Showing posts with label A different perspective. Show all posts

A Teen's Perspective: Hey, count me in!

By | Published Tuesday, August 28, 2012

One of the highlights of my summer has been working with some incredible guest teen writers! This series began with a post from H who you can read about here. H is the older sibling of a 4 year-old sister with O.I.; she shares some valuable insight with families who have children with O.I. and their siblings without O.I. Thanks H for sharing your experience and perspective on this issue! 

 There are so many tips I could give to parents of children with OI and non- OI children. Some of the tips I give will pertain to families, but some may not pertain to some families at all. So I ask that those who read this will keep that in mind.

 1. Sharing is caring. The first and most important piece of advice I would give to a parent would be to keep your non-OI children informed of what is going on with your OI child at all times. Even if your other child is 5 years old and doesn’t quite understand what is going on, they still care and it will make them feel more involved. They will ALWAYS be concerned about what is going on with their brother or sister. And it lets them know you are still thinking about them through all the stress, when you take the time to share information with them. It may help that child understand why your OI child requires so much attention, and they may even be more willing to help if they know what’s going on with their sibling.
2. Families help each other. The second major piece of advice I would give to a parent is- even if your child is younger- let them help with splinting or giving medicine, or whatever it is that needs to be done (unless there really is nothing at all that they can do). It makes your other children feel important and a part of their sibling’s life (of getting better!). If they don’t know how to do whatever it is, teach them. It gives them an opportunity to be included. They may not complain as much about attention if they are included in what is going on with their sibling. It will also be a good bonding opportunity for you and your child if you teach them these things. 
3. Inclusion makes the world go 'round. The last big thing I would say to a parent is to get your OI child involved with sports. Maybe not a club, but go to the local park a couple times a month and play baseball or something (make adjustments or accommodations as needed). If you’re playing baseball, play with a tennis ball or a whiffle ball instead of a hard- ball. If you decide to play soccer or tennis maybe use a foam ball. Or have your OI child be a referee. There are always ways to amend the game so everyone can be involved. It will keep everyone’s life running as smoothly as possible. Everyone can be included, active and it’s good family time! It will also teach your other children to be a little more flexible and to adapt to situations creatively.

Some other miscellaneous advice: make sure your non-OI child understands why your OI child needs the special attention; especially if they are young. Keep reminding your young child because it may be hard for them to understand. Don’t compare your other children’s hardships to those of your OI child either. It makes your other children feel as though you care about your OI child more than them. And it’s just not a good idea to compare children in general. I promise I am not trying to tell anyone what to do! Like I said, none of this may apply to some families, or these may be things you already keep in mind. They are just things I have learned in the four years I have been a sibling to an OI child and 13 years of being the oldest of 3 other children. I love my family very much and I know that every family is different, and no family is perfect. Every family is special and I respect that.

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From Their Perspective

By | Published Tuesday, August 14, 2012

"You know, when we were heading out of the stadium people kept looking at me sweetly. It took me a few minutes to figure it out but I get it now. I wanted to punch them in the face." My friend and I were riding the bus back to campus, we had gone to see a Red Sox game at dear ol' Fenway Park. I looked up at him and could only shrug. He didn't have to say more to explain himself, and I didn't have to ask to know just what he meant.
Though my chair was lowered to the ground and he easily towered over me, I too had seen the glances. The look that said oh you're doing a kind thing by taking her out to have fun. It's besides the fact that the game day tickets had been mine. It's besides the fact that I was the one who showed him how to navigate public transportation to the game. It's besides the fact that I was not his helpless younger sister, or some child - but his equal, his friend, a partner in crime. It has everything to do with the fact that those glances decided I was not his equal.

"It's okay just ignore them." My younger brother mouthed to me in the water. I sat nervously on the deck of the swimming pool at the YMCA; it was 20-min of "Free Swim" and kids from all of the swimming classes were throwing themselves in. But first they wanted to satiate their staring appetites on the surgical scars on my legs, and the way the rest of my body bowed in places like the crests of ocean waves.
My younger brother, being shy, was waiting for me to get into the pool so we could play together. He was waiting for his older sister - the one he felt most comfortable around, to goof around with him, to have someone to beat in a race to the other end. It's besides the fact that none of the other kids paid him any attention. It's besides the fact that my younger brother is seven years younger. It has everything to do with the fact that everyone was missing the bit of courage that my kid-brother was displaying, the impatient encouragement he was giving me for my own good.

"Can we have a booth or a table please? It'd be better for my friend.." The rest of her words were drowned out by the DJ giving a shout-out, and the crowd responding with screams that were swallowed by quick flashes of night-club lighting. The hostess peered over her ledger and looked at me, shocked and confused. We stood there looking blankly at her when she fumbled to say something about how tables were closed to patrons when the main dining hours were over.
I began to fidget and gave an upwards swing of my chin towards the exit door. I was trying to say that maybe we should just leave and go somewhere else, but still my friends stood there. After a few minutes my friend finally leaned over the ledger and gestured with her arms towards the side of the night-club, in her mind it was clear that a table and a few chairs could fit perfectly. It's besides the fact that the staff looked shocked and confused when I entered. It's besides the fact that the hostess launched into some defensive explanation. It has everything to do with the fact that one night of letting loose, broadened the idea of expectations and acceptance in someone else's mind.

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A Teen's Perspective: Sniffing Out My Superpower

By | Published Tuesday, August 7, 2012

The fourth post in this series comes from KG. An aspiring author, current high school student, older sister to an 8 yr old brother, and not to mention a web series actor -- KG has a wealth of stories to share. Of all the roles that KG plays in her life, she says that her most important one in her life is that of a friend to her friends & family; she is always at the ready to return what others have done for her in the name of friendship. On her down time KG enjoys singin' along to the tunes of Taylor Swift, and writing in her own blog here!

Ever since I was younger I've always wished that I was special. I know that many parents will argue that all kids are special in their own way (and I agree with that 100%), but I wanted to be REALLY special, to be unique in a way that had nothing to do with my OI. Basically, I wished that my petite body was a disguise for something big and important.

It took jumping out of my comfort zone to realize how special I already was, and still am.

In January, my dad came upon an article in the newspaper about a new, local web series called "Ghost Sniffers." The article stated that the show starred a nine-year-old ghost hunter named Faith Forge, played by FD. Both in real life and on the show, Faith has Type 1 diabetes. Her real-life twelve-year-old brother M has Aspergers and plays twin brothers Maxo and Maximilian. The article also reported that they were holding open auditions at the local library. Quickly, I jumped onto my laptop and went to the official "Ghost Sniffers" website, www.ghostsniffers.com/. I watched the two episodes that were available online at the time and I fell in love with the show. It occurred to me that if both of the main characters had disabilities, then it might not matter that I use a wheelchair and have O.I; I wondered if maybe they'd be accepting of who I am. I realized then that the only one holding me back was... me. 

Determined to give it my best shot, I memorized the lines of the two roles that I wanted to audition for and I went to the library, my stomach fluttering as if filled with a thousand angry moths searching for an escape. When I drove up in my wheelchair, JD (the writer, director and cinematographer of the show) and her family made me feel like I belonged there just as much as anybody else. After asking for some basic information JD said, "Now, I'd like you to please come behind the blue curtain over there and show me what you can do." There, I took a deep breath and began reciting my lines. Upon finishing, I was proud of my performance. JD seemed pleased too, but I couldn't be sure. 

Then I got asked the big question, "Why do you want to be on 'Ghost Sniffers'?" At first my mind went completely blank. Why am I here again? I asked myself in a panic. I hadn't really done any acting before, so why was I auditioning for an acting role?
"Well, I really like the show--" I began to say, scrambling frantically for an answer. Then I found it: "I want to do something where my disability won't stand in my way," I replied.

Anxiously, I waited up until midnight to hear back about my audition. At a quarter until four, I was roused from my sleep by a very small noise: my phone made a little "ding," indicating I'd received an email. Sleep clouded my vision and I blinked several times to clear it. Clumsily, I fumbled with my phone and began reading the email.

It said I hadn't gotten either part.

JD felt I wasn't quite the right person to play the characters I had auditioned for. She said it wasn't because I lacked talent, but because the roles I had auditioned for just weren't quite right for me. 

So... she decided to write an entirely new role for me to play instead.

"Ghost Sniffers" explores the question, "What if every kid with a disability also had a superpower?" Basically, what if the genetic switch that activates disabilities also triggers super abilities to compensate? It's said that when one door closes, another door opens, after all.
After reading the email all the way through, I rushed down the hall as fast as I could to wake my parents. Yes, it was then four in the morning, but if I didn't tell someone, I was going to burst with excitement.

I've come to realize that I have my own super abilities, not just on the set, but off set, too. The experience of jumping out of my comfort zone to audition for the show has taught me a lot about myself. As it turns out, my fragile body really is a disguise for something special. In fact, it's a disguise so deceiving that even I fell for it. My brittle bones disguise the bright light within me. And now that I've realized that, I can finally let the light shine through. 

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A Teen's Perspective: On Staring

By | Published Thursday, July 26, 2012

The third post in this series comes from LB. LB is a 17 year-old rising senior in high school, and is looking forward to heading off to college! Although in the real-world she has aspirations of majoring in psychology, I found out that given the choice - LB would rather be a witch in the Harry Potter universe. Her favorite spell? The lasso of fire Dumbledore released when fending off the Inferi. Witches and wizards beware, LB's magical prowess might catch you off guard if she catches you staring...! Check out her her own blog right here. 

STEP ONE: Determine the age of the starer
  • If the person is a young child, perhaps younger than 8 or 9, smile and wave. Maybe say hi. They probably won’t wave back to you, but will instead continue to stare in fascination.
  • If the person is older than the ages stated above, smile politely and if there is a smile in response, look away. If the person averts their gaze, ignore them. And if they keep staring? Do something ridiculous to make them feel embarrassed
The above steps were written partially tongue-in-cheek, but the thing is, staring happens a LOT with someone like me. I get it, I do. People are curious and I definitely do not look like the average person. It does bother me sometimes though.

One story in particular sticks out in my mind: My stepmom, stepaunt, and I all went to one of my high school’s football games because my cousin’s school marching band was performing in the halftime show. The stands were barely accessible, but that’s a story for another time. So we’re leaving at the end of the game, and my stepmom tells me there was a girl staring at me during the game. “How old was she?” I asked. My stepmom says that the girl looked about my age (I was 14 at the time). I was angry for a bit, then I was just sad. Shouldn’t teenagers have a basic sense of manners? Why did she feel the need to stare?

Over time I’ve taken to ignoring the older starers and helping educate the little ones. I always find it amusing when a kid touches some part of my chair and the parent FLIPS. If I don’t want your kid to touch it, I can tell them.

How do you deal with staring?

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A Teen's Perspective: We're Pretty Badass

By | Published Friday, July 20, 2012

The second post in this series comes from SD who shares her thoughts on how she finds her self confidence. SD is a 16 year old who plays the ukulele, will be the President of the student body at her high school next year, and her favorite lyric comes from Stornoway "on my way out for the very last time / on my doorstep straight into the sunshine / walking west and following the coastline looking for a sea change." 


I like to pretend my disability does not have an effect. I like to pretend that a handicap is like a hair color- an insignificant physical aspect, a small portion of who I am. And in a lot of ways, that’s true. In almost every way, my condition does not matter. It should not matter. I tell people it has no actual significance, that it should not determine anything in my life. This attitude has helped me become the social, successful student I am today. It’s shown people that I do not let the obvious get in my way. Because really, things like hair color and handicap do not matter in the big picture. What matters is who you are on the inside.
Unfortunately, I’ve found having a disability sours our sense of worth and stains our confidence. At least for me. Because in the back of my mind, there is this ugly little voice that says “You’re different.” It’s hard to forget when you’re unable to dance at school dances, run at the park with your friends, and ride easily in your boyfriend’s car. So I dance in my chair. I make my friends give me piggy back rides. I ask my boyfriend take my chair apart so it fits into his Prelude.  But even as you counteract all the obstacles OI throws in your face, it still is serving as a reminder of why you must overcome these issues in the first place.
I’ve done some thinking and have determined that it is time for OI teenagers to take control and create confidence for themselves! Here are five examples of what we can do to feel beautiful with our disability and confident in ourselves.

1. Don't wait for a Hello!
Sometimes our disability seems to act like an invisibility cloak, like people don’t want to talk to us. I’ve also noticed that at parties or in groups, people will converse over our heads, not bothering to tilt their heads and lok us in the eye. That’s okay. We do not have control of how people treat us. However, we do have control of our own actions. Be assertive! Say hello first! Don’t wait for people to include you. Include yourself while helping them realize that you are worth being included. 

2. Look amazing! (Hint: you already do)
It may seem a little hypocritical to say that the outside doesn’t matter and then encourage you to look your best. But your appearance matters in how it makes you feel. If you feel beautiful, then there is a higher chance you will act in beauty and compassion towards others. Enhance your already amazing features, dress in styles that flatter and compliment your body, and express yourself through your own unique style. Whatever you do to help you in your confidence, do it only for yourself. Do not try to please anyone else with your appearance.

3. Do what you love.
A great way to boost self esteem is to become involved in activities you love. Be involved with clubs and groups, with people who share your enthusiasm. If you are active in what you love, you will truer to yourself and meet amazing people who support you. Take no notice of what people say you “should” be involved in, or what social code dictates you be confined to. Stay true to what you love.

4. Forget the others.
People love to have opinions. All people. I, for one, have about a million opinions on things. It’s just what we do. We judge and we objectify and we determine and we interpret what the world means to our minds.  You see, people forming opinions is commonplace and should not affect you. Whatever they think about you is inconsequential to how you feel about yourself. Forget those who put you down. Surround yourself with positive people who have confidence and help you to feel stronger in yourself.

5. Laugh!
This may sound simple and that's because it is. If you laugh and smile you're bound to feel better, no matter how badly your day is going. Laugh at simple things and smile at the beauty of the world.

I just watched Seeking a Friend for the End of the World. (If you haven’t seen it yet, you should. Two words: Steve. Carrell).  It reinforced the idea that I had been mulling over for a while now- that time is fleeting and it’s a waste to worry. It’s a waste to hate yourself. It’s wasteful to be critical, to put yourself down. Life is so beautiful you guys! I don’t know about you, but I am so psyched to be here at all. Yes, I am disabled. But if I let it deter me from being the person I want to be, then I’ve let OI win. We’re pretty badass, if you ask me. You shouldn’t let that get to your head though, because everyone has difficulties. That’s the thing- we aren’t the only ones that are hurting; everyone does. And everyone struggles with learning to love themselves.  Once the world’s teenagers realize that our individual selves are bigger than our problems, confidence will surely follow. 

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A Teen's Perspective: My Witty Younger Sister

By | Published Thursday, June 28, 2012

This summer I have several teen writers who will be sharing their perspective on living with O.I. The first post in this series comes from older sister H who has a younger sister with O.I. H is a busy high school student who will be going on a mission trip to Jamaica later this summer! 

The first thing that should be made clear, is that what my four year old sister, E, has does not affect her cognitive ability what so ever. Not in the slightest bit, no matter if anyone tells you any different. She is an amazing, happy, smart, little girl. She has an amazing imagination and everyone who meets her loves her.  She is my inspiration in staying strong. She can show the world that no matter what you can be strong. 
                That doesn’t really change the way strangers view her though. When we are walking in public and she is in a wheelchair with a broken arm and 2 broken legs (or whatever happens to be the break that month), many will make very mean assumptions or try to pretend they don’t notice. We do though. There is that off occasion when someone will be gutsy enough to come up to one of us and ask about her. We don’t always go into detail about her “special bones”, but when someone asks, we will tell them. I am usually pretty clear and straight to the point, but I also make it very clear that it does not affect her cognitive ability; in fact she is smarter than most four-year-olds I know. It is very common to find someone who will automatically assume that it affects her brain, it’s a very common misconception, and that’s okay. I don’t mind explaining E’s bones to people. It can sometimes be slightly awkward, but E can usually lighten up the mood with one of her many witty comments. 
                Like I mentioned before, I don’t mind explaining the way E’s bones are to people, but when people ask about how we found out, that’s when the waterworks start going. My mom is a very strong woman, and she didn’t want us to be too affected by what was going on. She wanted us to keep living our lives normally, so when it was all happening, I really didn’t have any idea. Now that I am older though, and I have heard more about it, I know what went down. My mom had taken E into the doctor because she was hurting, so they took an x-ray of her bones and found that she was broken in multiple places. As safety precautions, they took her into their custody and asked my mom a multitude of questions. And to make a very long, dragging story short, the CPS (Child Protective Services) got involved, we (the children) were questioned, different family members had to stay with us at all times, and finally, after a long number of months, they closed the case and we were told E has a very “interesting” form of OI. Telling people this story can sometimes get me going. What my parents went through was very unfair, but they were very strong and they kept us safe too.
                My family and I don’t focus on those things though. My parents work hard on giving E the most normal life she can possibly have. There have, of course, been some bumps in the road along the way, but for the most part things at home have been good.We have just learned to live around her “special bones.” Some people feel bad for us, but there truly is no need for it. E, and the rest of us are as happy as can be.


Are you a teen who loves writing & has an opinion on living with O.I.? Be a guest writer this summer! Email me at oi.perfect@yahoo.com (or send a facebook message to facebook.com/oi.perfect) to find out more =) 

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A Different Perspective: On Love

By | Published Thursday, May 24, 2012

Today's post comes from my friend K who has O.I. type III and is generally known as a fellow rabble rousing 20something. She shares some thoughts with us on the subject of love, dating, and all that jazz... 

Dating, relationships, sex, disability: circle the word that does not belong. This is a trick question, put down your pencils.

Not all, but many, secretly or not so secretly hold the assumption that being disabled means you are never going to be able to, or have the opportunity to be in a relationship. Some who hold this assumption are our able-bodied peers who I must say are stereotyping; this is an unavoidable difficulty that we as members of the disability community face everyday. On the other hand, an equally disillusioned group that is by far more depressing to learn is in existence...is the portion of the disabled community that believes in this myth themselves.

I must admit that I am no expert on this topic but it is one I feel very strongly about. I believe that everyone deserves to  feel what it is like to care for someone, and to be cared for in the way that only lovers can. This is why through my experiences as a member of the community and my observations in regards to this topic - I want to attempt to give some advice to those who are hesitant about diving into the dating scene.

1. Define yourself in YOUR own terms.
We can't just jump right up to the bar and start making idle chitchat with the first potential mate we see (although with enough long island iced teas - Sandy has been known to do this), we need to first lay some groundwork. A lot of people with disabilities lack a very important thing when it comes to sparking romance, and that is confidence. In order to build such confidence you need to really know and be able to project a strong sense of self. This includes a core set of values, beliefs, and ideas about yourself and others that you truly believe in - that will ultimately help you to pick a potential interest from the crowd. Getting a better understanding of ourselves may not always reveal the ideal partner in our minds, but it will give us more self-confidence and self-respect as we navigate confusing relationships. Honestly, it may even help to get out a pencil and paper and start mapping out your SELF.
Another area of your self that is important to make note of is your sexual health. While many readers may already dread going to the doctor and asking yet a thousand other questions - it is to be expected. The more questions we ask (to the right people), the more comfortable we can be as sexual individuals. Whether it's a pediatric healthcare provider, or one specializing in adolescent medicine, or an adult primary care provider - all medical professionals are knowledgeable in these areas and can help maintain our own sexual health as well as those of our partner(s). 

2. Be yourSELF! 
Once you have outlined who you are, you need to own it. This should not be too difficult if in fact you have been true to yourself, and have really faced yourself as an individual. Truthfully, at least in my case, I have always had a ghost of an idea of who I really wanted to be and show to the world - but it was the fear of others' judgment that kept it at bay. This may be the hardest part of the process, but it is also crucial and without showing your true self, I would fear that you will never be completely satisfied in any of your future relationships, friends, family, or otherwise.

3. Expectations: Have none.
To this day I still surprise myself on a regular basis with who I am attracted to, who is attracted to me and the way things just work out sometimes. I would say that it is healthy to have an idea or strong inclination towards a certain type of person; in fact it's impossible not to but frankly if you are really in the market for a good experience, you should keep an open mind (and eyes!) to a host of different opportunities.

4.  Instant Satisfaction  
There is a large possibility that once you learn to navigate this new, confusing, often steamy world you are going to be tempted by situations that might initially seem satisfying - but are actually red flags in the face of future emotions. For example, hooking up. If hooking up becomes a habit, in the way where there are no other commitments being made outside of the physical - we may run the risk of getting someone's feelings crushed. However it is also just as likely that hooking up can remain purely physical with no emotions, this is why some have given it the phrase "hooking up" vs. "love making." Unfortunately, disabled and able-bodied people alike, are going to go through phases where they undoubtedly make decisions they readily know will end in heartbreak. Many times there is no logical or 'feel good' reason behind this behavior, it is just something they need to do to say they have done it. Deciding when or if we should participate in these situations is up to each individual; it's one of those finicky "you'll know when you'll know" moments.

5. Don't settle!
This is my final piece of advice, I would like to stress that it is also the one piece of advice I BEG readers to follow. It also happens to be the most controversial piece of advice I have. If you now find yourself in a relationship that you are in primarily because you think you can do no better, please think again. It is likely that you have not yet taken the journey of finding yourself (which admittedly, I am still on and I think is an ongoing process). In the best case this could be a journey that both of you can go on and will eventually make you a stronger couple. In the worst case scenario, you will find that you are actually not compatible with your partner at all and will need to end it - and start the journey fresh, now a wiser person.

This is in no way a guarantee that you will find someone, nor is it a step-by-step process but rather guidelines to be kept in mind at your own pace. With billions of people in the world, there is love out there for you in all shapes, abilities, and sizes. 

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A Different Perspective: Breaking Barriers Thru Generations

By | Published Wednesday, March 7, 2012


I 'met' R through twitter and was intrigued by his story of adapting to O.I. in a totally unconventional manner! The most interesting part of R's story is how he approaches his own son's medical care based on his own experiences. 


I'm stubborn.  All my life, I have refused to let OI Type I beat me.  I have Type I OI, as do my four siblings, their kids, and their grandchildren.  It all started with my mom. 18 people in all, with three more in the womb that haven't been tested yet.
I played sports, I've trained in martial arts for 30 years, and I've done some pretty insane things that make my doctors want to slap the stupid out of me as they're casting my latest fracture.  My mom was always the worrier.  My dad made a career out of the Marine Corps and while he would worry as well, there's part of me that deep down thinks he's proud I did what I could to adapt, improvise, and overcome.  If you count fingers, toes, and ribs, I've had over 30 broken bones in my life.  I've had my right ankle, my right hand, and my nose reconstructed.  Considering everything I've done to myself, this number is shockingly low.  What's even more shocking is I have to give credit to my martial arts training.  Sure, most of those finger, toe, and rib fractures were because of it, but it taught me how to fall.  As we can all attest to, falling is one of the scariest things those of us with OI can do.  One doctor speculated that I probably have had a lot more hairline fractures but the pain tolerance I've built up has "hidden" them from me.  It's quite possible.

I never fully understood what I was putting my parents through until I had a child of my own.  When my son was four months old, he ended up in the hospital with four broken bones: right tibia, left femur, and two ribs on the left side.  Rather than do any kind of surgery they put him into a wheaton-pavlik harness while he healed. Shortly before his second birthday, he broke his left femur again when he slipped and fell on the kitchen tile.  That time, they opted to put a removable rod into his leg to help set it right.  The day after he got the rod removed, he slipped and fell again and broke his right tibia for the second time.  He's five and a half now and hasn't had any more fractures since.   Despite the four leg fractures, he's growing pretty tall for a kid his age.
I’ve been putting some serious thoughts into whether or not I train my son and at what age I start him at.  As a parent, I’m worried sick that he’ll get hurt and then I’ll feel horrible for being responsible for it.  As someone that’s been teaching people for years, I’m pretty sure that I can create a program suited for him.  I started training when I was six and he turns six in September.  In the coming months, I plan on talking with his doctor about it.  Maybe there’s some exam schedule we can run along with it. There's part of me that worries that it'll just lead to more leg fractures in the future, but all I can do is provide the understanding and support for what he's going through.

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A Different Perspective #3

By | Published Wednesday, December 21, 2011


"A Different Perspective" will feature posts from those who are close to me. I thought this would be a great way to let readers 'meet' people who make me who I am today! This post is written by a close friend and a stupendous guy I am lucky to call a friend! S is currently serving in AmeriCorps in Minnesota. 


I met Sandy in the fall of 2008, senior year of college. Up until that point she was mostly just that Asian girl in the wheelchair rolling around campus who shared a lot of the same friends as me. Similarly, she has told me she saw me as “that pale white guy” walking around campus during this time. Even then, I was learning lessons from Sandy. And in the 3 years I’ve been able to call her my friend, I’ve learned many more. 
Attending a small college, it was impossible not to notice her on campus. She was a curiosity for many people. We also shared our campus with a small program within the college for high-functioning mentally challenged students who often had conditions affecting the way they looked. Unfortunately, Sandy was often mistaken for a student in this program, and was sometimes approached differently than she should have been during her time at school. I also have to admit, the first time I saw her, I wondered the same thing myself. The truth is, I had never seen anyone that looked like her, and had never been acquainted with anyone with different physical attributes and in a wheelchair who didn’t have some kind of mental impairment. I asked someone about her, most likely in my brash insensitive way, probably something like “who’s that wheelchair girl I always see, anyway?” Eventually I learned "that wheelchair girl” was actually much more than that. She was someone who no one really had any business making any assumptions of and defining by her physical appearance.
When I started hanging out with Sandy three years later, I was thrown into her world a bit. Going places with her, she’s often a center of attention amongst strangers. And really, you can’t blame human beings for having their curiosity be piqued by something they are unfamiliar with. That is far from exception. What is exceptional, however, is the ease in which Sandy deals with this attention. The ability to blend in at will is something that someone like me can take advantage of in life. But it is not something people small in stature and/or in a wheelchair have the luxury of knowing. Instead, they are forced to understand what comes with appearing different when otherwise, as a human being, they really aren’t different. And the grace in which Sandy handles these situations is amazing for me to see.


 By seeing Sandy handle the challenges that come with her disability, she has helped me in handling my own medical issues. Throughout my life before meeting her, I was the one amongst my friends with the most significant medical history and challenges stemming from them. I can’t help but be comforted by watching Sandy’s indefatigable patience in handling not just challenges of being in a wheelchair and appearing different than the majority, but also the enormous amounts of frustration that comes with knowing at any moment she could break several bones in her body (from an accident that would leave the rest of us with little more than a cut needing a band-aid). It really helps me to put the frustration of having a seizure every once in awhile into perspective. I would say to anyone who has faced difficulties from medical conditions, (and even though it’s something I’ve learned from Sandy, it absolutely still applies to her): It could be worse... and even if it was worse, it doesn’t mean you need to let it get to you. It doesn’t mean you need to let it define you.
And she doesn’t. She’s long since being “wheelchair girl” (and I hope I’m past being “that pale guy”...). Osteogenesis Imperfecta is far from the first thing I think of when I think of Sandy. To me, Sandy is much more likely to be associated with memories of weekend adventures in college, her sharp sense of humor, exploring public libraries, and devouring whoopie pies.  As someone to talk to when times are tough, as someone who is simply... a damn good friend. One of the best.

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A Different Perspective #2

By | Published Wednesday, June 22, 2011

"A Different Perspective" will feature posts from those who are close to me. I thought this would be a great way to let you guys 'meet' people in my life and get a glimpse of the people who make me who I am today! This post is written by my older brother, he is currently a pediatric resident at Children's Hospital in Boston.







The heart monitor reads eighty-nine, beeping softly in the dark room. Sandy tries to turn to her left, but the cast on her right leg inhibits her movements. Only seventeen, my sister has endured more hardship than most experience in a lifetime. Born with the birth defect osteogenesis imperfecta, or OI, she has undergone multiple operations and bouts of physical therapy in attempts to strengthen her frail bones and underused muscles. Scientists believe that mutations in DNA encoding genes in charge of collagen formation are responsible for the disease. On this occasion, Sandy is having surgery to replace the metal rod in her leg that two days ago broke through skin and resulted in an open wound.
When I was younger, I would ask my mom questions like "what's wrong with Sandy?", "why is she still at the hospital?", and, the one that upset her the most, "why can't the doctors make her better?" Foolishly, I grew up convinced that the physicians who worked with my family weren't good enough or smart enough to know how to 'fix' my sister. I set out to become a better physician than those who had failed before me. As I grew older, however, I learned of the boundaries of medicine, and how science limited the treatment options available to the orthopedic specialists. By high school, frustrated with the lack of knowledge and choices for treatment in the field, I had abandoned all hopes and dreams of becoming a physician. My family and I had heard enough of their supportive words, their "we'll see what we can do's" and "we're doing all that we can's". Nothing they did seemed to make her pain go away or cure her of her disease. Instead, I aspired to become a researcher.
After high school, instead of attending an accelerated medical school program, I entered MIT, the research institution where I believed I could address this deficiency in information. Enrolling in the biology department, I sought to learn as much as I could about biology and human disease, both its latest advances and its ever-present limitations. As a freshman, I joined the Horvitz lab to study C. elegans and genes governing apoptosis. The following spring semester, I moved on to the Yaffe lab to examine proteins in the DNA damage repair pathway. This past June, we published a paper on the tumor suppressor BRCA1 and the effects of cancer-causing mutations in these domains. Yet, as much as scientists work to understand the body and its function, there remain people greatly affected by disease, both so-called normal people with the common cold or flu and extraordinary individuals who fight for their lives on a daily basis.
At the beginning of our sophomore year, a group of friends and I discovered an EMT-Basic class that the student-run, fully volunteer MIT-EMS was offering in January during IAP. The prospect of helping people in need was alone enough reason to sign up, but really, who can resist driving lights and sirens in Boston traffic? In class, we learned everything in the protocols, from doing CPR to using an SAED, from delivering a baby to when to call for the medics. What thrilled us the most was the immediate application of knowledge from the classroom to the ambulance. Taking every opportunity to ride 'third,' I became a full EMT for MIT-EMS as soon as I earned my certification.
As I gained more experience, I gained the crew chief rating and was even elected personnel officer. The other crew chiefs and I volunteer an average of 24 hours a week, providing basic life support for the MIT community. When I first joined MIT-EMS, I, like every other 'baby EMT,' dreamed of racing to the scene, lights flashing and sirens blaring, where we would scoop up the injured party, pound on her chest, pump air into her lungs, and miraculously bring her back to life. As I rode on the ambulance more and more, however, I discovered the quality that had been lacking in my search for truth and knowledge in lab: a caring word and the touch of a hand for an oftentimes frightened and nervous patient. By actually spending time with patients, I learned that the role of a physician is not just to treat or cure, but also to provide comfort and care, because sometimes not advanced medicines but words are in fact the best treatment. I realized that this is precisely what the doctors and nurses did to not only care for my sister, but also care for my family in our tough times. It is these times that are often most frustrating for patients and their families, but it is also these times when the world needs doctors to show compassion and understanding in the face of inevitability.
It is 2:21 in the morning before Sandy awakens. I slowly leave my chair and walk to the bed. I smile, silently greeting her return to the world. She returns the smile, but winces as her suffering begins again. I look into her eyes and see both her relief that I am there and her struggle against the agony. Suddenly, there is a knock on the door. My father has come to watch her so I can get sleep before school tomorrow. "Hey Sandy. We're here for you." She smiles, nods, and closes her eyes to sleep.



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The posts in the "Different Perspective" series are submitted to Sandy but none of the content is changed by the blogger. 

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A Different Perspective #1

By | Published Thursday, June 9, 2011

"A Different Perspective" will feature posts from those who are close to me. I thought this would be a great way to let you guys 'meet' people in my life and get a glimpse of the people who make me who I am today!
This post is from one of my close friends from high school. T is not only my personal ride to everywhere around town but one of the most dependable and charismatic people I have ever met. I'm lucky to count her as among my closest partners in crime! 

The first time I saw sandy was when she shyly rolled into our chorus classroom.  Our boisterous teacher told the entire class before she got there about the wheelchair and a couple other things we could expect about Sandy. I thought it strange at the time that she would "warn" us.  Maybe she said it so we wouldn't stare or make comments.  I suppose you really can't trust a bunch of 14 year olds to always make the best decisions. Sandy was a soprano, and sat right by me.  Of course, I'd never seen someone like her before and I was curious, but tried not to stare.  I remember introducing myself and saying she was welcome to come have lunch with me and my friends.  I remember thinking she seemed really shy, but extremely self assured. Plus, she had a really sweet wheelchair. 
As the weeks went on, Sandy and I developed a friendship.  I remember asking what she thought about our chorus teacher introducing her to the class like that and I think that she was embarrassed. She just wanted to fit in and felt that there was too much information given to a bunch of strangers about her.  I think that getting to know Sandy means you get to know about the problems she faces.  Yes, anyone can go online and look up her condition and realize that bumping your backpack into her arm could break it, or that she probably won't grow past 3 feet tall, but being friends with Sandy has been a wonderful experience. High School certainly would not have been the same without her.

Being friends with Sandy definitely had its perks.  We got to ride in the private bus to school events and I got to control the joystick (sometimes "recklessly") and drive her wheelchair down the hallways. Her snazzy wheelchair was also a great spot to hang my dangerously heavy backpack and I got to hang out in the nurses office with her instead of going to class. Once I got my license, Sandy and I would go on adventures around town.  My car (which I recently sold - sad-face), was nice and low to the ground and Sandy had no trouble getting in and out of it from her wheelchair.  I finally got the hang of folding it up and putting it in my trunk.  Seat-belt buckled. Seat cushion removed. Fold Inward.  Angle directly into trunk.  It was a process, but each time was worth it. I remember one time, while driving around, Sandy asked where we were, and I thought to myself, 'clearly we're driving through the center of town', but then I realized that Sandy couldn't see out of the window! It was an odd realization that all she could see was the trees and sky above us. 

As graduation from high school approached, I was proud to know that I would be walking with Sandy during the graduation ceremony.  This also meant that all our friends got to sit in the front row (pretty awesome!). I was also glad that Sandy would be attending college across a river and a couple miles away from me.  As we started the journey of post High School life, it was empowering to see her face the challenges of college and living on her own for the first time. 
Each winter, our group of friends from HS would host a holiday party, and we would always figure out a way to get Sandy inside and around the house, through the rooms and (most importantly) to the food.  We have celebrated the holidays with her for the last 10 years and have even made it through a couple blizzards. One particularly memorable moment occurred during a huge snowstorm in which we had to get Sandy home in my little car without snow tires.  It was very slow going, but eventually we got to her house, which of course was on a hill and couldn't get into her driveway because of all the snow.  So we had to extract the wheelchair and carry her into the house.  Of course we were laughing the entire time at how silly it was that we were so determined to have a party that we put ourselves through treacherous conditions to make it happen and have everyone there.


The old HS gang at our annual holiday party
Overall, I must say that Sandy is one of the kindest, bravest, most caring, funny, clever and intelligent people I know and I am glad to have been so close with her for so many years.  Even now, 2 years out of college and several states in between us, I can say that if Sandy and I were to hang out tomorrow, it would be as though we had just left off the day before. 

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These posts are submitted to Sandy but none of the content is changed by the blogger.  

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