Showing posts with label Hope is the thing with feathers. Show all posts

Confession: I say "oh thanks" after this is said to me. Even though, really? I am not thinking that I am thankful for anything (generally) when this is said to me.

In truth when this is said to me I think that I am being reminded, yet again, that I have *something* to be strong about. Something that the person saying to me, doesn't have. A reminder of my difference. And I know that this thinking has many errors to it! Because I am the person who believes the best of everyone, I believe that everyone lives a life where they have something to be strong for. Something that takes courage in the honesty that we each live our lives with. Still though, this statement bugs me.

Because I'm not a strong person in so many ways. I need someone else's help when opening or pouring a gallon of juice or milk because otherwise it will spill everywhere in that first pour. I need ten more minutes in bed on Monday mornings, ten minutes that inevitably always makes me at least ten minutes late. I do not do horror movies. I don't care how little blood or how fake-looking the creepy monster is - I just don't. I need juice to chase away the liquid Robitussin that I take when I get sick. Also, I need to build myself up to the taste of the liquid Robitussin that I take (and this takes some amount of mental coaxing.) For the first two months of school I always have to write down everything I say before I actually say them, until I get used to things. I make my friends wait with me for the bus at night because I do not want to wait by myself, or I resort to the pretend-to-talk-on-my-phone trick. When winter arrives I shake my boots upside down with unnecessary vigor in case there are spiders, or spider eggs that have somehow gotten inside during the other months I wasn't wearing them. And also in new places I've never slept before (like hotel rooms), I have to have the bathroom light left on because otherwise I get... umm.. nervous.

In my mind those are the things that I have had to be strong for in my life. Those are the things where I have actually had to take effort and say "okay, I can do this.. this is actually just an illogical fear because I am a ridiculous and absurd freakazoid." But the person who tells me "you're such a strong person" probably doesn't know about any of those absurdities. I know this because usually... I have been told "you're such a strong person" for the really simple things that I do. The things that I don't really have a choice about doing.
I don't have a choice in getting out of bed and going about my day. But I have been told "you're such a strong person" for doing just that! I don't have a choice in going to school with a cast on.. because, well because my parents said I need to go or I'll be in even more trouble! I don't have a choice in the surgery that I needed because that was the only option that would make me better. I also didn't have a choice when I went to that job interview because in order to reach my goal of employment, failed job interviews is a part of the process. I didn't have a choice in talking about why I'm disabled in front of my classmates because in my mind I knew this would help me be safer in school, and help my classmates feel more comfortable around me. I didn't have a choice when it came to learning how to advocate for myself because I learned that's one of the ways a person with a disability survives. And yet in each of those moments I was told "you're such a strong person."

Is it because I haven't let being disabled sideline me? Haven't let it keep me at home twiddling my thumbs and pleading to the gods about why? Well, in that case everyone that I see walking about the city streets are also such a strong person. But how come no one is telling them that?....Exactly. That's what I thought too.

Maybe all of this is strange to me because it's a matter of perspective. Because I, quite frankly, do not know of any other such life than the one I am doing such kind of living in.

My parents used to tell me about how when I was an infant they would carry me atop a foam egg crate pad, instead of holding me in their own hands. I guess the dimpled ridges offered just enough support beneath me, and at the same time the foam provided just-soft-enough-padding that prevented sores on my skin. In my head I always picture it like I'm one of those Faberge eggs balanced precariously on top of a velvet cushion. Except, of course, I'm worth a whole lot more... :-P

Those were the days when I could still fit snug against the grooves of an egg crate. Those were the days when despite how terrified my parents were of handling me, their hands were always holding me up beneath the padding. Their fingers never far underneath the layers of casts, cotton stuffing, pads, or ace bandages - their grip that held onto me seemed stronger than gravity itself. Indeed, their pull on me towards them was the first gravity I ever knew. (Isn't that the truth for everyone?) 

Then I got older and a little bit stronger. My parents grew more confident and their knowledge of how to best lift me became second nature to them. I would soon learn how to do my own transfers with and without casts on - most of the time it was against doctor's orders, and all of the time it was through trial and error. Suddenly there came the day when there was no need for that foam egg crate pad anymore. I had outgrown the need for its softness and my parents no longer needed it as a shield. We had all, slowly but surely, become more comfortable with me growing into my own skin and abilities.

Growing out of that egg crate pad wasn't easy though. There were frequently times when I got frustrated because I didn't seem to belong anywhere, couldn't find the groove that I could fit myself into again; at least not in the same care-free, worry-free, judgment-free way that the foam egg crate pad offered me as a baby. Although I never really experienced growing pains, fumbling out of that physical nest certainly had its own internal pains for me - particularly as a teenager. Questions like who am I outside of my disability? How much do my friends judge me for the accommodations I get in school? Can I expect others besides my parents to provide me safety, comfort and support? How do I ask for help in a non-sissy way? Does my tough sarcasm actually make me seem less weak? Oh, the questions filled pages upon pages of journals that ran around in circles in my head or on the side margins of my class notes. They seemed to run on this endless treadmill that I thought would finally stop after I gave up on looking for answers. 

I never did give-up looking for answers though. Eventually I figured out the answers to my questions, and surprisingly many of them I think I knew in my head -- just didn't have the gall to admit it to myself at the time. Most of the time the answers came to me through pure serendipity, on occasions when I wasn't even looking for a solution to anything - I just happened upon them by going through my day-to-day routines and trying things out. Soon these answers came to me enough times that I began to recognize the pattern. It was something like I won't figure out all of these questions right away, but I will figure them out eventually and they don't need to bog my daily life activities down just because I'm uncertain about something. I just have to keep trying and keep stumbling across the right people at the right time, because it seems like that's what everyone else is doing!

At some point that thought process has become my 'egg crate' so to speak. It became my own source of comfort and safety, those are the thoughts that now serve as my gravity to getting myself back to moving forward.

"Sandy did you see what's on the Suggested Items for Your Dorm list?" My mother asked.
"Sheets, laundry hamper, desk lamp, snacks.. the obvious stuff." I mumbled, bored already.
"They also listed a mattress pad. An foam egg crate mattress pad because the dorm mattresses are really hard."
"Oh...so..?" I looked at her dumbly.
"Do you remember when you were a baby.." She began the story again.

Normally I am not someone who likes anything that goes slowly. My wheelchair is always cranked to the highest speed. I expect my internet connection to be lightning fast. I am thrilled when the elevator doors open right when I push the button. And I am usually fervently praying that the person in front of me walk faster.

It's not so much the speed that I'm so obsessed with, it's efficiency. I like when there is progress and no hindrance to my goals, or tasks that I need/want to complete. Don't worry, I fully realize what a maniac this makes me sound like. I have come to mostly embrace my maniacal insane goal-driven-ness; my friends openly tease me about this all the time! "Sandy would it really throw your whole day off if I changed your color-coordinated to-do lists?" (For your information, yes it would.. a lot). But more importantly I have also come to realize the downfall this can have on my interactions with others, or even in just simpler day-to-day activities. The reality of life is that things do not move and progress at 'Sandy-speed' (and maybe that's a good thing!) - things happen at the speed of.. well, life.

Finding the point at which my expectations and real-life happenings mesh can sometimes be frustrating, but I have learned a lot about compromises - thanks, or no thanks to having a disability.

Take for instance when I am having a 'slow day.' These days they rarely happen and if they do they usually don't last the whole day. But a slow day is when I wake-up with one of those aches. These are the aches that feel as if that aching bone is going to give way and become my next fracture. These are the slow days when it feels like I am sitting on egg shells all day long; constantly in the back of my head I am thinking: is it going to break if I do this? Is this the moment when everything goes haywire today? 
I'm sure many of my readers know what a day like this means. Whether you want to call it a 'slow day' or a day of 'less activity,' or a day spent in a wheelchair - in my mind all of that translates into: compromise galore! Compromise doesn't mean that I still can't get the same things done that I set out to do, but it may mean that I ask for more help in getting them done, or that I take a bit longer to complete tasks. What it doesn't mean is that I get nothing done at all. 

It's days like those where I have to remind myself of my own reality. And this is when the trouble begins: I don't always like owning up to the reality of my 'situation.' The idea that I sometimes have to slow down because things hurt is totally disappointing to me. That's an idea that I don't want to accept, am terrified of having it suddenly 'define' me - even if it's only for a day. And it's an idea that I don't want to have anywhere nearby! Often I would rather ignore the facts and continue to plow through my day as usual, and of course the consequences of this can be quite painful.
And that's just it, isn't it? There are consequences when we don't accept ourselves, particularly the parts that we loathe to own up to. I haven't figured out how to do this (in a way that's as painless as possible with ego-still-intact) yet, but when I do you'll be among the first to know! I have high hopes for myself though - hopefully someday I'll learn how to get the entire ensemble to play at the every wave of my baton. (Hey a girl can dream okay?) In the mean time though.... outta my way I got places to be and things to do, HAPPY MONDAY!  

Sometimes I wish I could just make all of the barriers in our lives vanish. Maybe just for a day, just to see what it would be like. Oddly enough - if I were ever actually given that opportunity, I think I would hesitate to act on it. It's a scary thought if you really think about it. What would life be like if we didn't have to try? If there was nothing standing in our way to achieving what we want, what would we do?

Anyway, if I had a choice of getting rid of four obstacles in the world here is what they would be:

1. War. I wish that lives wouldn't have to be lost or put in danger because we want to protect, defend, prove, or acquire something. Note that I'm not saying I'd like to get rid of conflict, because in many ways I think conflict makes the world go round. But the fact remains, I wish people didn't have to die over conflicts that - most of the time - I believe could have been prevented.

2. Prejudice. If we could all act a little more honestly, and without assumptions of one another - I am certain we could also get rid of other restraints. For instance, without prejudice people would fear one another less. Without prejudice there would be far less hate and needless cruelty. But most of all, without prejudice, everyone could have a more equal chance at success the second they are born.

3. Slavery. I'm not about to go on a rant about the multitude of ways and the frequency in which slavery still happens. A simple google search will give you all of the numbers and more information than you could ever want to know about this. I do wish that I could make the idea of one human being owning another evaporate with a snap of my fingers. It's the sad truth that for many of those who are enslaved today - their first step to freedom is realizing they are slaves to begin with. No human being should ever have to realize that.

4. Despair. If I could squash that feeling of hopelessness for everyone, I'd do it in a blink. No questions asked. I don't care about the situation, the outcome, the consequences, the reasons -- I just want everyone to know what hope feels like and to believe in it. For me, that's all it comes down to.

Your turn: Tell me the 4 things you would get rid of in the comments!

Around and around our cul de sac neighborhood I pedaled. Had I been allowed to leave our street I probably would have, but the borders of my little bubble ended at the entrance of Wilson Circle; outside of my haven I knew that down the street was my elementary school, and Cold Spring Park was where my brother played soccer on weekends. My world was the safest place next to Candy Land. I knew every dip and crack in the cement around our neighborhood, I knew exactly when I would have to accelerate to propel up the slope of our driveway, and just how much to turn the handles of my tricycle to avoid the gigantic forsythia bush on the corner. That untamed mass of wild yellow twigs was the sly sea creature, or the amorphous blob, or the creepy alien that I would defeat every time I made my rounds about the neighborhood. Even the scariest thing on my street existed only in my imagination.

One afternoon it was just another day surveying the kingdom from my pink throne that sat atop three wheels. This time I was being chased by the exotic monsters from Where the Wild Things Are. Over and over, every second, I would just miss their claws from clutching at my shirt or from popping my wheels. I sped past my friend B's house who went to school with me, rounded the corner, but the monsters were clever this time around: a fearsome yellow ogre sat blocking my way up ahead. I swerved just as one of its arms flung out, but this time I lost control - this time my throne toppled over and I was knocked to the ground. Instantly my arm broke as I went to brace my fall onto the cement.

I screamed that scream and suddenly my jungle, the other monsters behind me, and my throne dissipated into reality. I was on the ground, my legs stuck beneath my tricycle, and my entire weight on my arm. It wasn't long after that my mother came bursting onto the scene, scooped me up in one arm, righted my tricycle in the other and carried me into the house.
To say that I was rattled would be an understatement. But I was just playing pretend! It was just like any other day in my imagination! Even though I wanted it to be a foaming-at-the-mouth ogre I knew it was really just a harmless bush. How did everything go from such idyllic child's play to a real life nightmare? I thought my world was safe. That was the day I learned that even imagination could be terrifying. I learned  not even my ultra-fast-light-speed-galaxy-trumping rocket ship could be pedaled fast enough to escape reality.

Months later though I was back on my tricycle. Back outside zooming about again, chasing other figments of my imagination and slipping out just in the nick of time from harrowing plots. But I was careful this time around, terrified of falling and hurting myself again, and had become paranoid about tipping over in anything (wheelchair, hi-chair, stroller, booster seats..). During those few months when my arm was healing I wasn't able to ride around, despite this I never let myself forget how great it felt each time I defeated the monsters in my mind. Allowing bones to heal seemed a much easier task than fleeing from a stampede of enormous beasts! The moment I was able to I returned to my daredevil stunts.
The thing was, in my imagination I could experience fleeting moments of power and freedom. In my imagination I didn't have to fear anything, or be afraid of what I couldn't do or find solutions to. Possibility was always in my grasp and reach. I became addicted to the expanse of that thrill. These days I no longer pedal about on my tricycle, and I have long since moved from that neighborhood - but it's nice to remind myself that when we allow ourselves to discover freedom and power, possibility is always closer than we think.


Finding Possibility:

• Don't be afraid to be afraid. Often times realizing what is possible first means recognizing what is blocking the view. 
• Believe you can. This seems so simple and yet in my experience it's the hardest part about anything. Telling yourself you can escape from monsters makes dealing with monsters in real-life a lot easier.
• Get back up on that horse... or tricycle. After I recovered from my injury my parents didn't prevent me from returning to my old habits. Returning to what was once a thrilling activity taught me how to face my mistakes and hurt without giving-up. 
• Within possibility, anything (good/bad) can happen. I clearly didn't realize that I could get hurt doing what I otherwise thought was totally safe. When we take that first step towards possibility it's important to keep in mind that literally, everything and anything can happen. Just because we weren't aware of an option doesn't mean we won't have to face it. Be open to learning. 
• If you think it, pursue it. How many times do we say "Oh I think it could work...but" only to leave it at that and never execute our thoughts? Sure, possibility is there but it won't be handed to you on a plate. If we're afraid to try out or own thoughts, then really, how can we expect to find any possibility? It all starts inside. 

Fewer days are more exciting for me than the day I get my cast off. Roughly ten days before The Big Liberating Event is to happen I start a count down and tell all my friends, including all the strangers I meet who ask me "how did you break your ..?" Without even answering their questions I am usually quick to spit out "I get it off in 10 days!"
So when the day arrives, and the doctor flicks the x-ray up onto the screen - I am just chillin' like a villain, lying flat on the examination table: my hands are tucked behind my head, leg is propped up onto a pillow, and my toes are wiggling impatiently. By this time the cast has usually become a lot looser, and I try flexing my ankle  a few millimeters at a time - smiling happily when no sharp pains trail after my impatient movements.

He gets up from the computer where he has been peering over the x-ray for a few minutes.
"So there's still a very small sliver of a crack left." He tells me, and waits a few seconds for the news to sick in. I stop wiggling and prop myself up on my elbows, suddenly all eyes and ears on edge.
"I think in about another two and a half weeks or so.." But his voice escapes me and falls into some noiseless vacuum where all bad news any doctor has ever had to say goes.
But today was supposed to be the day! Nothing hurts! I can wiggle! And.. secretly... behind my parents' backs I had even been doing my own transfers on the leg, without any pain! This is blasphemy! Sham! The disbelief continued ranting and raving inside of my head.
I am no longer 3 or 4 so I know it wouldn't do any good for me to voice my disappointment. It was clear as day on the x-ray, in literal black and white, the facts were there: the bone hadn't healed completely yet.
After some discussion we decide to go with a bi-val cast, something that I still have to wear all the time but would be able to take it off for baths and showers. He looked at me sternly,
"You'll still have to wear this all the time because the bone isn't strong enough without the support yet." I nodded grudgingly.

Having your hopes dashed can be disappointing regardless of the situation. But in the medical world I have learned a few things about the delicate presence that hope can have. Here are a few of my observations --

Hope is the thing with feathers:

• Hold onto it with or without the facts. In the incident above the hope I had that my leg was healed didn't match up with the black and white image. But that doesn't mean we should give-up the hope! Usually it just means we need to be patient, allow the body to heal more or try a different course of medication. Whatever it is, holding onto that hope allows you to have a kind of standard in which to compare real-time results with. If the test results match up to the hope that you held onto then that might be a good thing, if it doesn't match-up then that helps to inform your next decisions. It serves as a kind of benchmark or check-point for progress, and the best part is that you won't ever be wrong.
• There is always a friend in it. Once you've grasped it then you know that its energy and motivations that hope can exert has no depth. This is important because often times things can get scary and precarious in the midst of confusing medical activity, and when there is uncertainty the environment can be intimidating for everyone involved but particularly for patients. However, if you keep hope near there will always be at least one consistently reliable component in the whole scene that you can look to as a familiar face in an otherwise uncertain crowd. 
• It is low-maintenance. Just have it drifting around in the back of your mind, or even write it down on a scrap of paper if you have to - but that's all you need in order to lay claim to your hope. There is no added cost, no health insurance policy to sneak it through, or extra amenities that it requires. Hope is just there at the ready for you. 

Generally speaking I am not a fan of labels at all (see my past entry about OI labels). But name-calling and verbal bullying is a form of labeling in its most loathsome state; this is a kind of labeling that isn't used to distinguish so much as it degrades, and it doesn't serve as an identifier so much as it discounts. Even if you don't have kids yourself, it's hard to ignore the anti-bullying efforts that have gone viral across social networks, mainstream media, and appear in headlines on a regular basis.
What's poignant about these anti-bullying efforts are the perspectives that they are coming from. Sheesh, can't believe I'm about to utter these words... but... Back when I was a child, anti-bullying efforts came from ridiculously cheesy cartoon characters, or adults who simply told us to "say no!" Or "don't say anything if you have nothing nice to say!" Now the efforts come from targets themselves - individuals who have taken the situation into their own hands and decide to rise above their abusers. We are only beginning to become a society that is able to look at its uglier aspects, even if it means we still flinch and want to look away instead.

The first times I heard the words "cripple," "crip," "gimp," or midget" were unmemorable. I don't recall the 'life-altering' moment when these words were first introduced to me, but it was probably around middle school that I knew these names existed (and isn't this the time when everyone else 'discovers' all the other insults??) No one else in my family has a disability, and I was generally the only student at school with a visible disability or used a wheelchair - with that said, I had no other adult or peer who would tell me the drawbacks and pitfalls of having a disability. I was very much my own lab rat. So when I first heard those words I didn't already know that they were negative connotations, it was the way the kid had said it in a jeering tone or a hushed voice so teachers wouldn't hear. But still, it took me a few years to fully realize that such language (especially coming from someone without a disability) was insulting and not to be tolerated. It also took me awhile to figure out what the words meant, and when I figured that out on my own - I simply decided that I didn't fit those terms so I wouldn't let it bother me.
When someone calls me a 'cripple' I see it as a descriptor of only a tiny slice of who I am. In my mind those labels don't apply to me because I simply don't associate myself with them. I'm too small to ride on most roller coasters but I'm too big to be captured in a one word insult. What can I say? I'm a dynamic person! When someone says that I'm a 'midget' my gut reaction is to say no shit I'm short - good observation skills Sherlock. How about you tell me something I don't already know? Usually it's not long after that the person realizes I'm a 'midget' who will readily give you a swift word lashing if you irritate me enough. Over time I have been able to accept my disability, whether or not I'm consciously aware that I'm even doing so. Being able to do that, in my own way and at my own pace - has helped me build a better sense of myself and identity so that when I am called names, my foundation is not as easily rocked. I've continued to work hard at understanding what makes me Sandy; it will take a lot more than a bunch of ignoramuses throwing around names to undo that.      

Having any kind of disability isn't always the most stereotypical beauteous thing to have. At least not readily, not when the disability is seen by itself, not without some self-produced effort and conscious decision to accept the disability. But acceptance takes work, it takes time, it takes failure, it takes strength.. and all of the other most difficult nuts and bolts of life that a person encounters in one lifetime. I believe that this is why so many resort to rejecting somebody's difference so quickly; simply stated - it's just easier to reject the difference than it is to accept. Just slap a label on it and shove it into some other crowd, or program, or institution and society doesn't have to look at it again for at least another 10-20 years.
But as we've seen throughout history, it's becoming increasingly difficult to just 'slap a label' on something and try to suppress the voices. I guess that the point of this ramble is that addressing bullying issues isn't just about understanding the need for equality, or inclusion. It's far more than the physical safety and mental sanity of our young people. And it should always be about more than the liability of the institutions that these incidents happen in. When we seek to address bullying in our schools (and elsewhere), I hope that there is some aspect of creating a space where every child is able to discover those tougher 'nuts and bolts of life' that I had mentioned above. Call me an idealist or what have you, but I believe that given the chance and opportunity - every young person has the ability to accept, no matter how difficult that process may be.

We can all make acceptance a way of life and not just an ideal we strive for, or a campaign platform we lobby politicians to provide legislation to. Every one of us has something to accept about ourselves; so let's stop wasting time doing something "because it's easier" when it's only robbing us of time we should be investing in something of far more value: bettering ourselves.

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.

Neither of the people I am writing about today have O.I. And I am not about to turn this blog into a political rant. But I believe it would be a mistake for me to leave unmentioned the lives of two individuals, Troy Davis  and Jamey Rodemeyer.

In each of my blog entries I share an instance when a barrier is broken hence the tagline: Breaking Barriers One Post at a Time. I am lucky to be able to share my adventures of breaking barriers with my readers; whether it is by seeking my own independence or disproving assumptions others have of me -- I know that this opportunity is a privilege. Unfortunately not everyone is afforded this privilege and even more so not nearly enough people have a supportive community that stands by them. Regardless of the size of the obstacle or whether it's in the classroom or the Supreme Court, my hope is for every human being to experience personal victory and triumph over what seemed an insurmountable challenge. Sadly for Troy and Jamey that experience won't be one that they will ever know; however, as the loss of their lives weighs on our society and as we consider the implications of their deaths, I hope that our future decisions do not insult their struggles by ignoring the failures that resulted in their deaths. Let's move forward with new standards and expectations for our society that reflect the mistakes we have made; let's not be embarrassed by our failures or leave them as yesterday's headlines, this I know is the surest way that we can work together to ensure that barriers will continue to be broken.

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:


1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!


For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.


(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

• Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..." 
• Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
• Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
• Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas

While writing the post about my self-image and self-worth in high school  I struggled with accurately remembering how O.I. impacted how I saw myself. I could only remember my behavior and the things that I did, not my actual thoughts. Well....
I dug through the archives of my writing and found an essay I had submitted to the OI Foundation in 2003, I was a sophomore in high school. I've reproduced it in its entirety below and after I read it the first time in 8 years I was stunned!

I used to think, actually I still do, that if I could change anything about the world to make my life with O.I. better it would be to live under water. Nope, I wouldn't want to get rid of the O.I. since it's the only life I know. I would want to make the world more adaptable to me. Yes, all of it. What can I say? I dream big.

There is a freedom about swimming and being in the water that is more than just independence. It's more than the fact that I can walk, run, and jump in the water without fear of fracturing. More than just the fact that I can reach things from the bottom of the pool without needing to ask someone. I can do flips, float, and kick as hard as I want. In the water people look at me when I'm talking to them, not at my wheelchair. I am able to swim and keep up with friends and family, never needing to look for an accessible route or a low enough curb cut. In the water, as long as it's not too crowded with flailing and splashing limbs, I hardly have to worry about having brittle bones. When I am walking or jumping in the water I am always amazed by the weightlessness of everything. For someone who relies on her wheelchair most of the time, being able to be mobile on my own two legs (without leg braces) is invigorating. I have tried to explain this to my friends who don't have O.I. but they usually look at me like I am extremely late to the party. I don't know how else to explain it without sounding too cliche, but maybe if humans had wings and could go anywhere they wanted then everyone would understand how I feel about being in water - it's freeing.

Now that summer is in full swing I hope that everyone has had or will have a chance to go for a dip in the pool or at the beach!

On being a mermaid(man):

• I would encourage kids with O.I. to get started early (if possible) on swimming. There are tons of medical literature out there that highlight the muscle and bone strengthening that comes with swimming for O.I.'ers
• When I was younger I used to take swimming lessons at the YMCA; they were always very inclusive and accommodating. My swim teachers would help me in and out of the pool as needed, or adapt water games in class to my needs. I've learned that many swimming classes for babies/younger children allow parents to join in as well!
• In high school my P.E. classes were adaptive and most of the time I spent them at the pool. If you child attends adaptive P.E. classes ask about incorporating swimming lessons
• Water proof casts now exist!! This is such a relief but can be used only for certain fractures (usually if it's not due to a surgery w/open wounds or stitches); you should ask your doctor about getting one if you have a fracture and if swimming is something you do frequently
• Although the weightlessness of the water decreases the risk of fractures, if you're using a public pool be aware of other limbs that might be kicking and splashing about
• Be careful when using swimmies or floating devices. Make sure that the swimmies are not too tight on arms or waists, and if you are using a kick board or other similar thing know that if you push them under water they will pop up at you with quite a blow! (I have had many awkward instances of this happening that have resulted in bruises on my face..)
• The Dreaded Thing: If you break a bone while in the water it is an extremely weird feeling. I have done it a few times and always note how much more it hurts during the transition out of the pool. If this happens, quickly ask for assistance to get yourself into an isolated area and follow the usual routine you have for managing fractures

When I was younger these questions were posed to me a lot: "what is it like to be in a wheelchair?" or "what's it like to be disabled?" Growing up with these questions in mind I would frequently get confused as to what a disability is. Is it a feeling? An identity? A mentality? A diagnosis? All of the above? And how do I incorporate all of those into my daily life? Should I be conscious of being disabled all the time? In other words should I always 'feel' and 'think' disabled?

Needless to say I was and still am one to over think things into a pulp. At the risk of already growing 'silver' hairs in my early 20's, I have done my best to not mull over those questions 24/7. Instead, living those questions and figuring out the answers in the process of life have been far more interesting for me. Still, once in awhile I find myself slipping back into the cycle of self-wonderment. Recently I started thinking about the times when I do not consider myself 'disabled' in an attempt to understand the times when I "am" disabled.
For instance I always begin my day "not disabled." I wake up in bed, look at the ceiling or out the window and stretch. In those sleep-wake seconds before I turn to look at my empty wheelchair parked next to me I do not consider myself 'disabled.' In fact, to be quite honest, I consider myself rather be asleep because I am not a morning person. Then when I reluctantly clamber out of bed and slide into my wheelchair I am still not disabled. I'm just grumpily trying to figure out what crevice my seatbelt has slipped to now and prepare to sloppily push myself towards the bathroom. As I get into the shower and then get dressed I'm not disabled, I'm just trying to throw clothes on my body and get myself out the door. I'm not a make-up person at all. In my blunt opinion whenever I think about putting make-up on myself I think that somewhere in the world a clown is doing the same thing... and to be honest, I live my life to entertain myself, not to entertain others.

Maybe around this point in the morning I first notice that I am 'disabled.' I look at myself in the mirror that is angled down towards me, the reflection of me sitting in my wheelchair looking back at my now 'a-little-more-awake' self. I notice how the bowing of my ribs almost forms a barrel, but then when I think of barrels I think of too much beer and once again for those .09 seconds I am not disabled. I am just a 20-something who likes to party with her friends. And then I know that despite having length to my femurs my lap is somewhat non-existent because they too are bowed  from too many fractures and misshaped collagen. I scrunch up my face in an attempt to make it less triangular but after awhile my face muscles will get tired and things will slip back into their broad forehead and cone pointed chin. My arms were never like airplane wings when I played that game as a kid, it was more like I had the arms of Frosty the Snowman - the crooked branches of an old tree. The lower half of my arms drop down past the bend of my elbow, it's like an upside down shrug. But even still, after grinning at my overly large head in the mirror and puffing up my cheeks to make a monkey-face I don't consider these features of me 'disabled.' They're just me. They are all characteristics that can be categorized as symptoms of the O.I. Like each of the different designs on the gingerbread cookies my friends and I make every year during the holidays, they're distinctive.

After all of this maybe then, I remind myself I am disabled? I head out the door and wait for the van that picks me up, or for someone to lift me into the car and put my wheelchair away. It's probably in the van where I am sitting for sometimes 5 min or more - that I think "just another part of the process." And I watch as the driver puts the useless velcro strap on me, then fiddles with the wheelchair tie-downs, then fiddles some more with the seatbelt (even though I already have a seatbelt). So by the time the entire process is done I feel like I am actually on the way to the insane asylum from all the straps, and not just ... on my way to work, or to cause a ruckus with friends. And sometimes on that van there are old people. And never will you see the miracle 75 year-old totally ripped grandmother on the van - I mean, OLD people. They have walkers and oxygen tanks and admire the speed at which I am able to zoom in and out of the van - and the precision with which I am able to park.
But then after all of that is done and I go about my day: as I wait for the elevator, or the accessible stall, the construction workers to move, look for the curb cut, look for the accessible entrance, hope the car sees me despite being short, raise my wheelchair seat to reach the bank teller - I am not thinking "this is me being disabled." I am only thinking "how do I accomplish what it is I need to get done?"

Of course this mentality is much "smoother" for me now that I am older and do not fracture as much. But even as a child when I did have more casts on more frequently, I didn't think of breaking bones as having a disability, or the times when I needed my wheelchair reclined as 'being disabled.' It was just "how do I continue to go on living?" And now as I'm older when people ask me "what is it like to be disabled?" I want to ask them back, "what is it like for you to live?" I may not know much but I think I'm beginning to find out that the answers are not too different from one another after all.