Robyn’s Speech

Hi. My name is Robyn. I am a Freshman here. Many of you know me from Dartmouth, and many of you may just remember seeing me in the halls, because – lets face it, these wheels I drive  everyday, are not easy to miss. I have been home for the past 7 weeks, recovering from pneumonia and a collapsed lung. While I’ve been home, missing my classes, friends, teachers and yes – EVEN my homework – I have thought a lot about life, and other people. I’ve wondered if people are afraid to get to know me because of my wheelchair? I know it can be very intimidating, so I thought, with this Rally coming up – it would be a great way to share some things about me, what happened to me – and let you know, just – that I am a normal teenager…one who spends too much time texting, is obsessed with cool shoes, loves Taylor Swift and Rosanna Pansino, loves to sing and act, I am an awesome artist, and yes, I too day dream about that cute boy in class. So here it goes. I was born with Ullrich Congenital Muscular Dystrophy. If you’ve ever heard of “Jerry’s Kids” and seen that telethon they used to do on Labor Day, that was for people with MD. There are 40 kinds or more! Mine is very rare. For those of you who like Biology and DNA stuff – it affects the Collagen in my muscles and my connective tissues/tendons. Collagen in our muscles provides a strengthening barrier around the cells, and since mine don’t work right, my muscles are very weak. They can’t be strengthened at all. I can try to keep them the same – or they get weaker over time, especially as I grow, because the added weight as I get bigger, makes me weaker. Unfortunately my lungs are affected too, and the weaker I get, the harder it is for me to recover from a cold, or even just congestion from allergies, or even crying. It makes it hard to breathe. One good thing is, It doesn’t affect my mind at all. So that’s a brief description of why I have been in this chair, since I was 4 years old. I have Muscular Dystrophy, or rather, it has me – but it is NOT who I am. I am Robyn. I am like you.

Many people I am sure, wonder what it’s like. Physically, of course it sucks – I won’t lie. Especially when I was younger and kids could go on the slide and monkey bars on the playground, or play in bounce houses and I couldn’t. Not being able to visit people who live in homes or go into some stores or places with stairs. Not being able to fly anymore, because I can’t sit on the chairs in an airplane, or any normal chair – just this one! Emotionally – some things suck in that department too. Being a teenager on it’s own, means it’s normal having all kinds of changing emotions and feelings – but toss in a 400 lb wheelchair for legs, and a body that’s getting weaker and not working the way you want it to, and then you worry about all kinds of other stuff too. Will people give me a chance? Will I get to be in the school play? Will I ever meet a boy that will see past my chair – and think I’m pretty, and like me for me or ask me to be his girlfriend? What if my aide is sick and I don’t have someone to help me in class? What if I can’t do that cool Science experiment because I can’t reach the equipment from my chair? And the hardest one – will I still be here, alive – to make it to Prom? Graduation? I read something last month, that another girl who has what I have, wrote on Facebook – about the crappy parts…and she said it perfectly. She said “Living with this muscle wasting disease can sometimes feel like a battle with an invincible enemy, that’s attacking me from the inside, and outside too! It knows me better than anyone and It’s a nightmare that fights me, even though I am awake. It’s progression can be slow yet insidious, then all of a sudden fast and frightening.” Reading about it, and knowing that its terminal…that it wants to steal my life away someday, what does anyone really say to that? It’s a challenge getting through each day…worrying that at any moment, I might turn a dark corner and a Vampire silently falls in step behind me, and swiftly trades my life for its hunger. But there are SO many people out there in the world battling things that can take their lives…who got the “unlucky” ticket from the lottery of life. Cancer, and so much more. But some people can lose their life tomorrow in a car accident. Life is life, and I have learned that we have to make the most of what we have TODAY – and appreciate it all today. Focus on the good things.

And with that, I want to say – this is no sob story. Not at all. It’s to say that understanding and accepting the fact that this may be a losing battle someday soon, is NOT a reason to give up. For me, it’s the opposite: it drives me to make the most of every day. To help others who are different – gain a new understanding from those around us. To cherish everyone and everything. All the little moments, not just the big ones. Take a moment, right now, and think about some of those things that make being alive so fantastic. Think about laughing so hard that your eyes fill with tears. About hanging out with your friends, staying up all night with them, singing along to your favorite song blasting on the iPod. About your heart racing when you see your crush in the hall. Getting a good grade on that test you thought you didn’t do so well on. Being asked to the dance. Getting a bunch of likes on a video you made, and posted on YouTube. Think about all of the things and memories that make you smile…

There are so many reasons to keep going…there are many reasons that I try to make the most of every day. To still keep going to a public school, instead of be home schooled! Because LIFE is awesome. Being here at Branham is amazing – getting to be a part of all the things that make High School what it is The fun, the challenging and the scary! I keep going for my family who has gone out of their way on countless occasions to allow me to excel. For my friends who have stuck by me through hard times and long hospital stays…who have seen the real me, beyond the legs that don’t work, and the body that is too weak to keep up with my mind, for the teachers who have helped me juggle my schoolwork and succeed when I am forced to spend many school days recovering at home: without their help and love and support, I would not be the person I am. I do this for other people with muscular dystrophy, or who have challenges that make they different, especially younger kids, so that they can see that anything is possible. I also do this for those who wouldn’t give me a chance and decided I wasn’t worth knowing, like the kid in preschool who said they didn’t want to play with me, because I couldn’t walk. Yeah, Its true. They really said that, . like it was a choice I made, and I chose not to walk! But, as hard as it was to hear that at 4  years old – I  am GLAD they said it, because their words gave me the drive to show people I am NOT different in a bad way, and that I am someone worth knowing, working legs, or not. I am thankful…because the lack of understanding I encounter in so many places, has encouraged me prove to MYSELF that I can accomplish things that I thought would be impossible. Dance classes. Softball. Musical theater. Making movies with friends. Karate – all things I have done, sitting in this chair! And isn’t that what’s most important? What WE think of ourselves? Not others! We have only to prove our worth and value to ourselves, and those who are worthy of us, will see the good in us, because it radiates from the inside, out!

So today, I want to say thank you. Even if I don’t know you. Thank you for the experience of being here with all of you, instead of learning from a faceless computer at home. I will remember it all! And to ask you for one favor. To please remember, if you see someone here at school, at church, in a store…that looks different than you, who can’t do things like you, please don’t shy away from getting to know them. They are like you…in all the ways that matter. They are a person. A Human. Say hello, smile. See all of them, not what you see as their disability. Because its not a disability. Its a DIFFERENT ABILITY. We have many classes here called special day classes, with students who have different abilities. My best friend Veronica has to be in one most of the day. It’s hard being separated. She’s very smart and can do so many things I don’t think she gets the chance to show she can do. When her class goes to other schools to celebrate holiday’s or doesn’t participate in lunch time activities with the rest of the school, it sucks, because we can’t share that day together! She has to be separated from us. I wish they could be a FULL part of the school, and not separate. Many of you are in the Best Buddies Club – and have a kind heart and want to help those teens in those classes feel more included – and liked! Thank you for that. All of us need to do that. If each person in this world, tried to put themselves other people’s shoes, could imagine for a moment, how THEY would feel if the lottery of abnormal DNA chose them. No one chooses it, it chooses us. Just like the color of your eyes, or hair – the size of your nose, or how tall you are going to be. Imagine how much better this world would be, how much more happy, and peaceful. God created each of us to be our OWN person, to be unique and special in our own way. If we were all the same – how boring life would be! 

My hope is that being brave in sharing this, this Holiday season especially, that other people who’s bodies don’t work right, like me, or that just feel awkward, or different, or have felt left out or lonely for whatever reason – can also find a way to say that their lives are not sob stories. They are  not a freak, or unworthy. That they are strong – not weak. Beautiful or handsome – not different. We are all fabulous and powerful beyond measure! Each and every one of us. We each have something special to contribute to this world, so show it. And don’t let anyone EVER make you hide way or feel any different. Thank you for listening…

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