Showing posts with label fracture free Friday. Show all posts

This week has been busy! Let's see what we've got eh?

• Monday: We've all heard about times when handicap placards have been unlawfully used & I shared a time when I was allowing this to happen in my own family. 

• Tuesday: This was the first post of my "Going to School" series and it focuses on parents of K-5 children. 

• Wednesday: In the second post of the "Going to School" series I am addressing all the young students themselves! I wrote a silly poem that I hope helps parents and young children discuss some of the worries they have around the first day of school

• Thursday: Children's Hospital Boston is a place where I owe so much of my growth and development to! When I was asked to share my experiences of transitioning into my first college dorm with other patients of Children's I jumped at the opportunity! 

• Friday: I've been getting several questions about why I write and specifically why I started the blog. Check it out over at Unbreakable Journey for today's Fracture Free Friday post & as always, enjoy your Friday!

This week I talked to O.I., reminisced about middle school and tried to remember an operation through a hazy cherry-scented fog:

• Monday's post: My letter to O.I.  We had a sit down chat and it wasn't exactly over coffee and the words exchanged weren't exactly that pleasant either. I would probably choose an awkward family gathering over another meeting with O.I. if given the choice. 

• Tuesday: How-to-Push a wheelchair. I'm not a wheelbarrow!

• Wednesday: The Ground Beneath Her.. Wheels ? I'll admit that this post was a bit weird. I wrote about the ground and the various topography that you might come across in the city in a wheelchair.

• Thursday: My first rodding surgery was cherry flavored! What about yours? And I hope none of my middle school teachers are reading this blog... but I would like to see them TRY to give me a lunch detention now! 

• Fracture Free Friday: The transition to middle school I found those three years to be awkwardly fun (of course I say that now..) 

Hiya readers!

I've been waiting a few weeks now to announce this awesome partnership that has officially begun today :-D

When I first started my blog I went out looking for other OI sites and blogs and came across an incredible source of information at Unbreakable Journey managed by Amanda (@OIJourney). Amanda has been really supportive from the very beginning (we connected when my blog was only a week old!) and we have decided to join forces.
As usual my Fracture Free Friday posts will still occur, but now you can find them every Friday at Unbreakable Journey. I will be sure to post the link every week on my own blog and will always continue to collect questions from readers at oi.perfect@yahoo.com 

So thanks for continuing to read the entries, for letting me share my life with you, and for all those readers from Unbreakable Journey -- Welcome to Perfectly Imperfecta!

Have a safe & fracture free Friday,
Sandy

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   
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Fracture Free Friday Q: Osteogenesis Imperfecta is under the umbrella of "dwarfism". Do you consider yourself a Little Person and how do those with OI view themselves in the LP community? 


A: I thought this was an interesting question because I had never thought about it before, but before I begin my response I must note that I'll only be responding from my own perspective!
Although I do consider myself to be a little person, I consider myself having OI first and the short stature is a symptom of the brittle bones disease. I must admit that I'm not very knowledgeable of the LP community and have only really "begun" to get involved in the OI community (with the start of this blog). Even though being a little person affects my daily life more than having OI does in my mind I affiliate more with OI than dwarfism. It's weird because I probably struggle more with being much shorter than needing to be extremely careful (at this point in my life), when I was younger this was the opposite; it was easier being short as a child, but because I was still learning what my body could and could not do I had to be more cautious. 
As I was thinking up a response to this question over the past couple of days I tried to liken it to being hard-of-hearing. On forms that request listing my physical disabilities I rarely remember to put down the fact that I am hard-of-hearing. I think that similarly to being short statured, I view both as symptoms of the OI but not the main lens from which I am looking through most of the time. Maybe it's because so much of the focus in how I have managed my life has been centered around learning how to be cautious, and managing a fragile existence? Maybe it's because I associate most of my pains and hurt (the fractures) as the more 'disabled' aspects of myself? I'm not really sure, to be honest. 
I can understand that telling strangers off the street that you are a "little person" instead of going into the whole "osteogenesis imperfecta, a brittle bones condition.." shpiel, but I do think that if I had to go with a label I would prefer to tell people that I have brittle bones. I think it's something that better represents my physical limits and capabilities, and also lets others know that they need to be careful - which I think is the most important thing. 


So readers, I am curious to know! Do you consider yourself to be a Little Person? And how do you see yourself in the LP community? Leave your responses in the comments section please!

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   

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Fracture Free Friday Q: How do you handle kids when they stand directly in front of you or besides you and just stare? Do you ignore them or say something? What do you say if they ask, “Why are you in a wheelchair?” or “Why are you so little?”


A: The little tots and sometimes even babies will just pop out of nowhere! They waddle up to my wheelchair and with their drooling gurgling mouths will try to suck at the joystick, or roll my tires. Usually I look around for an adult who is chasing after them - arms out wide, feet spread out, and a totally horrified look on their face. 
"I'm so sorry about this... he's just curious."
"It's okay, don't worry about it" I smile down at the small human, uncertain if I need to explain my existence; then I realize that ten syllable diseases might be too much for a kid who doesn't know her elbow from her head yet. 


Kids can tell. They always can tell and they always announce it when they can! There are no boundaries with them and any 'oddity' or slightly different pattern from the norm will catch their attention like gnats to fly paper. Eyes widen, faces stricken with awe, and if you ever wanted to see what having something on the tip of your tongue but you can't say it looks like - just watch a kid looking at a small human cruising in a wheelchair for the first time. 
Do you explain to them that your bones are brittle? Will a simple "I have trouble walking" put a stop to the gawking? What about "I'm disabled" ? Or I have known some parents to explain to their child "she has a broken leg" (when actually I don't...) It can certainly be confusing because you don't know how much is too much and whether or not you are stepping over parenting boundaries - what if their parents want to teach them about disabilities or differences in a way other than how I am explaining it?
I have clearly over thought this situation too many times as I'm sure many of my readers have as well. When it gets down to the moment though it usually depends on how I'm feeling. Sometimes I quickly assess how old the child might be, what she or he may understand and also how open the adult they are with seems. Some of my "fall back" answers when I'm not sure what to say have been: "my bones haven't grown very well" or "I have trouble walking so the wheelchair helps me." 
These responses, I hope, are covering some basics that most children by the age of five have understood. In other words, at this age they (I am assuming) understand that their bodies should be growing bigger, and that they have all experienced a time when they have needed help from mom, dad, or a stroller. It's not to say that I am comparing the wheelchair to a stroller, but the assistive device has a similar function to my life as the stroller does to theirs. 
All of the above is if I am in a good mood. Sometimes though I just don't want to explain myself, or I get the sense that their parents may be embarrassed by their child's questioning and want to answer the inquiries themselves. In these instances I pretend to ignore but I'm actually listening. I smile at both the child and the adult, give a "hello" and wait to see if either the adult or child addresses me directly. Sometimes parents will say "well you can ask the lady herself" or they will kneel down with their kid and look at me as well and give an explanation: "she's sitting in a wheelchair because her legs are broken" or something similar. 
As an adult I think I have a better sense of what would be appropriate to say and what would not be. When this happened to me as a young child I would feel completely embarrassed and sometimes just seek out my parents or older brother and cower besides them. I remember a few times though, as a child, when I would simply say "my bones break easily and I can't walk well" - then quickly brush the gawking peer off. But I also remember times when, as a kid, other kids would simply just approach me with a shy "hi" - they knew something was different, but they also knew that I was still a child myself and were uncertain of how to behave. I remember those times were moments when I could feel myself gaining more confidence in who I am. 


Now that I think about it I realize that despite these instances happening frequently, I always do feel a little awkward. Maybe it's because I am just uncertain of how to behave around children who are younger than eight years old, but they do make me nervous! I think a part of me feels like I might be their first introduction to a 'wheelchair' or to the concept of a disability, and thus don't want to "mess it up." But another part of me also feels like maybe I'm not so sure of how to simplify osteogenesis imperfecta myself! The condition encompasses my entire life, how do I respond in a way that a young child will understand but also be as accurate in my description as possible? 


Readers: Let me know of some responses that you have given in these situations. Email me your responses and I will post them in a separate entry! oi.perfect@yahoo.com

This week's "Fracture Free Friday" post is going to be dedicated to all of our siblings, parents, grandparents and other family members who don't have O.I. It'll be for the times "those others" look at us perplexed, with great sadness, helplessness, frustration, worry, concern, joy, pride, relief, and awe. This post is meant to be a "thank you" of sorts for all of their unspoken efforts at trying - because trying goes beyond just caring and being 'there for us.' Trying is a voluntary reaction that comes from within, it is an honest effort that makes an attempt to close the gap that separates hundreds of broken bones and the mysteries of genetics.

On Friday my younger brother, Andrew, graduated from high school. He is seven years younger than me and the youngest in the family. Just as for any other high school senior moving on in that frighteningly busily empty space that is The Next Chapter of Life - he was excited, nervous, but most of all he was thankful. I could tell that Andrew was thankful for the presence of his family, his friends, teachers, members of the school district, and town. Andrew's gratitude and relief was in his smile and his text messages to us, but most memorably it was in the graduation speech he gave as this year's class speaker.

We'll always share in each other's joys & milestones

In his speech Andrew talked about the idea of "other people" and how that idea is a familiar concept to all of us. Whether we were once trying to be straight A students, a team player, or even just a great friend - there have been obstacles that stood in our way that made us believe that achieving our goals wasn't meant for us, that it was for "other people" to do only. But he also spoke about how privileged he and his graduating classmates were to define for themselves what "other people" means. It is through the risks that they take in TRYING new things, taking a stab at a new task, or getting out of their own comfort zones - and through the 4 years of high school he and his classmates were fortunate enough to have the opportunity to take these risks  and create their own identity of what "other people" means.

In my every day life I frequently refer to unaffected OI people as "the others" or "the normal ones." Even if I don't say it aloud or I am not consciously thinking so, in my head "other people" are usually the ones who are not disabled, who are taller than me, who are not as fragile, and have proportionally sized limbs. I have come to realize that this definition of "other people" is limiting, unfairly assuming, and in most cases flat out wrong. In other words, I have learned that "other people" are not just a compilation of all the things that I myself lack. It has occurred to me that just as I wouldn't want others to define accomplishments, potential, and ability for me - I shouldn't be doing that myself to others. Keeping an open mind is one piece of the puzzle, but even more so the ability to help others explore what part of you they consider belongs to "others" and vice versa is a practice I think we should all be doing more of. This last piece is what I believe will help everyone transgress more boundaries and ease all of our troubles together; we can feel less alone, feel more supported, and gain more collectively in these connections.

Andrew's speech pointed out this exact point to his classmates as being a "gift." And indeed it is a gift! It's the ability to see not just what differentiates each of us and brings us together that creates connections, but learning how to express and help others discover these aspects in one another as well. If I could in part one piece of advice to family members who are unaffected by OI, I would say that the most helpful thing may not be the most advanced medical breakthrough, the top ranked doctor & hospital, or the clearest x-ray picture. Just being able to try and understand, to breach the mysteries of medicine through empathy and listening to every tear and smile can prove to be the firmest support I could ever ask for.

Happy Fracture Free Friday!

"In it for the Parking" Gotta have a bit of humor!

If you've been following my posts I hope it's caught on that I've got somewhat of a 'style' to my writing. And also that there are a few times when you've been able to chuckle to yourself, or at least crack a smile. Writing about life with O.I. can be emotionally draining and challenging to put into such precise language a little known condition. My sense of humor whether in or out of the cast has helped me quite a bit in life; I've been known to be quite sarcastic, blunt, and maybe even a little daring with where I am willing to take things. For this Fracture Free Friday entry I thought I'd share a couple of quick stories of how humor has helped me get through my toughest "O.I. riddled days:"

Always something to laugh about.

Fracture Funnies:

• In pre-school I wound up in a body cast that went up to my chest, left a large hole for my stomach and covered my legs. The bottom half of the cast was in a spica style and for anyone, but particularly a 3 year-old the encasement was miserable. I was in this contraption for nearly 5-6 months and for Halloween, you're dang right I was the best mummy treatin' and trickin'! 
• During college I would frequently wake up only 15min before class and have to scramble to get to class a 1/2 mile away from the dorm. Usually I would bolt out of bed, make sure I had the right books and binders in my bag, pull things out of my closet to throw on and burn rubber going out the door. When I would get to class my friends would say "Sandy... you're not wearing any shoes." My response: "So? It's not like I walk anyway!" Boring lectures in the comfort of socks and slippers make it far more bearable!
• One night when out with friends for dinner the waiter mistook me to be a young child. He handed me the kids menu, and some silly coloring sheet with crayons. When he came back to take our orders I circled what I wanted on the menu and drew a middle finger along side it. :-P
• During my first year in college I went to class a bit early with a friend, before the professor had arrived. For whatever reason I felt like getting out of my wheelchair and into a 'regular' seat. My friend decided to get into my wheelchair, drive out of the classroom -- and when the professor finally arrived, drove my wheelchair back into the classroom as if everything was normal. Needless to say the professor was beyond shocked and confused, we just grinned back at him and prepared ourselves for the boredom to follow. 
• My friend invited me to talk about O.I. as a genetic disease with her middle school science class. I agreed and looked forward to re-visiting my 7th grade days. I gave my talk, and answered a whole slew of questions when I heard a few giggles in the back. The teacher asked what was so funny and the group of boys replied "umm.. nothing. Never mind." Being the darer that I am I goaded them, "no, try me. Tell me what's so funny. I've heard it all." That's when one of the boys asked, "Well.. we were wondering if... you had ever broken a bone from farting before.." I responded "no but do you want to come up here and we can try the experiment?" 

Happy Fracture Free Friday everyone!
This will be the first of many more 'Fracture Free Friday' posts. These entries will take the time to mention a few things/people that I am thankful for because I am fracture free this Friday. I also will use this post to share some flashbacks from my childhood, some will be fond memories and others will be not so fond memories. The point of these entries is to help us all take some time to reflect on goals and accomplishments we have achieved this week, and even in our lifetime!
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Lately it's been raining and feeling like the kind of weather that sneaks in between October and November. My entire body has been aching and as I'm wondering if this is what it's like to feel 100 years-old I'm thankful to not be traveling in this weather with a cast. There is something about sitting in a wet wheelchair that is already miserable. If you catch me in a downpour I will be racing to the nearest public bathroom not because I need to go really badly, but because I want to dry off and will sit underneath the automatic hand dryer machines for as long as necessary. When I was younger I used to wish that I could be like Inspector Gadget and say "go go gadget 'brella!" And out would pop an umbrella from my wheelchair .... someone out there, get on that! But traveling in rainy weather with a cast can be even more annoying. The hassle of plastic bags, or sometimes when you forget about the plastic bag the cast itself may get wet - then you're stuck itching like crazy, or you may end up covered in baby powder in the attempt to dry off. If it's an arm that's in a cast the trouble with raincoats and ponchos can be that the arm-hole may never be large enough or angled correctly to get your arm through. I always felt like a lopsided bird whenever this would happen, kind of awkwardly nudging my wheelchair along with one hand as I grab onto walls and rails to pull myself along.

Speaking of getting around, when I was younger I had one of three ways of getting around the house: 1. my manual wheelchair 2. the scoot-shuffle-crawl method 3. my tricycle. I loved my tricycle. It was the only pink colored thing I have ever loved and probably will ever love. I would race around the house going on epic adventures that could only be seen in my head. The trike had an electric button that when pressed would make the front piece light up and make this awesome sound that quickly died from over-use. Even when the lights and sound effects became muted forever I would still push the button and create my own sound effects. Around that time I was also watching Star Trek with my older brother; does anyone remember the phrase "beam me up Scotty" ?? I would be zooming back to my own version of the starship base - typically this would be when my mom started yelling at me about god only knows what.

I don't do this with strangers often so you should feel privileged to see a picture of me when I was much younger. But I hope the above blurb reminds us of the distance and adventures we have all traversed whether imaginary or real.