Let’s imagine you and I are enjoying a delicious cup of coffee right now. Around us are people engrossed in their laptops, slugging down every ounce of caffeine, just to survive the workday. Old friends, new friends, and best friends sit and mingle on their lunch breaks or while their children are at school, just to escape reality for a while with a cup of joe between the palms of their hands.
Then, there’s us. From across the table, you’re gently sipping your piping hot cafe mocha while I’m guzzling down my cappuccino with a giant straw that probably wasn’t meant to be used in this pretty, little mug. Next to us, someone is blatantly staring at me over their laptop screen as my personal care assistant feeds me a gourmet doughnut. And, behind us, my service dog is casually trying to cozy up to a person not inconspicuously dropping crumbs for her. (I may be physically disabled and unable to turn around, but I still have eyes in the back of my head.)
Whether we’re in a local Starbucks or your favorite little cafe in town, it’s just you and me, catching up like old friends do. We’re enjoying each other’s company. We’re filling each other in about our lives, swapping stories and making memories. We’re simply caught up in the moment, losing track of time. That’s what I want you to think of when you’re reading this column, because that’s what I think of when I’m writing to you.
I’m so excited that you and I are going to be meeting here on a weekly basis. And, I’m even more excited to start sharing stories about my life with you, so allow me to formally introduce myself while the coffee cools.
I’m Alyssa, and it’s a pleasure to meet you. At six months, I was diagnosed with spinal muscular atrophy (SMA) type I and given two months to live. At the time of my diagnosis, not much was known about SMA. Computers weren’t available to the average family, smartphones weren’t at our fingertips and doctors just simply didn’t know all the facts. My family was told to wait for the dreaded inevitable, but that inevitable never came. So, today, I live to tell my story.
I’m currently 26 and living with my parents and two dogs. I’m a sister to the most remarkable guy I know, a sister-in-law to a remarkable girl who completes that remarkable guy, and a proud auntie to the cutest little man. In 2013, I graduated from college with a business degree, started a part-time social media job, and founded my own nonprofit organization called Working On Walking a year later. Somewhere amid the chaos, I also decided to start a blog that showcased the personal side of living with a disability. Now, I’m here to fill you in on everything in between.
My life isn’t easy, and I’m sure we’ll come across that in conversation from time to time. But that’s OK. Easy never really brought a good story to the table, you know? Despite the daily challenges and struggles that come with a disease such as SMA, I’m a firm believer that life is what you make of it. This is the message I always try to convey in my blog and apply to my everyday life, the same message that my parents instilled in me at a young age.
Regardless of what we experience, the path we choose to travel will determine the life we lead. The choice is ultimately ours to make, but when in doubt, we just need to remember to take life one cup (of coffee) at a time.
All right, enough about me! Tell me a little bit about yourself in the comments below!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.