When I was diagnosed with lupus, I knew my life would dramatically change and everything would get harder. But I never imagined how hard "harder" would actually be.
A recent statistic from the Lupus Foundation says that only 31 percent of adults with lupus work full time. Within the lupus community, I am in the minority.
I'm a full-time pianist. Between performing, accompanying, teaching, and long hours of practicing, my life is busy. Lupus has kept me from performing and working as much as I would like, but I beat the odds every time I do.
It's a lot of work to beat the odds. Most people who see me, even those I work with closely, have no idea what kind of pain I'm experiencing that day. There are some mornings when I wake up and ask my husband to help me get out of bed because my body is too stiff for me to do it myself. There are some days when independence isn't an option. I have to budget meticulously--not just time and money--things like energy and joint usage. There are some evenings when I'm so exhausted that I crash on the couch and take a nap so I have the strength to brush my teeth and go to bed. One fulfilling day of work can mean a week of pain and fatigue.
For me, beating the odds means not letting my body and how I feel at any given moment have the final say for my destiny. It means everyday trusting God to help me face another day full of impossibilities. Beating the odds is hard. Really hard.
I confess that I'm not a superhero, but maybe that's ok. Maybe that's not what the world needs. Maybe the world needs people who, even though they're struggling, can be thankful for every good day. People who use the strength they have, even if it's not much, to live for something great and meaningful. People who, despite all the darkness in the world, can still live with faith, hope, and love, and leave a path for others to do the same. Maybe I like not being a superhero after all.
You're certainly a hero to me <3
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