Tuesday, 26 November 2013

A Weird Kind Of Challenge

I bounce back and forth. I have always bounced back and forth, one day feeling like life is amazing and a few days later feeling like it was just wasn't worth the effort. Now, with ALS, that bounce is even more noticeable, more visible, not just to me but to those around me. Mostly I try to cover it up, try to put on a happy face and saccharine my way through the day. Even with all this, if it is not visible to others it is most certainly visible to me.

Today is the wrong side of the bounce, the sad perihelion of my emotional pendulum. Today I am asking myself "Why bother?" Before anyone freaks out, runs to the phone, hops on a bus or posts all kinds of sappy support statements, this is just another curve in the road of my life, and not even a sharp one at that. Everyone has down days; it's just that mine take on a much different, larger, more oppressive hue, richer in blue and black. I have a bloody good reason to be down.

Last night I was online chatting with another Person with ALS. We both agreed in wondering why we kept trying. If you look at it rationally, with no hope for a cure and not even a reasonable treatment, there is no good outcome to this disease and, by and large, a very poor quality of life as one goes through it. Day by day our lives are stolen from us, not as they are from others, in simple aging, but in an ever accelerating downhill slide into decrepitude. Our lives do not simply pass, they race past, leaving our dreams and hopes spinning in the dust like a license plate in a bad movie scene.

It's no wonder we ask the question, "Why bother?" In fact the most amazing thing is that we bother at all. It is the highest testament to the human spirit that those of us with this disease don't simply give up at the first opportunity. I know we all, or almost all, think about it daily, if not hourly, depending on our condition. I, along with many other PALs I talk to, constantly weigh the balance of our lives, wondering if we should continue, living with the pressure of death. Yet onward we go, unable to quench our desire to live and our hope for tomorrow.

I don't know why I bother. I just do. As my online friend said while describing a particularly difficult moment in his day, a day spent hacking up phlegm, unable to moving, trapped in his bed; "...tomorrow there be small beautiful moments, but I just wanted it over during that (difficult) stint... I have this feeling that I have to see it through to the end otherwise I would take myself out. I have no heaven or hell fears, but it feels like a challenge in a weird way."


  1. Im having a why bother day also, and I just wish people would just allow a body to just feel what we feel. It doesnt mean that we are going to go out and jump off a bridge or whatever.It just means that we are sharing our feelings with someone we trust.

    1. As I am sure you wish it for me, I wish for you a better day tomorrow.

  2. Freda and Rick, My thoughts are with you in this dreadful struggle and I wish you a well day every day even though it is not a possibility. . love to both of you.