Chronic illness felt like a sentence to mediocrity. This wasn’t entirely rational; there are so many examples in our society of people who have been absolutely exceptional despite their illness. Stephen Hawking comes to mind. But that doesn’t change the fact that this is how I felt when I was sick. How could I excel? How could I pursue my dreams?
As a teenager, I was determined to be exceptional. I had this notion that nothing could be worse than just pursuing a “normal” life – getting a job, getting married, having kids. I wanted to do something really fantastic, and I imagined and hoped that I would “make it” as a creative person, through writing. My ideas about what is mediocre and what is exceptional have changed over the years, as one might expect of a person who has left adolescence behind. But I first became ill when I was just twenty; Illness entered my life and squashed these youthful visions of greatness with a few stomps of her hard-heeled foot.
At first, my attitude was that this thing wasn’t going to stop me. And Illness laughed, and ratcheted up the symptoms until I could hardly get out of bed much less leave the house. And I tried to be positive – I thought, I guess I don’t have to go to work anymore and I have this laptop so I should look on the bright side: I have all the time in the world to write. And I did write, here and there, in between trips to the bathroom and falling back to sleep. But I felt so terribly mediocre, and my writing was flat, lifeless. The energy to make stuff up was difficult to come by. And increasingly I thought it would just be wonderful if I could go on a hike with my husband, or have children, or have a meaningful job. It would be exceptional just to leave my house and interact with people. It would be exceptional to skip down the street like a child and laugh for the joy of it.
My body felt like a prison; it was my shackles, it was my ball and chain. I longed for disembodiment. I fantasized about moving through my lifeworld as a floating head; I identified with my mind exclusively. And as disease and anemia and painkillers dulled my mind, I sometimes felt like a disembodied Observer, my consciousness floating from fictional pasts to fictional futures – escaping from the Now that was so unpleasant – taking forays into imaginative landscapes, or stopovers in TV-land.
It is ironic to me that in having permanent ileostomy surgery, something I thought for so long would be an intolerable alteration to my body, I have come to love my body again. This body is my house, and having surgery allowed me to engage in a long-overdue spring cleaning. I have opened the windows and swept out the dust.
My sense of what it means to do something fantastic is no longer tied up with some artificial idea of success – I am doing something fantastic when I go backcountry camping, or when I sit here at my favorite coffee shop like I am right now, writing this blog. I do sometimes skip down the street, just for the joy of feeling my body move, uninhibited. I want to be in the Here and Now again, not because I feel stuck here due to the vicissitudes of chronic illness, but because Here and Now is wonderful. And I do not feel mediocre. Mediocrity is not about what I do or do not accomplish; it is a mindset. I have a new mindset now. I am no longer divided against myself; my mind, my body, and my spirit are all in this adventure of life together. And that is an exceptional feeling.
