Wednesday, 28 September 2016

My Fight

I've had to change my underwear twice today; once this morning while in bed, finishing the process several hours later, and just a few minutes ago after using the toilet. There were no disasters, just the usual nonsense that happens when you spend all of your time either laying down or sitting. Try farting when you are in a wheelchair, unable to lift a butt cheek, uncertain as to whether the candidate is a solid mass or just some gas. I have to change underwear; this process is tough enough with paralysis in my lower body. It becomes immensely challenging when you add a heavy cast and broken ankle into the process.

Several people have suggested I "go commando", an expression for not wearing underwear at all. This further implies a lack of pants, so the real suggestion is that I go bare-ass naked, sitting in my wheelchair. Actually I am compelled to do this for some periods of time regardless, as the effort in doffing my shorts is enough to make me need a rest. The effort of getting the new ones on is equally substantial, so I am in no hurry to complete the matching end to this two part process.

There are underwear out there which might be easier, things like EasyUndies. I am becoming more and more willing to accept the realities of my clothing needs, and these may become part of that reality soon. Not yet. I am still fighting to dress and act as if nothing is wrong with me. My only concessions to this damnable disease so far are the wheelchairs and commode chair. Oh, and the lift systems. Oh, and the grab handles. Okay, there are a lot of concessions to this damnable disease; I just hate to see or admit them.

People talk about fighting ALS. Actually there is really very little fight you can do against this disease. The real fight is trying to find a way to live with purpose while maintaining as much of your dignity as possible. I've lost a lot of personal modesty in these last few years with so many home care workers and medical professionals seeing me in various states of undress or incapacitation. These days I am forced to ask my HCA's to help me make sure my ass is clean; I am at the point where I can only mostly wipe my own ass; there's that last little bit I cannot seem to reach these days.

You see, that's the dignity thing. That's my fight, the fight to maintain a sense of self inside of a body which is clearly not up to the task. I fight to maintain my inner will to live, looking for a reason for my continued existence when I know perfectly well there is none. I fight to see myself as a self-sustaining man, all evidence to the contrary. I fight to find the humour, the irony, the idiocy of what this disease has done to my life, and then laugh at it. I fight to sustain, maintain, and retain my humanity. That's my fight, not against ALS, but against all other odds.


  1. I SO love your posts. Can relate to everything you say, I'm just a little "behind" you! (Pun intended) I don't know whether it's worse being a guy or girl in the ALS bathroom/what to wear department! Gonna check out easy undies.

  2. It's about commanding normalcy. Trying to act like nothing has really changed or it's just temporary. I still believe in the temporary theory, you never know if it is not "really" ALS. I believe in the exception, too.

    EasyUndies are tidy. And so easy! I like them.

  3. Hello Richard,
    My husband has ALS :( We purchased a portable bidet and he says it is the best thing we have done so far. It continues to give him independence in the washroom. Let me know if you would like more info. Thanks for the posts.