The other day I found myself daydreaming on the way home from yet another hospital appointment. The monotony of the ride was all too familiar to me. This time, however, my spirit felt a little more crushed than usual and my energy lower.
If the walls of that examination room could talk, they’d tell a story of a girl who visited often. They’d recount the pleas and the desperation from that girl and her family members, only to have a doctor discuss ambiguous results and order further tests. They’d whisper about that girl who remained a mystery in her own unique way.
Last week, I left that room with a knot in the pit of my stomach. That feeling, sadly, has become a familiar one to me in the past year. This time, I was tired, emotionally and physically. Although I was grateful for the appointment because it reminded me of the extraordinary team of doctors I have and how they refuse to give up on me, I felt just as lost leaving the appointment as when I’d first entered the room.
I don’t feel at liberty to discuss what’s going on, because I simply don’t know. However, I can tell you this: Whatever I’m experiencing has absolutely nothing to do with SMA.
Let me see a show of hands if you feel as though SMA is a full-time job. If I could raise mine, it’d be as high as my little hand could extend. Throw a year of mysterious health issues into the mix, and I’ve got myself a perfect storm.
On the ride home that afternoon, I started creating storylines about the passers-by in the neighborhoods we drove through; it’s something I tend to do when I let my mind drift.
I watched an older gentleman get his mail. I imagined that his wife and grandchildren were waiting for him to come back inside so they could head out to the swing set in the backyard. Each line on his face held a story of love and loss, but none of them had to do with SMA.
I watched a little girl step off the bus and run to her mother. I imagined she’d go inside to do her homework quickly so that afterward her mother would let her run around with the children next door. Respiratory treatments, tube feedings, and suctioning wouldn’t be a part of her day, because SMA would never be a part of her world.
I got home that day and let myself have a good cry. If only I didn’t have SMA, I thought. Maybe then I would have the energy and strength to deal with my mysterious symptoms. Maybe then things could become a little easier for me.
A few days later, I returned to the hospital for more tests. My results came back normal, which was reassuring, but still left unanswered questions. However, feeling relieved, I decided to grab a cup of magic (some call this coffee) from the cafeteria. While waiting for the elevator, I looked up and saw tiles on the ceiling, painted by former child patients at the hospital. Right above my head was a colorful painting from a girl named Riley. She wrote:
“Never give up on hope, and hope will never give up on you.”
“Hope.” That four-letter word has carried me 27 trips around the sun and played a pivotal role in my life. It has kept my head above water all these years. It has been a driving force in my life. And, I realized then that I’d let it slip away in recent months.
So, while I waited for the elevator, I took a deep breath and fixed my eyes on those words. Then, on the ride home, I daydreamed about a tenacious little girl named Riley. I didn’t have to create my own storyline this time, because I knew that with her simple piece of artwork she had touched many lives.
And, I am proof of that.
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.