How SMA is teaching me the art of being present

When appointments and procedures are overwhelming, I tune into the now

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by Alyssa Silva |

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For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a full-time job — one that I didn’t sign up for, but still face with strength and determination. Though I’ve grown used to this lifestyle, the physical and emotional energy required to show up and tend to my SMA can be exhausting.

Last month, I felt the reality of my exhaustion. In addition to having my feeding tube changed every 10 days and other miscellaneous appointments, I also had a lumbar puncture for my Spinraza (nusinersen) injection. Though the procedure went smoothly, my body needed a few extra days to recover. Following the stress from the lumbar puncture and the subsequent recovery, my acid reflux persisted for a couple of days.

While grappling with my gastrointestinal problems, I faced an additional challenge: getting my feeding tube changed. I knew the procedure would be difficult with an angry stomach, but I had no choice. I begrudgingly went to have a new tube placed. Overwhelmed and burnt out from the chaos, I just wanted to curl up under a blanket, free from appointments, and zone out to the sound of “The Real Housewives of Beverly Hills.” (Sometimes I have to watch trashy television to feel better about myself, OK?)

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When I share stories like these, it’s not for concern or pity. They’re simply part of my life. I have to do what’s best for my body. I talk about these hurdles to illustrate how they’ve taught me profound lessons.

And lately, I’ve been learning the art of being present.

Living in the moment while living with SMA

My influx of appointments and procedures last month wasn’t a fluke; it’s happened before and will happen again. The stress and sense of being overwhelmed that come from my reality can feel all-consuming at times. Though I know it’s natural to have these feelings, I also know they can rob me of the joy that exists in the present. Understanding this dynamic has made me more conscious about how I choose to respond to each day.

As I’ve adopted this mindset of presence in my life, I’ve noticed a shift. If I have family over, nothing else matters at that moment. If I’m out with a friend, I’m fully immersed in the conversation we’re having and not worrying about upcoming medical challenges. If I’m having a quiet day at home, I’m relishing in the slowness of the moment. I’m grounding myself in the present. I’m focusing on one day at a time.

The negative or unwanted feelings will inevitably come, but I’m learning there’s a time and place for them now. They no longer have the upper hand to take over my life.

The other day, I looked at what’s coming up on my calendar for February. To no surprise, I have another flurry of appointments during the first half of the month. I immediately rolled my eyes and felt dread heavy on my chest.

Then I caught myself, looked around the room, and took in my surroundings. I was home, ready to get my workday started and excited about the iced coffee waiting for me in the refrigerator. There was nothing to worry about in the present moment. So I chose to focus my energy there. I chose to embrace the day with joy and intentionality instead.

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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