Sunday, 4 September 2016

I Can't Give A Shit

I've been struggling these last few days. I can see it in my blog posts and feel it in my general demeanour. However as I look at those posts and think about the things which have upset me, I realize that what is bothering my on the surface is not what is bothering me in reality. My friend Mike once said that I go into a depression every time I get a major new piece of equipment, most likely because it reminds me once again of my progression. He's right.

So it's time to face it, time to say it publicly, time to deal with another new reality, although not yet a "fait d'accompli". I no longer have the muscle strength to get on and off my toilet, or more precisely, off my toilet. I can still get on, but getting off has become, or will soon become, impossible. My arms simply cannot move my body up off the seat and over onto the chair. I'm not even strong enough to do it as a slide or push, not in one movement, nor two, nor ten. It's just not there.

I do have my commode chair these days, the chair I got when I realized how difficult and tiring it was to make the multiple transfers when I needed a shower. First I would transfer from my bed to my wheelchair, then from the chair to the toilet, then back from the toilet to the chair, then from the chair to the shower bench, then from the shower bench back to the chair, and finally from the wheelchair back onto the bed. Six transfers to start my day. With the commode chair, there are but two. So I can use the commode chair, yes.

The reason I don't like using the commode chair on days when I don't have a shower is that the commode chair makes it more difficult for me to wash my rear. I'm never really sure how clean it is. The toilet, however, has the bidet spray. If I use the toilet with spray seat, I get very clean in my nether regions. For someone in a wheelchair, this is tremendously important.

There is a joke in all of this, of course. I now can no longer give a shit, unassisted. If I want to give a shit, someone has to help me. Hmmmmm. On the other hand this has very serious implications for travel. I can no longer go or stay somewhere, such as in a hotel or at my Mom and Ray's place, unless I have help. In short, solo travel is now extremely unlikely, unless I take my commode chair on the road with me. I am losing all vestiges of my independence, and most of my dignity along with it.

I am working on a solution to this, however interim it may be. Ultimately I will lose all ability with my arms; not quickly, but eventually. In the meantime, I have re-purposed one of my heavy plastic cutting boards into a short transfer board. For some period of time, I don't know how long, this may, and only possibly may, allow me to make the transfer. I tried it this morning; it was not easy. It was, however, workable, for now.

This is perhaps the toughest thing. Every time I face a new loss, every time I face a new challenge, every time I face a new difficulty, I must learn a new way to do something which everyone not in a position like mine takes for granted. Next time you give a shit, think of what it must be like to need help, not just with getting up and down, but with cleaning your own ass. That's where ALS is taking me. That's a pretty good reason to be upset.


  1. When my sister had cancer and needed help with every aspect of her life. The one thing she Saddened her the most was having her family keep her clean. It did not bother us at all, but it felt like she had lost the last part of her dignity and privacy of her body. When your body is failing on you it sucks big time...

  2. I am so sad to hear this my dearest. i so wish we lived closer so we could help you. Can you get any medical assistance from the government?