I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure. To kill time and unwind together, we used to hop in my van, get on the highway, and just go — without a road map or end destination. He and I were just two kids aimlessly cruising down the highway before one of us would yell, “Let’s take this exit!”
We’d randomly shout out lefts and rights until we could officially claim we were lost. We’d never reach for our phones’ navigational guide regardless of where we were. And whether we found ourselves in a quaint little beach town or in the thick of the woods, out of state and far from home, we’d always love the thrill of being a little lost. That was the beauty of the game. We never really knew where we would end up. But it never stopped us from playing.
I think life with SMA is, in many ways, like that. Don’t you think? We’re all a little lost (OK, sometimes very lost) on this journey. So many days are filled with unexpected wrong turns, where we are unsure of the direction in which we are headed. Sudden illnesses or feelings of overall defeat are a couple of the unexpected roadblocks that show up and prevent us from moving forward.
I’ve always said living with SMA is like living with one big question mark. It’s like aimlessly driving on a long and winding road, and you’re a little uncertain about what lies around the bend. So often I get asked the question of what I foresee my future to be like, and the truth is I don’t know. I shudder when someone asks me what my five-year plan is because I can’t imagine planning that far out. SMA and I have two very different plans for my future, and while I’d like to stick my fingers in my ears and yell “Lalalalala!” to what SMA has in store, I also have to recognize it and be prepared if I want to overcome it. I also can’t lift my fingers to my ears, so there’s that.
This morning, I woke up with a long list of to-dos, and I already feel weak. I’ve only been up for two hours and have already asked my mom to massage the arm I write with several times, hoping to wake up my muscles. These are the kind of question marks I’m talking about. I didn’t plan for this. I wasn’t expecting my body to feel weaker than normal today. But it is. And instead of focusing on the future and how I’m going to map out a way to accomplish the goals I set for myself, I remember the importance of soaking in every moment.
Because when it comes to doing this whole life thing, road maps don’t exist. You’ll get a little lost and you’ll navigate through some valleys while hitting some unavoidable bumps along the way, but that’s the stuff you’ll look back on. That’s the stuff that will mold and shape you for the beautiful destinations that lie ahead.
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.