Wednesday, February 13, 2008

The March

It's been a little over the past three years since I officially joined the ranks of the PALS. (That stands for People with ALS.) It has been a revealing journey, that's for sure. The steady drum beat of those that drop off the active list gets to one's deepest soul. My world has been expanded by the internet to include an increasing family of PALS. We share our fears, some of the hard lessons learned, the frustration with the decades without a single drug to significantly extend life or slow progression. Above all we come to share the march of those losing the battle.
I suppose it must be similar for many disease communities, but, for me being a PALS has been tough. My courage, tolerance, stamina have not been my long suits. Not a good mix of deficiencies when faced with not only your own terminal illness but that of so many fine people that have come into my life, my fellow PALS, their families, and the wonderful dedicated people working with the local ALS Association and MDA organizations.

I have lost many new friends, PALS who have the courage, tolerance and stamina that I admire and is missing in my own life. This week I lost a friend who I never met. I read his marvelous narratives of living with ALS. His skill with words and expressions were stand outs, ALS or whatever he put pen to paper or finger to keyboard to memorialize. He had another skill and tool that was so powerful, that of being a professional videographer. He used this avenue to share his journey and his philosophy of his life with ALS. He gave a face of this disease to the thousands of readers of his newspaper columns and viewers of his videos. In both cases he opened his deepest thoughts and shared them with the public and those of us in his boat with this disease, where his words reflected our own thoughts and fears.

I will miss Leo Greene for his contributions to all of us. He was no saint, his son put that in context in his comment on Leo's last article, but few of us are. He did have the courage and rare talent to give a life, blood and guts to ALS that I did not find but in very rare instances. Leo and I had a great dialog via email and his last response, a long one, a bright one, was dated the day of his death.

I hate this march, the continuous loss of friends, friends who have far more to contribute than many. So, I say my little personal thanks to this talented man and I wish him nothing but peace on the journey that he now is on.


Anonymous said...

Leo's Story is the biography that examined every facet of ALS. His candid assays of the toll the disease was taking on his body were answered by his words, pictures and videos. He describes a new spiritual awareness, increased concern for the needs of those around him - mostly family - and the desire to pass on his skills and life lessons for all of us to follow.

"Having a notion of when the end might come allows time to prepare, to adjust priorities,"
Leo wrote in a column published over a year ago.

"Spiritual knowledge can be found in an awareness of the life around us."

When we feel troubled and searching for answers, maybe the answer awaits us at "Leo's Story."

Leo Greene you'll be missed.

Sleepy said...

Leo Greene was an incredibly gifted writer. He always had a moment to reply to an email. He always had a moment to be a support to his PALS peers online. Leo also used his talent to spread the word about the outrageous Lou Gehrig's Disease that was stealing his physical vitality (but clearly not his mental). Leo was a gift to all those who had the privilege of reading his words.

Google "Leo Greene" and look at the web references and the news references. He was an amazing man.