When Will The Music Stop?

Truth in Barstow, CA The upsides to having ALS are few,  however I do enjoy them and make the most of it. Some of these are; being part of a tribe of ALS warriors, having the privilege of helping others navigate the journey, whisking through airports and other establishments, learning how much I am loved and how many people in my world have big hearts and are not afraid of expressing themselves. The downsides of having ALS; everything else! My mind is fully aware that my body is crumbling and turning into  fossil  dust. For 20+ years I would wake up and pray and promise myself that I would stay sober just for today. I have added a few more prayers and promises to that morning ritual. I pray for the willingness to be inspirational,  positive and a badass influence to my fellow ALS'ers, no matter what. The idea of being of service to my fellow sufferers makes that morning decision, a non decision. Mari wore flips to mitigate height differential. That's amoré. My wife i...

Misha Louy (February 6, 1981 - September 11, 2021) I am very excited to be back at it. I needed a bit of a hiatus, or so I thought. As it often does, shit just doesn't go as planned. Somehow, I feel busy as always, partly due to the fact that I just don't move along as nimbly as in my previous carnation, pre-ALS. I had planned to keep on writing, but five weeks later and I didn't exactly have a wealth of material produced. However, I did write a very personal and solemn piece that I couldn't fathom I would ever be called upon to write in my lifetime. More about that in the next paragraph. As for me, I'm feeling pretty okay these days, however the symptoms of my disease continue to slowly decline and cause me much heartache, frustration and physical pain. In fact, I'm writing the first two paragraphs and the closing paragraph with my eyes on my kooky EyeGaze technology. Go figure, I'm grateful and resentful at the same time. Some days I still can't believ...