Showing posts with label OI self-esteem. Show all posts

This week I got back from the Easter Seal's Explorers Camp in Maine and hit the ground running with loaded entries! Miss any of'em? Check them out here:

• Monday: I started the week off by writing a Post-Camp Letter to myself summing up my week away

• Tuesday: It wasn't until recently that I thought about how my self-image has changed over the years. In this 2 part series post I wrote about my self-image from childhood to high school

• Wednesday: Part 2 of "My Evolving Self" was a tough entry to write but an important one nonetheless!

• Thursday: Originally written in 2003 by my 10th grader self, it was then published in the OI Foundation's Breakthrough! "The view from the bottom..."

• Fracture Free Friday: The line between staying safe but having fun can be a difficult one to manage. This week I give tips on how to make the decision process a bit easier! 

A Small Note for the Big Adults: Knowing that my intended audience were elementary school aged children put a lot of pressure on me for this entry! After a lot of restless thinking I thought back to the authors I found comfort in around that age (Roald Dahl, Dr. Seuss, and Shel Silverstein) and decided a silly poem would be perfect. I hope this poem helps parents & kids discuss concerns they have with the first day of school, but in the end know that it's no way to live life to be constantly fretting. So please, if you could share this with the young O.I'er child in your life that would be wonderful, thank you!!
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In yesterday's post I talk about the difficulty with meshing activities/behavior with my actual age. Because I have such a short stature I have a tendency to get treated like a child or have childish expectations of me. Today's post is going to be the opposite issue. I'm not sure if it is just me or if other OI children feel the same way, but up until I hit my 20's I always felt decades older than I actually am.

Is it because I was constantly surrounded by adults as a very young child? Or because I had to learn many life lessons the difficult/painful way before I learned to ride a bike? Was it the different priorities that I seemed to have been born with? (That although life is fragile and scary you need to be bold with it!) Those hours spent at hospitals in the waiting room with a broken limb - so much goes on inside my head during those minutes. I remember feeling isolated, in pain, and yet needing to be patient, to be strong, to be brave - not just for myself but for my parents and other family members. Surely all of those thoughts slamming into one another like a domino effect at the age of 3, 5, 9, 15, and 23 must have had some impact on my mentality and thought process? To be honest I don't think my ability to think is any different than someone else my age, I'm sure of it!

In the moments before my orthopedic doctor pulls the x-ray up I am learning about fate and consequences. Those seconds I am realizing that it is a terrible fracture an innate coping mechanism kicks into gear. When strangers unintentionally shove their butts into my face I am learning how to find humor in everything. The skills of patience and rehab are honed every time I am done scratching the heck out of a freshly freed limb from a cast. Being the only one in my family with this mysterious fragility has taught me how to be alone and forgiving.
None of those situations come with some kind of magical manual that my orthopedic doctor handed to me when I was born; it wasn't like he said "Now when you grow up and turn 21 and need help with managing fractures turn to page 57 in this handbook." There have been countless times when I have wished for such a guide but of course no such thing exists. I have just learned how to deal with things as they come, this natural reaction to situations has become so fluid that I don't even think about things anymore. All of this is just all that I have ever known and it's life as I have come to love and live it!
But just because I might have been able to think like a 42 year-old at the age of 17 doesn't mean I had all the answers to everything (even though every 17 year-old believes she does). It seemed like I was so well versed and calm about bigger picture instances in life but when it came to the smaller stuff I tripped and stumbled just as much as the next kid. How do you ask a guy to prom? How will I be able to drive a car? How do I open my own bank account?

Never mind 17, even today I still struggle with a lot of things that I thought I should have "figured it out by now." How is it that I can calmly navigate my parents through a major rodding surgery and not explain to them that I don't want to live at home? How is it that though I have lived for years away in a dorm that my family still worries every time I am out past 9pm? And even though no one else in my family has O.I. - how come they don't understand the stuff about me that is non-OI related? The gap in understanding and maturity that I am constantly traversing can be infuriating, exhausting, and disappointing. But it's something I can remember needing to understand ever since I began kindergarten (I think it's just as important as learning how to manage fractures!); I'm not sure if there is a name for this kind of thing that I have been describing, but what I do know is that it's definitely a trait of having O.I. and one of the 'symptoms' I will happily deal with long after they find a cure to my fragile skeleton.

The Other Balance:

• Even though you've been through some life experiences that few others have, you're not supposed to have the rest of your life figured out (learn this sooner rather than later!)
• OI isn't just a condition that impacts your genetics or your bone structure, it's life encompassing and isn't always something that makes you fragile - you will be surprised at how invincible it can make you in other ways
• I have yet to learn how to do this and it's still a hugely difficult challenge for me today: understanding how to mesh the OI affected parts of your life with who you are as a person is key to this 'balance'
• Although people might assume that you have a better understanding of certain 'life things' - no one expects you to act any other way than who you are as a person
• Like I said, I have no idea what this 'mentality' that I have described above is called, but when it gets exhausting for you talk to your friends about it. Even if they don't have OI, friends are there to listen and to help - I have been surprised at the empathic abilities of my closest buddies 

"Mom no one else plays the recorder anymore. It's a baby instrument!"
"No other instrument fits you. The piano is too long and you can't reach the pedals, others are too long like the flute and clarinet. Your arms don't bend the way a violin is held, the trumpet is too heavy, and I won't allow drums in the house." 
"But I just want to sound like everyone else! All my other friends have music lessons! Pleeeeassseee.." 
"Fine - I'll go to the music school and ask the front desk what they think you could learn to play tomorrow." 


It was four years after the recorder had been first introduced to me in elementary school. I was now in the seventh grade and like any other twelve year-old just wanted to fit in with the rest of the middle schoolers. Playing the recorder, the plastic white one that the public school system universally dealt out to every third grader, was NOT the solution to fitting in. I probably deserved some award for having braved every orchestra class through the sixth and seventh grade with my tooting and squeaking next to the Violin I section. I don't remember whether or not I got flack from my peers for still playing the recorder at that age, although now that I think about it it's probably because I have mentally (and rightly so!) blocked much of that period of my life from memory.
Whether it was going to Disney World in a stroller when I was eleven, or being put into a baby carrier on my dad's back at the age of six when we went to China, or still playing the recorder in the seventh grade - there are countless experiences where my size and age didn't match-up. There were a lot of times when this mismatch messed around with my head; the mental leap of needing to span age differences of five plus years would sometimes make me uncertain as to how I "should behave," who I am as a person, and routinely tested my own levels of comfort. It was through these experiences that I discovered what I believe in and what I know is okay with me. For instance, my parents learned early on that it's not okay with me to buy me clothes from childish stores because I would prefer to get the smallest size at a more age appropriate place. Just because it fits doesn't mean it's okay! Or just because I am the size of a younger child doesn't mean I should not be allowed out with my friends, my bed time and curfew shouldn't be restricted to what might seem on the surface to match my size.

I know that all of this might seem so obvious, but I have been shocked by how easy it is for acquaintances or even family members to forget that my physical limitations should not dictate my life. Having O.I. can sometimes involve a lot of hopping around islands. One island might involve being fitted for a pediatric wheelchair, and then the next hour an individual is off to his first job interview, going to a school dance, or getting her license for the first time. I refer to them as islands because each moment seems so isolated from one another, I myself still have difficulty meshing everything together - but I always remind myself that I strive to do what is best and appropriate for me. O.I. might encompass my entire life but as I have written more and more of these blog entries I have come to see that it rears its head differently in every situation. Sometimes it's barely noticeable and like a chameleon it quickly changes color to blend in with the background, or sometimes it sticks out like a sore thumb - reminding me to slow down a bit and take it easy.  
So whether it's playing the recorder at twelve, being treated like a child when you're twenty-three, shopping at kid stores as an adult, or finally getting your drivers license as a middle-aged adult - having O.I. is constantly reassuring and reaffirming each of us who we are as individuals. Its odd isn't it? It's so easy to only think about the times when having O.I. might undercut our confidence in ourselves, or make us feel embarrassed but I'd like to urge all of my readers to take a second and think of one reason how having brittle bones has helped them understand their own selves better.

"Mom did you go and ask the music school today? Did they say something dumb like I could play the triangle? Cuz that's just stupid, I am not going to play the triangle -"
"They said you could try music theory." 
"What?"
"They said you could learn how music is written, and that you could write your own music. Does that sound like it would interest you?"
How could it not interest me?! Me? Write my own music?! And so it was that from the end of seventh grade to the time I graduated high school I took music theory lessons. This culminated in a song I helped to write for my high school chorus, and a slew of other pieces for the piano and violin. The evening the chorus was to perform the song I helped write I thought back to those years of embarrassingly pulling out my plastic recorder in the seventh grade. I smiled and laughed to myself wishing I could tell my twelve year-old self back then that in a few years I would be able to have some hundred voices singing the words I wrote.

The Balance:

• Parents and family members can help kids with O.I. by instilling a strong sense of self; this makes future accommodations and decisions easier to grapple, especially when that child grows up and needs to make choices on their own
• Sometimes you need to do things that must be done. I have found that these instances happen especially around things that I do NOT want to do. If you understand this then dealing with the more dreaded moments can be easier to swallow - you aren't expected to WANT to do those things, so at least you're responding in an expected way!
• The cheapest and best management technique is a sense of humor
• Though sometimes I am super self-conscious I have found that growing up with a condition that makes me visibly different from others has helped me put into perspective other situations in life. Reminding myself that I have come this far no taller than a yard stick helps to propel me forward
• It's okay to be selfish at times: Do things for you, and better yet because they are what's best for you (admittedly I have to learn this!)
• There are days when what gets me through my day is my desire to challenge others and prove everyone else wrong. Being able to surprise the world and people 'out there' can be daunting and exhausting, but if you think of it as an opportunity and an experiment where there is no correct expected outcome - the balance of who you are, what you want, and what you can do is then easier to manage because it's all up to you! 

 

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

It hasn't always been healthy and though I am now an adult, I am far from being comfortable with my self-image. In elementary school the problem wasn't that I looked differently from my peers, it was that I wasn't as physically capable. I couldn't run and play soccer with 90% of the rest of my class during recess. Field day involved a lot of adaptive competitions and it took me a long time to be okay with asking one of my fellow first grade friends for help reaching something. In middle school I had to get used to my friends towering over me and talking with my head tilted up. Going to the mall with my friends or to the movies was never a simple 10 min car ride where my parents could drop me off and pick me up later - the wheelchair had to be loaded, me carried in, and places had to be researched for accessibility. During high school it was frustrating to never be able to fit into the designer clothes that everyone else wore, or being unable to participate in drivers-ed with the rest of my friends. In college I encountered the awkwardness of trying to dance at clubs, what my alcoholic intake is like, and being confident about developing into an independent adult.

Surround yourself with awesome people always helps!

Self-image, for anyone, is an evolving concept. It grows and expands with every year and day that we are living and learning. It is added on by the people we surround ourselves with, or even the people who we choose not to associate ourselves with. But having a disability that may get worse or better over time also molds the self-image as well. There are still days when I avoid looking at mirrors or prefer going shopping on-line instead of going to the mall. Or some days I will don my sunglasses and cruise through town with a face that says: I don't give a damn about what you think. Some times I will flirt without shame and other times when I would rather be a shadow in the back corner at a party, it depends on my mood and how 'good' I feel about myself that day. The frustrating thing is that sometimes my self-image doesn't always reflect the severity or status of my physical disability. I might not have a fracture or have a cast on but I may still feel totally embarrassed about the way I look. Other days when I do have a cast on my self-image may appear to be more bolstered than it usually is. This can be frustrating because others may be thrown off by this and as I have come to find - internalizing the perceptions others have of us has a tremendous impact on self-image. I think the trick is to maintain an unrelenting grasp on Who Am I and then nothing else can splinter or fracture that idea.

Needless to say I have a ways to go before I am able to say that my self-image is consistently dependable. Sometimes I wonder if it ever will be but I have learned a few things that have helped this figuring out process be a lot easier.

Keeping up with evolving self-images:

• Have friends and family who are supportive of who you are and understand what having O.I. entails
• Know that your self-image will change. Understanding that it WILL change will help brace yourself for the inevitable uncertainty of what it will be in the future
• I learned only recently that talking with others who have OI and are around the same age as you is incredibly helpful
• Your self-image is made up of what you put into it! Fill your life with things that you love to do, people that you enjoy being around, and a positive attitude. It's a bit weird that an image, in this case, is not composed of the surface but what's inside of it. 
• Your body is a reflection of what you have gone through and it's not something you should ever be embarrassed or feel guilty about. This, I admit, is something that I still struggle with. 
• It is okay to feel down about things at times. If it's not okay, well, somebody better tell me! It's normal to have a negative response about your self-image. This means that it's something that either you would like to change, or it may be something that you will come to embrace over time. 
• Self-image is not a homogeneous concept. There may be parts of your self-image that you are proud of and other parts that you consider to be 'works in progress' - but trying to make everything balanced and equal might not be worth the effort.