Showing posts with label bowed bones. Show all posts

When I was younger I didn't hear or know about the '-ed' at the end of your official description "bowed." Instead I thought that my bones were like bows for an embarrassing number of years. I thought they were powerful enough to launch arrows from like Robin Hood did. And I thought they were like accessories that my mom sometimes would put in my hair; I thought they were like those bows: girly, cute, an extra detail to add on to complete the look. But if I tried to pull you back taut for an arrow you would only break. And "cute" after about age 12 becomes "weird," "abnormal," and "deformed."

The first time I remember singing anything joyful about you was when we sang that "bones song" in the fourth or fifth grade.
"The knee bone connected to the thigh bone,
the thigh bone connected to the back bone.." 
And I remember thinking that this song was totally wrong because those parts of you are actually called patella, femur, vertebrae. I think I grew up a little bit that day. I felt special because I was in on some secret that those other kids in my class didn't know about yet. Like when I watched my younger brother play with Thomas the Tank Engine toys and he hadn't realized that real trains don't actually talk, real trains don't really have faces that are friendly and rosy cheeked. But I kept my mouth shut because he was having so much fun playing with his trains, I kept quiet about your actual terms because my classmates were having fun doing all the motions of the song.

I didn't really know you as "fragile, bowed, weak, brittle.." at first. At first I probably just knew you as something that hurt, and so I screamed and cried often as a baby. Then I got to know you as something that other people could make feel better. Not long after I figured out your soft spots, and weaknesses - I learned to make you feel better on my own. Then you became the thing that I had to keep in mind, or at least try to as I grew my mind and tried other things. Finally, today, you are often the thing that I know best about myself. Sometimes this last fact is the most frustrating part of my day, and other times it is the thing that saves the day. Because why should you be the best thing I know about me? Why can't the best thing I know about me be what I'm going to do when I grow-up? Or what my dream wedding will look like? Or exactly what kind of exfoliant and then moisturizer to use on my skin? Maybe I don't want to know you! Maybe I don't want to know about the crack I am ignoring, the bruise on you I could care less about, and the old break that still hasn't healed yet. Maybe I just want you to lay underneath the tapestry of veins, muscles, and skin as chipmunks lay beneath a winter's snow. Maybe I just want you to exist like that, and move about when the time is right as seasons turn from cold to warm. Those are all childish and maybe even useless thoughts to consider, but they remain notions I have thought at least a hundred times. And if you have broken - needlessly, randomly, inexplicably - a couple hundred times, I feel justified in telling you my equally random, and inexplicable thoughts too.

These will be added to our other secrets that we have shared. Remember the time when right after coming home from getting our orthotic KFO braces, we were excited to start walking again and somehow felt the sudden sharp nip of a small crack? It was against the outside of the tibia/fibula, and I knelt down - quiet and alone in the kitchen until the sensation faded. For about two months everyone was shocked I wore those braces without complaint, tightly strapping down the velcro against my shin. There is a grinding sensation that happens against shoulder blades when in a tense moment I shrug in silence. The left knee locks unexpectedly and I jerk in public at the shock, and I am bartering with you: okay if you just slip back in your socket I promise to not crack my knuckles so much today, whatever you want I'll do it. Just please don't break! There were other weird tiny incidents, moments when we both knew that rather than drag mom or dad to the hospital to spend hours on the orthopedic floor - we would just deal. You let me know what matters and what doesn't. What is urgent and what is not, though to be truthful my stubbornness sometimes pushes your buttons and you glare at me from beneath the x-ray's light table. We will have our disagreements and then tell our friends and family "we're just going through a rough patch."
Our secrets are things that no one will 'get' no matter how closely they study the genes, the sources, or trace the family hereditary footprints of your fragility. They are not things I will ever tell my orthopedic doctor about, even if he gave you a name and prognosis. And as much as I would rather not know about all of your strange quirks and abnormal deformities, would rather look away from the strange twisted spiral of ribs mashing into spine on the x-ray, our time together has forced me to become close with discomforts. The friction of that feeling isn't what makes you fragile, and it's not what makes me any stronger or capable of a person - I think it just serves as a reminder that trying to flee from ourselves is what induces the biggest fracture of them all.

Yours forever,
Sandy

Many readers already know that having a fracture isn't the only source of bone pain. I know that I'm very fortunate to not experience chronic bone pain, so for this entry I thought I'd do my best to describe the various kinds of aches & burns that I have difficulty explaining to my un-affected family, doctors, or friends... so, in other words.. I've never actually told anyone about this.


1. The Dull Ache That Spreads. It might start in my elbow or in my knee, an ache that just pops its head in the neighborhood because it was bored. After it settles in for a bit it'll take a little jaunt down the length of my arm or up my shoulder, or maybe it'll troop up my femur to check out the scene. Sometimes I wish I could just tell it to get lost or say something like, "nope, nothing's changed. Still 3ft tall and stillll not walking. Thanks for swinging by though, tell your mom I say hi!" This next bit is going to sound weird but if it happens in my arm, if I crack my knuckles it'll feel better. Or sometimes if I change sitting positions it'll fade a bit, I imagine when I do that the pain gets all discombobulated as I jostle it around - giving it a whirl before it regains its original pain in the ass mission again.

2. The Burn At The Peak. This happened nightly during the months and weeks when my tibias were at their worse. When I was younger both of my tibia bones was at near right angle degrees, it looked like I had two knees before they were finally rodded (several times). On the x-rays there was no visible fracture but my doctor would tell me that there are probably several tiny microscopic fractures at the peak of the tibia bone, and every night for awhile it would burn. Several times I would wake up and throw the covers off, touching the top of my shin making sure that the skin hadn't just burned off. I wanted to ask what the microscopic fractures were doing on top of that peak, having some kind of bonfire party before the big operation? Once I'd finally found a comfortable position to sleep in of course the burning would happen the next night, and then I'd try to sleep again in that position but it would never work. I had to cycle through various sleeping positions, constantly trying to find the next coldest spot in my bed for my leg.

3. The Ache Inside The Cast. You would think that once inside the cast the sharp pain and aches just stop. But somehow that isn't always true. Sometimes no amount of fiber glass and cotton can subdue the ache, and these can sometimes be the worst. And most of the time the aches aren't even in the same area where the fracture was! At first I'll think that it's just a muscle spasm, but then I realize it hasn't got that same edge; however, since there is only about 500 layers of cotton and fiber glass separating me from the ache I can't exactly go check on it like I usually do. Instead I'm resorting to wiggling inside the cast, and when I say wiggling I mean moving microscopic millimeters so as not to disturb the actual pain of the fracture. I might as well be trying to walk through a cave of sleeping lions!

4. The Sharp Ache That's Not Sharp Enough. It isn't the same sharp breath-stealing, heart-pumping, sweat-pouring pain that a fracture brings on, instead it's just a few steps below it. It's like the long lost cousin of the actual fracture that shows up at a family reunion, and no one knows how to react to him. He's kinda awkward - doesn't exactly have the best manners, has a shady history, and a weird mole on his eyelid. But he's there at the family reunion and absolutely insists on being in every single picture. Most of the time, this is the ache that happens in the same area where I will have my next fracture; it's like the foreshadowing of the hot mess events to come. Usually I just quietly stow it away in my head, smiling into the camera anyway and trying my best to keep this weird long lost cousin at arms length away.

When he wasn't looking or was too busy folding airplanes to later zing at my face, I would pluck at his Suzuki violin. In my hands it was the size of a guitar on me, but still I would pluck until he screamed at me to put it down for fear that I would break the rental. Both of my brothers play the violin, and while my younger brother is far superior at it - I grew up watching my older brother pull the horse hairs over the strings.

Standing at roughly 3 ft, cruising around in a power wheelchair, bowed arms and with other key features of O.I. it's pretty obvious that I have a disability. Despite all of those visible clues I still find myself trying to hide my disability. My futile attempts occur less frequently as I have gotten older and as I have become more comfortable with myself; when I was younger though, I went through all kinds of ridiculous extremes. Whether it was out of embarrassment, shame, awkwardness, or just a strong desire to fit in - hiding my disability came about in various phases and stages. At first it was hiding physical differences, then it was about hiding my limitations, and as I got older it was all about over compensating for my handicap - pushing my other abilities to draw attention away from the O.I.
As a kid I went through a phase where I spent months getting around in my tricycle only. I rode it around the house, around the neighborhood, even begged my parents if I could take it to school (they drew the line there - but I think I took it to show and tell one time..). Realizing that I couldn't walk without the assistance of leg braces and a walker -- contraptions that no other kid I knew needed, I loved the tricycle because not only was I able to get around without anyone else's help, but other kids used bikes too! In my eyes I could look 'normal' for once!
This was looong before I got my power wheelchair. My physical therapist was still working with me to teach me how to put my leg braces on, how to safely climb in and out of my wheelchair, and gaining the muscular endurance to push myself for longer distances. I wasn't interested in any of that though. I just wanted to pedal away to my heart's content.

Beginning around the third grade through high school - I never wore shorts or skirts to school. During these years was when it looked like I had two knees on each leg. My tibia was incredibly bowed and after one particularly annoying day of kids whispering and pointing at my shin - I refused to show my legs ever again. It didn't matter how hot it was, whether or not the school's air conditioning was working, or if we had gym class - I was adamant about never wearing shorts again. In fact these were the days when I would force the shin guard of my leg brace over the almost 90 degree curve of my tibia; it was common for me to come home with bruises on my tibia from where I had tried to flatten the bone down with the plastic piece from my leg braces. By the time I was in high school I had already had several rod operations and though it no longer looked like I had two knees, the surgical scars on my legs bothered me. The scar tissue ran the length of my shin, from my knee to my ankle and being a fairly private person about my body and the way it looked, I wasn't interested in entertaining the curiosities of my classmates and friends. I didn't think I knew what to say, how to say it, or knew how much information to give. Besides at this age everyone's mentality is to fit in, to not be ostracized, to not show weakness or at least... if you could help it hide your vulnerabilities and oddities.

High school was also the time when I took off with my passion for writing. My English teachers took special interest in my ability to write - be it poem, newspaper article, short story or just a plain old essay. With the guidance and encouragement of a few teachers in high school I found something about myself that was not only hidden, but something (unlike my disability) that I had full control over. I chose which words to use, how I wanted phrases to flow, what images I wanted to conjure in my readers mind, what problems I wanted characters to face, and how everything would be resolved. Immediately (and this is still true today) I recognized the ease at which I am able to express myself through writing - on paper there is no judgment or questioning stares from strangers or my peers. On paper everyone starts with the same blank page, the same capital letter, and ends with the same period. To this day I am painfully cognizant of how I am able to connect with people on paper in a way I haven't found out how to do in person... but I think I'm getting there. So it was, that during high school, I began to 'learn' how to hide my disability behind the things that I am capable of. I taught myself how to draw attention away from what was obvious and became known for the girl who wanted to be a writer instead of "the small girl in the wheelchair." It wasn't long after that I became involved in the student newspaper and the literary magazine, with some persistence and work I changed the way my peers and the student-body came to see me.
I think that every person with a disability goes through something like this. At least I hope everyone does. For me it was a time to discover what I am capable of, what I enjoy doing, and learned more about myself that went beyond the day-to-day challenges I faced. So much of the time the disability might consume our lives that we forget there is a person underneath all of the medical care. And so when the day comes that we finally find something that we can do well, that is safe for us, something that WE CHOOSE to do and to be, and is something of a 'gift' - it almost seems to propel us to some other high that we will cling to and throw at others who don't know us very well, as if to say "here. This is the real me. Not the person you see before your eyes. This is who I choose to be and who I want you to know instead." This self-discovery was like a catharsis 18 years in the making, a relief to know that I had an option about who I wanted to be and what I could be capable of.


On Hiding Myself:

• I think that because I was the only OI'er in my family, and the only OI'er I knew in my life growing up - my attempts at hiding my disability were inevitable. 'Hiding' my disability was my survival technique so to speak, it was how I was adapting to the world and everyone around me
• It wasn't until recently that I came to realize why I did the things I was doing as a kid/teenager. It is one thing to realize your behavior and something else to change it, the latter is what I am slowly working on these days
• Aside from me, my parents have two other children - my two brothers who are unaffected by O.I. My parents didn't cut me any slack because I have O.I. or because I was in a wheelchair; I had the same expectations as my brothers and that was to first and foremost do well in school. With that in mind I don't think my parents realized what I was doing by 'hiding' behind what I discovered I was capable of - instead they just encouraged my skills and strengths!
• I don't regret the way my parents raised me in this way, I've certainly come quite far in what I have accomplished and am proud of all of it. I'm glad that they pushed me and didn't allow my disability to be an excuse and so many times my only options were "yes you can do it" and "you must do it well"
• A part of this entire process, I think, is becoming more comfortable with yourself. Not just what you see in the mirror but the implications of what having O.I. or any disability means. I'm beginning to learn that this 'meaning' won't be set in stone for as long as the status of your disability / O.I. changes and impacts who you are as a person over time. Being okay with this fluctuating and changing status is definitely key     

• The day before the operation my parents allowed me to eat all my favorite foods. For the 9 year old me that included: white rice & ketchup, pizza, string cheese, Gusher snacks, fruit roll up, and endless glasses of milk. It also helped that my operation was very early in the morning, this way I didn't have to go hungry for too long until my operation
• My day-to-day routine didn't change during the days leading up to the operation. I still went to school, hung out with my friends, still had my music lessons etc. It helped my psychological calm about managing my first big operation. This isn't to say that my parents didn't still talk to me about what would happen, or I didn't ask them a hundred questions, but the general consensus was that life would continue before and after the operation
• Weeks before the operation my parents had made appointments with a physical therapist. She specialized in post-op assistance and arranged for me to have rent a reclining wheelchair, and other adaptive equipment that would help me during my time rehabbing with a huge cast on my leg. After the operation she came to my hospital room and showed my parents how to help transfer me to my wheelchair, to the toilet, and talked about different ways to help me in the shower
• I was fortunate enough to have my grandparents live not far from Children's Hospital; this way during the day when my parents had to take care of my older brother (send him off to school and his own activities), they came and stayed with me. Then at night my parents would come back and one of them one sleep with in the room with me
• Because many OI'ers have issues with their lung capacity, its important to keep monitoring this part of you before and after the operation. I remember needing to go through a battery of tests before the operation with my pulmonary doctor to ensure that I was clear to go under anesthesia. After the operation there was a doctor who would do breathing exercises with me, and help me to ween off the oxygen mask that my lungs had become dependent on during the long operation
• Staying in the hospital over night is tough. For whatever reason pain is always worse at this time, nurses keep waking you to take your vitals, and you can never get into a comfortable enough position. What helped me get through the night was actually being as active as I could during the day. I would try not to nap, play video games in the play room, hang out with the hospital volunteers, or read the Get Well cards my classmates sent to me. This way by the time night fall did arrive my healing body would be exhausted and I would just pass out

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