I believe I am still me. I believe not all happy lives have to look the same. I believe I can still contribute. I believe the lessons illness and disability give can be more valuable than the things they take away.
I was a vibrantly healthy young woman who loved school, work, hiking, studying, traveling, and just about everything else. I tried everything, did everything, could handle everything. Then I got sick.
I got sick the week after my twentieth birthday. This summer, I celebrated my twenty-seventh birthday. I am still sick.
I have ME, or Chronic Fatigue Immune Dysfunction Syndrome. That this illness is often invisible and always controversial is one of its most severe symptoms. I call it in the invisible disability.
Unlike acute short-term illness, which hits the “pause” button on life for awhile, or terminal illness, which permanently alters expectations and responsibilities, chronic illness is something that changes some things but not others, something that can’t be predicted, something you learn to live with. It takes years to understand what you can do, and what you can’t. It takes years to learn how to be a different person, even as you determine to hang onto the person you were. Being chronically ill is like driving a car or speaking a foreign language. Nobody is good at it at first. It takes time. It takes practice.
The new me can’t work even a part time traditional job—a five-month attempt to work nine hours a week at my old job ended in a year-long relapse. But the new me is someone who can write, sitting at home in my pajamas with frequent breaks, and can publish what I write. The new me couldn’t attend college normally, since one semester of commuting to two classes on Tuesdays and Thursdays was a disaster that took a year to recover from. But the new me graduated with honors two years ago, thanks to an elaborate strategy that combined online classes and equivalency exams. The new me can’t stay out late, or do most things that last more than half a day, or drive more than an hour on a good day, or survive without doing nothing at least as many days most weeks as doing something, or stand up very long, or always find the words I’m looking for. But the new me has had to learn how to choose priorities and to focus on what really matters. The new me is often discouraged and guilty about not contributing more. But as a Christian, the new me is learning that God is more interested in who I become than in what I do.
The new me often lets me down. The new me can’t do most of the things I think she should. And she can’t ever go away and leave me alone, even for a minute. But she can continue to teach me that life is not about what we do, but about what we learn, what we experience, and what we choose. She can help me understand that “the good life” doesn’t have to look the same for everybody.
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