Saturday, 19 April 2014

Starting The Day

I just got up. Well, I didn't really just get up; I finally made it from my bed to my laptop. This is not a short journey. The process of awakening, sitting up, going pee, getting on my compression "tubigrip" socks, getting dressed, and getting into my wheelchair can take as much as an hour on a "normal" morning. If I rush things, I can be up and about in as little as a half hour. Some mornings, like this morning, the process takes even longer as I struggle against the strange combination of the desire to continue to sleep and the recognition that getting out of bed is very important.

It is a major step in living, to be up and about, active. Although I know there will come a day when getting out of bed will be impossible unaided, my hope is that, even in the worst of this disease, I will still have the resources and help I need to get up and about each day. I do not want to be stuck in bed; it's just not who I am.

On the other hand, getting up is no sweet treat either. In my bedroom, the closet has large mirrored doors. Each night, as I struggle to get undressed and into bed, I need to rest during the process. As I sit on the edge of my bed, I get the unappealing view of my failing body staring back at me from those mirrored doors. I can see the swelling in my feet, the loss of muscle in my legs, the over-sized belly. I gaze and ask myself the inevitable question. I ask, "What the hell happened to my life?"

Then I remind myself that, all things considered, I have a good life. I travel, I have a vibrant social life, I am rarely, if ever, alone, constantly surrounded by friends, family and care givers. "My body has failed me", I say to myself, "but I am not just my body. I am a whole person, with a life, regardless of where it is headed." I try to find the good things, and desperately try not to feel sorry for myself. Some days it's easier than others.

Unfortunately I get to repeat this process in the mornings, seeing my failed body first thing in the day, hearing myself puff and struggle as I get dressed. I rest in the process, look in the mirror, and once again the conversation inside my head begins. It's not the best way to start a day.


  1. Rick is there any help availability for you from the ALS society or the health system.
    love you

  2. I have Home Care but I don't yet want someone coming in each morning to tell me when to get out of bed, then dressing me. I can still do it on my own. It just takes a while.