Showing posts with label brittle bones stress. Show all posts

I'd like to say that it's because I'm hard-of-hearing and 80% of the time I'm not wearing my hearing-aids, and that's why I'm awful at listening to my body... but it's not. Actually it has absolutely nothing to do with having a hearing-loss. Most of the time I just plain ol' ignore whatever my body is telling me. For this post I thought it'd be neat to write down some of the things my body has told me:

You need to crack your knuckles right now. Do you feel that crazy stressful ball of tension built-up? Yes, well, release it before your hands completely stiffen. 

You've been sitting too long in one position. Your femur feels like it's going to break doesn't it? Well that's because you've been sitting too long while you waste hours on twitter and facebook. So either you  adjust a little, or your femur will continue to pinch like it's on the verge of breaking.

Did you really have to fly over that pothole in your wheelchair like that? Really? Because now your tailbone is slowly turning bluish-purple like a bruise. Yeah you better be thankful that no one can see it, because it's not a pretty sight.

Oh, my, did you not know your back could sound like it's crunching down on raw carrots with the way you just cracked your back? Do you think maybe it's time twist your trunk from side to side? No - you don't think so? Okay well don't come crying to me like I didn't warn you! 

What's that? Your shoulder hurts? Well, Miss Smarty Pants, did you not think your shoulders wouldn't be strained when you climbed up the counter and hung from the cupboards? Oh - I'm so glad that those CoCo Puffs were worth it. 

Your rib hurts? Well next time when you sneeze try not sneezing all of your brains out! 

What's that you say? Only my body talks to me like that? No, no, no. You listen to your body the next time it talks, and you get back to me with what you hear!

The thing is I ignore those things. And off the top of my head there are several reasons why I ignore those things:
1. Not serious "enough." 
Having been through multiple osteotomies, endless muscle spasms post-op, and a rod sticking out of my skin -- the everyday chatter of my body just doesn't strike me as something I need to put the brakes on my life for. Does that make it right? No it doesn't. It just means that I (think) I know my body well enough that I have the ability to pick & choose.
2. I have things to do and places to be!
If I were to pause every time my body complained, I would really be slowing myself down. And for someone who always has her power wheelchair cranked to the fastest speed - that is not something I'm ready to adapt to. When I hear a weird sound, or my knee locks (yet again), I might stop and think about what it was. And quickly evaluate in my head: okay so that wasn't a fracture, moving right along now...
3. Because I just don't know what to do.
Okay so my back sometimes cracks in weird ways, and the way I crack my knuckles makes it really questionable as to whether or not my bones are (actually) brittle. But I do those things because they make my body feel better, I am honestly not sure how else to handle that tension or what my other options are for some of the gripes my body vocalizes.

I'm not telling you to totally ignore your body, or to totally succumb to its every beck and call either. (Because if I did that I would be floating on a waterbed, living in some tropical country, and living life as a Mermaid). What I am saying is that we need to each recognize that our bodies do react to the things we put it through with our everyday living. Get to know those reactions, get comfortable with recognizing what is serious and what's not, be okay with the fact that our bodies may not always talk back to us with a response we want to hear.

This post comes from a story my mother used to tell me.

At first she didn't think she would be able to do it. She doubted whether or not she had the mental and emotional strength to care for an extremely fragile and tiny human being, that human being was her infant daughter, me. My mother was afraid of hurting me, of causing more damage, she didn't want to be responsible and probably felt a certain amount of dread and guilt when it came to taking care of me. Although it used to hurt to hear her tell me this, I have come to be able to place myself in her shoes: and I just can't blame her for how she felt. Mentally I have decided I cannot choose to be angry at her, and emotionally there is no longer any feeling of hatred or resentment whenever this is brought up in my family. I can't be angry with her because she wanted to give up on me when I was born. It must have been scary and terrifying and a whole slew of other emotions that ... quite frankly... I hope to never experience myself. (Being able to forgive is a whole different story though, that process has taken many years of my 20 something years of living). And so it was that for much of my early infancy I was sent away, placed in the care of my paternal grandmother.

"All of my paycheck went to babysitting and nannying fees that you and your older brother required" she would tell me. It didn't surprise me that my mother only trusted family members to look after me, her only disabled child. I am also sure that it would have been difficult or near impossible to find a babysitter skilled enough to know what to do with an infant who had O.I.
"I only trusted family members. At least this way everything would still be kept in the family, especially if something went wrong. There was no need to involve other people or strangers. I was tired of hospitals and strange doctors already."

In the re-telling of this story my mother always made it a point to let me know that she came and visited me every opportunity she had.
"Whenever your father had the day off or any free time we would drive over and come see you." I lived at my grandmother's apartment, "all of your furniture and medical equipment was over there. Your crib, your bathtub, the special seat you used, any of your splints and casts -- all of that was over there. You lived there. Most of the time you just lay on the couch and watched t.v., you were quiet unless something was wrong, and other than the broken bones you were a non-fussy baby." For awhile there didn't seem to be any issues. I was content, healthy, and seemingly happy. My grandmother was getting paid and had no complaints, and my mother was able to continue on with her job and career as an accountant.

It happened when she came to visit one afternoon,
"One of your arms wasn't moving and I noticed it right away. You were a baby and normally babies are constantly fidgeting and moving about, everything else was moving except for one of your arms and I realized something was wrong." To this day I find it shocking that my mother could immediately tell that something was wrong, but it is also relieving. It's relieving to know that despite sending me away as a baby my mom was somehow still connected to me, in fact it makes me glad to know that her mother-instincts were still on point when it came to my well-being.
"I told your grandmother that I think something is wrong with your arm and that I should take you to the doctor. But she refused to believe that anything was wrong. She kept insisting that you weren't crying and that you were happily watching t.v. But I knew something wasn't right. My gut told me." Somewhere in the conversations my mother and grandmother were having was a great misunderstanding.

My grandmother interpreted my mother's concern as accusing her of having done something wrong, or worse injuring my arm. But this in fact wasn't at all the case.
"Since I knew you had a brittle bones disease I knew it wasn't because of anything your grandmother may have done. This is just something that happens with you and I am not sure she ever understood, I wasn't blaming her" my mother would say.
"I told your grandmother that even though you were a baby, in your mind you probably knew that it was broken and you had taught and trained yourself to not move something that was broken. I assumed you weren't crying because you had probably cried enough. I believed you had no more tears to show that you were in pain, I thought you were probably tired from having cried so much already."

Every time I heard this story I was always amazed by how much my mother "just knew" and how accurate her "gut instinct" was. This relationship isn't something that I can really describe but I am sure many other OI parents are familiar with this 'feeling.' Although now that I think about it it's probably not just limited to OI parents, probably every parent has this ability -- it's like a superpower, another sense that clues parents into what may otherwise be indescribable for a child. (Pretty cool for a parent! Sometimes slightly annoying for a child!) 
After that incident occurred (and it turned out my mother was right, I did in fact break my arm), she decided to stop sending her children away for other people to care for. She realized that not only did she just know what to do but in fact with practice, and by being around her kids everyday she did in fact have it in her to raise and care for us. Over time and with numerous struggles in the process my mother became less fearful of my limitations and disability. My mom's ability to be my full-time care taker as a child took patience, experience, failures, mistakes, and a strength that grew over time; as her daughter I won't know what else it took but I'm sure there is much more to it than just that. (I MEAN, LOOK AT HOW I'VE TURNED OUT! :-P)


Now that I've written this post I'm beginning to wonder why I felt the need to write it out. I think this is going to be one of those stories I wrote without fully understanding the point myself. There seems to be too many lessons to be learned and those lessons will probably vary depending on the point of view (are you a child with O.I.? Or are you the parent? Or are you the relative? Or are you a caretaker?). I believe that this is one of those stories where the meaning will evolve over time. When I read this in five years I will probably get something very different from the story than what I get now...and that leads me to believe that you probably will too.

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.