Monday, January 28, 2008

Things are slowing down

Friends and family of BH are putting together a memory book. We are writing bits about his life, our times together. His lovely wife is reading it to him as he is awake or sleeps. It will go to his children, when they are a bit older, enough to understand a bit more. It is called "A Celebration of B's Life." My plan is to print, somehow, the entries on to include, so his family sees the outpouring from folks who didn't know each other in person, but who BH touched through his writings, shared with us all.


Yankee, Transferred said...

Dear Brainy,
I came across your blog only last May, through a thread from another blog. Your writing is brilliant, your humor razor-sharp, and your love for your family inspiring. You have changed the way I look at the world-at people who cannot communicate with speech, at the preciousness of my children, at the devotion of my spouse.
Godspeed, dear Brain Hell, you have done me a world of good. I wish you tonight, as I have every day since I "met" you, peace.

klhp said...

What a wonderful tribute for an incredible man and his family. How lucky his children are to have part of Brainhell's legacy gifted to them in this way.

I will think of you, Ron, and BH and his family in these slowing down days, and hope you all receive the gift of joyful grieving and peace in the end.

Anonymous said...

Ron, Thank you for giving us a place to go where we can receive news about BH and continue to write to him.

I think it's an excellent idea to print all of BH's blog for his family to keep forever. Who knows what changes may affect technology, the internet and access to blogs in the future?


Sis B said...

Ron, would it be too bold of me to ask you to shoot me an email? I have some ideas that I don't want to clog up comments with. Thank you.

Anonymous said...

Hey SisB,
Just sent you an email,

RusticateGirl said...

Thank you very much for keeping us updated. I have read BH's blog since the day my friend, who passed long ago, was diagnosed with ALS. Even in his own dealings with the disease, I remember BH's kindness (responding to my emails of despair) when I would ask for advice on my friend's ALS situation. Reading his blog became a daily ritual, like reading the paper, which still continues to this day. It has kept me active in my own local community re: ALS, and helping out others with this horrific disease.

I am grateful for BH's insight, wit and incredible attitude towards life, love and family.

Deanna said...

BH has left a very deep blogprint in my soul. I wish him a peaceful journey.

Boppa Divina said...

Thanks, Ron, for putting up this blog, for keeping us posted, and of course, for being such a good friend. (Wouldn't it be wonderful if everyone had a Ronolulu in their life? ;-)

I'm thinking of you, BH, his family and friends, and his many blog readers, sending much love and gratitude to all of you — but most especially to BH for the grace and wisdom (and kolohe spirit) he has so generously shared with us these past few years. I'll never forget any of you, and I'll never forget what I've learned.

Me ke aloha,
Boppa D.

Rachel Whetzel said...

While I don't know BH, I think this is a brilliant idea. Your "dillema" about printing? IF you'd like to, there is a GREAT site called that will publish your blog in a bound book. I have published through them before, and they are GREAT.

mark said...

i think in some days gone post, BH had mentioned he was saving posts in some word document book form? maybe not. i guess to find out it's easiest to do a keyword search of his brainhellblogspot entries. argh. peace

Anonymous said...

BH, thank you for writing so candidly about the problems you had as a result of lactose intolerance. I was recently diagnosed with it (I'm in my forties). Even after taking the (very expensive) pills, eating certain items caused a less severe version of the problem you had. It was quite distressing but, because I had read about it on your blog, I felt reassured. It's such an embarrassing thing to have happen that I wouldn't even want to ask my doctor about it if I could avoid it. (So now here I am telling all of your blog-friends about it.)

Sending good thoughts your way.


Anonymous said...

Hi BH and family,

OK, so I am crying a little bit as I write this. About a man and his family, none of whom I have every met. Which I think is kind of weird. I don’t read a lot of blogs, but yours I come to almost every day. I came across your blog through another blog...SisB (who I also don’t know but feel the same way about). I have posted a few times, but mostly just come to see how you are doing, and to see how you and your family cope with the everyday routines. You see, my husband has muscular dystrophy. We are feeling our way along this journey we are on together, and you have helped more than you could ever guess.

Like you he is compassionate, intelligent, loving, a music fan (esp. The Who and Led Zepplin), opinionated, and caring. And occasionally a giant pain in the ass, but mostly the other things You have given me some insight into how to cope with the everyday trials and tribulations that someone with a disability faces.

Thank you for giving me perspective. Thank you for giving me hope.

Sending peace and relief for your final journey.


Anonymous said...

Ron, thank you so much for keeping B's legacy going. I am the lost nurse who left for Texas. Please try to call me. Thanks. Joanne

ronolulu said...

How can I call you? Oh, I have an idea. I can put an add on in musical instruments. Something like at "BH Fiddle." That makes an email anonymous and you can write to that address and I'll get it. If you say yes, I can try it on Wednesday. Sneaky, aren't we!

joanne said...

Ron, great idea. I checked this morning just in case you left a Fiddle ad. No Fiddle ad but a BOSS DRUM MACHINE ad that reminded me of BH. It wasn't you.

magnetbabe said...

Thank you, Ron for making this site. I have read BH for two and a half years, and I was lucky enough to get to know him before his illness really took over. He is one of the funniest and smartest people I have ever met, both in real life and in blog land. I deeply value our friendship and I'm so sorry he is not doing well enough to write. I hope he is comfortable, and my thoughts are with his lovely wife, amazing children and all his other friends and family.

Natalie (mb)

Anonymous said...

I have been reading BH's blog for over a year now and have commented only once or twice. He is everything that everyone has said he is and more and I wish him peace and the same for his lovely wife and children. It will be so hard for them.

A friend has been recently diagnosed (12/07)with ALS ... she is 33 years old, has two children (4 and 2) and this horrible disease is progressing extremely rapidly as she is already in a wheelchair, unable to raise her arms and requires a neck brace. Fortunately (or unfortunately as the case may be) my knowledge of this blog has allowed me to help the family know what they may need in the near future, so I thank BH for his candidness as we went through this tremendously personal journey with him.

Such a brave man ... leaving us way too early. Thank you ... you will not be forgotten as your spirit will live on, not only in your family, but in so many that you never met.

ronolulu said...

Dear Anonymous,
So sorry to hear about your friend and her family. Something that I don't remember being discussed on BH's blog is that most towns have ALS support groups - for friends and family. I know of one here, and although I never attended, for some people it is a good spot to hear, learn, eat, drink, smile and cry. I just put it out there.

shara said...

I think the bravest and most courageous thing I've seen in all the reading I've done at brainhell's blog is that brave and courageous isn't always possible. that suffering doesn't mean saintliness. to be so open, as much as possible, and to affect so many people never met. and leave an honest record for the friends and family, and especially children - as a parent I know I will, if nature follows the course it's intended to, abandon my children in death, leave them to grieve me, and it's a hard thing to face, especially knowing how losing my own mother in my 40s devastated me, still does, even though it gets easier to bear, and sweet memories outweigh the sorrow. I wish I knew her, in good and bad, inside her head, the way I want my children to know me. the way this beautiful and unflinching record will soothe and sustain the children of a man I will never know, but who has affected me quite profoundly. I wish I could say thank you. I will go kiss my little sleeping girls and call my husband to tell him I'm sorry I was so cranky with him, email my grownup daughter and call my dad and tell them I love them, I will keep working harder to honour all the connections I've been lucky enough to have in my life, and that will be my thank you. and for everyone who is losing this dear difficult man, I wish you comfort.

The Kept Woman said...

Thank you for creating this place, Ron. I think the printed entries, only with the assistance and blessing of his family of course, would make an incredible book. I can recall how his writing has changed over the years since I started reading in late 2004.

bint alshamsa said...

It's funny hearing someone else talk about their lactose intolerance. It was because of BH that I felt comfortable telling my doctor about what was going on with me. I don't think he'll ever stop having an influence on how I see myself as a person living with disabilities.

Anonymous said...

Thank you for sharing that, bint alshamsa.

Another thing that happened was that BH posted about having a chalazion. I have blepharitis because the oil glands on the underside of my eyelids (can't remember how to spell it) produce too much oil, and I have had styes in my eye, so of course I was interested and had to Google it.

A few weeks later, I had a chalazion. Thanks to BH's post, and another article, I knew how to treat it and it went away fairly quickly.

So thanks again for being so open, BH.

Wishing you and yours a day of love and peace.

Freewheel said...

Ron: Thanks for creating this blog. Here is a link to my Brainhell tribute:

Anonymous said...


My name is Dave. BH once dubbed me "Bible Man." He and I corresponded for a while eventhough he never divulged his identity to me. However, I believe we truly were friends. There was a short time in which neither of us wrote to each other. He finally wrote me, and he asked how things were going. I confessed that I used the anonymity with which our relationship began to not write for a while, but I was wrong. I did miss hearing from him. I did not hear from him again. I feared that I offended him. Thus, I have not written since, but I continually read his blog. I don't know if it is even appropriate to write now. I wish to convey to him my sincere sadness. He and I did not see eye to eye on Christianity, but I want him to know that I am praying for him. Please advise.


Anonymous said...

Oh, sorry, I see that I did not sign my last comment (about my charming chalazion).


Sylvia said...

Ron, Thank you for keeping us informed about BH and the stories people are sharing about their friendship with him. I can only imagine how hard this has been for you and the rest of BH's friends and family. You are lucky to have had him as a friend and he is lucky to have you. I am unbeliveably sad for this man whom I have never met. Love, peace and respect to all of you.

Anonymous said...


Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Shady Grove Eye Vision Care said...

Blepharitis can be difficult to manage because it tends to recur. Treatment depends on the type of blepharitis you have. It may include applying warm compresses to the eyelids, cleaning your eyelids frequently, using an antibiotic and/or massaging the lids to help express oil from the meibomian glands.

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