Finding my strength in situations that feel beyond my control
Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of myself, my body has its own agenda.
Lately, this feeling has been weighing heavily on my mind. Ever since I (mostly) lost the ability to swallow and had to rely on a nasojejunal (NJ) tube for nutrition, I’ve felt my tight grip of bodily control slip away. The thought of my quality of life being dependent on a skinny little tube is enough to keep me awake at night. What’s worse is that in the past six months, this tube has been giving me more problems than I like to admit.
Every 10 days, I have to get my feeding tube changed, which I find a daunting process. Though we don’t know why, my tube has started to clog more frequently than ever.
When the tube is clogged, we have to start from scratch. Using a fluoroscopy machine, a doctor threads a tube aimlessly into my body. There’s a lot of poking around, pain, and often bleeding involved with the procedure this way. And because of my scoliosis and complex anatomy, the procedure is incredibly complicated and taxing on my body.
I thus get my tube changed before I reach that point, so the procedure will be easier on me and my doctor. In this case, a wire is threaded under fluoroscopy through the fairly clean tube in my body and into my intestines, where the tube’s tip resides. From there, that old tube is carefully pulled out, leaving the wire as a path for the new tube to travel. Though that may sound straightforward, nothing is as easy as it seems.
There are complications with every procedure. But my biggest fear is aspiration (which has already happened to me twice during the process). With a tube change, I never know what’s to come. The uncertainty of that, coupled with my inability to control the outcome, causes me anxiety.
From complications to progress
Recently, I went in for my procedure and felt my anxiety hit as soon as I entered the room. When that happened, my breaths became erratic — unbeknownst to me. My mom had to remind me to steady my breathing. The doctor agreed and, to my surprise, said I had an important role during this process, too.
As it turned out, for every slow and steady breath I took, he threaded the tube deeper into my body. It was a sort of synchronicity, if you will. We had to work in tandem to have the best possible scenario. And that was the moment I learned my small but fighting lungs do help control the outcome.
The procedure that day has forever changed my outlook moving forward. Yes, I’ll have instances when I can’t control the situations I face. But even when my control seemingly slips away, I have a powerful ally within me: my lungs. Breath by breath, they remind me that while I may not have autonomy over every circumstance, the strength I need to press forward is found between my surrender and my resilience.
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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