The leaning tower of pillows

With his head resting on a tower of pillows placed on the dining room table, there he sat… slumped forward and tied into the wheelchair with as many bandages as I could find in the house, all in a desperate attempt to make him as comfortable as possible. This was the only way Doug could steal moments of sleep without falling from the wheelchair, laying down no longer an option due to the pain.

The ticking of the clock hurt my ears and filled the room with its constant reminder that although we were stuck in this moment, time and life somewhere was continuing on. The sound irritated me; how dare time move on without us.

I’d drawn the curtains across the huge bay window that framed the breath taking living art beyond. The living art my father called ‘a moving picture’. When undraped the view swept across the winding creek to the lush green river flats below, home to content livestock unaware of their contribution to the picturesque landscape.

The rise and fall of the charming foothills and glorious mountains were like breathing in visual contentment. They were hypnotic. It was scenery that held generations of family farming history; history that sadly and hauntingly would end with us.

The light of the new day was too much for our tired eyes to bear. So there we both sat in the darkness slumped over the table; one with pillows, one without. We were bewildered and exhausted. Soon my father would arrive to once again take our young son home for the day. We waited for him with as much anticipation as we waited for the hospital to call with a bed vacancy. Both would bring a sense of relief but only one had arms of love for me to fall into.

The anguish on my father’s face when he walked in and saw his mate in such a pathetic state was the face of tortured helplessness I’d not soon forget. I wondered if I looked the same.

It had been another night of endless seconds. Another night that we hoped time would fade to fragments of memory; never the case for me. Doug’s hips collapsing and disintegrating from the aggressiveness of his disease causing unbearable pain, he spent most of the night sitting beside me on the bed.

No longer able to lie down from the increasing agony, sitting upright bought him the most relief. Dosed up on as much pain killing medication as allowed he faded in and out of consciousness, collapsing for moments at a time due to either exhaustion, medication or the pain. I’m not sure which. Maybe it was all three.

Exhausted myself I had tied a bandage around his torso and then to my wrist so when he started to fall the pulling of his weight would wake me and I’d be alarmed to help cushion the slow motion falling. Towards day break I was startled by a loud thud as my arm jerked me upright into fuzzy alertness.

There, in a soul crushing heap against the wardrobe lay the bravest man I’d ever know. He was too exhausted and broken spirited to cry out in more pain. I fell down on my knees beside him and placed my hand on his shoulder babbling endless apologies through gut wrenching sobs for not waking in the nick of time. He simply said with a hint of humour, “Ya reckon you can get me up?”

Since then there have been many more sleepless nights for just as many more sleepless reasons. Each experience a chapter in our life we wish could be ripped out and discarded from existence. For me that will never be. Each volume is permanently scribed and held securely by the bindings of my memory; the lessons serving my stride and the tears aiding clarity of perception amidst deep despair.

There is only one quote that sums up our life living with Rheumatoid Arthritis:

“For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way. Something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.”

~Fr. Alfred D’Souza

The obstacles keep coming… Doug’s humour and determination are still larger than life all these years on from this obstacle in time.

Do you have a favorite quote that reflects your life?