuitive, it seemed like I had to relearn and reteach my body how to walk again. Had I really taken steps towards my independence? Or was I now just re-inventing the wheel?

"Okay, so which do you want to use today?" My middle school physical therapist had both my red walker and my new silver crutches in front of me. Without hesitation I pointed at my red walker.
"Well let's do some walking with your crutches first okay? And then we can play soccer in your walker, does that sound good?" 
"Fiiiine-uhhh" I grumbled.
Slowly and with a lot of patience from my physical therapist my body became used to the crutches. I found that I was able to stand with a lot more ease, move quicker, and suddenly my movement seemed to flow a lot more naturally. I was no longer pushing and jerking myself forward. Everything seemed so intuitive after a few weeks: I knew just how much to put my crutch forward without over-extending myself, I could match where my foot stepped to with where my crutch was, I understood the cross-rotating pattern of left-right-left-right-crutch-foot-crutch-foot. The weight on the palm of my hands where I gripped loosened over time, I was no longer as nervous, I was no longer scared of my new boundary-less independence.

It became clear to me that I became comfortable in my crutches when I used them on my own, at home. I knew that I preferred my crutches when I chose them over my walker when my physical therapist asked. And most of all my crutches soon became a natural part of my school day when I felt comfortable enough to walk with them around my friends at school. I was no longer limiting my use of the crutches when everyone else was in study hall and the pathways were safe for me to exercise in. I'd use them to go to lunch, I used them during P.E. class, and sometimes during the day when I was tired of sitting in my wheelchair.

The decision to switch from a walker to crutches reminded me of how resilient my body is despite its genetic fragility. It still shocks me how adaptable we are and how with practice even the most challenging and daunting experiences can become second nature to all of us.

One of the characteristics of having O.I. is bone deformity or 'bowing' of the bone. Arms and legs may look like boomerangs but instead of rebounding back to the thrower, some can cause pain to the owner and others have many microscopic cracks in the bone due to the bowing. I'm not sure of the exact science behind the cause of the bowing, but I know that the inadequate state of collagen (a protein in the body that creates the scaffolding for bones) is one of the primary culprits of the deformities.

But all of that stuff you could have looked up on Google or asked your doctor about. As someone with many bowed bones - some which have been surgically straightened with a pin or a rod, and others just left alone, I can tell you that they are (for me) a source of embarrassment and annoyance. Take for instance my right arm:

My right arm hangs at a downwards right angle at my side. The elbow juts outwards away from my body, and then the rest of my arm just dangles down - I have never remembered my elbow to be able to completely straighten itself. This was always a problem when I had to have blood tests - even though I am a lefty my blood is never drawn from my unused right hand. It is never able to lay flat on the arm rest for the blood drawer to stick the needle in. Instead my right arm awkwardly lays on its side, pinky finger against the flat surface tilted towards me. If you've ever played the game "7-up thumbs up, heads down" in school my right hand is perpetually ready to play that game all the time. So after struggling to get it to go straighter I'll look up at pathetically at the phlebotomist as they ask:
"Is that as straight as your arm will go?"
"...Yeah"
"Alright, I guess you were right - let's just use your left hand then."

But there are some things that my right hand is good for. It's angled perfectly to rest my head in the palm of my right hand when I am tired, and it is able to reach outwards just enough to grab open a door as my left hand steers my wheelchair through. When I raise my right hand in class or to get anyone's attention it accomplishes the task quickly because of its awkwardness, teachers are never sure if my dangling arced arm is stretching or if I am actually raising my hand.
Sometimes people will ask me if my right arm hurts me and it never does. Or maybe it does and I just don't know any different since it's been this way for as long as I can remember. When I was younger I hated my right arm and would use my other arm to try and pull it straight, or bang my left fist against my right elbow to try and unlock the joint. Of course it was always to no avail but I tried! My parents always looked horrified when I did this and always hollered at me to quit doing that.

Though I don't know many O.I.'ers and I've never talked to any of the O.I.'ers that I know about this, I am sure that (like anyone else) every O.I. has a part of their body that they wish would function or look better. I don't mean that we wish our bodies would look un-affected by O.I., I mean to say that in comparison to the rest of our bodies there is always something that does not 'work' as well as the rest of our quirky anatomy.

Bowed Bones:

•  When I was much younger I never understood why my bones were bowed. In my mind just because they were brittle that didn't mean they should be curved as well! Helping young kids understand where their deformities come from or how they happened (from an old fracture that didn't heal well, or from poor collagen, or other reasons) will help them better understand their bodies as they get older
• Adjusting clothes to better fit bowed bones may be necessary. For instance super tight jeans over a bowed tibia may not be the best idea
• This is something I am still working on, but learning how to accept the body and not be embarrassed about bone deformities will take a great deal of time - especially if some bowing may get worse (or better) over time and medical treatments
• I have found that working with physical therapists or occupational therapists to help fully utilize a bowed limb has always been beneficial and safe
• If legs become progressively bowed and the individual wears braces, it's helpful to modify the braces according to the bowing. I used to experience painful pressure points from where brace coverings would press to a bowed part in my tibia because the brace was not adjusted accordingly
• Even if the pain in a bowing site is not one akin to the pain of a fracture, if there ever is pain I suggest it be checked out by a doctor - this might mean the limb is becoming further bowed and options should be discussed