Showing posts with label OI adolescent. Show all posts

A couple weeks ago I had written a blog entry about the pressure I sometimes feel to explain O.I., or what is more often the case feeling like I need to provide an explanation for my existence. There have been countless incidents where the awkwardness of "feeling like I should" answer those questions of "why?" "what's wrong?" "what happened?" have made me spit out words I would rather swallow. Or they are incidents where I have wanted to reply with "why do you want to know?" but, for whatever reason, felt that I would be making a social faux paus by refusing to answer. And instead I make myself feel worse after all is said and done.

Of course the next follow-up post to that entry would logically be so how do you tell a person to kindly mind your own beeswax? (Okay so in actuality a parent of a young child with O.I. phrased the question much more eloquently than that in her comment to me... but the point is still the same!)

I don't always know how to say "no. I'd rather not talk about that right now.." or "I don't feel comfortable telling you about it.." And I think in part I struggle with refusing to answer probably because I am an adult who has too much awareness of 'what is expected of me' vs 'what I can do.'
But let's pretend for a moment that I really am fearless and uncaring about what would be socially acceptable. If I were approached by some random adult who wanted to know "so umm can I ask you a question? What's your deal? Why are you in a wheelchair?" Here are some options of how I would say "please piss off" in my ideal fantasy world:

1. Is there something specific you want to know? I'm in a wheelchair for the same reason you decide to put boots on when it's a blizzard out, or when you put sneakers on when you're about to go for a run. It helps me get around.

2. I don't really want to talk about it with you right now, or like...ever.

3. That question is going to cost you something, like a drink. 

4. I don't think your question is something I feel like I need to answer.

5. Tell me why you're curious. And no, your curiosity will not be answered by asking to test drive my wheelchair.

6. Well, what's your deal about my deal? 

7. What's my deal (or problem, or disease, or condition, or disability, or sickness)? It's just mine to deal with, and yours to stay out of.

8. I just am what I am. And what about you? 

I know, I know, many of those responses above are borderline snarky and even hostile. But that's because their question, in some instances, can make me feel vulnerable and pathetic. There are a lot of variables at play in each incident when we are confronted with "WHY?!" The age of the person asking the question, the situation, the environment, the mood we are in, the weather, whether we are late to go somewhere, etc etc. I think that maybe just as we might be getting in the way of ourselves explaining to others, we might also be getting in the way of ourselves being in the right. I keep telling myself that this is one of those things where the more I do it, the less awkward and weird it will feel to me. Because I cannot be wrong when it comes to explaining (at least not at my age, and with my knowledge), and that's just what I need to continually remind myself each time it happens.

This is a guest blog post from my friend K who talks about her ideas of being different and seeing different. She is much more gutsier than me when it comes to physical appearance, so I'm glad that I have someone a little more willing to let us in on her thoughts on such tricksy topics. 
--

*It's bad to make generalizations, I know. So maybe if you think my title for this post is inaccurate or just wrong, feel free to hit me over the head with your reasons in the comments!*

1. Don't judge by the picture.
Raise your hand if you've been told "well the x-ray doesn't show a break..." or something similar? Exactly. We know there's more than meets the eye whether in the diagnosis of a fracture, or in meeting someone else, or when we pick up a book. There's always something more and while we might not always be patient about it, we're willing to bet that there's something else waiting if we give it a chance.

2. Time is the surest medicine.
Sure drinking milk can't hurt (unless you really can't digest milk), loading up on calcium pills, and doing everything your physical therapist tells you will help.. but many things somehow right themselves on their own schedules and routines. My body healed when I was downing another glass of milk and while I was doing homework in bed; it was doing its magical thing while I was going about my day; it didn't really need my nagging for it to pick up its mess while I was cleaning my room. Funny isn't it? How the most reliable thing our body needs isn't really something anyone has anyone control over? Time.

3. Don't pat me on the head.
Because just don't. (Unless you are 80+ years old, somehow related to me, and don't speak English or any other language I also speak... maybe I will allow it. Maybe.) It's like this: Some people have ceremonies like a quinceañera, or maybe a bar- or bat-mitzvah, or others might be given car keys as some kind of ritual acknowledging they are young adults. Many people with O.I. go through a ritual where the moment it is like so not okay to be patted on the head is a coming-of-age too. Most of the time there is no party or big hoopla, or even presents! It's just a look, a tightening of the gut, an eery clench of the jaw, the horrified thought: what the hell was that? And that is just one of the ways we know the kid-stuff is like so, totally, absolutely, positively over. 

4. "Yeah, I get that a lot."
Maybe it's the gazillionth time we are asked that question but most of us figure out some type of 'fall-back' answer. The question could be: "why are you so short?" "Why are you in a wheelchair?" "What happened to your leg?" "Why is your head like that?" "Why do you sound so young?" But we all eventually figure something out, something to say - an answer we use and reuse. It's not because we are necessarily bored by the questions, but it's because we become so confident and proud of the way we live our lives that explaining that small part of it isn't really an issue.

5. I'm not stubborn, I'm just right.
Don't try to tell me that tractions are the way to go when I have a fracture. It might be for you, and that's all well and dandy for you, but not for me. Don't try to tell me that I should just get the anesthesia through an IV and not the mask, because that's just not how I roll. And definitely don't try to tell me that weather isn't a factor in my bone pain because I can be more accurate than the weatherman! We just grow up knowing things about ourselves that others just don't. And maybe it is a fear of the potential pain that might be involved, but by golly we are going to stick to our guns when we figure out the answer.

6. Little kids just 'get it.'
I have yet to have a young child come up to me and talk to me in that honey-gushing-squishy-wittle-crouch-down-to-me voice. Sure, maybe it's because many of them are around the same height I am. That's not the point. The point is, there hasn't been a kid who has been condescending to me in the way (well-educated) adults have. I might look small but there is something in their stares that has told me they get it. It's like oh, you're small too but you know things that I don't. It is a look that confirms my size has no bearing on whether or not I can say the alphabet forwards and backwards, or whether or not I can help them tie their shoes, or get them out of a stuck zipper. Sometimes I wish adults could grow down a bit, y'know?

7. Breaks don't brake us.
While I don't wish it on anyone, many of us will have those fractures that leave us horizontal for days. The kind of fractures that have our stomachs in knots from the pain medications. The kind of casts that leave us so stranded that we need assistance just rolling over. But what I do wish on everyone that such breaks don't put the brakes on our lives.

8. Staring at me is not staring in me.
There's the side glance, the not so subtle corner-eye-ball, and the deer-in-headlights gawk. They are all varying levels of awkward and depending on our mood that moment exhausting, or just totally whatever. No matter how hard the other person might be scrutinizing though, whether through some x-rays or just passing by us on the street they can't ever get inside of our heads. And maybe that's a good thing, for them!

9. Trying again has more to do with the trying.
My first fall off of my tricycle resulted in a broken arm. And I was indoors, racing around my house! Yes my parents bought me a new one, the kind with a seat that had a back to lean against, and handle bars with better grips to it. But still I was terrified of riding it, the memory of breaking my arm was still fresh and I was not convinced this bright new pink bike would prove fracture-less. The thing was that it wasn't. I did break my leg (or maybe it was my arm?) from riding it. That time I was outside! The thing is that yeah, we get it, there will always be other opportunities. But it's the trying that's tough, the trying that allows opportunities come again and again.

10. It is easier to be different than be uncomfortable.
I don't know what there is to say about this one because maybe it's this one that is newest for me. But I will grudgingly admit that all through high school I spent so much time and energy trying to be less uncomfortable with myself. Because the thing is, difference is something someone can accept but discomfort leaves a person in limbo - always working to resolve the problem. We can also look at it from the perspective of someone else who might be uncomfortable with our differences: they are the ones left with the confusion and questions as we just continue with our lives.

There is a saying about how the bond between parent and child is strong, unbreakable, the closest. While my parents have no idea this blog exists, and talking about "what it feels like to be the only one.." wasn't exactly dinner table conversation (or any kind of conversation ever) - I believe that bond is true for me. This reflects not just the wholly dynamic and complex relationship between my parents and I, but goes to show that the differences in my genes isn't enough to get in the way of anything.

This doesn't mean that there were not some rough moments from my perspective as the child of able-bodied parents. There were definitely incidents that I felt isolated, times that when I look back are cringe-worthy and likeohmygawd so awkward.

I remember days of trying to clack-clack around in my mom's high heels in my walker. The plastic of my leg braces were wedged into the very tops of those points, where my mom's toes would come together snugly my toes remained rigid. The sides of the brace's plastic foot piece jutted out against the sides of her shoes, it was like my feet were rectangular blocks. It wasn't just that when I wore them the back of her heels still had room to easily fit a beanie baby or two, or that I wobbled precariously to the point where I just slid along inch by inch. My mom didn't have the experience of trying to look lady-like while wearing braces. And no matter how many reassuring words she could offer just didn't fill in that gap - it wasn't something that I recognized at that point, but it is something that I realize now.

Then there were those times when I would be plopped into the carseat to go run an errand with them: the bank to deposit a check, to the grocery store to grab that forgotten item, to the library to drop off books for return - quick errands that lasted no more than ten minutes. Instead of taking me out of the carseat, getting the wheelchair out.. I would remain in the carseat. "Read your book, I'll be out very quickly." And I don't remember if it was ever told to me directly, or if I just mistakenly overheard one of my parents saying: "it's okay if we leave Sandy alone somewhere for a few minutes, no one is going to kidnap a child who uses a wheelchair.. too much trouble." I didn't ask why or how come. To me it all made sense, and there was definitely a part of me that was glad for this logic! How come someone would potentially kidnap my younger brother and not me? How come not everyone knows how to fold and unfold a wheelchair? How come I would be too much trouble for a kidnapper? None of these questions, in my mind, really needed to be asked. I just knew the answers from the way my parents acted.

It took multiple instances of when I would be sent to lunch detention, and when my middle school guidance counselor would call home to say something like: "Sandy keeps getting away from her aide..." It wasn't until I simply ignored my aide for a good two months that my parents realized that unlike my older brother I was not getting teased, and I didn't feel like a 'loser,' and I wasn't embarrassed because I was a dork or a "teacher's pet." My parents went through their own days of classroom teasing but they couldn't tell me to stand up to my bully, were unable to tell me "go talk to the teacher.." because they had never experienced the awkwardness involved between a thirteen year-old girl and an aide breathing down her neck. The larger issue here is my parents weren't naturally able to help me figure out how much help is too much, and how to ask adults I "depended" on for space and boundaries. It was decided through a series of IEP meetings and meetings about "responsibility" in my guidance counselor's office that sorted everything out.

There are lots of other times that I can recall as well. The thing is that even though my parents were not able to give me first-person insight on "what it's like..." that is often not what's necessarily important, or what I needed most in those instances. What I needed most (and have always needed) is to know that my parents were always there to guide me, to help, to support, to explore options, and to just try to understand.

I'd like to say that it's because I'm hard-of-hearing and 80% of the time I'm not wearing my hearing-aids, and that's why I'm awful at listening to my body... but it's not. Actually it has absolutely nothing to do with having a hearing-loss. Most of the time I just plain ol' ignore whatever my body is telling me. For this post I thought it'd be neat to write down some of the things my body has told me:

You need to crack your knuckles right now. Do you feel that crazy stressful ball of tension built-up? Yes, well, release it before your hands completely stiffen. 

You've been sitting too long in one position. Your femur feels like it's going to break doesn't it? Well that's because you've been sitting too long while you waste hours on twitter and facebook. So either you  adjust a little, or your femur will continue to pinch like it's on the verge of breaking.

Did you really have to fly over that pothole in your wheelchair like that? Really? Because now your tailbone is slowly turning bluish-purple like a bruise. Yeah you better be thankful that no one can see it, because it's not a pretty sight.

Oh, my, did you not know your back could sound like it's crunching down on raw carrots with the way you just cracked your back? Do you think maybe it's time twist your trunk from side to side? No - you don't think so? Okay well don't come crying to me like I didn't warn you! 

What's that? Your shoulder hurts? Well, Miss Smarty Pants, did you not think your shoulders wouldn't be strained when you climbed up the counter and hung from the cupboards? Oh - I'm so glad that those CoCo Puffs were worth it. 

Your rib hurts? Well next time when you sneeze try not sneezing all of your brains out! 

What's that you say? Only my body talks to me like that? No, no, no. You listen to your body the next time it talks, and you get back to me with what you hear!

The thing is I ignore those things. And off the top of my head there are several reasons why I ignore those things:
1. Not serious "enough." 
Having been through multiple osteotomies, endless muscle spasms post-op, and a rod sticking out of my skin -- the everyday chatter of my body just doesn't strike me as something I need to put the brakes on my life for. Does that make it right? No it doesn't. It just means that I (think) I know my body well enough that I have the ability to pick & choose.
2. I have things to do and places to be!
If I were to pause every time my body complained, I would really be slowing myself down. And for someone who always has her power wheelchair cranked to the fastest speed - that is not something I'm ready to adapt to. When I hear a weird sound, or my knee locks (yet again), I might stop and think about what it was. And quickly evaluate in my head: okay so that wasn't a fracture, moving right along now...
3. Because I just don't know what to do.
Okay so my back sometimes cracks in weird ways, and the way I crack my knuckles makes it really questionable as to whether or not my bones are (actually) brittle. But I do those things because they make my body feel better, I am honestly not sure how else to handle that tension or what my other options are for some of the gripes my body vocalizes.

I'm not telling you to totally ignore your body, or to totally succumb to its every beck and call either. (Because if I did that I would be floating on a waterbed, living in some tropical country, and living life as a Mermaid). What I am saying is that we need to each recognize that our bodies do react to the things we put it through with our everyday living. Get to know those reactions, get comfortable with recognizing what is serious and what's not, be okay with the fact that our bodies may not always talk back to us with a response we want to hear.

Recently my friend M asked me if I preferred to be smiled at, or to not be smiled at by passersby. He went on, jokingly: "when I pass someone in a wheelchair - do I smile with teeth? Without teeth? Do I nod a little? Do I say hi? What do you prefer people do?" As the guy whose idea it was for me to begin this blog, M is hardly ignorant to the fact that I cannot be the spokesperson for all people in wheelchairs. With that said, I also recognized that he was asking out of genuine awareness of his surroundings and of others.

My gut reaction was to laugh at him (actually I did laugh at him), but also to say "I prefer that people do to me whatever they would do to anyone else they passed by on the street." But I knew that this isn't the way the majority of our society works, no matter how much I would like to wish that it does. It just doesn't; and because of that I also knew this would not be a sufficient enough answer for him, or for me. The fact of the matter is that a person in a wheelchair typically draws attention, for one reason or another. Once that attention is drawn, by the unspoken actions, social etiquette, gestures, etc, well there is a lot that we can do with that attention. What we do with that attention can be quickly manipulated into something that can be taken as negative, or something that can be taken as positive. Here I will try to differentiate the two:

In my mind, whether wheelchair-user or not, smiling at someone you pass by is just something friendly people do. Despite living in the city all my life, I have been the recipient and giver of many smiles to folks I will only see for .0008 seconds. But what's beneath the smile? It also is an acknowledgement that you and I are in this same space for just a moment. I am acknowledging that the other person is someone to be treated like a human being, with respect and courtesy. I am also saying: I assume the best of you, and you should assume the best of me.

But again, the majority of our society doesn't function in the realm of Sandy's-fantasy-fairy-tale-land. I'm not sure that everyone who smiles at me is assuming the best of me, no matter how high of a pedestal I may have put them on in my head - for those brief .00009 seconds we saw each other.

When someone says "hi" to me I always say "hi" back. This isn't just because I was raised this way, it's because, I think, in some ways I am proving to that stranger that I will probably never see again - that I am not only a human being, but also capable of normal social interactions. Maybe this stranger wasn't sure I am able to communicate, maybe this person wants to be my next partner in crime, maybe this person is just saying "hi." And 96% of the time the latter is usually the case. The other 4% of the time people will force this opening wider and launch into it: "Can I ask you a question, I was just wondering..." (And that's the subject for another blog post).

If people don't say "hi" to me, or they don't smile at me, or even look in my direction -- I'm not about to go give them the hairy eyeball at the back of their heads. I will just assume that the individual is busy, or lost in thought, or in a hurry, or just isn't that kind of person. I am not offended and don't think any less of the individual, the person is just one of another hundred human bodies I will pass in my day. The other angle on this issue I brought up to M was that location matters. Where you are in the country, or in the world(!) makes a huge difference in terms of what is socially appropriate behavior when two strangers pass each other by. For instance: people are nicer in D.C. than they are in Boston or New York City. Getting a "hi how are you?" Is not uncommon in D.C. Getting a "hi how are you?" in Boston or NYC is almost borderline creepy.

Can we get back to Sandy's-fantasy-fairy-tale-land? Just because it doesn't exist right now doesn't mean that there's no hope of it ever coming into reality. So why not? Why not make eye contact with strangers? Why not just smile at people? Why not assume the best of one another?

It began something like this: My friend said "I invited a bunch of the other kids from class too! We're having pizza and we might also have a water gun fight, we really want you to come!" This was the age when talking on a cord-phone with a springy wire with your friends was the "in" thing to do. This was back in the day when "hanging-up the phone" required more than just pressing the "end" button.

We were old enough to be left alone to our own devices in the neighborhood, but still young enough to require parental play-date permission.

My permission was granted and my mother dropped me off at my friend's house later that afternoon. This was a friend's house I had already been to hundreds of times before. In other words, my parents felt comfortable leaving me on her living room floor and expected that I would be waiting in the same spot later on that night.
In a matter of seconds a group of my buddies circled around on the floor with me. Looking back at it now, I think their excitement was in part because another one of their trouble-making pals was involved, but also because I was not in my wheelchair. I was in a different state during playdates, one that may have appeared to look more accessible to my able-bodied friends. By this point in our friendship my friends knew that I crawled around, or used my walker that my dad had left on the front porch of her house.

"Some of the boys are upstairs playing video games. Do you want us to tell them to come down? Or do you want us to bring you up?" Growing-up with an older brother meant that I rarely got a turn on the nintendo, it didn't take me long to choose to latter option. My friend dashed around the house probably looking for her mom to bring me up the stairs. Instead,
"...this is my laundry hamper. It has freshly clean underwear in it, I checked. Can you climb in here and then we'll carry you up in it?" I probably nodded, probably also threw in something about how I always climbed into laundry hampers at home. And in I went, then up I went.

Hours after Sonic had raced around collecting coins, our stomachs gave a collective grumble. Back in the hamper I went, and down the stairs we trooped. I crawled into the kitchen, under the dining room table, and climbed up onto the chair - stuffing my face with cheese and pepperoni, swapping gossip and summer plans.
At some point someone got bored, and our 12 year-old selves began to scheme and then the conversation probably went something like this:
"Let's have a water gun fight!" 
"Do we have enough squirt guns for everyone?"
"I'll run home and get mine, and steal my brothers."
"Let's call up some more people and see if they can come over."
"We can all meet-up at the park, by the baseball field." 
"We'll start here, in the driveway. I'll go turn the hose on and fill-up some balloons."

The same friend who had rigged up the hamper idea, now turned to look at me:
"I think I have my old red wagon in the garage. I'll go look for it. But we can put you in that and then you can come with us to the park! We can even put the water balloons in with you." 
She threw a beach towel down on the bottom, I climbed into the red wagon and there was still enough space behind me to stack half a dozen water balloons. Someone had handed me a SuperSoaker and off we went, behind her house, through the wooded path, and towards the park - I bumped along and remember telling her that she was smart to have thought of the beach towel.

I don't remember much from my summer as a 12 year-old, but I remember that day. It was great. Everything about it was wonderful from the creepy daddy long legs that I killed in the wagon, to all those water balloons I got to hurl, to the boy who said "no, I don't shoot at girls", and especially the look on my mother's face when she came to pick me up.
My nike shorts, t-shirt, socks, and puma sneakers were drenched. But I sat on the same spot on the living room carpet, smiling up at her with my arms stuck out - sad to go home, and I knew in my head: this is one of those days that your parents won't ever find out about. This is one of those days that you can leave to their own worst nightmare. Today's the day when you figured things out and they don't need to know how it was done, they just need to know that I'm safe and happy. 

I am falling. I don't know from where I am falling, or why I am falling - but my entire body has gone clammy and rigid with the knowledge that gravity is going to smack me awake, before I actually break a bone.
Though there are worse ways to be jolted from your sleep, that is one of my personal annoyances. Dreams where I am falling. I then spend the next two or three minutes furiously yelling at my subconscious: how could you forget that I have brittle bones? What kind of sick joke is this? Get a grip on yourself and don't you dare dream it again! 

My friends are all heading towards the staircase, I hang back a few feet waiting for them to notice - already a big smirk on my face. I can't wait to make them feel like jerks. 
"Oh wait, Sandy can't go this way! Sorry Sandy!" 
"Yeah whatever. Some friends you guys are, I'll just go the long way by myself." 
If I call you a friend, it means that we are comfortable enough with each other that you are allowed to make fun of me - and I am allowed to ruthlessly make fun of you. Among my friends, forgetting that I am in a wheelchair is a joke that gets as much play as those well-timed "that's what she said.." lines.

I have never been a person that dog-ears pages in books to remember where I have left off; I just remember the page number. In my family I'm the one who remembers all the errands that each person has to do. When I was younger my parents would stick me into the carseat and tell me "remind me to go get the milk on the way home" or "don't let me forget to go to the bank.." The weirdest thing my memory can do is recall the due date of each library book sitting on my shelf. (But this doesn't explain for why I always had so many overdue library books as a kid - remembering something doesn't necessarily correlate with action).
It was and is easy for me to remember these things because they have meaning for me. They are often the relationship between point A and point B, they are the reason for why C leads to D, or when E then F must follow. I am not able to recall facts on demand, but I am able to build bridges between two facts or concepts - it's in the process of understanding the relationship between two things that I am able to come up with the rest of the picture. In school I was never a flashcard kid. Flashcards were about as effective for me as repeatedly banging my head on a brick wall, trying to find the way out.

This also means that most basic information completely slips my mind. The log-in information to my work computer. The numbers needed to access my voicemail. The fact that when my shoelaces are untied, I need to tie them before they get tangled in my front wheels. The socks on my floor should be folded or put in the hamper, not left there for 2 weeks. The weather says that it's raining, this means I should bring an umbrella. These are some of the things that the hinges of my brain just never seem to be able to close on. Oh, and of course -- I have a brittle bones condition. These things slip my mind faster than raindrops through a child's fingers.

Yep you read correctly, sometimes I forget about the O.I.

I forget that sometimes expecting myself to make it through a day in my wheelchair that begins at 6:30AM, and lasts until 10PM is unrealistic. It slips my mind that as my friends are ordering another round of drinks, I should probably sit the next one out. I don't always realize that driving up the grassy hill to chase after my brother means I cannot safely get backdown. I forget that when I get angry, punching a wall is not the safest catharsis. I don't always remember that when my hearing-aids sound their alarm, it means I should have packed spare batteries in the case. It slips my mind to check to see if a place is accessible before going out on dates. I forget to check to make sure that all the elevators on my subway route are working before heading out in a blizzard. I often underestimate how rugged my wheelchair is by going out in a blizzard. I don't always remember to tell the bus driver that my wheelchair needs to be tied down during rush hour commute. It doesn't usually occur to me that a day of bone pain means that I should go easy on myself the following day.  

I forget about all of that because I'm too busy remembering to live. Sometimes it's just not worth the weight on my shoulders to remember to build the bridge between myself and the O.I. Sometimes it's just not worth my time to continually traverse that bridge over and over again, in hopes that I won't slip-up and end up hurting myself as a result of forgetting.

I forget not because I'm being irresponsible, or reckless. I forget because I'm being cautious in my choices. I am choosing to forge ahead and take risks instead of willingly holding myself back. The fact of the matter is that when I need to trek across the bridge between myself and the O.I., I know how to. It's a journey and path that is well worn and travelled, but the point is that I get to choose when I cross that bridge and when I don't. I am free to forget, and it is one of the most liberating things about my life that I am thankful to get to do.

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!

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?" 

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.

Around this time of the year many high school seniors are trying to decide who they are, what they want, who they want to become, and where they will go. As if these questions were not already overwhelming for anyone to answer, navigating college selections can be a convoluted process. Whether you are deciding on your major, clubs, food, scholarships, or accessibility - the questions that you are weighing can probably be divided into those questions that impact you as a student, and those that affect you as a person.

When I was choosing colleges I remember feeling incredibly frustrated because the adults in my life seemed more concerned with The Person, than the student. In other words, I think my going away to college and experiencing independence for the first time terrified my parents. They were concerned with making sure that I stayed within the state, they wanted me no farther than an hour's drive away from my orthopedic doctor, they wanted to be sure that the school would be able to handle me if I fractured, they even wanted to know if they could have access into my dorm room! The barrage of questions and concerns drove me nuts.
At that point in my life my fractures had begun to dwindle, and I was firmly entrenched in a stubborn-adolescent-independent mindset. The "I know everything and your opinion doesn't matter" attitude was my response to every question asked of me. But of course I didn't know everything and I mistook my parents' concern for my well being to be a source of annoyance and overbearing.

With that said, my piece of advice for any seniors in high school applying to college is to listen to what those around you are saying. The more information you have the better informed your eventual decision will be, and finally, realize that this is not supposed to be an easy decision. It is supposed to be a hassle, frustrating, and at times may make you feel like you're hitting your head against the wall over and over! But once you've gotten this first step into independence out of the way, just think about how easy it will be to take the next step and all the other ones to follow!
The process of choosing a school is an investment in yourself in the present and in the future. It will come with its difficulties and uncertainties that might not all be figured out until you are actually on campus. I'd definitely encourage visiting campuses as much as possible and meeting with as many college staff or current students as possible; go straight to the source with your questions and trust that thousands of students before you have made the same trek and done it successfully - soon, you'll be among them.


Since each person's college search is unique to their needs and each school has different resources, it's difficult to list specific advice to help with the process. I'd be more than happy to try and help answer more specific questions via email: oi.perfect@yahoo.com

You can also check out this article that I wrote to learn more about my first foray in independence in college: A Protective Bubble of My Own