Life, Love, Death & Disability in Russia B Y
O K S A N A
S M I T H
|
T R A N S L A T E D
B Y
J O H N
F R E E D M A N
W Artist and actor Oksana Smith lived in Moscow, Russia, with her parents, until they succumbed to COVID. Following is her story of the intersections between disability — she has significant cerebral palsy — illness, death and, ultimately, freedom in a nation that refuses to fully acknowledge any of these things.
36
NEW MOBILITY
hen my father fell ill, I did not understand the full consequences at first. I called for him from my room again and again. He sat in the kitchen and muttered endlessly, as though engaged in conversations with those no longer of this world. He could not get up from his chair. It was late at night, and I did not know yet that my life had collapsed. Mother woke up. She herself is seriously ill and she falls asleep all hours of the day. She measured father’s temperature — 102. I sat in my wheelchair all night long. Mother found the strength to pull father to bed, although he had lost all sense of space and was barely conscious. She did not have enough strength left to lift me into bed. It was already a bright morning on May 22 when the ambulance arrived. The medical personnel separated me from my wheelchair backrest and slipped the hoist holders under me so that mother could raise me up. Mother pushed my wheelchair aside and began to settle me into bed when we heard father’s quiet footsteps. He appeared in the frame of the door, illuminated by a ray of morning sun passing through the window. As if nothing had happened at all, he hurried forward to give mother a hand. Unbutton, lift, extricate, pull, wash, and tuck me in. His smile was filled with sunshine. It was the last time I saw my father alive. I lay in bed, and my head felt like it would explode. Through the haze of pain, I heard voices and steps. Someone walked heavily down the corridor and a loud, piercing woman’s voice — presumably directed at father — spoke as if to a 3-year-old.
