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Guest Blogger: From the Outside Looking In

It’s the last Sunday of the month which means it’s time to feature my next guest blogger! Below is a piece written by Krystina Pallos, the amazing girl who will be marrying my brother in just 34 days. In this post, Krystina explains what it was like to enter into a family as someone who was unfamiliar with a person living with a physical disability, let alone living with Spinal Muscular Atrophy. Her words have truly captured the essence of this family and the world in which we live in, but before you proceed, there’s something I must share with you all, first.

Krystina may think she’s the lucky one to be marrying into this family, but we are even luckier. You see, not everyone will care to understand what we go through on a daily basis. Not everyone will make the effort to help. Not everyone will be accepting of this disease and all the extra “stuff” that comes along with it. But, Krystina has. She has shown her love and support for this family and has always been accepting, understanding, and ever so willing to help. She’s the perfect girl for my brother. And, as for me, I cannot WAIT to officially call her a sister in just a few short weeks.

When Alyssa asked me to be her guest blogger for this month, I was honored and nervous at the same time. I have known Alyssa only three years where her past bloggers have known her pretty much her whole life. But, the more I thought about it, I realized I could give a very different perspective from others in Alyssa’s life. I could give the perspective of someone who came from the outside of the family.

I came into her life in 2012 without ever personally knowing anyone with a physical disability and had never even heard of SMA. I hate to admit that I was scared to interact with her at first, but I was unsure how to act. Should I offer to do things for her or just wait for her to ask me? Should I ask people to move their chair so she can get by or will she just ask herself? After some time of sitting on the outside and watching how her family and friends interacted with her, I got the answers to my questions.

IMG_5308For being someone who has to rely on others for nearly every task, I have never met someone more independent. She will let you know when she needs something, she will arrange all her own plans and she loves meeting new people. I often joke that for someone who can only sit still, Alyssa never actually sits still and hates just staying in the house and doing nothing. Even if it is just going for a car ride to get Awful Awfuls (our favorite milkshake here in Rhode Island which I will always gladly go with her for), she just wants to get out and be able to do the same activities as people who do not have a physical disability. SMA has taken away most of her physical capabilities, but she refuses to let it take away anything else.

As I often tell people when I talk about my future family, the Silva’s love so hard. They know no other way but to take one day at a time and work as a team. They are so close and open with each other as it seems the keys to making it all work are communication and lots of love. They have showed me that having a family member with a physical disability is an experience you should embrace with positivity. Some days are definitely tougher than others, especially those nights when there is not a nurse so everyone can just get a little sleep, but the good far outweighs the bad in the Silva house. There is always time for some laughter and love no matter how long the day was. They will not let SMA win this fight. Instead, they have always been in Alyssa’s corner helping her to be a true champion.

Three years ago, I started on the outside with no idea what SMA was or how to interact with someone living with it, as well as trying to figure out how to fit into this super close family. Marrying her brother, Adam, next month means I am officially on the inside! I have learned when I am needed without asking, what foods need a fork and which need a spoon when feeding her (I had a few spills when learning the correct techniques, sorry Alyssa!), how to perfectly bake cookies or brownies so they are soft enough for Alyssa to enjoy, and to move my feet when I am sitting in the back of the van… Or else she will run them right over. She has had such a positive influence on my life as well as my family’s lives, and I’m pretty sure she has taken over the title of my mom’s favorite child. Growing up, I always wished I had a sister, but now I understand why I was blessed with two brothers. It has made me so much more thankful for finally gaining a sister when Adam and I get married. And, not only am I gaining just any sister, I am lucking out and gaining the most remarkable one.

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Meet My Family: Part 1 of 3

 

 

This piece you are reading is going to be part of a series of posts. Be sure to follow along by submitting your email address in the sidebar! 


 

One question I am often asked in interviews or random conversations with people is, “How do you keep moving forward?” It’s certainly a valid question given my physical limitations and grim prognosis, but I often found myself searching to come up with an appropriate answer. After all, how am I supposed to sum up these last two decades in a few short sentences? There’s a lot that I’ve experienced and endured which has helped me in moving forward, of course. I’ve experienced happiness, I’ve experienced darkness, and I’ve experienced everything in between. However, through this ever-changing life, experiences come and go. They serve its purpose, but sometimes that purpose just isn’t enough. For me, my strength and positive attitude comes from three constants in my life that, I believe, have always kept me moving forward regardless of how difficult of a situation I might be faced with. I refer to them as the 3 F’s—my family, my friends, and my faith—and, this will forever and always be the answer to that question.

For the next few weeks, I am going to be discussing these important aspects (the 3 F’s) in my life. As for today, I’d like to start by introducing you to my family through a photo blog. Meet Phil (father), Dori (mother), Adam (brother), and Krystina (future sister-in-law). Oh, and we can’t forget about Vince Charming (the pup), too! The people you are looking at in these photos are the people who are completely and totally responsible for my well-being today. They are the people who have loved and supported me unconditionally. They are the people who selflessly put my needs before their own to ensure that I’m living to my highest potential. They are the people whom I can’t imagine my life without.

My family is the greatest gift in my life. Each and every day I’m thankful to be surrounded by amazing people that deeply care for me and have provided me with the support I need to lead a happy and fulfilling life. It is through their strength and guidance that I have not only succeeded, but also thrived in spite of living with this debilitating disease. Because of them, I am blessed.

 

(The pictures you are about to look at were taken by BJ Photography during the peak of the foliage season last autumn.)

 

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Guest Blogger: What a Lifelong Friendship Looks Like

Last month, I introduced you to my very best friend, Amanda, in a post titled “To the Girl Who Picked Up My Pencil“. Amanda is a pretty remarkable girl and the type of friend everyone needs in their life. I’m extremely fortunate to call her my best friend. After receiving so many heartwarming messages on that particular post and the relationship the two of us share, I asked Amanda if she’d like to be this month’s guest blogger. She happily accepted, and here’s what she had to say.

 

In one of her recent blog posts, Alyssa shared the story of how we became best friends back in kindergarten. I was truly flattered by all of her kind words, but cannot begin to tell you how lucky I feel that Alyssa came into my life and has never left my side. You often hear people say, “Everything happens for a reason.” Although it may sound cliché, I strongly believe in my heart that Alyssa did come into my life for a reason. She has made such an enormous impact on my life, and words cannot express how fortunate I feel to have her. People have often come up to me with questions about Alyssa and her disease, and I feel that people are curious about what it is like to have a best friend with a disability. Although Alyssa’s life is very different from most, in many ways, she and I are just like any other pair of 24-year-old best friends. For example:

  1. We spend our days talking about anything and everything.
  2. We convince each other that we really need to buy that new shirt (even if we own 25 others just like it).
  3. We have about 100 nicknames for each other, and can’t remember the last time we actually called the other by their first name.
  4. We like to go out on the weekends, but are sometimes even happier spending Friday nights in sweatpants watching reruns of ‘The Office’.
  5. We know exactly how to cheer each other up when we are feeling sad (for Alyssa, anything in the dessert category should do it).
  6. We tease each other, but all out of love, of course.
  7. We spend a ridiculous amount of time together, and will often send “I miss you texts” when we haven’t seen each other in a while (so, basically two days).

The list could go on and on. Alyssa’s life may be different, but despite the pain and fatigue she often faces as a result of her disease, Alyssa never lets that hold her back, especially when it comes to being a friend. I went to college at Sacred Heart University in Fairfield, CT, and, of course, I always missed Alyssa when I was away at school. For five years, we were two and a half hours and a hundred miles away from each other. One day during my senior year, Alyssa told me her New Year’s resolution was to take a trip to Connecticut to visit me at school, and, just a couple weeks later, I was woken up to find Alyssa sitting in my living room ready with a camera to capture my surprise! Despite how difficult and tiring it must have been, Alyssa drove two and a half hours each way just to spend the day with me and to see my school for the first time. This will always be one of my favorite memories, and I am so happy I had the chance to share my school with her. 

As we are approaching our 20th year of being best friends, I feel as though I can’t pick just one “Alyssa story” to tell. In fact, I could probably write an entire book on how much she has inspired me, and changed my life. Having a best friend with a disability teaches you a lot of things. Alyssa has taught me the true meaning of strength, perseverance, and hope. She overcomes great obstacles, and never loses the desire to live life to the fullest. When I am having a rough day and feeling unmotivated, I often think of Alyssa and all she overcomes which helps motivate me to be better. I am so unbelievably proud of her and all she has accomplished and cannot wait to see what amazing and inspiring things she does in the future. There is truly nothing on earth like a lifelong best friend.

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We Are Working on Walking

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Five years ago, I remember planning our first annual fundraiser for SMA with two very special people in my life and not having a single clue as to what I was doing. It was scary, and it was nerve wrecking, but it just felt right. So, together, we took a leap of faith and ended up soaring far beyond our expectations. Our team of three doubled, then tripled, and now here we are today with over two dozen people (some missing here) working to put on a remarkable event for hundreds of guests who greatly support SMA. I’ve never been more sure of something in my life when I’m with these people planning and organizing for this event, and I’m so excited to kick off the 6th Annual WOW Fundraiser for the first time as our very own nonprofit organization.

Together, we are working on walking.

This event will take place on August 10, 2015. Please visit workingonwalking.org for more details.
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Why I Choose Resiliency

“Women are awesome,” said Sallie Krawcheck, chair of Ellevate Network, as she made her opening remarks at Bryant University’s 18th Annual Women’s Summit on March 13th. Her message was simple, and as she spoke about the different challenges and stigmas women face in today’s society, I began to think about the double stigma that sometimes exists for women in the workforce who have disabilities. Although I am still young, I’ve experienced many firsthand accounts when I’ve been stigmatized by my disability and what I’m capable of. Many people have the tendency to take a look at me and assume that because I’m confined to a wheelchair, or because I am physically disabled, I am incompetent. It’s frustrating, and sometimes hurtful, but I do not in any way feel sorry for myself. What these people don’t realize, what they fail to understand, is that my disease and all those heavy burdens and obstacles that seem to “weigh me down” and “deem me incapable” have actually given me the perspective I need to work harder in order to succeed and thrive.

10636386_10204199308251389_2394285510428958216_oDuring The Women’s Summit, I had the pleasure and opportunity to briefly speak with Hoda Kotb, co-host of the fourth hour of NBC’s TODAY and this year’s luncheon keynote speaker. For those who have seen Hoda on television, her personality on screen is exactly the same when you are face-to-face with her. Kotb’s bubbly and vibrant personality radiated the room as she spoke, and it was almost as if I could feel her positive energy glowing. She spoke about her story and her path to getting where she is now, but what really caught my attention was when she spoke about her obstacles. She looked at me and said, “The only way you get stronger are through your obstacles.”

Living with a terminal illness, my obstacles have become a part of my journey. I’ve fallen down, and when I’m nearly at rock bottom, I’ve learned how to pick myself up again. In every obstacle we face is a lesson, one that we have to be open to learn. Hoda’s journey as a breast cancer survivor exemplifies just that. She took what life gave her, fought as hard as she could, and came out a stronger woman. She believed that her obstacles we’re transforming her life for the better, and she was right.

In the midst of challenges and obstacles, we can either close ourselves off to the situation at hand or we can learn to become resilient. The moment we choose resiliency and believe that our obstacles have the power to transform our lives for the better is the moment we can begin to succeed and thrive. By choosing resiliency, we can become more accepting of the obstacles in our lives because we finally understand that we have the strength to overcome them. We can even become more powerful in our thoughts and outcomes. Hoda mentioned how if we have the ability to be standing tall after experiencing a life-altering event, we gain the ability to adopt a “you can’t scare me” mentality. Listening to this remarkable woman recount her story of breast cancer and how it changed her life reinforced the idea that the obstacles we face in life can turn out to be the stepping stones to our success.

There’s something quite empowering about being in a room filled with over 1,000 women—and men—who are all looking to improve some aspect of their lives. Whether it may be personally or professionally, The Women’s Summit always provides its attendees with the knowledge and inspiration to implement new practices and strategies into their own lives. Moving forward, I will always hold on to the stories, struggles and successes shared from women like Krawcheck and Kotb for they have provided me with valuable insight that I can apply to my own life. They have demonstrated that in every unique situation, or journey in life, is the opportunity to become something great.

My disability is not meant to be understood as something that limits me. In fact, I can confidently say that I believe my abilities far exceed my disabilities every single day of my life. The obstacles brought upon by this disease serve as lessons which can only be discovered in the resiliency I have to overcome them. My resiliency makes me stronger, and it allows me to succeed and thrive.

I am a woman. I am disabled. And, hopefully, I am on my way to being awesome.

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#DearMe

#DearMe is a YouTube campaign that is asking women what advice they would give to their younger selves in honor of International Women’s Day.

 

Although you may not realize this yet, there is a beautiful life ahead of you. You just have to promise to believe in yourself, first.

You are young, and some of the greatest and most beautiful days of your life are still ahead of you. Carpe diem the hell out of those moments. Stop letting fear and self-doubt interfere with your journey because there is so much potential inside of you that has yet to be discovered. Never forget the voice inside of your head telling you to dream big because, believe me when I tell you, she is guiding you to the greatness that your future holds. Those dreams you had as a little girl, the ones when you so badly wanted to make a difference, they weren’t just fleeting thoughts. They were your calling, and by continuing to passionately and confidently chase your dreams, you will soon understand this. You will understand that your disability does not, in fact, disable you from what really matters. You will understand that you are able, you are capable, and you have what it takes to live a beautiful life.

Here’s the thing about your beautiful life, though. It won’t always seem beautiful, and that’s okay. Sometimes, the beauty will disguise itself as pain, as suffering and as defeat, but you mustn’t allow that to discourage you. During those moments, remember that you were given the strength and courage to fight, and you will eventually understand how to rise above each obstacle life throws your way. The ugliness you will sometimes face gives you the opportunity to learn, grow, and be better than you were before. When you realize this, when you realize that you have the power to be stronger and more resilient with each trial and tribulation you endure, you will wholeheartedly accept your life and all it has to offer. And, that’s when life will become truly beautiful.

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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!

IMG_0024My 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!!!!!