Showing posts with label OI adult. 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.

*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 lots of medical literature out there that talks about how there are types of O.I. that experience a decrease in fractures at different times. And then there is information about hearing-loss that becomes more evident for people with O.I. at different stages. There is, I'm sure, also stuff about what happens when people with O.I. get older... things that I have clearly not bothered my head with. Yet.

I have been living that difference for at least the past 7-8 years. I haven't had a major fracture in quite some time (something that meant being in a cast for more than a month), and every time I have an x-ray of my chest/spine things are always "stable."My pulmonary tests don't waver far from the year before. My audiology tests reveal the same array of X's and O's on the audiogram. I am at that point of my O.I. where things are stable, and thank goodness for that!

When my friends ask me about fractures it can be difficult to explain to them what it's like. Particularly friends I met post-high school... they did not grow-up along side me, during the years when every two or three months I was in a cast. It's almost, in a strange way, like my friends post-high school are getting to know a different Sandy! Someone who is more willing to take risks, to go out, to party, to climb stairs to apartments, to trek through a blizzard, to do everything they do... because I am "stable" now. It is almost like having a totally different condition in a shocking way! I have found that there are things I could not possibly have been able to do as a twelve year-old without breaking my femur, that as a mid-twenty something I no longer think twice about. My friends post-high school don't come to visit me on inpatient floors, we do not spend our times together playing with TheraPutty, or seeing how long the other can stay balanced on the exercise ball.

It is a bit out of my league to explain the science behind this but I can offer some other insights. First is the most obvious: I am older. The liability for me to fracture a bone might not have changed, and I might still be just as fragile... but I certainly know more about my world and my body! I no longer have the same curiosity as my toddler or middle school self about what I can and cannot do. The temptation to try jumping into the bouncy-castle isn't as appealing when I know what might result. Secondly is that I have a better sense of the limits of what my body can and cannot handle. Those hundreds of fractures weren't just for the sake of archiving myself in hospital records! But each one taught me something about how much is too much, what it feels like right before a bone is about to break. And when that moment so much as pokes a finger at me I am quick to drop everything, to cease and desist. Thirdly, I am able to plan. It doesn't matter how much a classroom teacher, aide, physical therapist, parents may think to plan in advance for an incident where I might get hurt. Their planning will always miss some detail that only I will see, simply because it's my body, and my perspective. Being able to tell my friends "fine I'll go to the party, but someone needs to remain sober to carry me back down the three flights of steep stairs.." Or "okay we can go to Hong Kong and Macau but let's avoid the cobble stone paths if possible."

Things are different now and this is one of those times when the difference has been awesome. It makes me want to do as much as possible, get as much done as I can, cross off as many 'bucket-list' things as I am able to.. because I don't know when the next time things will be different again.

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.

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?

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 goes without saying that my wheelchair is a mobility aide. If we don't want to be all hoity-toity sounding, it is at its most basic - a chair on four wheels that I use to get around in. But once we stick a person into that seat, and we bring that person out and about into society or the 'real world'...well... it becomes a lot more than just that. The wheelchair becomes a piece of equipment that has allowed me to cut-lines, sit in the front row, use the biggest bathroom stall, get VIP seating, board planes first, have reserved parking spaces, get free drinks, free rides, free..lots of other stuff etc. etc. 70% of the time I don't ever have to ask to get those 'perks,' they just come when I enter a given situation. The other 30% of the time? That's when I have to do a bit of decision-making. I thought I'd share three of my own considerations I think about before I decide to roll on ahead with that pass:

1. Could I be safer? 
Sure there are ADA requirements and all of that - but those don't always take into consideration the individual safety of each person with a disability, and his/her unique disability. What's safe for someone who is blind may not be safe for someone who has brittle bones! Take for instance I am at a club with my friends: it's dark, loud, there are lots of people and all kinds of movement -- chances that I will request a booth or table (away from the middle of the dance floor) where we can safely sit and gab are likely. Is it absolutely necessary? Not really, but I do prefer it so that I may safely enjoy the rest of the night.

2. Am I putting in excessive effort?
We - wheelchair users - already know all about adapting, accommodating, and finding alternatives. We know it like our lungs know how to inflate with air. I think that many who are not wheelchair users may assume that the initial effort we put in to adapt already seems like excessive effort on our part. But it's usually not; however, when we find ourselves pulling a neck muscle to see a concert, performing Cirque Du Soleil-esque acrobatics atop wheelchairs, or trekking up a side of a mountain riddled with jutting tree roots - it's safe to say that hurtling past those measures would be excessive effort. The point is that only you can possibly know how much is too much. And when we get to that point, maybe that's when we ask someone else if there's a more efficient and feasible alternative.

3. What would they think?
Ugh. I'm almost disappointed in myself for including this last question on this list, but the truth is the truth - and I have to own up to this one. I am trying to be better about this ...but when I do 'use the wheelchair card' I get incredibly self-conscious about what others around me are thinking. I hope that they are not thinking oh there she goes again, getting her way cuz she's disabled. There have been days when I decide no, I don't want to seem like I'm wussing out - I'll just suck it up and deal even though there could be an 'easier' way for me. And then other days I am able to talk down to it and think: judge me, I dare you to say something to my face - because at the end of this experience I will have left with awesomeness and you will have left with nothing but a mound of wrong assumptions. 

This last one is a decision that I find myself making the most when it comes to "the wheelchair card." But like all the other considerations above, these are considerations I practice weighing in my head everyday - hoping that some day I'll get a little better at reaching a solution each time.

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!

By nature I'm not a very confrontational person so I'll try to be as civil as possible. I should warn you that what follows may make you quite a bit uncomfortable -- I am not sorry for that.

You've got to look for the little uni-sex stick figure in the chair to find the golden entrance. Sometimes it's an even better adventure than playing a video game, other times it's like you're playing on the Nintendo Wii: Don't forget to dodge the construction site, avoid breathing in the cigarette smoke, and go backwards down the curb cut! 

I know all the trash they talk about you, and believe you me, I know FAR too well what you do -- but despite all of that I'm glad we're together. Our relationship has had its fair share of bumps and fractures (hah, see what I did there?) but I've come to appreciate your quirks and learned to manage your more annoying habits.

Let's think about the first time when I, through my own self-realization, truly appreciated you. I was very young at the time, and we were still getting to know each other so it was pretty rough going between you and me. But I was sitting on the medical table in the cast room at Children's Hospital, twiddling my thumbs while I waited for my doctor to saw off yet another cast... that you were responsible for. I had spent the past couple of months relying on my parents to carry me everywhere, had spent weeks getting sponge-bathed, and was starting to get sores from having to be on my back in one place for so long. Needless to say I was more than ready to be rid of your baggage.
As with many other times I have been in the cast room, this time I was not the only patient. There was a little boy seated, or should I say squirming and wailing, on the table next to me. His parents were trying to shush him, his face was a violently furious red, and he screamed for all he was worth - twisting his face away from his broken arm. I wanted to tell him that closing his eyes wasn't going to take the pain away. I wanted to tell him that no matter how much he screamed and thrashed, it wouldn't work either, in fact moving more would just make the pain bolder. I wanted to tell him that soon it'll be all over. I wanted to tell him about patience, about healing, about getting stronger, about how in the bigger scheme of things -- his broken arm was nothing. I was probably no older than 10 but I knew these things because you had taught me all about them. In fact, these were your gifts to me and at 10 I knew that these were the things that made me different from my friends.

About that, you taught me how being different is something you adapt to instead of fighting against. You know, there are often days and nights when I think to myself that if political leaders and iron-fist world rulers could understand the things you have taught me, perhaps there wouldn't be as much struggle, hardship, strife, or anger in the world. Maybe people would want to work harder to mend, to converge, to be patient, to be stronger together, to adapt. You've taught me how to survive by adapting. Whether that's by adapting to other people's expectations of me, to the tall shelf that I can't reach, to the bank teller who never seems me, or to my friend's house that I can't get into -- you've showed me how everything is possible.
I wanted to thank you for that possibility that you continually reveal. In times like these I see so many people who have lost sight of possibility, hope, and clarity for themselves. It is a frightening and incredibly sad sight, and although I have so many amazingly supportive people in my life who help make my own possibility happen -- I believe that it all begins with you. Sure, I have to fumble and wrangle your neck a few times before you'll show me the way but it is ALWAYS so worth it!

Sometimes though, I'm not sure if you realize your scarier influences on people. Sometimes you bring a lot of fear and unknown into people's lives and I resent you for that. Aren't there better ways to prove your point? Less dark? Less of a hassle? Ways that aren't as much of a struggle for folks? Do you have any idea the fear you put into a mother who has her O.I. baby taken away because she's being investigated for child abuse? Or what about the fear of a child who isn't sure he'll be safe at school that day? Or what about the unknown for the twenty-something who isn't sure she'll ever have a 'normal' independent life outside of her parents' home? Or what about the family who isn't sure their O.I. child will live past the next day? I have seen so many of these instances play out and what makes one situation find success is strength and determination. You drag us screaming and kicking to prove what we are made of. You are unrelenting in your instructions. You give us no option but to prove the best of ourselves, but in order to do that, I understand that you must first put us in the worst case scenario. I just wish you wouldn't do that... all the time. Like, sometimes, can't you just let ME handle the remote control to life? Why does it always have to be YOU who gets to choose which channel we watch?

We can't get rid of each other. This relationship is made up of a promise more sacred than that of a vow, it'll last longer than the rust of a wedding band, and no amount of money could pay divorce lawyers to end it. So I have resolved to make the most of this -- whatever this is, whatever you are, and whatever it is you do. But after all, making the most of things is the first lesson you taught me 20 years ago when we first met, right? And just look at where it has taken us now!

With love and admiration,
Sandy

I don't consider myself to be any different from my friends. I think like them, I feel as they do, I am able to have the same life style as they have etc. Except for one way I know that I am drastically different from them -- alcoholic intake.
I am not as tall as they are, do not weigh as much, do not have the same sized liver, and oh yeah.. I'm fragile. This makes my alcoholic intake and general drinking experience to be somewhat different than that of my friends. Ever since I started drinking ahem, legally at age 21, of course..I've been trying to put my finger on what alcohol does to my body. My first drink was something fruity and tasted more of cranberry juice than alcohol, it probably had some stereotypical girly name (but god no it was not pink!) But it was one of those sneaky drinks that doesn't taste like alcohol, so you keep drinking and drinking until

BAM! That would be the sound of my wheelchair into a wall.

I can't ever do shots. Believe me, I've done them before and in my mind it is like sticking a hot fire brand down my throat, whirling it around and then forcing it into my stomach. Within seconds my brain and body are in completely different universes and I am floating just inches above my wheelchair's joystick, trying desperately to steer correctly but always missing -- kind of like when you watch a 3D movie and when you reach out your fingers are just grasping at an illusion.
Wine? Wine tastes like an explosion of fart on my taste buds. I hate it. And will force myself to drink it only when I have to pretend to be "mature" and somewhat adult-like. Also, if there is cheese around - that makes wine drinking absolutely acceptable. But honestly most of the time I will opt for a flavorful beer (Blue Moon, anyone? Or perhaps an Allagash White? Or in the spirit of fall Sam Adam's Pumpkin Ale?) or some embarrassingly fruit-drenched cocktail.

All too often and quickly the alcohol will tend to go straight to my head. Which is confusing to me because at the very same time I will feel the emergency world-is-ending urge need to pee (and god help the person who is using the wheelchair-accessible stall in these instances!). It's like there is some vertical tube that runs from the top of my skull to the bottom of my bladder, and when alcohol hits my lips it forms an immediate funnel whose sole purpose it is to slosh the liquid around in that tunnel until 2AM or when my head crashes on to the pillow.

For someone who has a tendency to over think, over work, over analyze and be stressed out about everything simultaneously -- my friends often tell me that having a drink would do me a lot of good. "Sandy, live a little. Relax. Everything will be fine." And there have been more than a few occasions when I forget that I am not the same height, weight, or size of my able-bodied friends. Suddenly the world, the walls, the floor, the ceiling, the faces of my friends will all seem to be buzzing - everyone will seem overly enthused and giggly, but by the time I've made the 5th trip to the restroom that vertical tube in me will have cleared out, and I'll have remembered: I'm fragile and no matter how much delusional fun I'm having, no amount of swishing chemicals can ever change my genetic make-up.

This post is going to be general commentary & reflection on the blog and how it relates to jobs/volunteer positions I have pursued. The question here is: To put blog on resume? Or not to put blog on resume?


Now, prior to making this decision I weighed my pros and cons. I asked friends. Got advice from career counselors. Advice from current employers/colleagues.. the point is I asked around and did a good amount of research. Ultimately what I decided was that I would only put the blog on my resume IF & ONLY IF the job had something to do with: writing/social media/communications. Otherwise the blog would be off and I wouldn't even bring it up.

The reason for my hesitation is because of the nature of the blog and the content. As you know, much of the content is fairly autobiographical and even somewhat private. Make no mistake about this though! My ramblings, memory-spilling, reflections, antic-confessions are on purpose! I WANT it to be that way. One of the functions of this blog is to help others based on what I have been through and in order to do that I have to get into some stuff that ... maybe..... I don't necessarily want potential employers to know about me. At least not right away. Most of my readers have some idea as to what O.I. is about, and understand the context surrounding the blog. A stranger on the street? Maybe not so much.
Another reason for my hesitation is because I don't want employers to get the wrong idea. In other words, I have always prided myself on being able to get internships or jobs because of what I am able to bring to the table. Not because of some 'sob story.' Or because I am pulling 'the wheelchair card.' I am really, incredibly, extremely uncomfortable around those types of situations and they make my innards cringe... a lot. I'll come out and say it: I really don't like it when people do that. To be totally truthful, the first time a potential employer even knows I'm in a wheelchair is when I follow-up an interview request with: "is your office wheelchair accessible?" So far, 90% of the time this has always been "yes!"
So, by having the blog on my resume, and without having MET an employer first -- I run the risk of 1. revealing too much of myself 2. sending a certain 'message' 3. Not having control of the implications of this 'message.' I know, I know. You're thinking Sandy, you can't control what people think about everything. But I would be more comfortable being able to read the person's facial expression, being able to explain what the blog is about, or how it came to be. While much of this I try to explain on paper, it is still largely out of my hands and kind of .. flailing in the winds, uncertain of which direction it will fly. In other words having the blog out there is almost like having a NAKED SANDY out there.. minus all the boring credentials and prior-work experiences & references.

But in the past couple of months I have taken a risk. And... ::drum roll please:: Gotten POSITIVE responses! The positions I was applying to were all writing/blogging/social media related, so there was that requirement out of the way. One of the positions was at an organization that helps people with disabilities: live, learn, work, and play. (::ahem:: MAJOR hint right there..). However, when I interviewed with that organization I was pleasantly surprised when the interviewer told me that he had NOT gone to my blog yet because he wanted to meet me in person first. I immediately said "thanks" and was relieved that I had the chance to "prove myself" before he judged me from my blog.

So anyway, for all of you who manage blogs yourselves or are thinking about it -- do you have any comments/advice/experience you'd like to share on the matter of blogs 'n' jobs? I'd be interested to hear! OR if you are an employer, what is your perspective?

Posts from this week can be found below --

Most of my friends now live in apartments in the city. This is a pretty boring observation given that many of us are now in our mid-20's and we're "at that age" where apartment living is an assumed norm. But I should add that most of my friends also do not use wheelchairs so apartments have a tendency to be less than wheelchair-friendly. Recently I was invited to two Halloween parties, both of which take place in living arrangements that are up at least a few flights of stairs and as one of my friend's put it "it's not the most Sandy-friendly set-up.." 

*The name of the door-to-door van service has been changed for legal reasons.

1. It's an Automatic Door. By Definition You Don't Need to Hold it Open For Me. 

"I want to go on that ride!" I pointed at a large pirate ship that was swinging in mid-air.

They'll tell you that the great adventure you just began with me took a turn towards the uncertain. They'll tell you raising me is going to be filled with insurmountable challenges and numerous struggles. They'll warn you about the medical bills and costs I'll require. They'll try to explain all the surgeries or therapy I'll need in the coming months and years. They may tell you to not plan too far into my future. They'll tell you that they're so sorry and ask if there's anything they can do for you, or me. They'll tell you that I will consume your life. They'll harp on about the sacrifices you'll have to make (as if they had a clue). They may even take me away from you for awhile. They'll smile in that way that belies their relief that I am not their child.


You'll take it one day at a time with me. You'll feel sad when you watch the other parents with their gurgling and healthy babies. You may feel angry and frustrated because you're always grasping for that "what else can I do..." Your blood may boil when they tell you you're wrong but you just know you're right. You may ask yourself why you continue to do this. You'll doubt yourself more than a few times, more than a hundred times. You'll soon find yourself unwilling to give-up; and you won't know why, or maybe you know exactly why but it's difficult to put all of the emotions and beliefs into words. You might even get fed up with me on more than a few occasions. You may feel guilty for all the reasons 'why' and 'how.'


I'll change your life's priorities. I'll show you what you are capable of before I figure out what I am capable of. I'll invent new dreams for you. I'll teach you how to be patient and push your sense of trust. I'll reconstruct your idea of 'family.' I'll exercise your strength just when you thought you're exhausted. I'll hold you to your stamina and make sure you never waver. I'll push your determination to the point of unrelenting. I'll show you what it means to go to "infinity and beyond!" I'll guide you to be my ears and eyes until I can do it on my own. I'll prove to you why expectations should never be set in stone. I'll make sure you're paying attention to the smallest of things. I'll instill your intuition with an iron-fist confidence. I'll challenge your sense of courage and may change your sense of faith.