[BobbyB]

This young man who touched my life --- Tribute to Brainhell
What if they discovered a disease and nobody wanted it?


Before I even started this blog I was a medblog reader and somehow I came across the blog of Brainhell, a young man with a young family and the same age as my son. His logo is above.

He had been dealing with the terrible disease of Amyotrophic Lateral Sclerosis, or ALS, since January 2004. His blog was the story of that journey, from diagnosis, to searching for a cure, to acceptance. Every day he wrote about his life and interacted with the group who were his online family. I was privileged to become part of this family. Every morning, first thing after signing on to the computer, I checked his blog. Mostly I was a lurker but sometimes I commented and I treasure the few emails that BH and I exchanged.

This intelligent young man, a very good writer, did not suffer fools gladly. He held strong opinions and made them clear to everyone and no doubt they were well thought out. Throughout this journey Brainhell was always his own man. He hated the use of the words confined or bound to a wheelchair, which of course he became. He used a wheelchair and I have never said those two words since, when speaking of someone in a wheelchair.

Reading along with this young man's journey always made me feel very humble, for he dealt with this terrible disease with grace and his strong spirit never wavered. He had not been able to speak for quite a while and communicated via computer or message board. His last post on his blog was a message of love to his wife and two young children just over a week ago.

Last night Brainhell died and his sister posted this on his blog. The end of this journey we had shared with him had come to an end.

BH guarded his privacy and the privacy of his family zealously. But he left as a parting gift for his readers a photo of himself and some last words.



ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!

Peace be with you Brainhell and thank you for sharing your journey with me. I will miss you but I will never forget you.



Posted by jmb at 9:57 AM

http://nobodyimportant-jmb.blogspot....d-my-life.html

[BobbyB]

http://brainhell.blogspot.com/