Learning to find joy in the most unexpected places
Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice.
My nasojejunal feeding tube requires me to go to the interventional radiology department every 10 days to get my tube exchanged. Though it isn’t a lengthy procedure, it always causes me undue anxiety and stress. I realize I bring these feelings upon myself, but a tube is being threaded into my intestines. It’s an invasive procedure.
Severe scoliosis also causes my anatomy to be positioned differently, which adds an extra layer of complication to everything.
Fortunately, I’ve undergone many seamless procedures despite these obstacles. Unfortunately, I tend to hyperfocus on the few challenging ones I’ve had.
On this particular day, I was ruminating in my thoughts and thinking about all that could go wrong. While I knew I had to have the procedure, my thoughts were in a dark place, so I let them run amok for a while. However, my perspective surprisingly changed when I was greeted by a woman who entered the room and exclaimed, “Oh, my God, Alyssa! I have been waiting to talk to you all day!”
Making space
Going to the hospital every 10 days has allowed me to get to know the staff, which in a strange way is comforting. I’ve built a deep level of trust with them and started to feel less like a patient and more like a friend.
I mirrored the woman’s excitement. That’s when she told me she wanted to talk about the budding romance between pop star Taylor Swift and NFL player Travis Kelce — a topic she and I know too much about. We ended up bonding until the doctor came.
I left the appointment realizing that, despite how I’m typically feeling, there is also joy in going to the hospital. Most days, I forget to see it that way. Although I know my anxious feelings are valid, I also know I need to be more willing to find that joy.
This is something I have been accustomed to my entire life. Living with SMA has given me more challenges in the short amount of time I’ve spent on this earth than many people experience in a lifetime. In learning how to navigate through such difficult times, I have also learned the importance of making space for joy as well. This isn’t because I want to pretend everything is fine or I think a positive attitude will wash my worries away. I wish it were that easy. It’s simply because I know I deserve it.
I’ve had too many dark moments in my life to deprive myself of joy. In fact, it’s how I strike a balance and pull myself out of the deepest and darkest trenches, knowing there is something better ahead. The challenge is learning how to see it that way. After all, if I’m going to allow my anxiety and stress to take control every now and then, it’s only fair that I let joy take a turn, too.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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