CONTINUED FROM PAGE 7
CONTINUED FROM PAGE 9
Sitting there in that moment, I tried hard to recall my dreams, to remember what I had wanted to be before life happened. But I found no traces in my mind. The more I searched the corners of my mind, the more I encountered empty black spaces. And I was afraid, both startled and afraid, because I had not been so fully conscious of John W. Fountain is the founder and the extent to which my hope president of WestSide Press Books, a professor of journalism at Roosevelt and dreams had dissipated University in Chicago and an awarduntil right then. Dead was winning columnist for the Chicago the childhood dream of Sun-Times. becoming a lawyer. So was the dream of someday buying my mother a home, of someday buying one for myself. It was as if life itself had been sucked out of me and, along with it, every dream I ever had. Maybe it should not have been a surprise. For without the antagonism of dreams, there was no nagging reminder of what I might have become, of how far off course my ship had drifted. You can’t stop dreaming or you start to die. Grandmother’s words jarred me like smelling salts. Or you start to die… In the hours and days that followed, Grandmother’s words churned inside. And for the first time in a long time, I began to think seriously about what I might like to become someday, about the places I might like to go, about the kinds of possibilities that made me giddy just to think about. I gave myself permission to climb aboard the dream boat of my imagination, to take a temporary excursion from my island of constraint, poverty, and circumstance without feeling like I had to plot out the course or determine whether the journey was even feasible. It took some soul-searching. But eventually I found my dreams, lying like sunken treasure at the bottom of the sea of my subconscious, deep inside my heart. I wasn’t sure where those dreams would take me or how far. I still could not afford to buy shoes for my children, their toes bunched and half corned. My own shoes still had holes in the soles. My only suit was still so worn that the lining inside the jacket had withered. I still had no job and no prospects. We still had no car, no life insurance, no kitchen curtains, no checking account, and not even a single dime of savings. But I had found hope. At least I had hope. The Well Magazine / Winter 2012
Living with Lupus
A big challenge was being weaned from the respirator and breathing on my own. When I was off the respirator I felt like I was breathing through a straw. When I was finally weaned from the respirator, I was unable to walk or talk and had to complete three weeks of intensive therapy (occupational, physical, and speech) as an inpatient. There were also months of inhome and outpatient therapy. Today I am grateful for every day that I am still alive and am able to take care of myself. As I lay in the bed during my hospitalization, I knew that even if I tried to call the nurses before the aide reached me, they would probably ignore my call. I could only whisper and most times the nurses would forget that fact and think that someone was just playing with the call button. I knew the aide took my blood pressure and gave me medication at 6:30 every morning, so I waited and prayed that I could hold out until she arrived. Although the nurses couldn’t hear me, I knew God could. My mother always taught us to be grateful, no matter what your circumstance. She taught me to look at what I could do about it. You do what you can and leave the rest to God. He will put things around you that will give you what you need. If you die, you die. There’s an eternity after death. So it’s still alright. But I decided that I was just not going to lie down and let lupus take me over. Thanks to God, my husband, daughters, family, friends, doctors, and hospital and rehabilitation staff, I survived a life and death situation. I awake each day being thankful that even though I have painful and sore joints and find it difficult to walk sometimes, even though my voice is raspy and I am not able to sing like I used to, even though I still have a mild cough, even though I fatigue easily, even though I forget or may not fully understand things at times, even though I second-guess most things I do, even though I have to take lots of medications, I am still alive and learning to live well with lupus. For more information about lupus, go to The Lupus Foundation of America, www.lupus.org 28 A retired educator, Kay Mimms is a passionate advocate for lupus awareness and research. She is writing a memoir about her experience with lupus.