Recently, I wrote a post called “5 Awkward Situations Only People in Wheelchairs Face“. Because of the great feedback I received on that post, I decided it’d be fun to share more of my awkward anecdotes with you. With that said, feel free to laugh along as I talk about more of the embarrassing moments in my life.
1. Fire alarms
Remember when you were a kid in school and you would get so excited when the fire alarm went off because that meant less class time? Everyone longed to hear that sound and rush outside, even if it was just for five minutes. Well, maybe not everyone. As many of you know, elevators shut down once a fire alarm goes off which leaves the physically disabled in a pretty awkward and dangerous spot if they’re on any floor other than the first. In high school, I found myself on the second floor when the fire alarm would go off on several accounts. My assistant would carry me out of the building, but for safety reasons, the school always insisted on having a firefighter (side note: these firefighters weren’t like the ones you see on Chicago Fire) carry me back in. Yup, cue the awkwardness. I had to randomly be in some stranger’s arms as he profusely sweated up two flights of stairs to my class. Don’t get me wrong, I was always thankful for their help. But between the uncomfortable small talk and being a little too close for comfort to these men, I wanted nothing more than to escape those awkward situations.
2. Faulty, automatic doors
How exactly do automatic doors work? I would have to assume there’s a sensor that picks up when you’re walking (or rolling) towards the door, right? Now, call me crazy but I swear that these automatic doors have something against people in wheelchairs. I’ve been hit by an automatic door before, and I’ve been hit more than once! Okay, so maybe I’m just slightly bitter about it, but it’s kind of awkward when a door unexpectedly shuts on you, literally, in public. Please tell me this happens to other wheelchair users. Just the other day my friend and I were exiting a building that had one of these temperamental doors. She went through just fine, but as soon as I tried to go through, the door smacked right into me. I was too embarrassed to look back and see if anyone saw, but I have to admit, it did give us a good laugh.
3. Reckless driving
People in wheelchairs may have quite a few years of experience when it comes to operating their electric chairs, but let’s not forget mistakes are inevitable. We dent walls, we accidentally collide into other people, and sometimes we even break garage doors (sorry dad). One reckless moment after another, the awkwardness quickly piles up and you begin to wonder if maybe there should be a driving test before getting your own wheelchair. I was two and a half when I received my first electric chair, and that Christmas I accidentally knocked over the Christmas tree…oops.
4. Traveling abroad
Handicapped accessibility overseas is somewhat scarce depending on where you go, yet I still beg my parents to take me on a trip to Portugal every summer (I strongly recommend going there on your next vacation, it’s beautiful!). Aside from the general inaccessibility to many local businesses, one of the biggest problems I find with traveling to Europe is the difference in power outlets. Having to rely on transformers for all of your American gadgets can become a serious problem, especially if you have an electric wheelchair. I mean, let’s face it. What’s more awkward than blowing your wheelchair battery charger on a transformer the second day into your vacation?
I highly doubt that what I’m about to tell you has happened to anyone else, but it is one of the most embarrassingly awkward situations to have ever happened to me. My family and I were staying in this super fancy hotel on the beach right outside of Lisbon, Portugal, and on our last day there, my brother and I thought up this “genius” idea to let me ride the elevator by myself. As he went to document my new sense of independence with my camera (as pictured below), the elevator door shut without him having pushed a button. Because of my disability, I was unable to reach for the button and ended up apprehensively riding the elevator to a random floor. When the door opened, a couple walked in and the three of us awkwardly waited in the elevator until they realized no button had been pushed. Confused and concerned, they eventually asked me what floor I needed to go to. My family ended up getting some slightly judgmental looks at breakfast from that couple, and that’s when I knew it was time to head back to The States. To this day, I still wonder what that couple could have possibly thought about when they saw some girl just hanging out in an elevator.
Dear Mom and Dad,
Although there’s no rhyme or reason, I’ve never really been the type of person to express how I feel verbally. I know I tell you every day that I love you both, but sometimes saying “I love you” isn’t enough for me. Sometimes, “I love you” doesn’t entirely express just how deeply I care for the two of you, at least that’s in my opinion. But, without any explanation, I tend to shy away from talking about emotions or subjects of that matter which I’m sure you’ve already realized. I guess this is why I’ve always found comfort in writing. So, before I go off on a tangent as I so often do, here’s everything I’ve always wanted to say.
I realize these last several years have been anything but easy for us. I guess you could say that one April morning in 1991 really changed the course of our lives immensely. Were you scared that day? What was it like hearing the doctors tell you that I wouldn’t live past two and a half years old? Or that I had some rare genetic disorder that, at the time, no one really knew about? I can’t even begin to imagine the pain it must have caused. I’m so sorry you had to experience this, but look how miraculously wonderful things turned out. Although my life journey started off rather grievous and unpredictable, I wasn’t about to let my disease decide my fate.
Our lives have been put to the test more times than I can remember, but there’s never been a situation we couldn’t overcome. That’s the beauty of the relationship we share. We’ve been a team, always, and we’ve fought through every curveball life has thrown at us, together. And with that, I have to say thank you. Thank you for being my guiding light in the dark. Thank you for holding me through every tear and every moment of uncertainty as I questioned my ability to fight through another hardship, another illness. Thank you for doing everything in your power to give me so much more than I deserve. Thank you for allowing me to live the most fulfilling life possible.
Believe me when I say I wouldn’t be where I am today if it weren’t for the undying love and support you have unconditionally given me. My successes over the last 23 years are solely attributed to the fact that you have always given me the courage and motivation to soar. You have taught me to dream fearlessly. In times of weakness, you have given me strength. You have unselfishly put my needs before your own, and you are the reason I’ve progressed so well and continue to thrive. We may have had our fair share of difficulties along the road but we have each other, and that’s all I could ever ask for.
Mom and dad, at the end of the day as I drift off to sleep, I think about how incredibly lucky I am to have you in my life. Each and every day, I thank God for my blessings. I thank Him for my brother, my good health, and, most importantly, for you both. I know it may not always seem this way, especially when I get into those dreaded bad moods. It’s just that sometimes I let my demons get the best of me, and I tend to shut down. Like I said before, I haven’t quite figured out how to deal with my emotions effectively yet. But I take full accountability for all those times I’ve released my anger and frustration out on you. So, please forgive me. I imagine I must not be too pleasant when I act this way, but promise me you’ll always remember that I mean well. Because I love you. And I hope this letter expresses how much I really mean when I say those words to you.
Your baby girl
Happiness is a choice.
To be happy, one must look inside their soul. You have to want it. You have to realize that you are in control of your emotions and you are the ultimate creator of your own happiness. All the advice in the world cannot change the way you feel unless you’re truly willing to make that change. Regardless of whether we want it or not, life is going to have obstacles, and it’s going to be messy at times. When happiness seems like a longshot, there’s something you must always remember: you get to decide how you want to handle those hardships because you are the pilot on this journey. You can either feel sorry for yourself and all of your troubles, or you can learn to move on and lead a life of happiness. The choice is up to you, and only you.
It’s okay to be weak, sometimes.
Being weak doesn’t mean you’re giving up, and it certainly doesn’t mean you’re a failure. Those feelings of vulnerability and helplessness are a part of life, and I’m sure they happen to everyone. Between my long-term hospital stays and one-after-the-other medical problems, I’ve had plenty of experiences in my life where I’ve felt physically and mentally weak. I’m actually okay with it, though, because I learned to take my moments of weakness and turn them into strengths. In other words, you’ll never fully understand how to be strong unless you’ve experienced what it means to be weak. Despite what many people think, being weak can teach us a valuable lesson. You just have to be willing to pay attention.
Different is the new “normal”.
Growing up with a disability, I’ve always struggled with self-esteem. In middle school and high school, I didn’t like the idea of sticking out from the crowd. I was smaller and skinnier, I felt as though my wheelchair took up half the hallway, and I couldn’t seem to come to terms with the fact that I wasn’t like everyone else. All I wanted was to look and be normal. Fast forward to my twenties now, and I realize I had it all wrong. Fitting in is entirely overrated. I’m unique, and I like that I’m my own individual. My uniqueness is in part of what defines my personality. Besides, there’s some sort of mystery to being unique that people are drawn to.
Never take anything for granted.
So often, we hear this saying whether it be from a family member, mentor, or friend. Yet, I firmly believe we never understand just how powerful its meaning is until we lose what we have. Having a degenerative muscle disease, I’ve lost certain mobility like feeding myself and handwriting over the years. And truthfully, a part of me wishes I could go back in time to when I was able, just to savor that sweet taste of independence for one more second; but, life doesn’t exactly operate like that. So, wake up every morning and be grateful. Instead of focusing on what you don’t have in life, focus on what you DO have. Live in the moment, and learn to appreciate every tiny detail of your life, even if it is just being able to hold a pen between two fingers.
Don’t judge a book by its cover.
I understand that writing about clichés is somewhat frowned upon, but this one had to be mentioned because it’s completely and utterly true. A person’s outer appearance should never define who they are as a human being. Being confined to a wheelchair my entire life, I can’t even begin to describe the way many people treat me because of my disability. Their assumptions and misjudgments can sometimes be hurtful; so, I’ve always felt the need to validate myself as an individual to everyone. I may be disabled, but that doesn’t mean I don’t have feelings. With that said, remember that, disability or not, everyone deserves a chance. Instead of jumping to conclusions, take a moment to really get to know a person. You just might be surprised.
At the beginning of 2013, I decided it would be a great idea to keep a jar filled with different experiences that occurred throughout the year. Each time something significant would happen, I would write down the date and a short summary of the day’s happenings onto a small piece of paper, and then throw it into a mason jar. That way, at the end of the year I could pull out a written memory and reminisce on the good times. Funny thing about it? Well, little did I know that when I decided to write these entries, I was about to embark on the most amazing and fulfilling year of my life.
I was way overdue for a change when 2013 rolled around. The latter half of 2012 was a bit rocky after experiencing some health issues, and I was ready to put the past behind me and accept the fact that I needed to make a change. However, something about routine felt safe to me, so I was pretty close-minded at the thought of embracing something that people often shy away from. Change is certainly a risk you must be willing to take, and I guess you could say I used to let fear get the best of me. But, when you nearly hit rock bottom, the idea of letting go of who you are to change into who you want to be really seems like the only solution.
One early January morning of last year, my brother approached me saying I should start spreading my story in a way that could educate people on Spinal Muscular Atrophy. Ideas were exchanged and different options were explored, and on January 10, 2013, I posted my very first blog on this site. It was actually a little scary, to be quite honest, since I had never really pictured myself as a writer before. In fact, the idea of publicly sharing my thoughts with the world absolutely terrified me because I thought I wasn’t as adequate a writer as other bloggers.
However, something inside told me this is what I had to do. Something in my gut said to step outside of my comfort zone and see where it led me.
And, just like that, things began to change. My first blog turned into a second, then a third, and a fourth, and before I knew it, I had received an email from a chief editor at the Huffington Post asking me to contribute to their site. That email was, without a doubt, the biggest and most unexpected honor of my life. I couldn’t believe I was about to become a regular contributor for an internationally-recognized news and opinion website. With everything happening at once, I was finally beginning to understand that maybe if you just push fear and uncertainty aside, you can leave yourself more room for change.
From that point forward, my year continued to be filled with changes and other unforgettable experiences. I graduated from college, started working part-time, successfully urged RI officials to light the State House green for SMA awareness, raised over $17,000 at the annual SMA fundraiser, joined the press one night at a Patriots preseason game, and did so much more. Reflecting on my past year through the help of my note-filled jar, I realized the blessings I received whether it was free tickets to a Taylor Swift concert or helping a family who has been impacted by a physical disability. The jar not only reminded me of the changes that occurred throughout the year, but also of the changes that occurred within myself.
Picture yourself and how you were exactly one year ago. What has changed? Or, better yet, how have you changed as an individual? We’re human, and it’s inevitable for change to occur over the course of 365 days. We grow. We learn. We make mistakes. We learn to better ourselves. We do our best to help those who need it most. And, I think that’s the true beauty of a new year. It’s not about the resolutions we make to ourselves because, let’s be honest, there’s no law saying you’re only allowed to make changes on January 1st. Instead, it’s about being willing to accept and make changes every day of your life and refusing to fall into the stagnancy of routine. Never fail to recognize that change can be a good thing, a really good thing. So, feel it. Embrace it. And, most importantly, own it.
Below is a slideshow of all of my favorite moments in 2013 (it was hard narrowing the pictures down!). I wish you all the happiest and healthiest of new years filled with the most treasured memories, and I suggest you all start keeping jars of your own. With the uttermost sincerity, thank you for making my first year of blogging a super successful one. Here’s hoping 2014 will be even better than the last!
…is for you to listen to my dad’s latest Christmas single!
The Silva’s have always been musically talented people. Growing up I can remember attending local concerts and weddings and restaurants where someone in my family would be performing. I remember our family road trips to the beach or Cape Cod consisted of the four of us listening to my dad’s Beatle-esque CDs that were recorded in his little home studio in our basement. Actually, now that I think about it, my family still does all of this to this day. Whether it’s singing or playing an instrument or performing in church choirs, they’ve always been blessed with an amazing gift. And then…well…there’s me. Who’s the girl singing way out of key during Christmas Eve carols you ask? That would definitely be me! I’ve fully accepted the fact that I can’t hold a note, but, ever since I started writing I thought it’d be kind of exciting to write a song with my dad. So, with a catchy beat and lyrics that rhymed, “Waiting On Christmas” was produced (you can find the links below).
All instrumental credit goes to my father. He did an incredible job. With its fun and festive sound, I knew I had some pretty high expectations to meet with the lyrics, but I was happy to do so. As I was writing the song, I hadn’t realized how different it would be from writing a blog post. Besides formulating a storyline, I had to consider rhyming and whether or not the words in a verse matched the beat of a song. It was a little challenging, and it really put my creativity to the test. Nevertheless, I absolutely loved doing it! Who doesn’t like a like a little challenge outside of their comfort zone? Plus, I have a sneaky feeling that there will be more Silva-Silva collaborations to come!
iTunes: Waiting On Christmas
CD Baby: Waiting On Christmas
Enjoy! Comment on this post to let my father and I know what you think.