Showing posts with label self-awareness. Show all posts

There is lots of medical literature out there that talks about how there are types of O.I. that experience a decrease in fractures at different times. And then there is information about hearing-loss that becomes more evident for people with O.I. at different stages. There is, I'm sure, also stuff about what happens when people with O.I. get older... things that I have clearly not bothered my head with. Yet.

I have been living that difference for at least the past 7-8 years. I haven't had a major fracture in quite some time (something that meant being in a cast for more than a month), and every time I have an x-ray of my chest/spine things are always "stable."My pulmonary tests don't waver far from the year before. My audiology tests reveal the same array of X's and O's on the audiogram. I am at that point of my O.I. where things are stable, and thank goodness for that!

When my friends ask me about fractures it can be difficult to explain to them what it's like. Particularly friends I met post-high school... they did not grow-up along side me, during the years when every two or three months I was in a cast. It's almost, in a strange way, like my friends post-high school are getting to know a different Sandy! Someone who is more willing to take risks, to go out, to party, to climb stairs to apartments, to trek through a blizzard, to do everything they do... because I am "stable" now. It is almost like having a totally different condition in a shocking way! I have found that there are things I could not possibly have been able to do as a twelve year-old without breaking my femur, that as a mid-twenty something I no longer think twice about. My friends post-high school don't come to visit me on inpatient floors, we do not spend our times together playing with TheraPutty, or seeing how long the other can stay balanced on the exercise ball.

It is a bit out of my league to explain the science behind this but I can offer some other insights. First is the most obvious: I am older. The liability for me to fracture a bone might not have changed, and I might still be just as fragile... but I certainly know more about my world and my body! I no longer have the same curiosity as my toddler or middle school self about what I can and cannot do. The temptation to try jumping into the bouncy-castle isn't as appealing when I know what might result. Secondly is that I have a better sense of the limits of what my body can and cannot handle. Those hundreds of fractures weren't just for the sake of archiving myself in hospital records! But each one taught me something about how much is too much, what it feels like right before a bone is about to break. And when that moment so much as pokes a finger at me I am quick to drop everything, to cease and desist. Thirdly, I am able to plan. It doesn't matter how much a classroom teacher, aide, physical therapist, parents may think to plan in advance for an incident where I might get hurt. Their planning will always miss some detail that only I will see, simply because it's my body, and my perspective. Being able to tell my friends "fine I'll go to the party, but someone needs to remain sober to carry me back down the three flights of steep stairs.." Or "okay we can go to Hong Kong and Macau but let's avoid the cobble stone paths if possible."

Things are different now and this is one of those times when the difference has been awesome. It makes me want to do as much as possible, get as much done as I can, cross off as many 'bucket-list' things as I am able to.. because I don't know when the next time things will be different again.

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 was just some random shit I was born with. It was something to overcome, some foreign and external obstacle that I had to hurtle over - always and forever. Something to manage and deal with "as necessary," a chore to tend to, something to make sure I kept in line and in check: hidden away, neat and tidy. That thing was limited to being a medical rarity, it was a thing that was forever dependent upon others, it required adaptive equipment and constant check-ups, or check-ins.
A few times, this thing, even said check mate -- but I always managed to slip out from its traps, wiping my brow and smiling proudly at having beaten the odds, or been strong in the fight against it. This was a part of me that I was expected to defeat, to pummel and then carry-on with grace, insight, and wit. Because if I didn't I would have succumbed, been defeated, let that thing over take my life -- and we all know that's totally unacceptable. I didn't realize that failing could sometimes feel like flying too, didn't know that when I fell I wouldn't always break.

There were times when this thing drove humongous craters between those closest to me, and I thought that there would never be a way to fill those gaps. I didn't know about the soil I could pour into those bottom-less pits; didn't realize all I had to do was open my clenched-fist-heart for just a few seeds to sprinkle out, and watch the little sprouts grow. I would never have known that a garden could fill those holes, a bridge of memories and experiences that those others and myself could traverse, freely wander and walk through hand-in-hand. I didn't realize that it would be possible to connect.

It wasn't something that had rights, just needs and most of them were special needs. My natural and self-evident rights were limited to the pursuit of a cure, help, and inspiration. There was no history worth speaking of, no history that you couldn't trace in medical files and irregular growth charts, there was no past that hadn't already been depicted in the black and white of an x-ray. Its history had no civil component to it, it was just purely medical, or dutifully recorded in the bullet-points of faded I.E.P. plans. The past of this thing didn't include any action I took in hopes of changing its course, it was always just the hand I was dealt and that was that. No questions asked, move-along now, next in line please.

So, now that I've met you? You've changed all of the above and more, for me. It's not really just any of the above stuff that keeps me going and keeps me coming back. It's the more, part of the story. It's the what-else-to-come chapter, the chapters ahead that we continue to write together. Many rays of shine, and bucket loads of thanks to you.