brainhell

[Jeff]

http://brainhell.blogspot.com/

http://www.theglobeandmail.com/servlet/ ... =brainhell

1529 days since diagnosis.

I am a husband and father of two young children. On January 13, 2004, at 41 years old, I was diagnosed with a 100-percent fatal, presently incurable disorder called ALS. If you know me in real life, and I didn't personally invite you to read this blog, please send me an email about reading this blog.


Saturday, February 02, 2008

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

posted by ratty at 11:56 PM
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BH died tonight at 8:40, at home, in peace. His wife and I were at his side.

He wanted me to post his official last words to you.

Like James Tiberius Kirk, he said, "It was fun."

posted by ratty at 11:41 PM
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Blogging off this mortal coil

IVOR TOSSELL

March 21, 2008

To be frank, I really know very little about death. Death is something we've professionalized in this society. A few are charged with facing it every day: the first responders, the police, the soldiers, the medics and caregivers. The rest of us do our best to pretend it's not there, until it insists its way in.

So it's a profoundly disconcerting experience to read blogs like the one by a man who called himself Brainhell (brainhell.blogspot.com), who died of Lou Gehrig's disease on Feb. 1. His pseudonym was a sardonic twist of his real name, Brian Hill, according to The San Francisco Chronicle, which reported his death. Hill blogged his entire disease, from diagnosis to the final I-love-you's 1,520 days later (he was counting).

He's still pictured on the top of the site, peering up at the camera with brown eyes, electrodes wired to the skin around his scalp. Blogs being reverse-chronological, the topmost entry is the record of his last words.

He's not alone. Blogging the process of dying is becoming a small yet poignant fixture on the Internet landscape. For some, dying is a time to reach out to the world, instead of retreating from it. It may not be the next great trend in self-expression, but it's a form of living memorial that we're going to be seeing more of, and one that - however awkwardly - we'll have to get used to.

...

Globe and Mail

[Seamus OBlimey]

For Caleb aka dugoboy..

Fall Out Boy - The Take Over, The Breaks Over

[brainpanhandler]

Wednesday, December 24, 2003

So the MRI today shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. The thing is on the cortex (the outer layer), and it is in the motor region, which controls the movement of the limbs. Since it is on the right hemisphere, my left arm and leg are the ones that are acting funny. Lazy. Tingly. I have noticed myself stuttering, using the wrong word sometimes (broccoli instead of ravioli), slurring words, and 'mix-mashing' syllables ... or just not remembering the word I need. I counted this up to getting older and having two small children. The doctor says that the thing on my brain is close to the speech center, and that I have some other little thingies on the other hemisphere that are right in the middle of the speech center. So now I have an excuse for everything. I have an excuse for why I go to the store, find and verify the correct item that my wife sent me for, and still come back with the wrong thing. I have an excuse. My wife may wish she could get such an excuse.

If you are reading this blog you are probably a friend to whom I sent the URL by way of explaining what is going on with me. I don't want you to freak out. This whole thing could well turn out to be something simple and easy to treat. Maybe Lyme disease. Whatever. I don't know. I just thought that I would start this blog so that I could put down my impressions as I went along. I am hoping the story will be about some worry, followed by a big relief.

My wife and son just came back from a neighbor's house. They were dropping off gingerbread cookies. The neighbor's grown son was killed in an auto accident a couple of weeks ago. We usually see our neighbor and talk to her every week. But recently we wondered why she seemed to be avoiding us.

Which just goes to show you. As long as you are alive and have someone to complain to, you ain't bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. I know how lucky I am. You are lucky too.