Dear curious one,
I saw you catch a glimpse of me from a table away. Your eyes fixated just long enough for me to know that I had sparked your interest.
I completely understand. It isn’t every day you see a girl roll into a coffee shop with a personal care assistant to one side and her service dog to another. It’s not every day you see a grown woman being fed small bites of a chocolate chip muffin, or asking for sips of coffee, or needing assistance in every physical task down to moving her index finger to her cellphone.
I’m not fazed by your curiosity. In fact, I encourage you to find out more because, although you have formed what might seem like a pretty good generalization of the person I am and the life I lead, I promise you that I am so much more than what meets the eye.
Just before I turned 6 months old, I was diagnosed with a medical condition called spinal muscular atrophy (SMA). To put it simply, SMA is a degenerative neuromuscular disease that falls under the muscular dystrophy umbrella. At the time of my diagnosis, access to the internet and information on this disease wasn’t readily available. The only prognosis my doctor could give was one no parent should have to hear.
“Within two years, she will succumb.”
The reality of SMA is that it’s a progressive and degenerative disease that causes muscle weakness over time. However, as it turns out, just because the textbook definition says one thing doesn’t mean the prognosis of this disease always has to fit the same mold.
Curious one, I don’t expect you to get to know me just from this one letter. There are a lot of stories to be told from my 27 years of living; stories that have broken and sewn me back together again to lead me to where I am today. These stories tell tales of countless hospital stays and everyday battles that somehow become second nature to someone living with SMA. Yet they also tell a tale of a disease that tried to destroy a girl who was never willing to give up the fight.
In spite of the struggles I face, my stories are filled with one common theme: strength. Whether that strength comes from the ability to simply face the day or take giant leaps of faith in pursuing my dreams, I choose to be strong. SMA may weaken my muscles, but it can never take away from my spirit.
Back in college, I had a professor tell me I would never amount to anything because of my disease. The moment he failed to look past what he saw on the surface was the moment he failed to see me for who I really am. He failed to recognize my true strength and potential. Yes, I am that girl in the wheelchair. I am that girl who can’t live independently or drive a car or even reach out to shake your hand.
However, I will never be that girl who won’t surmount anything because of a medical diagnosis. In 27 years, I have pushed my limits and fought hard to create a life that I find worth living. I have graduated college and founded a nonprofit organization that’s dedicated to raising funds and awareness for SMA. I have discovered a passion for writing and how storytelling can help others. Most importantly, I have found strength in my struggle to understand that this life is only ever going to be as good as I make it.
The next time you see me and my posse out, please know that I have SMA, but it will never have me. My disease doesn’t define who I am nor does it set me apart from everyone else. After all, between chasing dreams and cups of coffee, I bet the chances are you and I have a lot in common.
I dare you to find out.
Alyssa Silva was diagnosed with spinal muscular atrophy (SMA) at six months of age and, fueled by coffee and kindness, has made it her purpose to educate others on life with this disease. In doing so, Alyssa shares honest stories of struggle and strength on her blog alyssaksilva.com and runs a nonprofit organization she founded, Working On Walking, to raise funds and awareness for SMA. In her spare time, she enjoys discovering new coffee shops, singing along with the radio completely out of tune, and laughing with her friends, family, and dogs.