My friend and fellow blogger brainhell passed away this week after a long and courageous battle with amyotrophic lateral sclerosis. He is now free from the confines of his withered body and his soul can be at peace.
I first met BH about two and half years ago, after his diagnosis but while he still owned his life. I found him extremely clever and smart. He took it upon himself to read medical journals and be his own advocate for the health care he received. I loved his blog because you never knew what you were going to find there, but it was always captivating. Shortly after he quit his job to stay home and enjoy his family, he had so much time and energy to be mischievous. I recall one post where he described getting junk mail, cutting up music CDs he didn't want and shoving them in the return envelopes of the junk mail and sending them back. He had a fantastic sense of humor about himself and was a terrible flirt with the ladies. We often called his place BH's harem. Once he posted a picture of his torso to make a point about losing muscle mass and covered his nipples with hot pink stars. I think one of the women was still giving him a hard time about that pretty recently. I always felt flattered that he was so bright but would often email me with scientific questions. He even asked me for some of my journal articles and a copy of my master's thesis. He then admitted he didn't get very far and I didn't blame him.
One of the things I will always be grateful for is that he helped plant the idea for doing TNR on my feral kitties. I needed the extra push from local animal groups, but he followed their story and strongly advocated spaying and neutering programs. Towards the end when he had stopped visiting other people's blogs and just read his own, I sometimes updated him on the kitties, and told him they all had him to thank for their health and new quality of life.
When I started reading BH, he had a small community of blogger friends much like me: smart, nerdy, liberal, silly. Then as his illness progressed, his blog understandably became more and more about ALS. He then steadily amassed a huge following of ALS suffers and caregivers as well as health care professionals and everyday people filled with compassion who stumbled upon his story and returned day after day. I always felt bad, but I started to back off after that. Rather than commenting everyday, I commented less because rather than speaking to a small group of people who's names and opinions I was familiar with I was suddenly a drop in a bigger bucket and I felt too intimidated to speak. Once, Kurt Schilling even stopped by to say keep fighting the good fight. Brainy thought it was me who told Kurt about his blog but it wasn't. It was another one of the core readers who was with brainy early on. But brainy, I never stopped reading and I think you knew that. Once in awhile I would comment simply to say thinking of you. Hoping you are comfortable.
There were a lot of people on BH's blog this week. He left his farewell post a week ago (it has received 189 comments so far) and after that his friend in real life started his own blog to keep BH's readers updated. His family updated BH's blog on Saturday tell us BH had passed. They also posted a picture of BH's face for the very first time and he is as handsome as I had always pictured him in my mind. Since then there have been a slew of people linking their own tributes to BH and what his blog meant to them. I'm too embarrassed to do that. But what his blog meant to me was that it is possible to look death in the face with strength and courage . He never once changed his convictions, his personality or his sense of humor. And he was honest about his fears, his regrets, his physical condition, his moods and discomfort. I deeply admire this honesty and he left as a legacy a heartbreaking but very real account of what it is like to die of ALS. Despite the tremendous sadness this brings, I think it will be invaluable to the ALS community. He also touched so very many lives and the hole he left in the blogosphere can already be felt.
Brainy, now that you are gone, I have a confession to make. You made the assumption once that because I am smart I am good at chess. I am not. You challenged your blog friends once to play chess against you online and singled me out as someone you would like to play. I never told you that I didn't play with you because I knew you'd kick my ass.
It's been fun being your blog friend, BH. I'll never ever forget you.
I first met BH about two and half years ago, after his diagnosis but while he still owned his life. I found him extremely clever and smart. He took it upon himself to read medical journals and be his own advocate for the health care he received. I loved his blog because you never knew what you were going to find there, but it was always captivating. Shortly after he quit his job to stay home and enjoy his family, he had so much time and energy to be mischievous. I recall one post where he described getting junk mail, cutting up music CDs he didn't want and shoving them in the return envelopes of the junk mail and sending them back. He had a fantastic sense of humor about himself and was a terrible flirt with the ladies. We often called his place BH's harem. Once he posted a picture of his torso to make a point about losing muscle mass and covered his nipples with hot pink stars. I think one of the women was still giving him a hard time about that pretty recently. I always felt flattered that he was so bright but would often email me with scientific questions. He even asked me for some of my journal articles and a copy of my master's thesis. He then admitted he didn't get very far and I didn't blame him.
One of the things I will always be grateful for is that he helped plant the idea for doing TNR on my feral kitties. I needed the extra push from local animal groups, but he followed their story and strongly advocated spaying and neutering programs. Towards the end when he had stopped visiting other people's blogs and just read his own, I sometimes updated him on the kitties, and told him they all had him to thank for their health and new quality of life.
When I started reading BH, he had a small community of blogger friends much like me: smart, nerdy, liberal, silly. Then as his illness progressed, his blog understandably became more and more about ALS. He then steadily amassed a huge following of ALS suffers and caregivers as well as health care professionals and everyday people filled with compassion who stumbled upon his story and returned day after day. I always felt bad, but I started to back off after that. Rather than commenting everyday, I commented less because rather than speaking to a small group of people who's names and opinions I was familiar with I was suddenly a drop in a bigger bucket and I felt too intimidated to speak. Once, Kurt Schilling even stopped by to say keep fighting the good fight. Brainy thought it was me who told Kurt about his blog but it wasn't. It was another one of the core readers who was with brainy early on. But brainy, I never stopped reading and I think you knew that. Once in awhile I would comment simply to say thinking of you. Hoping you are comfortable.
There were a lot of people on BH's blog this week. He left his farewell post a week ago (it has received 189 comments so far) and after that his friend in real life started his own blog to keep BH's readers updated. His family updated BH's blog on Saturday tell us BH had passed. They also posted a picture of BH's face for the very first time and he is as handsome as I had always pictured him in my mind. Since then there have been a slew of people linking their own tributes to BH and what his blog meant to them. I'm too embarrassed to do that. But what his blog meant to me was that it is possible to look death in the face with strength and courage . He never once changed his convictions, his personality or his sense of humor. And he was honest about his fears, his regrets, his physical condition, his moods and discomfort. I deeply admire this honesty and he left as a legacy a heartbreaking but very real account of what it is like to die of ALS. Despite the tremendous sadness this brings, I think it will be invaluable to the ALS community. He also touched so very many lives and the hole he left in the blogosphere can already be felt.
Brainy, now that you are gone, I have a confession to make. You made the assumption once that because I am smart I am good at chess. I am not. You challenged your blog friends once to play chess against you online and singled me out as someone you would like to play. I never told you that I didn't play with you because I knew you'd kick my ass.
It's been fun being your blog friend, BH. I'll never ever forget you.
11 comments:
Aw crap. Sending loads of hugs your way Babe...
You write a beautiful eulogy, you know that? I never read this guy's blog, but after reading your post, I feel like I knew him through your words. Hope he's somewhere reading your post, knowing he was very well respected by you and apparently a whole lot of others.
I hadn't read BH in a little while. I'm sorry. I'll be thinking about his family, friends and fellow bloggers during this time. He was an amazing man.
BH was one of the first blogs I read when I started blogging. I hadn't read him for a while but remember his diaries and the courage he displayed. May he rest in peace.
I started reading BH because of you, and like you I also stopped commenting in the last while because I was also intimated by the ammount of people reading and commenting there daily.
In the last few months I was always scared to check his site, because I didn't want the post I read to be the last. I did however know that the end was near, and in the last week or two I would check daily to see what I going on over there and offer up a simple, "thinking about you".
Thank you for introducing me to such a great guy.
You are right, there is a large hole in the blogging community now. His presence is already being missed.
I'm sorry to hear that you lost another friend. I see a lot of people go down in their prime at work, and it never gets any easier.
Wow, Nat, this was truly a work of art. What a story, and a real tragedy.
You really have had a trying time lately magnetbabe. Your tribute to BH is so beautifully written, the feelings come right off the screen.
My deepest empathy to you and to all who clearly loved and respected BH.
Thanks everyone for your kind words. I never thought it was possible to miss someone I had never seen and whose name I still don't know. But I guess those aren't really the things that make people friends. Now none of you go dying on me, ok?
jackie-
I also felt scared to check his blog over the last couple of months. Then when I saw his picture posted my stomach dropped. I thought you probably had the same reason as me for not commenting quite so much. I'm glad you kept reading anyway.
After reading your post, I went to see his blog. An amazing story. I was touched by your beautiful writing and his frankness. Thank you for sharing with us.
Thinking of you often.
I never knew of Brainhell until now. (Hint: you need a blogroll.) He seems to have touched many lives with his story. Rest in peace.
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