It always happens. I had a terrific day yesterday, exhausting and long, but exciting and filled with adventure. Now, today, I am having the downside bounce, struggling with clothing, intimate bodily functions failing me at critical moments, pain in my arms and hands. It's all of a piece, this process, where one day up leads to another day down. It always happens.
This morning I was watching Katherine put on her sandals. She's purchased this cute little pair of woven slip-ons, multi-coloured with a soft rubber sole. They are tiny, as is she, barely large enough for half of one of my foot, thin slippers into which not even my toes would go. They fit her perfectly.
As I was wondering at her, seeing her standing up as she slipped them on, I watched her wiggle her toes into the fore part then scrunch her toes to pull the soles backwards towards her heel. With a delicate balance and grace, she lightly bent down to pull the fabric over her heel, then stood up again to admire the result. She did the same, with the same process, for her other foot, lifting her heel and turning her foot to confirm both fit and form. She approved, moving on to her next task.
I followed this process intently, realizing how little I could do of this. I can no longer wiggle my toes into my shoes, nor wiggle them once in. If my toes go in folded, they stay folded for many hours until gravity and movement finally does its work. Some days I go for the whole of it with curled toes inside of unforgiving shoes. I can no longer scrunch up to adjust foot placement or adjustment. I have to do that from the outside, using my arms and hands to adjust the shoe around my foot instead. I can no longer slide my heel into the shoe; I must pull the shoe over my heel, folding the soft edges at the back of my shoes inwards in the process, a fold which has now become permanent in the one pair of running shoes I wear all the time.
As she moved onto her other tasks, naturally accepting that her body would do the things needed, I sat in my wheelchair, shoeless, wondering, I will have to put on shoes. It will be an ugly process, with much demanded of my arms to compensate for my useless feet. I watched her pick up, pack, get ready, load the luggage trolley, all those things where my help is pointless and small, where my body is no longer able.
I get really tired of this nonsense. It's sad and depressing, even here in South Florida. I may leave, but ALS never leaves me. I just wish I could put on shoes like a normal person.
The blog was posted originally on March 31, 2015.
About the Author
Born in Victoria, British Columbia, far too long ago to make a difference here, Richard McBride was, up until recently, a lifelong resident of the Vancouver and Fraser Valley region of Canada's most western province. McBride has had the joy of a very diverse career ranging from his first career as a stockbroker to training consultant and technology consultant to project manager.
Major changes in his life before his diagnosis of ALS meant his relocation to Calgary, Alberta, Canada. It was there that he received the diagnosis in November 2012. McBride continues to share his life and experiences both through his blog titled Richard is Living with ALS and through a tremendous group of friends, support specialists, and most importantly, with his four children and three grandchildren, with a fourth on the way.