TO TABLE OF CONTENTS
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, itís time to get dressed and
prepare for the day." Never mind that the day will almost certainly be spent in
bed; if itís morning, itís 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 Iím ready
to go. Hypothetically, Iím 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: theyíre all dressed. Nobodyís wearing pajamas and
few people are barefooted. When Iím dressed Iím involved with them. I live
vicariously through them. To steal a line from Jack Kerouac, I am prepared "Ö to
get up in the morning to walk proudly on the sidewalks of life"Ö at least in
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 Ö or my shoes.