That’s the dining room chair where I spent so many hours, typing, drilling inward, scanning the web for news of a miracle cure. It’s where I sat and stared through the sliding glass doors, watching the crows and the hawks glide over the valley just beyond our back yard wall.
Every morning when I awoke I texted Terri so she could crank up my oxygen. I needed the extra O2 in order to be able to make it to the dining room table. The ritual was to walk from the bedroom into the main living area to establish that I was still alive, before we headed back into the bedroom for the morning’s bathroom ablutions. This involved the chair on the left.
It’s made of sharp, blue plastic, and is ideally sized for a five-year old- fitting, given that my needs had devolved into those of a child.
Every morning I would stand at the bathroom sink, lean on the corner, and wash as best I could. After a few seconds I would collapse into the little blue chair, gasping. Terri would calm me until my sensibilities returned. Then I would grip the counter, yank myself up, and wash some more. The once automatic activities of simple living now took forever, and always required help.
This chair doubled as my shower chair. Terri would help me sit inside the glass shower stall, hand me the shower wand, and then leave the door open just enough so as not to pinch the tubing that ran from my nostrils to the oxygen machine. I would slowly wave the wand over my body, wrapping myself in a cocoon of water spray. Eyes closed, I would sit and daydream in the rain. Pre-disease, fantasies were about feeding the world’s poor, achieving global peace – that sort of thing. Now all I dreamt about was breathing again. Selfish, I know.
Back to the dining room chair. The waffly looking thing on the seat is in fact called a waffle pillow. It is specially designed to prevent sore butt, a common side effect of having a disease that makes you thin, weak and prone to sitting for long periods of time. God bless the waffle pillow. It was a butt saver.
Then there’s chair #3, the wheel chair. I will never forget the day we received our handicapped parking tag, something I never thought about ever needing. As it dangled from the rear view mirror, I thought, “This is a public declaration of helplessness- I need to beat this disease.”
The contrarian in me didn’t want to use the handicapped privilege until after the transplant, when I didn’t need it anymore. Terri, ever virtuous, would have none of it. “You can walk, so we shouldn’t use this.” In fact, she was just repeating my own litany. I had insisted on not relying on it because it made me weak. But, there was this one time…
We were making the rounds in a vast parking lot looking for an open space. The only spots left were light years away from our destination, except for one lone parking place reserved for the disabled near the front door. It was a hot day. Sun blazing mercilessly. The air was dead quiet, except for the heat waves that rose up like steam from the parking lot. No way I was hiking a blacktop desert if I didn’t have to. In my defense, I was still pretty weak. I was only 6 weeks post transplant. And my sneakers were worn out.
I dangled the handicap sticker in front of her. “This is for all the times I should have used it and didn’t.” Reluctantly, she pulled into the handicapped spot. We slogged thirty feet through the heat until we made it inside where we were overwhelmed by a blast of air conditioning. Aaah, that’s livin’.
‘Here I am showing no respect for the system,’ I thought. ‘I really must be recovering.’
— pics: chairs by me; waffle pillow found at: http://www.quikshipmedical.com/ehob-pre-inflated-waffle-cushion-218wci