I could write this post every day. The more I live with ALS the more people I know who are also living with it and, sadly, the more I know who are dieing from it. This morning one of my young facebook friends posted that it's been a year since her grandfather passed away from ALS. At the time of his death I wrote the below piece. I wasn't yet blogging, but thought this might be a good post for today. Thanks, Kelsey, for the reminder!
"Thursday, May 17, 2012
Well, the phone call you know is coming but you don't want it to brought us the news: "Yogi died this morning at about 4 a.m." It was my wife's brother on the other end. He and many of the people he runs around with were friends of Yogi's. Yogi (Gene) had a lot of friends and family. PALS (Persons With ALS) often find out just how many as they take the journey this ugly disease maps out - albeit a bit fuzzy since none of our maps seem to be the same. We are told that early on but the more we meet and share with one another the more profoundly we come to realize its truth. Yogi was diagnosed about the same time I was in the fall of 2010. He's gone and while I'm certainly worse than I was then, I'm nowhere near death.
Yogi was a great guy - deeply loved by many. His family and friends wanted to make sure he knew that. Our relationship was primarily that we shared the journey of this dreaded disease, were both from Putnam county, enjoyed our athletics, and had family and friends who knew one another, knew what we had in common and kept us informed of one another's condition. People want to do something when they learn you have ALS - anything to be helpful, to let you know they care and are willing to be part of the team fighting this ridiculously life-altering disease with no known cure or cause. Granddaughters rally high school student councils to help raise funds; nieces, sisters, and sons and daughters order t-shirts and send emails to others to raise funds and gather people together with the hope that numbers will overwhelm the dastardly disease or at least challenge it's position; high school baseball coaches propose that a scheduled league game be used as an awareness building event and to celebrate the lives of two men from their respective communities; spouses organize benefits and rallies and slowly take on more and more of the day-to-day care of us - sometimes while still holding down jobs or/and caring for children - and generally reorient their lives around our needs/wants/realities.
Yes, one of the fraternity/sorority whose only membership requirement is that you are a PALS has lost the physical fight. His body no longer must hope that research will come up with a quick cure, must strain to accomplish the simplest of tasks, must have an active mind trapped inside it. But the battle will still be waged, Yogi, in your memory and honor, by those who remain who loved you and those of us who share your condition and fight."
And it will be waged in memory and honor of so many others!
Blessings and peace friends!
Bill
I am reading this while sitting in dad's hospital room. He was doing well at home until he developed double pneumonia with a blood clot and two abscesses in his lungs. He has improved enough that we will be taking him home tomorrow with Hospice.
ReplyDeleteYour timing on the three part Waiting for Death was timely for me. Keep writing; your messages are valuable.