“And then there’s a lecture by Cornell West, and a wonderful Tchaikovsky concert, and how about going to see Spunk at the Morton?” My friend’s breathless voice reels off the plethora of activities available in our college town this weekend.
I love my irrepressible friend, she of the bubbling enthusiasm and indefatigable energy. I hedge. I don’t know how to tell her I’m in no shape to do any of these things. I’ve been active lately, and she’s gotten used to it.
I would have loved to do all these things in my parallel life, the one I live in my imagination. In my parallel life, I not only volunteer at my son’s school, ride bikes with my son and my husband, go to concerts and plays, but I also have redecorated my house and give dinner parties “a plein aire”. I’ve managed to get my novels published and I travel around teaching. My husband and I vacation in Greece. I get up early, work out with my personal trainer, and go to bed late after earth-shaking sex with hubby. Well and often. I collect original art and sing jazz at local dives for fun on weekends. And oh, I just won an international tango contest and my photographs–just a hobby–hang in collections around the world….
In my actual life, I slowly and gingerly make my way into the day. If I’ve “overdone it” in some way–either physically or mentally–the day before, as I did yesterday and the day before, I am in pain and stiff from head to foot. If I’m lucky, I’m out of bed by eight. Usually not. If I haven’t rested my still recovering broken back, the twinges of pain become adamant sledgehammers by three in the afternoon. My personal trainer is my dog, Maisie, and on good days we take a half hour walk. On bad days, like today, I struggle for fifteen minutes, the air in my lungs like knives, and flinging myself on the couch as soon as we return. I then sort out the tasks that have to be done–teaching preps, doctors visits, the endless filing of claims–from the goals I’d like to get done–work on novel, finish essay–and I try to get the first done so that I can get to the latter. Some days it is a personal victory to merely get the bed made, the dishes put away, the exercises done and maybe an hour at my desk before brain fog or pain make it impossible. Sometimes my despair at the necessary smallness of my life overwhelms me. On good days I have the energy left over to see friends, to go to a movie, to a party. And when I’m there, I look and act “normal” and nobody thinks of me as sick.
No one has any idea of the careful husbanding of energy it has taken to have that moment. I even fool myself. Then, like Cinderella, the clock strikes and I am back in my rags and ashes.
Probably one of the least understood aspects of chronic illness is how it shapes or distorts one’s identity, especially one’s social identity. We are social animals, after all. My need to connect with the world, to be part of a social matrix, is just as strong as in a person who is not sick. But I cannot physically keep up a “normal” level of interaction. And I know I confuse people with my popping up and fading-out routines.
So, the question is, how to satisfy the desire to connect with the need to withdraw?
Hillary Mantel, who won this years Booker Prize for “Wolf Hall,” says she became a writer because of illness. One thinks of Keats, writing poetry as he is dying of TB, of Virginia Wolf”s essay, “On Being Ill,” of John Donne’s Devotions Upon Emergent Occasions, his meditations on health, illness, and suffering, of D.H. Lawrence. Forced by their health to withdraw from the active world, they nevertheless were passionately engaged, sounding the depths of their own experiences and sending the world dispatches. Writing, they refused to be obliterated as personalities by illness, refused to let illness define them, even as they reported, like journalists at the front, on the losses illness entailed.
When I was in sixth grade, I wanted to be Brenda Starr, the star-eyed, red-headed reporter . I remember how avid my twelve-year-old self was for experience of the world. We spent a summer in Mexico and I remember thinking that I wanted to travel the world as a journalist or work in the UN. That girl lives on. She’s just sending dispatches from a very different place.