Showing posts with label fragility. Show all posts

After awhile the stares and silent questions from the people around me fade to the background. It took me quite a few years but now I hold my head up and feel proud: Yes, I am a young adult who is being carried around.
There are very obvious wrong ways on how to carry an individual with O.I. but I don't believe there is any singular right way to do it. It all depends on the child or person and even more so it depends on whether there are any fractures and where those fractures are. For me, when I have no fractures, I am fine being picked up under the arms - just like someone would pick up a young child. Other O.I.'ers prefer the cradle technique (like cradling a baby), and feel that this way of being moved is the safer bet. Whichever way someone prefers to be picked up is based on his or her experience and levels of comfort!

"Alright so what would be the best way for me to pick you up? Under the arms? Under the legs? Should I swing you by the arms? Throw you?" My friend was trying to find humor in an awkward situation. This is a question that I am sure many of my O.I. readers (or their parents) have been confronted with. When I was much younger my parents would jump in front of me as if they were blocking a potentially winning goal before the ball could even graze the net. They'd tell the well-meaning stranger that I have a "bone disease so I'll just pick her up myself. Thanks anyway." And with that my parents would swoop me up into their arms and hold me against their hip like any other toddler. Years of that repeated response had ingrained in my head the following 3 things:
1. Not anyone can just pick me up
2. The carrier must realize that I have a bone disease
3. Being dependent on close family and friends is the safest way to go
But as I got older those 3 "rules" didn't always hold up. When I first got to college no one knew about the O.I., or if there is a fire drill in a public place and I am there by myself - there is little time to explain to employees that I have "osteogenesis imperfecta, it's a brittle bones disease and you have to be really careful" (as the building is potentially burning down).
So how have I gone safely outside the years of protective routine that my family had insulated me in?
1. I have had to take risks.
2. I have had to trust strangers.
3. And I have had to learn from my experiences.
These days I know that I will have to expect the slightly rougher grasp from someone who has never held me before, and I know that their lifting me will feel like the jolt of an amusement park ride beginning. This is in comparison to a close family or friend who has carried me many times before - they are always far more gentler, less shakily nervous, and more aware of where my arms and legs are as they place me down.
If someone is nervous about picking me up then I will be nervous about being carried. For people who have never carried me before I usually tell them that whichever way they feel most confident about picking me up is fine with me. If their technique needs to be tweaked or changed then I will let them know, but I have always felt that instilling confidence and a can-do attitude in the other person goes a long way.

I refer to the above three tips as the Out of Bounds Rules. Those are the rules that help me manage the "outside world" or those who don't know anything about O.I., they have also guided me in times when my family and close friends have been nowhere near me, or when I need to make snap judgements of a situation. They are not so much rules as they have become laws to my life. If I didn't follow them then I would probably be living in a literal (and figurative) bubble, not have accomplished as much in life, and most importantly to me is I would have allowed the O.I. to rule my life instead. If the latter were to happen that would not only have broken everything that I believe in and grew-up knowing, but not following the Out of Bounds Rules would, I imagine, lead me to a far more imprisoned life.

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

Yes, I know. We don't see it as a 'disability' or a 'handicap' or any other negative connotation. But let's not kid ourselves here - there have been situations in life when I have envied able bodied people. And one situation has always tripped me up: I'm not able to be as physically relentless as my peers. I see that when my brothers get angry they go for a run, or when my friends get frustrated they go punch a bag, the wall, the door... some object that when I play it out in my head, I know would result in a painful fracture. One that would be even more frustrating, aggravating, and upsetting to deal with than whatever original situation had gotten me so upset. That moment is always humbling for me. It puts everything into perspective, that whatever is bothering me - there is always a better/safer way to let out the frustration and hurt.

Suggestions to Un-Break the Anger: