Thursday, 3 April 2014


Victory comes in unexpected places, especially when you are dealing with ALS. With a disease so pernicious and pervasive, you have to look at where you can win, and take those victories joyfully. Today I did something I have not done in over a year, not since I first went into the wheelchair last February. It's actually not one thing but a collection of things, a compendiate series of activities when seen as the whole are something that has not happened in a long time.

First, I got out of bed, something I do every day, still. Then I easily rolled into my bathroom through wheelchair width doors, not having to adjust legs or remove wheelchair feet or twist and contort. Once in, I had a shower, simply rolling up to the seat and transferring, without having to push and pull on the wheelchair, transfer to the toilet first then to the tub, swinging my dead legs up and over the edge.

My shower was lovely, warm and gentle. There was no need for me to hold the shower head in my hand as my new shower has multiple heads all pointing in the right places. I was able to use both hands to clean myself, able to sit and let the water fall over me, cleansing and falling away. I was able to use both hands to wash my hair, to grab the shampoo without letting go of a safety grip along the way. I was able to easily transfer back to my wheelchair once toweled off.

After as close as I can get to a normal shower, I rolled easily to my sink, right underneath it, facing it square on without having to twist sideways for access. I sat there and looked in my mirror, realizing how much I needed a shave and how long it had been since I had been able to do this at home, engage in the simple act of looking straight into my mirror without having to look upwards or sideways. I reached out and easily grabbed my toothbrush from the holder, toothpaste too, without having to stretch and bend. I brushed my teeth with a sink below me, not beside me or a foot away in front of me, no projectile expectoration required.

In short, I had as normal a start to my day as is possible given a wheelchair existence, a morning without impediment or obstruction. I had the dignity of something approaching normality, something offering a semblance of what others do without question each and every day. It has been more than a year getting here, and fully three months in the renovation process. This morning returned every penny of investment in these changes, every dollar of cost and every hour of time. This morning my victory was to feel something close to having a normal start to my day.

It makes me think I really should say "to hell with the money", and do my kitchen too.


  1. Thank God you had a normal day my dear. I am grateful for that. Life gives us lemons and it sure has done that with you but I am happy it gave you lemonade this morning. Love you Sweetie.

  2. If that's what you decide to do, Richard, know that I am happy to continue screwing and banging for you in the more-public rooms of your house, too ;)