I am imprisoned in the downstairs of my house. The downstairs consists of a living room and kitchen. No bathroom. The living room is cut in half by a long child gate. My 5-year-old son gets the half with the TV, sofa, and big windows. I remember snuggling on that sofa with him, watching movies together, looking at books, playing iPod games, making phonecalls, or just giggling and being silly. Now that I cannot walk, I have no access to my son’s side. The little office chair I scoot around in cannot get thru the opening in the gate. My side of the room is cluttered with my electric bed, computer, humidifiers, fax machine, suction, cough assist, nebulizer… the ugly equipment of this heavy existence… none of it child-proof.
I scoot my chair up to the gate, hang my head over the bars, and hope he will come over and hug me. He rarely does. I try to schedule time for the aide to bring him to me and sit him on my lap. But there is little time. Why does it take all damn day for the aide to take care of me? Sponge baths in the kitchen are laborious, but 2+ hours is ridiculous. It seems my days are merely a job and I am just the subject of that job. I’m a limp product, being lifted, positioned, dressed, pottied, wiped, fed, undressed, washed, dressed, fed, pottied, wiped, fed, pottied, wiped, fed, lubed, oiled, maintained, but never driven. I start up every day, but go nowhere. I see the sunshine only thru windows. I am never taken outside. It’s too much work.
I am 90% maintenance, 10% human, and find myself asking, “What kind of life is this?”
-kara