Getting Out

July 17, 2006 at 10:51 am (Uncategorized)

This weekend I was finally feeling well enough to venture out of the house. After five weeks of pneumonia and neck injury, it was almost surreal to see the world again. Blinking in the bright sun just outside our front door, I felt like a prisoner freed from a dank cell after years of unjust confinement. First, we went to watch our babysitter Andrea sing in her band at a coffee shop. Then we went to three parties. Granted, two were kiddie birthday parties, but nevertheless, we were required to socialize and mingle with the adults. Even stranger, given my sartorial sense of late (let’s call it invalid chic) I wore shoes, as well as pants without an elastic waist. I even showered two days in a row.

The truth is, I felt a little scared to emerge from my den after so many weeks. For three weeks, I was stuck in bed with pneumonia. Although that whole experience was unpleasant, I had gotten accustomed to lying in bed, coughing, covered in a sheen of fever-induced sweat. I was used to dwelling on morbid, grumpy thoughts and riffling half-heartedly through books and magazines. As soon as I was able to get up and around, I was in a car accident. Back to bed, I went, and back to the familiar routine of pain and dark thoughts.

I read somewhere that patients who are mistakenly diagnosed as terminally ill, and who then later recover, often suffer from depression in the wake of their good news. Apparently, being sick became part of their identity. Once that piece of themselves was taken from them – and they were expected to jump back into health and happiness with a giant grin on their faces – they became confused and depressed because they felt as though they had lost of key part of who they were.

It sounds utterly bizarre. Who wouldn’t want a new lease on life? Who wouldn’t clamor for the chance to return to work, family, and a future? It makes some sense to me, though. I’ve only been chronically ill for a couple of years, but in this short time, my medical condition has threatened to redefine who I am. I have become accustomed to being sick. There are times when I forget about the self who is a writer, an athlete, a teacher, and an avid outdoorswoman, and become focused on the self who is a patient. I think this is natural. After all, having a chronic illness like sarcoidosis (especially since it has violated my heart) involves spending quite a lot of time, both directly and indirectly, with the disease. There are countless doctor’s appointments; there are the daily repercussions (both physical and emotional) of being sick; there are the pills to pop every morning and evening; there are my attempts to educate myself about the condition. I can go a couple of weeks without an appointment or without becoming sick with some secondary infection. It is wonderful to unwind into health for these respites. But, eventually, some aspect of the disease rears its head, and I am forced to remember it all.

I have a friend who suffers from two serious chronic medical conditions. From what I’ve heard, her level of denial makes mine look fit only for amateur night. She sees doctors only when she is falling apart, and doesn’t take very good care of herself in between these appointments. Her friends and family are concerned, and, because they love her and want her to be healthy and alive for as long as possible, nag her and want her to take her diseases more seriously. I understand her impulse, though. Once you cede an inch to illness, it threatens to claim ever greater pieces of you. Go the doctor one time and he’ll order five tests and send you to five specialists. Let dark thoughts of death and invalidism into your brain for just a few moments, and it seems as though they’ll set up a colony of negativity and doom.

I just finished reading The Shadow of the Sun, a fascinating collection of essays about Africa by Ryszard Kapuscinski, who was a correspondent on that continent for nearly thirty years. One topic the book addressed was the complete breakdown of civilization in Liberia. Since the country was settled by freed American slaves in the nineteenth century, you would think that ex-slaves would arrive on foreign shores and try to set up a utopia of equality and justice. Not so. The former slaves wanted nothing more than to reinstall the system they had just escaped – but with themselves at the top, not the bottom. Within months of landing, a few hundred ex-slaves had built plantations and enslaved thousands of native Africans. Even after slavery was eventually abolished in Liberia, the descendants of the former American slaves established an apartheid system long before South Africa did. According to Kapuscinski, however, this is not as strange as it seems as first glance. The Liberian settlers were victims of what he terms a slave mentality. They could not envision a world of freedom and equality. With this paucity of vision, they could only reorganize a terrible system, not revolutionize it.

Something in this narrative resonated for me. Being chronically ill puts you at risk of a “sickness mentality” that is every bit as insidious as the slave mentality Kapuscinski describes. Once you become enmeshed in this sickness mentality, you go from being a person who happens to be sick to a sick person. You dwell on every symptom, and research every possible angle of the disease. Being sick consumes nearly every bit of your mental landscape, as well as ravaging your body. I know what this feels like. It is terrible to live in this straitjacket of illness.

Finding balance between rashly ignoring my disease (and thus jeopardizing my life) and sliding into the lethal embrace of a sickness mentality is for me one of the hardest parts of having sarcoidosis. It’s all about balance and moderation, two things I have never been very good at. Now the stakes are a little higher than a bike race or a publication. Now, I feel like I am not only fighting for my life but for remaining who I am.

I am fortunate that I have Jay and Andrew to keep me on the path between these two cliffs of denial and over-dwelling. Jay pushes me to go to the gym, to teach writing classes, to do my own writing. He takes on extra work around the house so that I have fewer excuses not to do the things I love. Andrew has no space for my sickness. With him, I am just a Mom. As such, he expects me to read and play, go to the park, cook him dinner, dance with him, and tickle him in the bath. He knows who I am. And he won’t let me forget it.

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