Fibromyalgia is odd in the way it causes fits and starts of energy. Months of barely functioning and then, suddenly, a newfound ability to be in the world. The inevitable question is, how much hope do you hold out, or rather, how to do keep yourself from holding out hope when life is simply unpredictable?
To live successfully with a disability of this nature depends on cultivating a Zen mind. I repeat to myself many times a week, “everything is impermanent.” This cuts many ways. Zest for life will come and go. Strength and ability will wax and wane. The good times end, but so, inevitably, do the worst of times.
I also cultivate a combination of mushin and zanshin: being present in the world with a non-judgmental mind. Now, this in no way relates to the way I scroll Facebook or consider politics; I’m just not that Zen. But regarding the interaction between pain and functionality, I can be aware of my feelings without my thoughts spinning out of control. “At this moment, I am fatigued,” not, “I am so tired and I’m always tired and I’ll always be tired and I can’t accomplish anything and life is never enjoyable and nothing ever works out.”
I’m not perfect at this. Many times, with a new pain has come a certainty that I have a new permanent disability that is going to forever affect my life negatively or drastically. Time and experience help with that, and allow me to notice the experience with an open mind, focused only on the moment.
So, for now, I am studying Spanish, making Christmas cookies and lemon bars, applying for proofreading jobs in hopes of feeling useful for a few hours per week. And at some point, I’ll simply be in bed for days at a time, listening to books about the periodic table and Japanese history.
And that’s okay. Because it simply IS.