No Bathroom, Almost

I just washed my hair in the kitchen sink; try that from a wheelchair, it's a messy business. My bathroom is in the midst of renovations and all I have in there these days is a toilet. Soon even that will disappear as we move into the process of putting in a new floor, a raised toilet with a washing system, wheelchair accessible shower and sink. Of course all of this is driven by my life in a wheelchair, and all of that is driven by the depredations of ALS.

Living rough doesn't bother me all that much; I've spent plenty of time on a small boat or in a hunting camp. Not having all the parts of my bathroom working is not a big deal. There is a toilet and for that I am grateful. I have a kitchen sink for morning cleansing and all day hand washing. When the toilet goes, I will still have my ever present urination jug for the few days that the toilet is missing, and, when needed, I can always head across to the mall where they have a wheelchair bathroom.

What does bother me is that I have to do this at all. These renovations are another example of the hidden costs of ALS. There are no government grants for this, or at least none that I qualify for. I made too much money last year and am therefore not sufficiently poor so as to need government assistance. The pace of ALS is sufficiently fast that it taken my legs in less than a couple of years and will take the rest of me soon enough. Most subsidy and other government programs are designed for longer term illnesses. PALS die at a prodigious rate, usually in less than a handful of years from diagnosis, so we just go too soon. At least I get to some sort of tax deductibility for the costs as I am now registered with the government as being disabled.

Nevertheless, I need these changes and will take the money out of my ever dwindling savings. It's a choice I made, to try to live as comfortably as I can for as long as I can on what money I have. It's a choice I made, to make a home where a wheelchair fits. I could have chosen to move; there were apartments that were somewhat wheelchair ready, mostly in seniors care facilities, but would still have needed some renovations. I could have gone into one of those hospitalized care homes where I could sit around simply waiting to die. Instead I choose to live as much as I can, for as long as I can.

There is an upside to this. My brother Jim is doing a large part of the work for me, driving down from Edmonton, a three hour drive, spending much of his week here and then going home for weekends. Here he labours, tearing down and putting up walls, taking away the rubble, working with sub-trades, and eventually he will even do the painting and trimming. All of this he does as a gift to me. I am fortunate to have him, and appreciate all that he is doing for me. And I get to see my brother; that's even better.