Just like every year, I spent the last few days of 2018 and the first few days of 2019 reflecting on life; specifically, what my life has looked like until this point and what I want it to look like going forward. It seems like every couple of months, I get on a life-design kick, where I latch onto a single point of change and chug tirelessly for a month or so until, without warning, I fall back on old habits.
Last January, I wrote about New Year’s resolutions, and how my 2018 to-do list included acceptance of my health. I’m happy to report that for the first time in years, I feel all right with my body. I still get fatigued. I take exactly 5 mL of amoxicillin every day to keep from breaking out into painful cystic acne, and if I skip my biweekly massage, I pay for it in headaches.
But I’m at a point where I no longer feel like I’m dying. Honestly, there were times this past year that I felt with complete certainty that I would not make it to 2019. Overdramatic? Absolutely. The result of illness anxiety disorder? Probably. But that kind of fear only makes this moment, me in my reading glasses on Jan. 2, a little bit magical.
With last year under my belt, I’m looking ahead to 2019. I have a laundry list of habits I want to manifest — reading, writing, meditating — but overall, my “life design” for 2019 is broad, abstract, and a little more poetic than usual.
Last night, I was talking with one of my best friends about a Dungeon & Dragons web series she’s been trying to get me into. She described the “Dungeon Master” as a philosopher king. Plato described such a king as “a ruler who possesses both a love of knowledge, as well as intelligence, reliability, and a willingness to live a simple life.” My friend went on to say something about telling good stories and making your friends happy, and my first thought was yes. Like all good things, it sparked something in me, and I’ve been meditating on the term ever since.
On the way home from my vacation at Myrtle Beach, I filled out Aileen Xu’s “2019 Artist of Life Workbook.” It was a commitment, because after a week of hardcore vacationing, all I wanted to do was listen to Rihanna and obsess over Catherynne Valente’s “Deathless.” But it was worth it because it got me thinking about the things that bring me to life. What do I want to do more of in 2019? As I filled out the workbook, the answer became painfully clear: spend time with the people I love and be a light in their lives. Sounds a little bit like a philosopher king, doesn’t it?
Many things come to mind when I think of a philosopher king. Sitting in my library with my best friends, playing D&D, and harmonizing to “Hamilton.” Watching “Lord of the Rings” with my parents on New Year’s Eve and tearing up at Frodo’s goodbye speech: “You cannot always be torn in two. You will have to be one and whole, for many years. You have so much to enjoy and to be, and to do.”
Today, I had an interview with the National Alliance on Mental Illness in the hopes of starting a support group. It was in a bland, vaguely smelly office building, but the minute I stepped inside I felt like I belonged, at home with these people who work so tirelessly for community wellness.
My mom is an avid seashell collector, so we spent much of our vacation on the beach. The sand was a little soft, so my dad had to give me a push now and then to get me through a drift. On our last day there, the winds were incredible, practically gale-force by the time we gave up and returned to the resort. Since then, I’ve been shaking sand out of my wheelchair motors.
For some reason, when I think of a philosopher king, I’m reminded of the beach, wind whipping around us, my dad behind me, my mom stopping every few feet to peer at a shell. Going up against a gale-force wind is kind of like living with illness — it’s hard and exhausting and you get dirt everywhere. But when you’re in good company, it becomes a little less terrifying. With the right people, even the most complicated thing becomes simple. And that’s the kind of energy I’m bringing into 2019.
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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