Perfectly Imperfecta

Wrap-Up

2012-03-02T08:00:00.000-05:00

Barrier Breaking Tip: Consistency is half the battle in order to overcome anything. When we bring the same energy and determination to challenges everyday, we become that much closer to realizing positive results. Often times consistency is simply doing what you did yesterday, but changing at least one thing that scoots you closer to your goal.

Monday: It's as simple as A, B, C!
Tuesday: Despite my post-op state of mind there is always someone there.
Wednesday: Thanks for another month! I'm excited for what the future holds :-)
Thursday: Accessing possibility through imagination makes reality less frightening.
Fracture Free Friday: Taking a break from the Q&A this week. Check back next week!

Possibility is Closer Than We Think

2012-03-01T13:01:00.001-05:00

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.

Many Thanks to You!

2012-02-29T08:00:00.000-05:00

Hello readers!

At the end of every month I usually write about the 'top post' for that month, but before I reveal February's top post I wanted to take some time to talk with you!

When I began this blog I was just looking to connect with whoever was out there looking for tips to manage life with O.I. Needless to say that original mission has morphed into something much larger than just life with O.I. The purpose of my entries have begun to send a message that's about more than how to handle fractures, and it's about more than how young kids can tell their friends about what O.I. is.
The truth is that... well.. I'm not always sure exactly what that message is yet. I am still learning with each post that I make how to connect with people, how to create a community, how to write better, how to have an online presence, how to advertise, how to market, how to cater my message to different age groups/populations/needs.. and at the most basic level how to effectively help people break barriers. If at the end of the day the blog still serves that singular purpose, I know that I am still on target and still achieving my initial goals. Thank you so much for giving me that opportunity and for helping to achieve those goals!! For that reason alone I know I have some of the most incredible fans and supporters a person could ask for!
As the blog has grown and evolved, I have recently become acutely aware that whatever is happening with the blog is a change that is completely organic. I am not sitting around a table in some office talking with 12 (or even 3 others) about the direction the blog is going; and nor am I manufacturing some sales pitch for grants or corporate funding so the blog will continue. It's just us in this barrier breaking process - just you, me, and the community of people that we are among. With that in mind, I also wanted to take some time to say THANK YOU for helping the blog grow and change, even if no one is totally sure where we're headed or what this will bring about. It's exciting and I am truly happy to have each of you on board, especially as Perfectly Imperfecta is quickly approaching its FIRST BIRTHDAY in just a few months!!
Like I said before, the blog is about breaking barriers. But one of the surest things I have learned about that is this: without the support and backing of others, overcoming our challenges is damn hard. In other words, without you and your willingness to read my ramblings, and share those ramblings with your friends & families - this would not just be damn hard.. it would be impossible for any of us to do this!

Oh alright. I think that's enough o' that already eh? Here's February's top post of the month! "Nothing else I'd Rather Be Doing." See ya in March okay? There's a whole world of time out there, just waiting for us to get busy and make magic happen - let's hop to it!

*Each top post of the month is decided by you. Every month I post the most read, widely shared, and most popular blog entry.*

Nothing Else I'd Rather Be Doing

2012-02-28T08:00:00.000-05:00

For a few seconds I believe the bed has swallowed my entire body, leaving only my eyeballs. At first I can feel nothing else, and my brain seems to still be wiping the dredges of the anesthesia off - for the time being it can only send a few bursts of signals to my eyes. All I see are the glaringly obnoxious fluorescent lights above, then the curtain divider, and then from the corner of my eyes the machines with all of its wires that are all heading in my direction.
Meanwhile the room has begun a slow counterclockwise tumble: the ceiling melts into the wall, the fluorescent lights look like they're about to fall on to me and then there it is -- the tips of my fingers brush past the top of the cast. The familiar dimpled ridge texture of the fiberglass cast sends my brain shooting down memory lane, and then it all comes back to me: a rod surgery on my left tibia.

I yak up stomach bile as I always do after operations. It's the final signal that says: okay your body is awake now. The nurse holds out a small cup of water for me as I hungrily gulp it down, like it's some kind of mirage that might disappear on me any second.
It's sometime between when I first remember what has happened and the time I am given my first sips of water that the pain hits.
"It was a long surgery, Sandy. Far longer than anyone expected. It lasted 6 hours and Dr. Shapiro had to make 4 breaks into the bones." The nurse tells me.
Still not really able to form complete thoughts yet, I make a sound that is something between a groan and a cry. My hands grasp at the fiberglass cast, fingers scratching at a leg that only that morning I had been able to touch the skin of. Now it lay in several pieces, with all kinds of hardware screwed into the bone - that thought alone made me squirm.
"Don't be afraid to push the pain button, okay?" She put a small buzzer into my right hand, the one that wasn't already swamped with I.V.'s swarming about. I nodded my head, half rolling my eyes to tell her that I already know all too well what the pain button does.

After my vitals are checked again, and a room upstairs has opened up I am rolled to the 9th floor in a room that is across from the nurse's station. It's the room I am always in after rod surgeries, a single room to myself with the border of animal decorations going around the walls. The first night after surgery is always the worst for me. The throb of pain ebbs and flows all throughout the night, the morphine makes me frantically itchy, and my dreams are a mix of lucid reality with the backdrop of pain medication. In short: I have no idea what is going on.
Several times an hour various nurses will come and check on my vitals. But the blood pressure stands that give my arm a gentle hug at midnight, then 1AM, 2AM, 3AM.. has appeared to me as various morphed alien-octopus creatures with tentacles that squeeze for a bit then get ripped off.

In the dim of the night light, and mixed with the neon glow of the machines I could tell he was wearing a large blue cookie monster t-shirt. Must be one of the perks of working at Children's Hospital I thought. Rarely do I remember anything about my stays as an inpatient, especially during the first night after an operation - but for whatever reason the guy checking my vitals that night made an impression. He was going about his business, jotting down my numbers and adjusting my oxygen mask when all of a sudden I blurted out:
"Wouldn't you rather be somewhere else?"
He stopped what he was doing and looked down at me, smiling,
"No of course not! If I were anywhere else I wouldn't be able to help you and there's nothing else I would rather be doing."

To this day I have no idea what spurred on my question. I don't remember what my thoughts were before I asked it, but it's pretty obvious that I wanted to be somewhere far away from the 9th floor of the Children's Hospital in-patient floor. But his response comforted me the rest of that night, I remember I slept as comfortably as I could knowing that despite my drugged and broken state of being - there was someone in the world who wanted to be there to help hold me together.

ABC's of Breaking Barriers

2012-02-27T08:00:00.000-05:00

A: Awareness of yourself and what you're up against should always be at the forefront of your mind.
B: Be yourself. That's the easiest and surest strategy in the face of any difficulty.
C: Confidence. Have confidence in yourself because when you do, others will follow suit.
D: Dare to achieve. It's like the game kids play except this time you're only proving it for you.
E: Energize. This often means resting. Pause for a bit and take a breather.
F: Focus. Tune out the distractions and hone in on what you want, your plans, your goals.
G: Growth. When we grow it means progress is present, just remember it often comes with pains.
H: Heart. Act with compassion and sincerity as you strive towards goals. Practice empathy.
I: Imagine. Think outside the box, solutions often require some creative thought.
J: Join. You're never alone in what you're fighting against. Seek others, join forces.
K: Keep at it. What more is there to say?
L: Laugh. Having a sense of humor about yourself makes the process less tedious.
M: Muster up every morsel of courage and strength in you. Because you are mighty!
N: No. Learn to say that word, and mean it.
O: Optimistic. Staying positive in your mind helps bring positive results.
P: Perspective. Keeping perspective allows us to stay realistic about challenges.
Q: Question yourself. Throughout the process ask yourself if this is what you want.
R: Rally your friends. Surround yourself with awesome people!
S: Savor your victories. Remember your wins for when times get tough.
T: Thank often. Those you thank will be quick to return when you need them most.
U: Unabashed with your efforts. Try, fail, and then try again. Repeat the whole process.
V: Vent. Bottling up your frustrations can make it difficult to move forward. Air it all out.
W: Witty. The thing about barriers is that you can always out-wit them.
X: Xtra mile. Make the journey on that xtra mile frequently, eventually it will lead to success.
Y: Yin and yang. Strive for balance to stave off stress and other feelings of being overwhelmed.
Z: Zany. You've gotta be a little off your rocker to be successful.

Wrap-Up

2012-02-24T09:02:00.000-05:00

Barrier Breaking Tip: With enough practice (and mistakes) you can turn any action into a habit.

Monday: Yeah, yeah, yeah I'll get it done.... later.
Tuesday: A few tips on garnering authority from a small package.
Wednesday: Seriously though, how am I even supposed to respond to that?!
Thursday: The realm of possibility is infinite with these characters
Fracture Free Friday: What makes life [with O.I.] easier?

Also, did you hear yet? Perfectly Imperfecta is on Pinterest! Join me here.

Top 5 Books for Kids

2012-02-23T08:00:00.000-05:00

I'm going to take a slight detour from usual blog content today and talk about one of my passions: reading. We all have our escapes and for me it has always been fiction, novels, and characters I wish I could befriend in real life. Growing-up I was a voracious reader and many of those characters I met waaay back in the day I still keep close to me today; they're the ones who first helped me realize everything is possible! Here are a list of my top 5 books for kids:

Matilda - Roald Dahl

Matilda - Roald Dahl. “Matilda said, "Never do anything by halves if you want to get away with it. Be outrageous. Go the whole hog. Make sure everything you do is so completely crazy it's unbelievable...”

The Phantom Tollbooth - Norton Juster. "What you can do is often a matter of what you will do."

Harriet the Spy - Louise Fitzhugh. “[Harriet] hated math. She hated math with every bone in her body. She spent so much time hating it that she never had time to do it.”

Mr. Popper's Penguins - Richard Atwater. "Now a penguin may look very strange in a living room but a living room looks very strange to a penguin."

The Cricket in Times Square - George Selden. "Talent is something rare and beautiful and precious, and it must not go to waste."

What are some of YOUR childhood favorites? Let's get a list of recommendations going in the comments section!

What am I Thinking?

2012-02-22T08:00:00.000-05:00

There are a handful of sayings I get told a lot that I rarely verbalize a response. Mostly because I am afraid it will sound rude, and partly because I'm not sure if it's inappropriate. I am also still trying to figure out that fine line between other people's ignorance vs. their way of caring. The last thing that I would want to do is to dash off someone's attempt to care despite the fact that it may come off as ignorant.

Anyway, here we go:

Them: I wouldn't be able to get out of bed if I were you.
My Thoughts: Well, after that comment I wouldn't even call myself a human being if I were you!

Them: You are such an inspiration to be able to do all that you do.
My Thoughts: Not really, I'm just willing to work and try a little harder. And more than willing to fail. (<-- that's a secret between you and me)

Them: Aww sweetie, are you okay? Oh you poor thing.
My Thoughts: I'm fine, but you should get your head checked out. I'm not a lost puppy in the rain.

Them: It must be so frustrating for you to have to deal with this.
My Thoughts: To deal with your assumptions? Yes. To deal with my life? On the rare occasion. I mean, I've made it this far haven't I?

Them: I can't imagine having to face the things you must face everyday.
My Thoughts: I can't imagine having such a narrow perspective. But anyway, aren't we all living beneath the same sky?

Powerful Things Come in Small Packages

2012-02-21T08:00:00.000-05:00

As a young child it was easy to get people's attention. Until about age 11 I remained the size of a small stuffed animal, and have been told that I was irresistibly adorable. Many adults were curious about the fragile seven year old who could converse with fourth grade vocabulary, but appeared to be the size of a two year old, and scurried across floors with the confidence and speed of a fourteen month old baby. Growing up I remember there was usually someone rapt with attention as my parents patiently explained my curious stature and why "the whites of her eyes are so blue." Among adults I had become used to being in the spotlight, accustomed to being listened to because of what I looked like and what I had.

Fast forward fifteen year later and that seven year old is not much taller and could easily be mistaken as a 12 or 14 year old teen. Except that at this point I had just finished school, had a college degree and was about to start my first "real adult job." It was an AmeriCorps position where I was doing a year of service at a community college in Boston. A real adult job that had real adult responsibilities; I had my own office, extension, email - the whole nine yards at a place where looking cute would no longer matter to anyone.

My job was to put together a mentoring program that served first-generation community college students. Most of the students were older than myself, some had had years of life experience, some were veterans who were not much older than myself, many were parents and they were all at various places in their lives but knew that they wanted some guidance to help steer them in a direction toward success. Suddenly the spotlight I was in was not so much because of what I looked like, but more because of what I was asked to do. At least I knew that much was true; however, I found out quickly enough that it would take awhile for this truth to sink into the community that I was serving.
Who is this young person that is suddenly trying to put together a mentoring program for us? And what does she know about how things work here? She's so small and soft-spoken our students aren't even going to listen to her. These were some of the question I was up against and the attitudes that were pervasive for the first half of my year of service.
I quickly realized that things were different now than they were for me when I was a kid. I needed people to pay attention because of what I had to offer. I wanted the attention away from myself, and instead on the need that I was confident that I could meet. I would need to take on more of an authority figure than I was used to, and somehow fish out of thin air at least 24 more inches to add to my height. Needless to say I was well aware that I had my work cut-out for me.

After months of research, interviewing, and performing assessments on students and staff members to figure out what kind of mentoring program would be needed, it was time for me to present the findings. I would be presenting to the school's Board of Trustees, the President of the college, other members of the Cabinet, and various faculty members. Going into the presentation I told myself this is it. I thought to myself this is my chance to own up to the work that I've done because in this presentation nothing else matters, nothing else should matter but what's best for the students at the college.
That day I was still 3ft tall, as tall as I had been since age 11 and as tall as I will ever be. I still had a pip-squeakish soft-spoken voice, I was still in my first "real adult job," and was still the youngest employee at the school. Not much had changed except that by putting the needs of an entire population of students before myself, I grew to be taller than everyone else in that room. It was me who had the upper hand in that moment, I was the one who was offering a real solution, and while it was nerve-wracking for me to defend my findings to the Board of Trustees - when I responded I realized that I am the one who is speaking with the most authority and knowledge on this topic.
Since then whenever I am confronted by another moment where I might be physically 'dwarfed' by others, I look to what's at stake --

Authority in a Small Package:

It's not about you. People look to leaders who are comfortable with themselves and are confident in varying situations. I have learned that if I make it about how nervous I am or how diminutive I feel, then that's all folks will see. But if I make it about what I can offer and what I know, I can easily switch the focus away from my more vulnerable aspects.
Authority is only gained with respect. And as we all know, gaining respect takes time. For authority to work you need an audience that will listen, and people will only listen if they respect you. Build respect and trust, thankfully these aren't things that require any great height or physical strength to acquire.
If you doubt yourself then others will follow suit. When we think about why we don't think we're capable, is it because of what we're telling ourselves? Or is it because what others are telling us? When we tell ourselves that we can't give the speech then it's not going to matter how others perceive us because already we've talked ourselves out. But when we tell ourselves we can give that speech, the way others perceive us can become fodder for us to prove wrong. And who doesn't like a good ol' "Hah! I WAS right and YOU were WRONG!"
Eye-contact. This is one of those tricks that I have had to practice a lot. Just because I am short doesn't mean that I need to physically look-up or look-down at anyone. By matching someone's eye-contact we are already beginning to present ourselves to be capable of playing on the same playing-field. It also conveys a sense of seriousness and an air of 'adulthood,' when we are naturally able to do this.

Excuses Shmexcuses

2012-02-20T12:41:00.004-05:00

How many of us make excuses for ourselves? Probably everyone. I myself am notorious for saying "okay, I'll get it done later." These are the things that we tell ourselves because we would rather not deal with something, or just don't have the time to complete a task right at that moment. Since we have created these statements on our own, we inevitably end up listening to these excuses.

How many of us hear excuses that are made for us? Probably everyone too. The difference between excuses that others give us is that it's not internal, and we do have the option to hear these statements. But what's evil about excuses is that they are so often the easy way out of things. They are tempting to buy into, the reward for taking an excuse is readily there at your front door, there's no effort or work to it - just nod and sign your name.

"Aww it's okay, don't worry about it - she's disabled."

"He didn't quite meet the requirements, but it's okay since his abilities are limited."

"Well that's good enough especially given what she has to go through already!"

"We don't expect him to do all of this because he's in a wheelchair."

But from my own experience I have always found that accepting the excuses others present to us is quite frankly boring. There is no adventure to it, the ending of the situation seems to have already been known, and I find myself crossing the finish line guiltily because the "win" seems undeserved.
I have also observed that people are quick to present an excuse for people with a disability because it's just easier. But only for them.
There is nothing easy about swallowing assumptions that are being handed to you. Each time this happens a person is ultimately accepting a limitation that is being enforced by someone else out of various conveniences. Every time I have done this it seems like I have willingly taken on some part of me that is false or a fraud. For instance I have thought: "really? Did I really just agree that getting admitted to the aquarium for free makes up for the fact that it's not accessible? So getting a free ride is the solution to inaccessibility?" This is an excuse because it's just easier and more convenient, but for who? Since I can only speak for myself, free-loading off of society or our communities is not an image I want to reflect who I am.
By giving someone an ending that is already known is the easiest way to face fears, or to dissuage any discomfort. For the person with the disability? I often times see it as an assumption that people have of me, or a stereotype that at that moment I have the choice to either promote or change.

My FM system had died minutes before and my policy debate partner and I were prepping for the next round of the competition. As we shuffled through papers and talked over strategies for potential arguments, I kept glancing over to where it was being charged - hoping that the little red flashing light would miraculously turn green.
"Are you sure you'll be able to follow the arguments?" She asked me. Visibly nervous about whether or not I would be able to perform as well. [If you are unfamiliar with policy debate, just youtube it and you will see high school students gasping for air as they careen through 8-12 arguments in 2 minutes. Yes I was one of those nerds].
"Yeah I think I'll be okay. I'll just sit a little closer in front and not off to the side to read his lips better."
"Okay, it's just that they're one of the best teams in the state. I mean we could have someone substitute for you, he's gonna go fast and I don't think that you'll - "
"I'll be fine" I assured her.
During that next round my partner and I had better communication between us than all the previous rounds. We scribbled notes, changed courses of arguments, and were on the same page when it came time for us to respond. Maybe it was because we stepped up our game in the face of a tough challenger, but I think in large part it was because we were both focused and more determined to not miss a single word. The truth is that we were more than fine. We had won.

Excuses can come from the most well-meaning people like our families, friends, parents, teachers. They might not always come off as negative, and we might not even be aware that it is an excuse that we were just handed - the point is though that every time we hear a statement being made about us we have the choice to agree with it or disprove it. What could have been an easy exit may very well be your next opportunity to act.

"I must create my own system, or be enslaved by another man's; I will not reason and compare: my business is to create." - William Blake

Wrap-Up

2012-02-17T09:06:00.000-05:00

Barrier Breaking Tip: Often times points of struggle and conflict are awkward or uncomfortable. Instead of leaning away, lean inwards - putting ourselves through difficult situations is the surest way we continue to grow.

Monday: A letter of appreciation to my wheelchair.
Tuesday: Happy Valentine's Day! 5 Tips to ensure you're taking care of YOU!
Wednesday: Hope is the thing with feathers... and other observations of hope
Thursday: Coming back from an injury can feel like starting all over again. Don't give-up
FractureFreeFriday: This week's question I answered was "is it difficult being the only one?"

Like any post in particular? SHARE IT with your friends & family! Or you can encourage your friends to become fans of the facebook page by directing them to: facebook.com/oi.perfect

My readers are the ones who help make all of this possible - sharing is how we can all continue to break barriers one post at a time. Thanks!!

Back at Square One

2012-02-16T08:00:00.000-05:00

As a technology dependent nerd who always has her power wheelchair cranked to the highest speed, I have become someone who expects instantaneous results. These are no longer just habits of mine but have become a way of life, and it's not something I'm necessarily proud to admit.
I'm driven by progress that is tangible, things that I can see and acknowledge so that I know what to do next in order to reach my goals. Those are often the day-to-day things that drive me to continue. When I have a great one-on-one session with a client I am energized to do follow-ups. When I do well on an exam in school I can factor that into my GPA and make note of the study tips. When I successfully talk my friend into buying me lunch I know what methods of persuasion will work for the next time. But what about the things that I have less patience with? What about the things that aren't so tangible and the progress I won't be able to see for years to come?

Slipping my wrists through the crutches I recalled to memory the crutch, step, crutch, step pattern that I had just gotten under my belt before the rod operation. It was now eight months later and my physical therapist had gotten the green light to have me walking again; she was excited, I was cautiously excited, and everyone seemed to expect the latest rod operation to do wonders. There was talk of me walking for longer distances, for longer periods of time, maybe even some day navigating stairs in the crutches. But at that moment I couldn't see the end result and was frustrated that I had to begin at what seemed like square negative eight before getting to even square one. I even thought to myself "why am I doing this when it's just so much easier and faster to zoom around in my chair?"
I sat on the foot plate of the chair, crutches dangling from my wrists and looked up at my physical therapist,
"I have to start ALL over again?! This is gonna take forever and be so slow and annoying."
"It's going to take time but you'll get there." She assured me, motioning to get a move on already.

So I took a few steps and walked for about 15 yards and every ten yards my P.T. would ask me "how do you feel?" I was focused on the floor, my brain had little else going on in it aside from the crutch, step, crutch pattern - remembering which foot to move when after which crutch had moved forward. Without ever looking up at her I kept my eyes trained on what I was doing, I told her I felt "fine" each time she asked. In my mind I was eager to get to meet the expectations everyone had about me walking further and longer, I wanted to do it on the first day back to walking. I wanted results and immediate progress.
After however many yards my legs started feeling weary, my arms trembled a bit in the crutches, my palms had become sweaty against the grip, and the next time my P.T. asked how I felt I gave in and said "tired now."
"Do you think you can walk back to your chair?" She asked me. Slowly, I turned around and looked at the distance I had covered, it was enough to make the chair look like a speck in the background. I could just barely make out the foot rest that I had sat on just twenty minutes before.
"We can sit on the carpet and rest for a few minutes before we head back" she suggested.

In my naivety to break expectations and shatter standards on DAY ONE, I have slowly come to realize that there is a huge gap between day one and the eventual realization of my goals. What fills this gap? Persistence. Focus. Determination. But above anything else, most of that gap is going to consist of your energy to keep the urge to quit at bay.

Fight the Good Fight:

Don't get lost in translation. When you think about step one and how it will ever get you to your goal, it's easy to get intimidated by that distance. But don't feel warped by the distance! Translating step one to meeting your goal means taking just one step. And that's all that it means.
Be realistic. Goals are goals because they require a plan and a time frame. Tasks are things that take less than a day to complete or require fewer steps. Ask yourself, are you completing a task or a goal?
Don't miss out on anything. Despite the thousands of ways that we can now record and share our lives, it's still easy to miss out on opportunities and people if you're always rushing to complete a goal for the sake of completing a goal. Look around every now and then, evaluate, recommend, or maybe take a few steps back.
Look back. When you do take that first step remember how great it feels. The thrill, the excitement, the uncertainty, maybe even the terror of it - so that as you're moving on towards your goal you can strive to create more of those moments or relish in the progress you are already making!

Hope

2012-02-15T08:00:00.000-05:00

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.

Hope is the thing with feathers

That perches in the soul,

And sings the tune--without the words,

And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm

That could abash the little bird

That kept so many warm.

I've heard it in the chillest land,

And on the strangest sea;

Yet, never, in extremity,

It asked a crumb of me.

- Emily Dickinson

Happy Valentine's Day!

2012-02-14T08:00:00.000-05:00

Dear Readers!
In honor of this day I wanted to make sure that my readers are being taken care of. So much of this day can be lost in the chocolate, flowers, and Hallmark cards... but we have to remember that none of that is going to matter if we don't each appreciate ourselves first! With that said I thought I'd give a few of my own tips of how to appreciate ourselves -- Enjoy!

5 Tips to Appreciate Yourself:

1. Get Rested. Are you on the mend from a fracture? Just getting over a stomach bug? Whatever it is that you think you must get done right now - could probably wait at least another 30min. Take a nap! Personally, I am a big fan of naps now that I am over the age of 18.. Feeling physically energized and well rested is one of the surest ways to tell your body that "yes that New Years' resolution wasn't just for the first 5 days of 2012, I do intend on putting my body first this year.."

2. Take time for a pastime. What's your hobby? What brings you joy? It doesn't need to be an extravagant time consuming thing, it could be as simple as going for a walk, seeing a movie, or painting! The point is to bring joy to your life by allowing your mind and soul to mingle together over something fun. Just ask my friends, I work a lot and it's annoying for them, for me, and a lot of people around me. But by allowing myself time to read fiction or play a few tunes on the piano, I am able to de-stress and am a far more pleasant person to be around. I see it as downtime to recharge while still being awake and conscious.

3. Go do that thing you've been meaning to. Seriously, why are you putting it off? Do you have a legitimate reason? Or is it because you've just been too distracted and 'busy' with the trillion other things? We all have those little things on our list of "things I've always wanted to do.." that have gotten pushed to the back burner for long enough. By allowing ourselves time to explore new things, accomplish new tasks, learn new skills we are able to grow and expand as people. It's exciting! It's refreshing! For the longest time now I've been meaning to write a new song on the piano, so finally over the weekend I dug out the keyboard and got to work. It just so happens that I was able to accomplish a lot more than just writing a new song, I re-discovered a thrill and challenge that I have missed for a long time without even knowing it.

4. Belly laugh. (The other part of that being)... at yourself. If you're not good at it, then get practicing because being able to find humor in yourself sends positive vibes radiating for miles around you. My favorite people to be around are those who willingly laugh at themselves, who are comfortable and secure enough in themselves as people to be able to say "you know what, that freak out that I had was ridiculous and absurd.." Last week I realized that I was overly stressed out and anxious the whole week (to the point of almost crying every night..) when the thing I was stressed out about wasn't even that big of a deal. This week I have to face the same thing, but after having chuckled at how ridiculously spaz-monkey I was being about it last week - I now know that I don't need to waste so much energy stressing out about it anymore!

5. You are awesome. We all have things that we need to improve upon, personal faults that we wish we could change, personal goals that we wish we could have accomplished (..2 years ago..) - but now's the time to trust yourself that all of that will get done. It will get done because you are a capable person who appreciates themselves, and by doing so the rest of your effort and thinking that you put to whatever it is you aim to accomplish will all be coming from a confident place filled to the brim with your own positive self-worth. So go ahead, look in the mirror and tell yourself that "I am awesome!" Go ahead.. I'll keep a look out and make sure no one's watching..

Dear Wheelchair,

2012-02-13T08:00:00.000-05:00

Before you came along there was the stroller, a carriage that my parents would pop me into as we went around Disney World - I sat alongside my younger brother who is seven years younger than me. (A ten year old girl wants very little to do with her three year old brother, never mind be mistaken as fraternal twins). And before the stroller it was the gracious and gentle arms of adults (usually my parents). Sure, through these means of height and transportation I was able to see much of the world (I saw the Great Wall of China in a baby carrier on dad's back), but I didin't really learn how to experience life until you came along.

Before I had a pet rock or attempted to grow my baby pumpkin that we picked in Kindergarten, you had already taught me what it means to care for something else. You showed me why it's important to keep your quick-release button axles well oiled and cleaned; you showed me what it means to give a little when it came time to release the tightness in your brakes (so I could brake on my own!); or what it means to grow with a person when it was finally time to lower the foot plate another notch (you sat there silently glowing back at me with pride). And don't think that your selfless accommodations have gone unnoticed! I appreciate the countless times when you've extended leg rests to ensure that the gigantic cast on my leg is properly elevated. And when the doctor tells me that he can't see the fracture in my ribs, the way you tilt back ever so slightly lets me know you care about making sure I can still breathe easily. You're there with me through sickness and in health.

My upper body strength has increased exponentially over the years thanks to you. Though I don't have a career in weight lifting or body building, the pay-off has been huge! Up until a few months ago, the last time I broke my arm was sometime in middle school - more than 10 years ago!! At the start of each school year I loved racing around the newly cleaned gymnasium, popping wheelies and doing donuts as I whipped around the pretend ice rink in my head. I'm so glad that you have been able to share that joy with my peers who aren't in wheelchairs, a part of me almost wanted them to be jealous of what we could do and they could not.

On the flip side you are usually the closest thing to me when it's my turn to feel jealous and sit on the sidelines, watching everyone else. Your lap becomes the place where I am able to grow silently sullen, your sense of tough love is apparent as you remain rigid while I slump a little in the seat. You're the space that allows me to feel pitiful without judgment or condescension. But when the moment is over you remind me that it's time to move; you remind me that I have to literally roll myself along because I have a choice, at the end of the day, will I choose to push myself along or will I allow myself to sit there along the sidelines? I'm thankful that whichever choice I make you've literally got my back.

People who see you and think "wheelchair bound," "handicapped," or "wheelchair dependent" really have no idea what they're talking about. Their lack of understanding fails to take into account the fact that like any other successful relationship, this is a two-way street. I am not always using you, and you're not just some mobility device that is forever accommodating me. Most of those people weren't there when, together, we learned how to open doors that didn't have automatic-buttons; and the two of us know that there was nothing "wheelchair dependent" about showing the conductor of the train how to operate the lift on public transportation railways.
The two of us also know that there is nothing "handicapped" about being able to run someone's feet over, especially if the person had it coming - there is a power and self-righteousness about the position you put me in in society. As I have gotten older you've showed me more of these instances: how to recognize them, what to do, how to act, where to park, how to leverage your four wheels and cushioned seat in a way that allows us to roll onwards to success. These are things that my parents and teachers couldn't have taught me even if they tried - it had to come from you.

Well, I just wanted to take some time to write a thank you letter of appreciation. I appreciate how you've helped me to experience life in more ways than anyone else could ever dream up. Please know that even though I get annoyed when your wheel bearings give me trouble, and that I complain about your lack of automatic umbrella to shield us both on rainy days - I really couldn't have sped along without you rain or shine.

Sincerely yours,

Sandy

Wrap-Up

2012-02-10T11:40:00.000-05:00

Barrier Breaking Tip: Your obstacles can only be as big as you choose to see them. Bite sized pieces are easier to swallow than the whole chunk. Hurdle over a small wall first, then begin your barrier breaking streak from there!

Monday: Make it a habit of treating yourself the way you'd like to be treated. People will take note.
Tuesday: Lessons learned from swim class - Feeling a lil bit nekkid!
Wednesday: What are some ridiculous responses you've given? Laughter does the soul good
Thursday: Asking for help isn't one of my strengths. Here's how I plan on being better at it.
FractureFreeFriday: How do you keep above the day-to-day struggles?

Picking (Winning!) Compromises

2012-02-09T08:00:00.000-05:00

It's no secret that I am terrible at asking for help. Admitting that I need assistance or that I just don't know something flies into direct conflict with my stubbornly independent personality. Do I like making things more difficult for myself? No, of course not! But in the moment when I have the choice between opening the door on my own or pushing the automatic button, or asking someone to get the book off the highest shelf vs. climbing on top of my wheelchair... for some reason the route that involves only myself accomplishing the task is way more appealing. This is all despite the fact that I know the consequences of not seeking help could potentially be physically painful. Sorry, parents!

Some part of me probably wants to prove over and over again that I can do things on my own, regardless of how difficult it may be. But I would like to think that at this point in my life I no longer need that egotistical reassurance - please - someone who is older & wiser tell me otherwise! Another part of me probably dislikes seeming helpless or weak, even though I know, I know, I know realizing that I need help and acting on that takes great strength. But like I said - when I'm in the moment it's just so hard to resist that urge..! Recently I was talking to someone who is older and also a wheelchair user (non-OI'er) about getting assistance, and he phrased it in a different way for me (re-phrasing here): "You could see asking for help as a compromise, and you'll realize that you need to make certain compromises in order to focus your energy and attention on doing other things you care about better."
Compromise. This isn't a concept that anyone is new to, we are all making compromises everyday in our decisions. For someone with a disability these compromises might be a little more apparent and visible than others. An example of this is when I decided to not press the automatic button that opened the extremely heavy door, and as it closed it slammed back into me and thereby fracturing my arm. So when he talked to me about making compromises to avoid consequences that detracts from my ability to do things I care about, I understood right away. I certainly could have done without spending physical energy on healing, and without the time that I spent at the hospital if I had just...push...the damn button...

But still, this doesn't mean that I now know how to pick and choose my compromises. It would be unrealistic to ask myself to always choose to compromise because I know that's just not within my personality. Being able to make small (or big) lifestyle changes, and especially if you would like to be successful at these changes requires realistic goal setting. Telling myself that I'm going to ask for help every time it's available is just not going to happen, I'll probably just fail myself. However, here are a few things that I have decided to do or at the very least keep in mind so that I am aware:

Value my ego. Everyone has an ego and whether or not we are inflating or deflating our egos has a lot to do with the choices we make. I could inflate my ego by making decisions that add value to it, or I could deflate my ego by cheapening the value - forgoing assistance just for the sake of proving to myself I can accomplish small day-to-day tasks. Telling myself: Sandy, no one is going to hand you a cookie because you figured out how to open the door while holding a drink and driving your chair. (Cookies are a good motivator!)
Determine my goal. I should think about whether or not the task I need help with is my end goal, or is the task that I need help with just a step along the way to reach my end goal? This difference means that I can remind myself what is important for me to actually accomplish.
Value my time. Similarly to determining my goal, this mean that I spend less time doing things that I don't need to be doing vs. utilizing that time to work on things that I will learn more from. This isn't easy though because as many of us may know, asking for help might - in the short run - seem like it takes more time than if we just did it ourselves!
Admit I am human. I might be a human with a mutation, but this doesn't make me any less human - it just makes me more aware of being human. And most of the time because I am busy accomplishing a thousand things, or caught up in the momentum of the event that I forget the baseline of where I am working from. It is human to ask for help, and being aware of the other humans who are around, will I think, expand my understanding of what it is I want to accomplish along this adventurous journey!

Those are just some guidelines that I hope will allow me to be more efficient and effective as a person who needs to make compromises. But I want to be an awesome person so my hope is that the guidelines will help me to pick winning compromises! What do you think? Any others that I should add? I'll keep you updated on my progress!

Top 5 Ridiculous Responses

2012-02-08T11:31:00.000-05:00

....I have in fact given. Because the advantage of being the odd one out is getting to appreciate the private jokes and chuckling to yourself. It's the small things. ;-)

Them: How did you break your legs?

Me: I fell off my broomstick right after banishing a group of gawking children to hell

Them: How do you sleep?

Me: Hanging upside down in my bat cave.
Da-na-na-na-na-na-BATMAN!

Them: Does it hurt when you break a bone?

Me: Does it hurt for you to use your brain?

Them: Can you go to the bathroom by yourself?

Me: No, I need you to wipe me and stand-by to ask my bladder if it's done yet.

Them: Did your mother leave you here all by yourself?!

Me: Yea, don't worry - most kidnappers are daunted by the sight of an 800lb
power wheelchair, never mind lifting it too.

Now, SHARE YOUR ridiculousness in the comments!

Feeling a Lil Bit Nekkid

2012-02-07T08:00:00.000-05:00

Back before my memory was fully functional I belonged to an Easter Seals swim group. A group of kids with varying disabilities, a parent, and sometimes their siblings would get together once a week to swim and do water-related activities. It was really during this time that my love for swimming and being around water began. The staff and volunteers at Easter Seals were equipped and trained to work with multiple disabilities, the point, from what I remember, was to emphasize the therapeutic benefits of being in a liberating and "weight-less" environment.
And while I don't remember the specifics of this swim group, I do remember that it was one of the few times (if not only times) where I was immersed in a 'level playing field' with other kids my age who were also disabled. Some may have had tubes coming out of their stomachs, some may have also had O.I., others may have had surgical scars down their backs or arms, there were arms and legs that flapped uncontrollably, limbs that curved in every which way, necks that struggled to hold up heads.. but somehow, in the water, none of that mattered.

I remember that I was excited to go to the swim group each week. I looked forward to changing into my bathing suit at the Marriott Hotel where it was held, I couldn't wait for my mom to blow-up my Little Mermaid themed swimmies for my arms. I absolutely loved feeling free alongside them, with the other kids who, like me, couldn't conceptualize what it was we were so thrilled by - but we just felt it and through the bubbles we just knew what a difference being together in the water made.

Years passed and I grew-up, funding was cut, I fell out of my high chair and wound up in a body cast for half a year - several events led up to my slow phasing out of the Easter Seals swim group. By the time I was in middle school my parents were unable to find an Easter Seals swim program for me, so enrolled my older brother and I into swimming lessons at the local YMCA.
My parents understood the risks they were taking. The class would be taught by a YMCA staff person who probably didn't have any of the same training as the Easter Seals swim program teachers did, my parents also understood that the kids in the class would be 'normal.' I'm sure that they told me all of this and in my 11 year-old way of understanding things, I probably just shrugged it off not understanding the implications of what any of that would mean. In my mind I thought I go to a school with all these regular kids so what's the big deal with a once a week swim class? I found out soon enough.

"Okay everyone we're going to start off in the shallow end of the pool..." The instructor said. And with one hand along the wall the entire class began strutting down to the other end of the pool. I sat there on the pool deck, uncertain of what to do, and feeling incredibly vulnerable in too many ways for me to count. The instructor looked at me and asked if he could pick me up and carry me down to the other end of the pool. I shrugged and nodded.
For the rest of the lesson I remember wishing that I had more clothes on than just my bathing suit, wishing that my mother had been allowed to stay, shying away in terror into the corner when we practiced our kicks. When the class was over we had 10 min to ourselves for what was called "Free Swim." Kids jumped out of the pool, grabbed at kick boards, noodles, diving rings, and squirt toys and plunged after them.

"What happened to your legs?"
"How come it looks like you have two knees on one leg?"
"Why is your chest bone sticking out like that?"
"Why did the teacher carry you?"
Before I knew what I had gotten myself into a small group of kids had surrounded me. I hadn't come to class in my wheelchair. Hadn't been allowed to explain anything as I usually did at the start of a school year. I was just a kid, naked in a bathing suit - and O.I.'s classic symptoms stuck out like sore thumbs.

The point of this story isn't to throw more distance between the 'disabled world' and the 'normal world.' In fact it's to do the exact opposite! Those years (yes, I continued those YMCA swimming classes..) that I spent in those classes allowed me to literally grow tougher skin. Albeit it may have been somewhat brutal and a load of reality for an 11 year-old to handle, but it's something my parents could never have taught me because they're my parents. It's not something any amount of teasing from my brothers could have taught me because they are my brothers. In school kids are not as nearly naked as they are in a swim class, and I was usually always around the protective wing of an aide. It took total strangers, peers, and a level playing field that was provided by the water in order for me to truly understand what it means when I said to them:

"My bones are fragile, I was born this way but I can do everything you guys do as long as it's in the water. I'll race you to the other end?"

When Everyone is Waiting for You to Fail

2012-02-06T08:00:00.000-05:00

The high school cafeteria swarmed with new and unfamiliar faces. Teachers milled about but only for the sake of being there because everyone knows that this is the place where every teenager is for him or herself. As a 9th grader I was a new student, but I was totally new - my family had just moved into town during the summer between 8th and 9th grade, I knew no one and more importantly no one really knew me.

On the first day of school my aide had already embarrassed me. While everyone was getting their lunch she had launched into her "this is where there's pizza and here's the salad bar.." I saw kids glance at me from the corner of their eyes what is wrong with that girl? She doesn't even recognize basic food? As if the wheelchair wasn't an already obvious sign, my aide's explanation of what was obvious further highlighted any invisible impairments I didn't actually have. So on this second day of school I told myself that yesterday's fiasco would be avoided at all and any costs. Today I was going to get my own lunch, to heck with her job description, my coolness factor was at stake!

She strutted in front of me but I swerved from behind her, grabbed the lunch tray and scooted into the line for pizza. It was the first time that I had held the lunch tray on my own, and in my rush to make a statement with my coolness factor and independence, I hadn't factored in how exactly I was going to hold a lunch tray.

For other kids trays dangled from their hands, others spun lunch trays on top of fingers, a group of kids tried balancing trays on their heads - there was no technique that they already had to figure out. They just did it. My dominant hand (lefty!) was already preoccupied with the wheelchair's joystick, my right hand was holding a binder that I hadn't put in my backpack from the class before. As someone who has shorter stature, my lap has only enough real-estate for a stuffed animal and a Harry Potter book; needless to say I fumbled a bit.

So maybe this wasn't such a great idea I began thinking to myself. Maybe the school was right, maybe I do need someone to get my lunch for me. But I looked around and saw the faces and other kids who I saw no difference between myself and them; I wanted no difference to exist, and at the time if it came down to slightly struggling with holding a lunch tray then so be it!

It was my turn at the pizza bar, (the seat of my chair didn't elevate at the time)... I looked up at the mountainous plexi-glass-like window that separated me from the lunch lady slapping on slices of pizza on passing trays. For a split second her line of sight continued looking glazed over and seemed frozen at the same height of sight forever. Quick thinking told me I had to get her attention. I clattered my lunch tray down onto the metal serving stand, the noise got her to look down and I could tell that she had thought some bratty kid has caused a mess again. I could tell from her face that she wasn't expecting me there, waiting patiently for a slice of pizza on my empty tray. She reached over the glass window and plopped a slice of pizza down onto my tray; at this point I had slid my binder behind me, I then gripped the edge of the lunch tray with my right hand and balanced the other end on my left forearm. When I exited the line my aide stood there looking at me, hands on her hips, astonished.

I got my milk, and had to adjust the weight of the tray in my hands - making sure to put the milk carton on one end and the pizza on the other to have the weight evenly spread. Despite my caution, the whole time I was paranoid that the lunch tray would somehow slip from my newly untrained grip; in my mind I saw pizza landing cheese side up on to the ground, lunch tray clattering, and milk splashing all over the place. In the faces of the kids around me, and the reaction of my aide told me that everyone else could see this image too; everyone seemed to be waiting for me to fail, waiting for me to admit defeat and that I needed an adult's help for forever and ever.

And up until that point it was true, I had needed an adult to help me with many things that other kids my age did by themselves at school. But it occurred to me that if you expect change, and no one is willing to take a risk on you, then you've got to take matters into your own hands - no one is going to just hand you some change of expectations that match everything you've ever dreamed of on a silver platter (never mind a high school lunch tray!)

My coolness factor, my bold statement of independence, and determination to get my own slice of pizza and milk is exactly that - they are all mine now because no one had any hand in doing it for me. At the time it may have just been high school lunch and pizza that I was after, but it was a step towards what I wanted, even if I hadn't fully realized what 'it' was myself yet.

That's all it takes, just one slice of pizza, one small action towards what you want. We can't expect anyone to take a risk on us if we won't take a risk on ourselves.

Weekly Wrap-Up

2012-02-03T12:59:00.002-05:00

Barrier Breaking Tip: It's hard to win them all. Take a step back and prioritize what it is you want vs what it is you need, then plot & scheme!

Monday: Just some observations as I do a routine thing
Tuesday: Thanks to all my readers who continue to give me so much support!
Wednesday: Kicking off February with some tips for young kids with O.I. to better understand fracture management
Thursday: We all do this because it's the easiest thing to do -- "but what if..?"
FractureFreeFriday: "How do you handle overbearing school nurses & administrators?"

But What If..?

2012-02-02T08:00:00.001-05:00

There are a slew of things that I worry about on a routine basis: will that spider drop on my head and lay eggs in my ears while I'm sleeping? Will I stay employed? Will my wheel get stuck in the gap between the train and the platform? Will I get stuck in the elevator? Will my wheelchair suddenly break down? Will I find another gray hair in the morning?

Here are some other "But what if's" that I have:
What if I...

Get into a car crash. Commercials that showcase a car's safety features with the billowing air bags that explode on impact into the face of a crash dummy freak me out. There should be no need for explanation as to why that is the case.
Am alone when I sustain a fracture. Seeing whether or not I can reach the highest cabinet in the kitchen by climbing on top of my wheelchair, and then swinging from the knobs on the cabinets is probably a bad idea.. but particularly if I am home alone. I am also not great about having my cellphone near by in case I need to reach 911.
Start fracturing a lot again. I have heard that my 20's will probably be my most stable period in terms of physical health (especially for someone with type III). The frequencies of fractures has dwindled and I am able to put all my energy into life goals without being tripped up by healing time or bones breaking. I dread the day when the frequency of my fractures increase once again; I am afraid I will not be able to have the same stamina and energy as I did when I was a child.

But as a friend once told me "you can't what if your life away.." It's up to us to turn our worries into sources of motivation for action. Whether small or large, there is always going to be a risk and a consequence to whatever we do -- and some of those consequences we might not even foresee. If we were able to tell the future then I'm pretty sure my parents wouldn't have let me off my bed for fear of the fractures I sustained, but then what would the results have been had they decided to do that?

I once heard someone say "the only things worth doing are the things we fear.." And I agree with that to some extent. Obviously if it risks our safety and life then these are not the decisions we should go through with; however, if it makes us feel a little uncomfortable it's not because we necessarily dislike the situation instead we are experiencing the physical act of learning. The wonderful thing about life perspective is that it is never set in stone, and we really don't need to consciously do much in order to continually expand that perspective - each time we are learning something it adds to that spectrum of perspective. Discomfort, uncertainty, and fears in these instances are then fleeting because the next day will provide a new set of uncertainties and "what if's"; the trick is to never forget what you've already accomplished and recycle that energy to continually push yourself further.
We can all be energizer bunnies, but whether or not we decide to flip the switch to "on" is all in your hands. You can start today.

Teaching Dr. Self

2012-02-01T07:01:00.000-05:00

Parents of kids with O.I. are often referring to "the scream." This is the noise that sends our parents scurrying to our side and then whipping out the bag of old splints and bandages that appears out of thin air. It is not the same cry you hear when a toddler is getting a booster shot, and it isn't the same heartbreaking wail when a child's hopes are crushed at the toy store. It is part shriek, part cry, part scream, and all of it is directed at a sliver of wispy gray-white that no one can see until hours later on the x-ray. And even then it is sometimes invisible.
There comes a time when the scream doesn't serve so much as an "alarm" for our caretakers because we realize for ourselves what has happened -- we begin to recognize that the pain is coming from a broken bone, just another fracture. And instead of "the scream" we are then able to say "I just broke a bone.."
So when is that moment? How can caretakers or parents help kids develop that recognition? How do kids with O.I. become better aware and more knowledgeable of where a fracture is? How do we know how 'badly' it is broken? Or even how many places the bone is broken in?
There are a few tips that can help make the experience a little less frightening and a little less uncertain ---

Structuring the Suddenness:
Warning: Just because you are raising a "Dr. Self" doesn't mean medical opinions should be ignored!

It is always most important to listen to the child! Or become acutely aware of where their hands are gripping, or which limb has become oddly limp and unused. Just because you may have heard a crack coming from there, doesn't mean that may be where the bone is broken!
Let the child hold the broken bone as much as possible - particularly during the transition before going to the doctor's. I know that from my own experience it is difficult for parents to not want to rush in and 'fix' everything themselves; however, knowing how the broken bone feels to us, where it is, how tightly to hold, what position to rest the broken arm in are all small details that begin to build our awareness of our bodies. The body is learning even when things may be breaking down.
Know which questions to ask. At the time of a fracture, especially for an O.I. fracture, "how did this happen?" Might be one of the first two questions that are on the tip of your tongue. But think about it!! The child has O.I.!! And most of the time, especially for young children, we aren't always aware of how the bone suddenly broke. From my experience, I used to become extremely frustrated with school nurses who would ask me "how did this happen? What happened?" before they would assess where the injury was. It doesn't help the O.I. child when you are trying to figure out the "how and why's" while they are in pain; in my experience in fact, it only made me feel worse. Instead figure out "where does it hurt?" "What hurts?" "How much does it hurt?" "Can you wiggle your fingers?" "Does your leg feel numb?" Thinking about fracture prevention is important, but not until after you have taken care of the incident at hand first!
Let the child be a part of the 'grown-up' discussion. This might be difficult because the fine line between protecting and shielding are so often blurred. However seeing the x-ray, listening to the doctor talk with my parents about healing time, and becoming 'naturalized' to the language and vocabulary all became useful tools to becoming self-aware of my body. Of course no parent wants their child to hear the doctor say "healing might take about 5 months.." but the reality of it is that we begin to connect the pain to healing-time that is required. It is a difficult connection to describe in words, but understanding that my arms heal faster than my legs or that my ribs take about 2-3 weeks to heal have helped me become better equipped at assessing my own physical abilities.
Routine. No one likes the idea of breaking bones becoming a routine. But because of the frequency of these incidents the truth is that there is some kind of routine to each of our own fracture management procedures. Whether the child fell off a trampoline, broke a clavicle, or sustained a bruise to the bone -- try to keep some semblance of order in the chaos. I know, I know many of you are thinking Sandy, you just wait until YOU have a kid with O.I and THEN you try doing this..but growing up I have appreciated the order in which my parents dealt with broken bones. It helps to know that small instances in life that can quickly be turned upside down are not reasons to feel despair. It helps to know that just because you broke a bone doing something your brother does all the time doesn't mean you were wrong to do it. And it helps to watch that no matter how badly things feel anything can be righted once again!

January Top Post!

2012-01-31T08:00:00.000-05:00

Dear Readers,
Aaaaand there goes another month!! Quite a bit happened in January. For starters I hope everyone rang in 2012 safely with great friends & family! The support that everyone continues to provide translates into energy for me to keep churning out posts, and sharing all the funny, sad, awkward, and confusing barriers in life. So THANK YOU THANK YOU THANK YOU for helping me grow as a person, as a writer, a thinker, and a barrier breaker!
Sharing posts with others who are going through similar experiences, and encouraging your family & friends to become fans of the facebook page are a lot more helpful to me than you might think!

Here is how:

This month's top post was something I initially didn't think was a "big deal." And this so often happens in my blogging experience! The post "I don't hate you, we're still friends" gets the crown for this month for being the most shared blog post in January. The readers chose, the machine did the number crunching, and I am just here to reveal: January's Top Post.

As always, never hesitate to email me at: oi.perfect@yahoo.com.

Bloggingly yours,
Sandy

Elevating Thoughts

2012-01-30T08:00:00.000-05:00

In the public sphere, rare are the moments when someone in a wheelchair is able to feel invisible or anonymous: for the most part and in most situations -- the four wheels I am cruising around on are difficult for others to not see. With that said, I'd like to invite you into a space that I hold almost-sacred in the world out there: The Elevator.

Ding! The neon glow to the arrow pointing up is lit. This little light, like a quarterback in a football game, begins to set the players into formation. People shuffle around in the lobby nudging closer to the elevator doors; I have already strategically positioned myself at the front of the line but not in front of the doors. Instead, I am angled off to the side and in such a way that makes my stance clear: this is now my elevator, and I intend on getting in it.

As the doors slide open I dart inside, quickly hit the button to my floor and then swivel around to the rear right corner. Other people begin to march inside and I sit there for a few seconds watching, and in my warped brain I pretend I am the royal queen grudgingly accepting the company of my subjects.

But Oh No! What is this?

Whose rear end is slowly creeping ever closer in.to.my.face?! And what about this other rear end with JUICY plastered across it that is about to back that thaaang up right into my wheelchair's joystick? I realize that as an adult I should be over the concept of cooties, but don't these people understand!?! While they don't need to touch the soles of their shoes -- my hand needs to always touch my joystick in order for me to get anywhere... in LIFE!

At this point I have sucked in my breath and am hoping with fervor that these anonymous rear ends will leave my metallic boxy kingdom before I get to my floor. The doors are now beginning to close and I, along with my subjects, are beginning to get used to each other's "unique" choices in perfume, cologne, and... just what the hell is that stench? Clearly someone failed to realize that flipping your two day old underwear inside out and then putting it back on does not do the trick. I flick my eyes up at the bodies standing directly in front of me, and with a quick glance at the back of their heads I have telepathically sent them a stern message: do not pass gas. Because if you do, I have no qualms about running you over -- and as you can see, there is no where for you to run inside this box.

The fluorescent light to the outside world is narrowing as the doors are drawing to a close. People are beginning to settle into their little orbs of separation, making sure that their own finite walls do not accidentally knock into those of their verycloseandtightknit neighbor's. Except, there is an interjection. The doors jerk open, the light tumbles back inside, thumbs stop mid-flick across phones, heads lift up to face the front. First we see a hand and then a foot steps in, then the rest of the person - shoulders apologetic, and face in a part frown part guilt, "Hey, thanks.." the anonymous person says.

Thanks?? What are you thanking us for? I am unwavering in my confidence that we unanimously silently agreed that none of us want you here, because you are only delaying us in our own urge to getwhereweneedtogo! Without waiting for our silent response this person has swiveled around, promptly ignored us and resumed their proper place in the formation; there is a shuffle from the rest of us to make room - the right butt cheek of JUICY is now officially brushing up against my hand. I swallow hard and close my eyes, for the love of god why can't the body emit farts of spring flowers or fresh baked cookies?

Finally. The doors are closed, and now the silence fills the box as we, complete and utter strangers, ascend together. And so the guessing game begins. Who is getting off on which floor? Why does that guy think that he can pick his nose just because he is standing in the back of the elevator? (The rear of the elevator is apparently like the rear of the school bus - SO MUCH delinquent behavior goes on back there..) And what about the other lady doing the pick-at-my-wedgie-dance? When the doors closed I guess we all signed a social contract that said: what happens in the elevator, stays in the elevator. Is the woman with her eyes closed while leaning against the left wall okay? Or is she going to pass out? I glance around, no one else seems to be concerned about her, but I am.