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Guest Blogger: My “Handicapable” Hero

This month’s guest blogger, Jacky Carlson, has a very special place in my heart. Jacky and I first got to know each other while she was my 8th grade English teacher, and she later became a great friend in my life. With her vivacious and colorful personality, she always knows how to brighten my day, and I am so honored to feature her as my second guest blogger.

Where do I begin?  Alyssa asked me to write a blog entry about the experience of teaching a disabled student.  I’m not sure I can do that as I have never considered Alyssa disabled!  She is more capable and motivated than most students and adults I have encountered.  In fact, I was more Alyssa’s student than she was mine.  Maybe she should be writing about having to contend with me as a teacher!  I’ll give it a try, only because Alyssa asked, and I rarely refuse her requests!

My first introduction to Alyssa was not face-to-face.  At a back to school staff meeting, our principal addressed us concerning an incoming sixth grader.  We were told a little about her disease and a lot about the fragility of her health. We learned how important it was for us to keep our distance if we had a cold.  What was a normal occurrence to us could be life threatening to her.  That certainly got our attention!  Needless to say, we were all a little edgy. What if one of us caused her to contract a cold or pneumonia or worse? We also worried about making sure that her classmates would take precautions in monitoring their own health.

We shouldn’t have been so concerned as it soon became apparent that her fellow students were better informed and more astute in dealing with Alyssa’s potential health threats than we were!  They had been her friends since Kindergarten, and interacting with Alyssa was second nature to them.

Until she rolled into my classroom two years later, I had had only a few brief encounters with Alyssa when her brother Adam was a student of mine.  She was the first wheelchair-bound student I had ever had. To say I was nervous is an understatement!  I wasn’t sure of the kinds of accommodations or modifications she needed or what I was expected to do differently.  Early on, I remember a conversation with Alyssa to the effect, “do what you can do on this assignment, and we’ll work with that.  Whatever you are able to do will be acceptable.”  I wish I could describe the look I got from her. In no uncertain terms, she informed me that she would be doing all of the work, thank you very much. That was the first and last time I underestimated Alyssa’s capabilities and motivation!

As the months went by, my education in how to interact with Alyssa, came from observing her and her amazing friends.  Nothing daunted them.  Helping Alyssa was part of who they were.  There were no barriers between them, least of all a wheelchair.  That was just how she got around.  I took my cue from them and became more comfortable kidding around with her and holding her to the same standards as the other students. Why not? Except for the way in which she traveled, she wasn’t any different.  Alyssa was a typical teenager, without the usual whining or complaining about schoolwork or the cards life had dealt her. When Alyssa moved up to the high school, we kept in touch.  By then, I was not only friends with Alyssa but also with her amazing Mom, Dori.  They welcomed me into their lives and into their family circle.  For this I am so grateful.

I have often said that I have had two heroes who have had a great impact on my life. Those two heroes are Anne Frank and Alyssa Silva. Interestingly, both of them were teenagers when I became acquainted with them.  And, they shared very similar character traits: limitless tenacity and optimism in the face of adversity.

IMG_0309Alyssa is a truly remarkable young woman who causes everyone who connects with her to become a better person.  She has achieved more in her twenty-four years than most people do in their lifetimes.  Through all of her ups and downs, I’ve never heard her complain about the constant pain or physical limitations that are part of SMA.  I am astounded by her accomplishments and filled with admiration for the student she was and the spectacular woman she has become.  Alyssa is smart, talented, compassionate and mentally stronger than I could ever hope to be!

Having had Alyssa as a student changed my life in many ways.  Obviously she inspired me with her courage and her attitude.  Befriending Alyssa meant becoming acutely aware of the fragility of life and making sure that each day is lived to the fullest.  I often told my students, “There is no rewind button, no replay – this is it, the only chance you get!”  Alyssa is the personification of this philosophy.  She also caused me to be more aware of the accessibility (or lack of it) in all the places I visit. I always wonder how easily Alyssa could enter.  Then again, nothing stops her!

Instead of blogging about the experience of teaching a disabled student, this has turned into a Valentine to my very “handicapable” hero! Alyssa, I remain awed and humbled by the way you have taken on your challenges to complete high school, graduate from Bryant University, and write a wonderful blog.  More than this though, you deserve recognition for being an extraordinary fundraiser for your charity W.O.W, (Working On Walking) and a motivational speaker for Cure SMA.  As a result of your effort and dedication, SMA researchers are approaching a cure.

I LOVE YOU, ALYSSA!!!!!

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To the Girl Who Picked Up My Pencil

During the month of February, The Mighty will be posting different stories from people who have experienced strangers doing random acts of kindness to them or someone they love. And, today, on National Random of Acts of Kindness Day, I’d like to share my favorite story (originally posted on The Mighty) about this one stranger who has become an important part of my life. This one is for the girl who picked up my pencil…

 

It was a sunny September day in New England, and I was just shy of turning 5 years old. I rolled myself down the wheelchair ramp and headed towards the school bus that awaited me. My parents’ eyes filled with tears and uncertainty as they flashed their camera at me. It was my first day of kindergarten.

My parents had been extremely hesitant about sending me off to school in fear that I would become sick or not fit in. My disease, Spinal Muscular Atrophy, made me susceptible to illnesses, and up until that point, I’d lived a rather sheltered life — with good reason, of course. Also, being in a wheelchair opened the opportunity to being ignored or judged by the other students who didn’t know better. However, my parents realized how important learning and socializing was for a child and decided to take a leap of faith and send me on my way.

IMG_0891I don’t remember much of kindergarten, but I’ve carried one story close to my heart over the years. I was sitting at my desk one day — we sat in groups of four — when I accidentally dropped my pencil and couldn’t pick it up. No one noticed. I tried to get my assistant’s attention to call for help, but she wasn’t looking, and the kids in my group didn’t seem to notice either. It wasn’t until this girl from the group next to mine came over to help me out. Her name was Amanda, and at the time, she was a complete stranger to me. She was a pretty girl with a bowl-shaped haircut and round glasses that only exist in Harry Potter novels nowadays. In a random, unselfish act of kindness, Amanda reached down to pick up my pencil for me, and, from that moment forward, we became the best of friends.

I’m not sure what it was in that moment when we decided to become friends. But I’d like to think fate had snuck its way into our lives that day. Amanda is the type of friend not many of us are fortunate enough to experience in a lifetime. She’s kind, she’s smart, she’s selfless and she’s one of the funniest girls I’ve ever met. She’s the type of friend who will put your needs before hers, who will gladly eat cookie dough by your side when you’re having a rough day and who will unintentionally make you feel like the luckiest girl in the world to know someone like her. On that one day in kindergarten, Amanda decided to look past my wheelchair and my disability. She broke down my parents’ fears that their little girl may never make any friends. She saw something in me, and she continues to do so each and every day. My world is much brighter with her in it.

I often think about how my life would have turned out if Amanda had never picked up my pencil. Or better yet if I hadn’t dropped it at all. But life is funny like that. Sometimes, the most random acts of kindness from strangers can turn out to be the ones that change your life forever. This fall, Amanda and I will be celebrating (and definitely bragging about) our 20th year of best friendship. Amanda is my person and my soul mate, and I can’t wait to live another 20 more with her by my side. I’ve encountered many random acts of kindness from strangers throughout my life, but I must admit, this one is my favorite. It gave me my best friend.

So, to the person who decided to pick up my pencil in kindergarten, I thank you for being so kind and love you with all of my heart.

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Rare Disease Day 2015

Did you know that SMA is the most common rare disease in the world? I always enjoy asking people that question because their reactions are something along the lines of, “wait…the most common…rare..oh, that’s kind of a mouthful.” It’s an oxymoron that confuses many, but hey, it’s the facts! Back in August, I was asked to participate in an internationally-recognized event known as Rare Disease Day, an organization that is dedicated to bringing awareness to those living with uncommon disorders and the impact it has on these people’s lives. FullSizeRenderAlthough different in each state/country, the Rare Disease Day event held in Rhode Island occurred this past weekend, and I was incredibly honored to be involved.

Hanging from the walls at Brown University Medical Center in Providence, RI are portraits, painted by local artists, of more than 20 people with rare diseases, and I am happy to say that I am proudly representing Spinal Muscular Atrophy. These portraits, however, are not meant to bring attention to the person’s disease or the pain and struggles their illness may be causing. They are meant to portray the individual, their smiling face, and their bright-eyed, positive outlook on life they have chosen to lead. Throughout the month, doctors, students, and other passersby will pass by these portraits during their daily activities and hopefully take a deeper look at the people before them. Because the people before them are real people. They have a story, and they deserve to be treated equally. They are not just some medical mystery labeled by a case number with a binder full of doctors’ notes and other concerns.

As an adult living with a rare disease, I have witnessed firsthand how often people define us by our disease and other medical ailments. The truth is, though, these people are failing to recognize that the only way we can ever be defined is in the way in which we choose to live. Yes, my rare disease is a part of who I am, but it doesn’t tell me who I have to be. Having the opportunity to participate in an event that showcases just that is an honor and something I am proud to be a part of.

I have SMA, SMA doesn’t have me.

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Artist: Fiona Buchanan 

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Guest Blogger: Alyssa and the Satellite

For the last two years, I have given my readers a firsthand look at the personal side of living with SMA, and, today, I’m happy to introduce my first guest blogger to share their own insights on this disease. Each guest blogger will have the opportunity to express their feelings on SMA and how it has affected their lives in order to give readers a fresh, and different, perspective. Guest blogs will be posted on the last Sunday of every month for the duration of this year.

Now, without further ado, meet my older brother, Adam Silva. Having Adam guest blog was extremely important to me because I want the world to know of this special bond he and I share and how, living with SMA, I couldn’t have asked for a more compassionate and loving brother. Through all the crazy curveballs this disease has thrown my way, Adam has always been there to see me through the toughest of times and keep me smiling. He is my rock. Adam is my protector and quite possibly the only person who knows me better than I know myself. And, just like the song he has referenced in this post, I’ll always be safe knowing he’s my satellite.

IMG_7704When Alyssa first asked me to make a guest appearance on her blog, I was a little apprehensive. She wanted me to write a post about being the sibling of a person with SMA, but how could I do that with just one blog post? I felt like there were innumerable subjects that I could write about. I could write about all the times that she was hospitalized as a child and how it taught me at such a young age how fragile life truly is and how much you need to cherish the moments you have with the people you love. I could write about all the times I saw her face adversity, and the hours she would spend writing the answers to a few math problems, needing to take a break every few minutes because her arm would get tired from all the writing, but never giving up. Going out in public and encountering people that didn’t understand her situation and as a result treated her like an infant or didn’t acknowledge her at all, but somehow always finding a way to politely show them that, in spite of her disability, she was just like everyone else. No matter what adversity has strayed across her path throughout her life, she has always been able to overcome it. Or maybe I could write about how much of an inspiration she is to all those people that are lucky enough to have her in their life. The way she faces each day with a smile on her face, never giving up and never letting anything bring her down, is nothing short of remarkable. I tossed these, and so many other, ideas around for days, fretting that I wouldn’t be able to decide on a subject for this post. Ultimately, the answer came to me in the most peculiar of ways.

It was late evening after a long day of work and I was driving home, looking forward to eating dinner and spending a few hours relaxing after such a strenuous day. As I drove, I was singing along at the top of my lungs (don’t laugh, you know you do the same when you’re driving alone in your car!) with a song by one of our favorite musicians, Andrew McMahon, when the subject came to me. The answer to the question I had been asking myself time and time again for the past few days was the most obvious answer of all. Every subject I had considered writing about ultimately summed up to the fact that, throughout our lives, Alyssa and I have developed an almost indescribable bond and that neither of us would be complete without the influence and support of the other.

I guess it really isn’t a coincidence that this idea came to me while listening to this particular song though. It’s a song that Andrew wrote about the birth of his first child and how much it has changed his life. The song is called “Cecilia and the Satellite” and though she may not know it, I’ve developed a strong connection between this song and my relationship with her dating back to November 9th of last year when she and I saw Andrew McMahon in concert in Boston.

IMG_1902Andrew McMahon has been one of Alyssa and my favorite artists for many years and we have been to see him in concert, at least, 6 times. The night was shaping up to be like all the others, full of laughing, dancing, and of course belting out every song that Andrew performed, when he began to play “Cecilia and the Satellite”. As he made his way through the first verse, Alyssa and I could be seen with our eyes glued on the stage and singing along with every word. It was then that made this night so memorable for me. Andrew arrived at the last line of the verse, “for all the places I have been, I’m no place without you”, when Alyssa and I both turned to look at each other, making eye contact, and singing the line. At the end of the line, Alyssa turned back to look at the stage and continued to sing along, but I kept my eyes on her a few moments longer. To this day, I still don’t know if she has ever realized what we had done in that moment, but it is something that I’ll remember for the rest of my life.

To describe the bond between us in one line could be no better stated than with that lyric. It was as if each of our subconscious selves recognized the connection between the next line of the song and the bond we have between us, the beauty of the moment as it all came together, and willed us to look the other’s way for those few moments, expressing so simply, yet so wonderfully, how much we have meant to each other’s lives. Andrew may have been singing about the bond that he feels with his newly born daughter, but those feelings can just as easily describe the relationship between life-long friends, husband and wife, or brother and sister.

Over the course of our lives, Alyssa and I have been through enough hardships to last a lifetime. There have been nights where one of us has gone to sleep not knowing if the other will still be alive in the morning. Not knowing if the events that have occurred have changed our lives forever. Not knowing how we will find the strength to face the next day. It is those times that the bond we share presents itself the most and is most obvious to the people around us. We have always known exactly what to say and exactly what to do to help each other through whatever it is we are facing. We have always known how to bring a smile to the other’s face even as the tears are falling down. To pick each other up and help each other through the storm. Through the love and support between us, we have always found a way.

Of course our lives haven’t been all hardships and pain. Most of the time Alyssa and I have a relatively normal brother, sister relationship. Some of the happiest memories of my life have occurred with her by my side. She has been and always will be my best friend. About a year ago, I proposed to my beautiful fiancé, Krystina, and asked Alyssa to be my best man. I know it is unconventional, but let’s be honest, there isn’t much about our relationship that is. I look forward to the day that I will be married to Krystina and will be honored to have Alyssa by my side, and though getting married will be the beginning of a new and wonderful journey with Krystina, that doesn’t mean that as I continue my journey through life, it won’t be without you Alyssa. For all the places I have been and all the places I will go, I’m no place without you.

 

Andrew McMahon in the Wilderness- “Cecilia and the Satellite”:

http://www.youtube.com/watch?v=G_zY_jSVXSU

International Day of Acceptance

Happiness begins the moment you learn to embrace who you are and accept all that you have to offer no matter how different you may look, seem, or feel. It begins when you choose to look past the unrealistic standards and stigmas that exist in today’s world and move forward with knowledge that you are just as deserving as the person next to you. The happiest of people wholeheartedly embrace their diversities. They learn to love their lives and empower those around them to do just the same. They are also accepting of everyone else’s diversities. The most diverse people may have the greatest stories to tell, and the greatest stories told are the ones that live forever.

Today, January 20th, is international day of acceptance. This day is about breaking down the stereotypes that exist in today’s society and learning to be accepting of everyone’s paths of whom you cross. My disability does not want you to judge, poke fun at, or criticize. It does not want you to hate. My disability does, however, want you to be accepting and open to embrace the many diversities of life. My disability is my great story, and I hope to tell it to the world.
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Ringing in the New Year

I can remember at the end of last year, looking back and thinking about all of the incredible memories I would carry with me into 2014. That year, 2013, was special, and because it was so special, I was anxious about leaving it behind. January 1st technically is just another day, but I always used to experience these weird, unsettling feelings about new years in the past. I’d read articles upon articles that reflected on the year’s best moments, then think about how the current year was my best year yet and would hesitantly ring in the new year with a glass of champagne to mask my doubt. However, in my brief bouts of paranoia and anxiousness over the years, I failed to recognize that the best and most exciting part of a new year is the opportunity for growth that lies ahead. It’s the opportunity to become a better version of yourself, to learn, to dream, and to write the next 365 pages exactly how you choose to.

The past year has taught me that, if I pay close attention, I will learn a valuable lesson in each experience I face. 2014 has helped shape me into a stronger and more confident person than I ever have been and, looking back now, I realize it’s because of how I lived each moment. The moments of pain and struggle, I learned, were just blessings in disguise or temporary obstacles to prepare myself for something greater. It is these moments that will shake you to the core and make you question every little aspect you thought about life, until you finally find the answers and the strength to move forward with a new found respect and hope for yourself as a worthy individual.

And then, there are those times, those beautifully remarkable times that leave you feeling like the luckiest woman in the world. As you live and breathe these moments right before your eyes, you get these crazy rushes of emotions while trying to make sense of it all because it’s almost too good to be true. And, in these moments, no matter how minuscule or how great they may actually be, you learn to become grateful and humble, and those feelings will become embedded in your soul for the rest of time. I am beyond blessed to say that this past year was full of moments like these.

2014, thank you for opening the door to so many unbelievable opportunities that will come to fruition in the upcoming year and for always surrounding me with a remarkable group of friends and family. Thank you for the experiences that showed me to search deep inside my soul in order to discover my self-worth and the confidence that had been buried under so much doubt. It’s been an amazing ride, and I have a good feeling 2015 is going to be just as good.

 

To my readers: thank you for showing so much love and support on my blog over the last year. Your comments and emails are so heartwarming, and I cannot wait to hear from you in the year ahead. May your 2015 be filled with happiness, health, and peace.

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New Beginnings and Bigger Dreams

When I was a little girl, my friends and I would have lemonade stands to raise money for Spinal Muscular Atrophy. I had always dreamed of raising $100 for this cause, but I guess I figured selling lemonade at 50 cents a cup wasn’t the most lucrative option. So, with a goal in mind and an incredible support system by my side, I decided to branch out and explore other ventures, and almost two decades later, over $100,000 has been donated to SMA research. My efforts have all been done under the name, “Working On Walking”, and, today, I am super excited to say we have officially applied for nonprofit status with the IRS in hopes of becoming an official nonprofit organization. Here’s to new beginnings, bigger dreams, and the people who have helped me come this far! I can’t imagine my life without you.

(Special thanks to the remarkably talented Ray Oleaga for working with me to create this beautiful logo!)

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