New life experiences are welcomed when you’re a columnist. I’ve already written about notable stories from my past, and I generally don’t enjoy sharing my two cents on current events. I don’t want to beat a dead horse, or perhaps more accurately, beat Dr. Phil with a reusable metal straw.
Believe it or not, my recent case of pneumonia, which I detailed in my last column, is the only occurrence in recent months that I deemed worth writing about. I realized, however, that this in itself is a worthwhile topic: the monotony of my life.
This is one of the most brutal aspects of living with SMA. First and foremost, it manifests in relation to my location. I’ve lived in the same area of the same city for my entire life. I’m often told that Bend, Oregon, is one of the most desirable places in the world to live, but I long for a change of scenery. I want to see different roads, trees, and buildings, and most importantly, a different Starbucks.
Even if someone didn’t have the option of moving, they could probably take a trip — something I am rarely able to do because I can’t fly, and even driving and staying in hotels is a big undertaking. I get to go to Portland a few times a year and to Disneyland once every several years, neither of which do much to scratch my itch for a change of scenery. Beyond that, my family takes turns going on vacations and staying home with me, which is unbelievably frustrating.
This monotony also extends to the people I interact with. I’d like to increase the radius of my social circle — both friends and caregivers. I want to be abundantly clear: I couldn’t ask for a better set of friends and family. I love them all dearly, and they take tremendous care of me. However, I would imagine that spending every single day of your life with the same two or three people would be enough to burn most people out. Not only do I spend each day with the same people, but I’m also physically dependent on them, which only compounds the burnout.
The heart of the issue is this: I’m a 23-year-old man who wants to live his own life, but so often I feel like I’m stuck living the life of those around me. For me, life simply feels stale. Someday, I hope to have the means to achieve the refreshing change I so desire. I believe it’ll happen eventually, but until then, I’ll continue to remember that, in the end, I live in a beautiful place with fantastic people. Life could be a lot worse.
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.
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