Saturday, 17 January 2015


It's been a long day, a tiring day, an educational day. First of all, let me say that my road trip to Palm Springs is definitely not happening. It is a shattered as a wine glass dropped on a ballroom floor. It is a broken dream, never more to be awakened, an incomplete passage from a sonata unfinished. I ain't going south; that's that.

Right now I am sitting, safe and protected, at my own table in my apartment, aided and supported by those who care about me, ensured of comfort and compassion by the people who make a difference in my life on a daily basis. In other words, my family, those who love me and are a part of my life, stepped up and helped me when my travel plans fell to pieces.

It all started this morning, early, far too early for me. It all started when my brother Jim simply insisted that I meed his schedule, meet his demands for time and timing. What he didn't understand is that ALS has a mind of its own, that my body simply cannot understand demands for performance. I just cannot get up and go, instantly, or even close to instantly. My body demands its own schedule, its own timing, its own plan for get up and go. When Jim came face to face with ALS, he said "I don't want to do this. Can we go home now?" I said "Yes".

I am continually surprised by those who call themselves my family, but their inability to see on a daily basis what this disease does to me. Those who are with me on a regular basis, those who see me from day to day, from week to week, have seen the loss of ability, the struggle with normalcy. Those who share my life on a regular basis see the exhaustion, the slide into incapability, the diminishment. They understand, they care, they know what it is to see me fall from the heights of what I was into the depths of what I am.

My family is those who care for me, those who attend to me, those who support me both emotionally and financially. My family are those people who are there when I need them, answering the call, forgiving the emotions and frustrations and anger and tears. My family is those who are around me in this time of my life when I most need them. My family are those who love me, forgive me, support me. I have a family, not those connected by genetics, but those connected by care. For this, I am grateful.


  1. WOW!!! I have no words! Well actually have many, but best left unsaid. I sure you wake up some day, faced with the reality of this fn disease, and say" I dont want to do this anymore. Can I just go home? Luv ya bud!

  2. Probably made for an awkward ride back.