Sunday, February 3, 2008

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. 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.


Anne in Oxfordshire said...

My heart goes and to you and this young mans family. This disease is known as MND in this country.

Before I moved to Oxfordshire, I used to work for the MND National Office in Northamptonshire in the fundraising department. I will send you link if you don;t mind, just ask. There are help lines all over the world, and if you need any help please ask me, I might not be able to tell you straight away but I do know people that will be able to tell me and help.

Take care and send love to his family. x

Chrys said...

JMB, what a gift you gave this young man - extending friendship, a connection, your compassion. People sometimes forget, there is a real, living, breathing, feeling individual behind some of these blog sites. Some of us aren't entertaining and schmoozing, but living the existence of who we are. You were truly appreciated and cared about and connected with. Even though some don't ever know what the other looked like. We have all met with our minds and spirits in the blogosphere. I am so sorry for the loss you feel and the loss the family must be facing. Know though, that you played more of a role for this individual than you realized.

Rositta said...

That is one shit disease isn't it. I remember Sue Rodriguez from the B.C. area who fought for the right to die. Not my thing, I think but with an awful disease like ALS, who knows how I'd feel. This was a brave young man...ciao

Lone Grey Squirrel said...

I am moved by your tribute to Brainhell. He seemed to realise that he had so much to be grateful for even with this dreadful disease, while so many of us miss this point. I believe he is at peace now and my thoughts are with his young family.

Bretwalda Edwin-Higham said...

One has to pause and think of the fragility of the human organism.

Carver said...

Poignant tribute JMB. What great parting words he had.

Holly said...

Your tribute to our friend BH is beautiful. I am holding your hand. Your website is so lovely and brought smiles to me. I have many pieces of Van Briggle and also some porcelain (sp?) from my trips to China to adopt my daughters. I also LOVE your hats. You don't need an occasion - wear one today! :-) Sending you a lot of love from Colorado. -Holly

Chris said...

What a sad loss. Through you, JMB, this young man has certainly now touched my life and if I can feel this sad then heaven only knows how those who knew him better must be feeling.

leslie said...

You've written a wonderful blessing to BH and his family. I'm sure if they see it, they'll be so touched by your kind words. Maybe through his blog, BH will be able to influence others in some way.

Welshcakes Limoncello said...

I had never heard of this terrible disease. How bravely he dealt with it. I am sorry for your loss, jmb, and I my herat goes out to the young man's wife and children.

Anonymous said...

I knew met BH more than 20 years ago. We worked together a little and lived together a little. I knew him single, married, with and without kids.

I am so impressed by how well you knew him too.

Thanks for your tribute.


jmb said...

Thank you everyone for reading this tribute and sharing your comments with me. One could not help but be touched by this young man's courage in dealing with this terrible disease. His family of readers will miss him greatly.

Echomouse said...

Hi there,

Due to life circumstances, while I feared the end was near, I was late learning that Brainhell had passed away.

I also just found your comment on my blog from a post I wrote a while ago. I just wanted to stop in and say hello and I'm so sorry for your loss. Brainhell was someone I admired and read for just over a year. I found him via a cancer blogger. My parents were both dying of rare cancers last year.

When I found Brainhell's blog, I was in awe of his ability to be strong and so many other things. When I read comments, so many times yours stood out for some reason. While my Mother was dying here at home and I was caring for her, I was reading Brainhell all the time. You struck me as so kind and sincere by your supportive words. And you were always supporting Ratty as well. That has stayed with me. I think you're a rare sort of person with a great soul. It's no surprise to learn in your post here that you and Brainhell formed a friendship by email.

Anyway, in the last few months I found another new blogger via one of my regular reads. Seems everyone was giving out awards for a while there and I saw "JMB" listed on two of my regular reads. Immediately I thought it was you but was amazed. Last year, I had no time to follow links to new reads. So when your blog crossed my path this way, I thought, that's just too weird. It made me feel really good knowing I was reading people who knew you, this kind soul who was so supportive all the time for Brainhell and his family. So that's what my post was about :)

Thank you for sharing your words. As I read them last year, even though they weren't for me, with everything going on, it kept my faith in the world going in a way.

Sorry that took so long to explain. :)

Liz said...

Oh, jmb, how tragic. But how moving a story of such courage is.