Two girls, two wheelchairs. It’s weird, we know. But it’s the only life we’ve ever known. No, we weren’t in a horrific car accident and we sure didn’t get attacked by tigers. We have a progressive, unforgiving, monster of a disease called Spinal Muscular Atrophy.
Spinal Muscular Atrophy, or SMA, is a recessive neuromuscular disease that causes muscles to deteriorate. I’m not just talking about the muscles in your arms or your legs. SMA affects the muscles that power your lungs, heart, and mouth. That makes it harder to breathe, speak and eat. There are three types of SMA. The most severe is type one, and it is the number one neuromuscular killer of babies under the age of two. But unless you or someone you know is affected by SMA, you’ve most likely never heard of it.
Life in a wheelchair comes with a lot of stares, very odd questions, gifts and pity compliments from random strangers. Most heavily it comes with negative connotations. People rarely associate those with physical disabilities as people, let alone ones with great lives, or even smiles on their faces; but rather with pain, discomfort and mere unhappiness. But what people expect my life to be like could not be further from the truth.
Lauren and I live wonderful lives full of adventure, success and smiles. That’s right, I said smiles. You know why? It’s because we are happy. We have gone to places and experienced things that most able-bodied people never do.
Lauren has been to the Great Wall of China and I have been to the Vatican, and that’s only the short list. Maybe we can attribute it to genetics because our dad is so adventurous, or maybe it’s our strive to live because we know our time is not guaranteed. My family has pushed every limit that was ever meant to bind me. Somedays it means bringing a 30 pound ramp so I can get into a friend’s house, and others it means lifting me on and off of a charter bus in Rome or carrying me to the top of the Eiffel Tower.
We have no reason to be unhappy, we lead tremendous lives; but some days it does kind of suck. Some days the stares are frustrating, and the stairs even more so. But I’ve found in my sixteen years of experience that it is easier to laugh about it. Because why should I let a piece of architecture ruin my day?