Slow Death Captured on a Blog

February 25, 2008 4:34 PM

Slow Death Captured on a Blog. Brian Hill died February 2, 2008 after living with and blogging about his experiences with Amyotrophic Lateral Sclerosis. A similar story, previously.

He was diagnosed with ALS, or amyotrophic lateral sclerosis, on Jan. 13, 2004. Readers of his blog discovered a rare personal account that chronicled one man's eloquent journey through the maelstrom of an incurable and fatal disease.

posted by otherwordlyglow (14 comments total)

I actually couldn't read all that much of the blog; it made me too sad.
posted by otherwordlyglow at 4:43 PM on February 25

Thank you for posting this. Even though it is, indeed a very emotional read, it's something that I know I should look at. My grandmother is in advanced stages of ALS, and in what I have read so far in this blog, I feel like it gives me a bit of insight into what might be going on in her mind.
posted by DrGirlfriend at 4:51 PM on February 25

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My condolences to his family and friends. After reading part of the blog, I think he left a gift for others who are diagnosed with ALS. He bravely described his diagnosis and tests and hopefully that will comfort others in his situation.
posted by Frank Grimes at 5:25 PM on February 25

I found this in my archives dating back to 2005 :


BBC NEWS | Health | Tumour diary: The time has come

BBC NEWS | UK | BBC writer Ivan Noble dies at 37 | Ivan Noble, the BBC News journalist who has been writing about his treatment for a brain tumour for the past two years, has died at 37.

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It still makes me sad.
posted by liza at 6:07 PM on February 25

WEDNESDAY, JANUARY 23, 2008
wife, i love you.
children, i love you.
~POSTED BY BRAINHELL AT 11:09 AM

Jeeze... I wonder if he knew? I can't even imagine that state of mind...
posted by Rhaomi at 7:20 PM on February 25

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That blog is powerful and sad, but inspirational as well. I love how people embrace new technologies in ways that allow them to reach out to others, share stories, and let us experience all sorts of things that we otherwise wouldn't. It oddly makes me feel closer to people, even those that are sadly no longer with us. Thank you Brian and otherworldlyglow, for sharing this.
posted by iamkimiam at 7:25 PM on February 25

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There is a companion site, BH at rest, that talks about his memorial and family.
posted by mogget at 8:17 PM on February 25

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Oh man, oh man oh man. Really sad right now.
posted by Ambrosia Voyeur at 9:20 PM on February 25

Hazey (30) passed away last month. Honest, funny and loving to the end. These blogs are hard to read sometimes but they put things into perspective.
posted by tellurian at 10:04 PM on February 25

It's a powerful and moving blog, but the family has asked repeatedly that the writing not be cited under the author's birthname.
posted by Scram at 12:24 AM on February 26

A friend of mine just died of a brain tumor, after a year of diagnosis, treatment, recovery, therapy, relapse, all the terrible things.

His wife kept a caringbridge.org blog through the whole process. It was very, very good for her and for all who knew Stan. I'm donating.

Funeral is Thursday.
posted by bovious at 6:31 AM on February 26

ALS killed my grandfather. One of my few memories of him is me attempting to feed him because he couldn't feed himself. I was very confused because I couldn't understand why a grown-up couldn't feed himself, but Mom explained that Grampa was sick and couldn't do it. He could still laugh and talk at that time and he made jokes about me being a pilot when I grew up because I could do the "airplane" feeding technique so well.

There's a possibility that this thing is genetic and both my mom and I are hyperaware of the preliminary symptoms. It's a wicked, vicious way to die and my heart goes out to this man and his family.
posted by teleri025 at 8:33 AM on February 26

That is, without a doubt, one of the saddest, most heart wrenching things I've ever come across.

Thank you.

And rest in peace, BH.
posted by flippant at 2:02 PM on February 26

Profoundly moving blog.

Most of us Westerners are not familiar with the dying process and I think Brian Hill offered something significant to the world, what dying is like from the inside.

He struggled at the end dealing with his caretakers.

Years ago I was briefly, for a couple of months, a wheelchair pusher/companion for a New Yorker who had something similar wrong with her, I never knew what she had, Multiple Sclerosis or ALS or what. She was not at all easy to take care of, there was a stubborness and controlling aspect to her that I've always wondered about and reading Brian Hill's blog I'm tempted to think that when a person is profoundly disabled they feel so out of control that they retaliate unconsciously and become over controlling, so much so that it's hard to caretake them or takes a very specifically patient kind of person. I couldn't handle it for more than a dozen days a month for 2 months.

I'm not sure whether Brian's caretakers were just lousy, whether they felt adversarial or whether the disability triggers fear in caretakers. It was sad for me reading how he struggled at the end, feeling angry, frustrated.

Still, his blog was an act of courage and tenacity and I feel very inspired by it, thankful for his gift of truth, the story of him facing death, day to day over years.

Thanks so much for this post.
posted by nickyskye at 3:03 PM on February 26