Monday, 8 April 2013


I am in Louisiana, sitting in a chair in my brother's living room, tears rolling down my face as I read the emails of support and kindness from those I work with at the CBE. They are helping me with my campaign to raise money for ALS research. I am touched more deeply than words can say by their kindness and a generousity beyond my comprehension.

What I hope they know is that they are doing more than just that. I have struggled over the last months with how my life would end, how it would move towards its inevitable conclusion. I have wondered about meaning in my life, the loss of my marriage, the impact on my children and so many other things. Yet underneath it all was a deep abiding sense that I had lost my worth, the limited value I had in my life.

These people are uplifting me, showing me that my life meant something and that they cared that I came along, cared that I was part of their life, cared that I existed as a part of their experience. I am a man on death row, encaged by the damage of this pernicious pestilence, slowly suffering the destruction of my body until it ultimately fails me completely. I am a prisoner locked inside the iron bars of weakness, each day losing incrementally more and more.

The simple act of joining my team, of making a donation, of saying "I care" has an incredible impact on my spirit. I am uplifted, strengthened in spirit, not by the donation but by the act. Something so simple, yet so powerful; something so easy yet so important. It says "I care".

You see, I didn't realize this effort would have this impact on me. I thought I was just another project. After all, I am a Project Manager. Emotionally it is becoming more and more about redemption, release from the prison of ALS. My body may never leave this jail but my heart and spirit become freer every day.

In my brother's house I am cared for, not just by him and his wife but by each of the people who reaches out to me in kindness, who demonstrates that compassion which means so much to me.

1 comment:

  1. That's so lovely! What a great thing to be so openly cared for and supported. ~Kate