Tuesday, August 21, 2018

SMA Awareness Month: Other Perspectives, Part 3


For the third guest post in my series for SMA Awareness Month, meet Alyssa. She and I met through Instagram also, and I'm so happy you get to read her story! I actually mentioned her in this post, here.
I’m a firm believer we are given two choices that could make or break the direction in which our lives are headed in. We can either a) let our circumstances control us and our outcomes or b) control our circumstances and decide not to settle for anything less. When given the choice, what would you choose?

Friends, the name’s Alyssa. I am 27 years old living with SMA type I, and I have spent most of my life learning how to take control of my circumstances despite any setbacks or obstacles that come in my path. I may be in a wheelchair, restricted to very limited mobility (I’m currently using just my index finger to type this!), and faced with more challenges than many of my peers, but I am never going to let SMA have the upper hand. Heather has done an incredible job bringing awareness to this disease and giving a glimpse of what life is like through a personal account, but now, she has asked that I share my own story with SMA. And I am more than happy to do so.

My story with SMA began in April 1991. I was just shy of turning 6 months old when my parents received the fateful news that their baby girl had a rare, genetic disease that was known as spinal muscular atrophy.

To be rather blunt, I was given an expiration date on that day. At the time of my diagnosis, knowledge on SMA was sparse. The internet was barely a thing. And, SMA wasn’t on the forefront of people’s minds. My fate was determined by two sentences in an old medical journal by a doctor who, unfortunately, had very little information readily available at his fingertips.

According to that journal, I wasn’t going to live past the age of two. I wasn’t going to grow up and conquer the world because of a genetic mutation in my DNA that would cause my muscles to weaken and fail. But, through the power of faith, love, and the mindset that I was going to be in control of my life, I have accomplished more in my 27 years on this earth than I could have ever imagined. I earned my bachelor's degree in marketing, founded a nonprofit organization that has raised hundreds of thousands of dollars for SMA, and I started a blog that chronicles my life with this disease. I even became the first adult to receive the first-ever treatment for SMA: Spinraza.

Here’s the thing, though. With every accomplishment first came a struggle. Living with SMA is not easy. It’s exhausting and defeating, and I can honestly tell you that some days are really hard. Some days, I do give into my exhaustion and accept defeat because, truthfully, I have no other choice when my body has been pushed beyond its (low) threshold. But, in that moment of struggle is where I always find my strength. It’s where the opportunity to take control of my life comes into play. It’s where I realize how I choose to handle my hardest days is what makes all the difference.

Whether it’s SMA, another illness, or simply the everyday trials and tribulations of life, I hope you remember that. I hope you remember that, at the end of the day, you are in control of your life. Because the moment you make that decision to not be constrained by your circumstances is the moment you can begin to live an abundant life.

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