Showing posts with label letters to the past. Show all posts

Dear Wheelchair,

By | Published Monday, February 13, 2012


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

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

My upper body strength has increased exponentially over the years thanks to you. Though I don't have a career in weight lifting or body building, the pay-off has been huge! Up until a few months ago, the last time I broke my arm was sometime in middle school - more than 10 years ago!! At the start of each school year I loved racing around the newly cleaned gymnasium, popping wheelies and doing donuts as I whipped around the pretend ice rink in my head. I'm so glad that you have been able to share that joy with my peers who aren't in wheelchairs, a part of me almost wanted them to be jealous of what we could do and they could not.
On the flip side you are usually the closest thing to me when it's my turn to feel jealous and sit on the sidelines, watching everyone else. Your lap becomes the place where I am able to grow silently sullen, your sense of tough love is apparent as you remain rigid while I slump a little in the seat. You're the space that allows me to feel pitiful without judgment or condescension. But when the moment is over you remind me that it's time to move; you remind me that I have to literally roll myself along because I have a choice, at the end of the day, will I choose to push myself along or will I allow myself to sit there along the sidelines? I'm thankful that whichever choice I make you've literally got my back. 

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

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


Sincerely yours,
Sandy 

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Dear High School Self,

By | Published Thursday, January 26, 2012

We both know that you're only pretending not to listen right now, so let me just state my two cents and then you can go back to writing poetry while you listen to Linkin Park at full blast.


The insanity that is going through your head is an illusion that you have to muddle through. One second you're clinging to some self-righteous This is Who I Am manifesto that you've cobbled together after reading an epic passage in The Perks of Being a Wallflower, and the next second you're wallowing in self-pity and wondering why no one has asked you to prom yet. After three hours of lying on your bed staring at the ceiling, you get up to look in the mirror and you'll proceed to freak out about the five zits that are beginning to form a constellation across your forehead. And then you'll think to yourself ugh as if being in a wheelchair isn't enough, I have to deal with this b.s.?! 
Yes you do. And here's a newsflash: you always will. There will always be something you have to deal with, but unlike many of your friends you have some perspective to work with. Perspective that you'll have to set aside your incessant sarcasm, cynicism, and disdain in order to see. It's okay, you can set those things aside in private when no one else is looking. This won't be easy, the hardest person to be completely naked and honest with is going to be yourself. But when you get to that point you'll discover that you aren't just some punk who also happens to write well. Don't look at me expectantly like I'm going to tell you who you will be in a few years; for christ's sake kid, I'm still trying to figure that out myself! 
(Do take what all of those English teachers have been telling you to heart -- because they are on to something. And stick to your guns when your mother is screaming in confusion as to why you can't be more like your older brother. Wait out the noise because soon you'll be okay with the fact that your parents won't ever 'get' you; there will be bigger issues in equality for you to focus your energy and time on..)

In a few years you'll realize that you're not as blithely tough and invincible as those smart-aleck comments coming out of your mouth want you to believe. Actually, you should try spending 1 day each month without the sarcastic comments and just say what it is you really mean to say. It's probably not as dumb, stupid, pathetic, or weak as you think it may sound. Witty sarcasm may get you a few adoring chuckles from your teachers, and it may put you in a "cool" light among your friends -- but the moment will fade quickly. It's easier to garner respect from people when you're not joking around 200% of the time, they might take you a little more seriously and listen to what you have to say. 

Your friends are just as uncertain about themselves as you are. And the people who aren't your friends? They are tripping over the same self-doubt and lack of confidence that you carry around too. But your friends may not be used to being constantly judged or feeling incapable in the eyes of their peers. You? You grew up with it. Being in a wheelchair and constantly breaking bones like it's your hobby does something to a person. You won't figure out exactly what it does at this point, but at least take the time to accept that it sets you a part from your friends in ways that will take you a lifetime to understand. You will work this into your personality. You've incorporated it into your stubbornly adolescent attitude. You've faced it every time you roll out the door with your family. You already have the survival skills necessary to navigate high school hierarchy and the social quirks of teenage-world. But unless you're willing to acknowledge what you have in front of you, you might just be making things more difficult for yourself. As you're trying to figure out who you are don't deny what is already there, and definitely don't hide it beneath some riffraff. 

It's high school: this is just another hurdle in a lifetime of many other feats in store for you. You won't always be here and most importantly you won't always be this way or feel like this. Have fun, be there for your friends, act like you're hearing your parents, continue to do the things you love, dare to try things you don't think you will love, listen to yourself, and ... stop racing around the hallways so much -- four years goes by quickly enough! 




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Dear O.I.,

By | Published Wednesday, November 16, 2011

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




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Top Post of the Month!

By | Published Sunday, July 3, 2011

Yesterday I re-posted my most visited post of All Time! Today I am re-posting my most popular post of the month so far. Don't worry, after this weekend there is going to be a ton of fresh & new material to feast your heart, mind, and souls on =)  ... & thanks for being patient as I catch-up on my jet lag from my trip to Asia. 
--

Dear Mom & Dad,

I decided to write a letter to my parents. These are the words I would tell them if I could have as they watched me over 20  years ago in the hospital incubator, unable to hold me and terrified of what will happen.


It's not your fault. It's not my fault. It's not anyone's fault, but can I just say this anyway? I'm sorry. I'm sorry for all those hours of worrying, crying, and having the weight of your tiniest child's unknown future constantly on your shoulders. I cannot begin to imagine what it will be like to try and provide everything for me and then watch me get hurt unexpectedly, inevitably, and knowingly - hundreds of times over. What will it be like to take eight steps forwards with me and then watch me get forced into taking ten steps back? I think about that a lot as an adult and sometimes I wonder if I could ever be as strong as you guys and raise another human being in that similar process.

But what I am about to say is probably the most important thing for you to know: You will get through it and I will be fine. 

My body has many deformities and limitations but I wish I could have been aware when you guys realized my brain is "normal." Was it like someone had thrown you a life jacket in the middle of a raging and darkening storm? Such hope! You will raise me to appreciate hope and to pummel every crumb of its existence out of every situation. Thank you for that. And thank you for pushing me in school, not just pushing me but demanding that nothing other than perfect would be acceptable. This would drive me insane in high school, I will push you away, be confused, even be angry with you but I will come to understand why you did it. Education and the advancement in medicine are the two sustaining aspects of my life that I know I will always be able to count on. Those gifts are priceless and literally life changing.

I will learn how to play the piano, walk, jump, swim, read, write, dream, and have empathy. Then I will learn how to help others, listen, respect, admire, envy, comprehend, and problem solve. I'll always learn how to communicate, work together, be patient, love, build stamina, rehab, heal, think critically, and be innovative. These and so much more will be the bones of my life, the skeletal system to my future - the scaffolding that is more iron tight, forever unbreakable and the stuff that my faulty collagen will never be able to affect. Thank you for all of that.

Me, being observant and critically watchful as usual.
The sometimes clumsy dance you would do between caring for me and giving attention to my "normal" brothers is how I understand what it is to be human. No one is perfect and we can only try with our best and most genuine intentions at heart. Don't ever think that I don't know you are trying your damnedest to help each of us discover what we are capable of, pushing us - sometimes to the point of failure - but then always forcing us on-wards. There was always such little time to feel sorry, to take pity, or to stop and dwell in our faults.

Today I am not so great at accepting my limitations and realizing when I need help, but I am learning slowly. I don't regret the decisions you have made for me, medically related or otherwise - I trust that you know what's best, and at times now I will hear your voice in my head when I need to make a decision on my own. I am fortunate and forever thankful to be able to embody all of the successes you have armed me with, able to keep in mind the lessons from failures, and now I do not shy away from taking a stab and discovering more of the potential that you first instilled in me so many days and tireless nights ago.

With love & utmost appreciation,
Sandy

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Dear Mom & Dad,

By | Published Thursday, June 16, 2011

I decided to write a letter to my parents. These are the words I would tell them if I could have as they watched me over 20  years ago in the hospital incubator, unable to hold me and terrified of what will happen.

It's not your fault. It's not my fault. It's not anyone's fault, but can I just say this anyway? I'm sorry. I'm sorry for all those hours of worrying, crying, and having the weight of your tiniest child's unknown future constantly on your shoulders. I cannot begin to imagine what it will be like to try and provide everything for me and then watch me get hurt unexpectedly, inevitably, and knowingly - hundreds of times over. What will it be like to take eight steps forwards with me and then watch me get forced into taking ten steps back? I think about that a lot as an adult and sometimes I wonder if I could ever be as strong as you guys and raise another human being in that similar process.

But what I am about to say is probably the most important thing for you to know: You will get through it and I will be fine. 


My body has many deformities and limitations but I wish I could have been aware when you guys realized my brain is "normal." Was it like someone had thrown you a life jacket in the middle of a raging and darkening storm? Such hope! You will raise me to appreciate hope and to pummel every crumb of its existence out of every situation. Thank you for that. And thank you for pushing me in school, not just pushing me but demanding that nothing other than perfect would be acceptable. This would drive me insane in high school, I will push you away, be confused, even be angry with you but I will come to understand why you did it. Education and the advancement in medicine are the two sustaining aspects of my life that I know I will always be able to count on. Those gifts are priceless and literally life changing.

I will learn how to play the piano, walk, swim, jump, read, write, dream, and have empathy. Then I will learn how to help others, listen, respect, admire, envy, comprehend, and problem solve. I'll always learn how to communicate, work together, be patient, love, build stamina, rehab, heal, think critically, and be innovative. These and so much more will be the bones of my life, the skeletal system to my future - the scaffolding that is more iron tight, forever unbreakable and the stuff that my faulty collagen will never be able to affect. Thank you for all of that.

Me, being observant and critically watchful as usual.
The sometimes clumsy dance you would do between caring for me and giving attention to my "normal" brothers is how I understand what it is to be human. No one is perfect and we can only try with our best and most genuine intentions at heart. Don't ever think that I don't know you are trying your damnedest to help each of us discover what we are capable of, pushing us - sometimes to the point of failure - but then always forcing us on-wards. There was always such little time to feel sorry, to take pity, or to stop and dwell in our faults.

Today I am not so great at accepting my limitations and realizing when I need help, but I am learning slowly. I don't regret the decisions you have made for me, medically related or otherwise - I trust that you know what's best, and at times now I will hear your voice in my head when I need to make a decision on my own. I am fortunate and forever thankful to be able to embody all of the successes you have armed me with, able to keep in mind the lessons from failures, and now I do not shy away from taking a stab and discovering more of the potential that you first instilled in me so many days and tireless nights ago.

With love & utmost appreciation,
Sandy

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