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Winter 2004 

Preparedness
By Liz Burlingame

I pull on my shoes and tie them tight.

When I first became sick with CFIDS, I could scarcely believe what was happening to me. For the first time in my life I was totally debilitated, forced to stay in bed, quit school and ultimately resign from my job. The nausea, headaches and overwhelming exhaustion kept me in bed for days and even weeks at a time. Despite my obvious ill health, some corner of my brain kept believing I was not sick. It was this autopilot segment of my thinking that kept saying, "When you wake up in the morning, it’s time to get dressed and prepare for the day." Never mind that the day will almost certainly be spent in bed; if it’s morning, it’s time to get up. So on my worst days, it is not at all uncommon for me to get dressed (often lying down) and pull on my shoes.

My thinking is that there exists the possibility, however remote, that I might recover (even spontaneously) at any given moment. And if I should spontaneously recover (it could happen), my shoes are tied and I’m ready to go. Hypothetically, I’m prepared to walk directly outdoors with not a moment wasted. My ambition far outweighs my abilities.

I keep my bedroom window open so that when I emerge turtle-like from beneath my pillow, I can hear the bustle of humanity in the distance. I hear the cacophony of activity and dream of getting out of bed, shirking off this maddening disease and rushing back into living. I picture masses of people going about their daily lives and the one commonality I see in each and every person is this: they’re all dressed. Nobody’s wearing pajamas and few people are barefooted. When I’m dressed I’m involved with them. I live vicariously through them. To steal a line from Jack Kerouac, I am prepared "… to get up in the morning to walk proudly on the sidewalks of life"… at least in theory.

The downside is that I have spent entire days nestled under blankets with my head on the pillow, fully clothed with my shoes tied. I should confess that in 12 years I do not recall a single day in which this scheme has panned out. However I am unwilling to scrap the routine while the possibility for recovery still exists. I might yet completely recover, and I am most unwilling to relinquish that fact … or my shoes.