Wednesday, September 26, 2012

In Honor of Rich Van Konynenburg

This morning I woke up to find the following email. It had been forwarded to me by a mutual friend and was also posted on various message boards, yahoo groups, and other places where Rich was active:

This post is from Rich's wife. There is no easy way to say this, and this message is very difficult for me to write.
Rich died early this morning. It appears that he suffered a massive heart attack in his sleep. He did not have a history of heart disease, so this was sudden and quite unexpected. It doesn't seem possible to me that Rich is gone. I am at a loss to express how profoundly I will miss him (I already do!). 
I am trying to figure out how to begin notifying everyone who will want to know. Please feel free to repost this message on any forum or group where people who interacted with Rich will want to know of his passing.
Diana Van Konynenburg

I'm in shock, stunned. I've been rattled all day. How can Rich be gone?

He was such a wonderful man and a gift to the ME/CFS community. He was kind, generous, a gifted researcher, and a source of compassion and wisdom during rough times. He was dedicated to finding a way to help us.

He and my dad both worked (and retired) at Lawrence Livermore Lab. I remember communicating with him about it. He was generous in answering emails even though he was busy.

His protocol helped bring many people from bedbound back to functional or even working. Rich was humble. Despite ample evidence that the methylation cycle is involved in ME/CFS Rich never suffered from hubris. In fact when it was clear the methylation protocol wasn't working for some people (I was one) he went back to the drawing board to try to figure out why.

For me it was because my body couldn't (can't) clear a massive low grade chronic infection. Rich never got defensive. He didn't view questions like 'why isn't this working for me' as a threat but more as a mystery. He sincerely wanted to help us have a better quality of life and he worked tirelessly at it.

During rough times on message boards Rich would come in and calm everything down. In fact during very tense conversations I began to watch for Rich to comment. When he did the tone of the conversations would inevitably shift.

He was like a collective Father figure to the ME/CFS community. A community that has suffered from stigma, scorn, and horrible neglect by the medical system. Having Rich around eased that burden somehow.

But he also had something rarely found in a healthy person.

His faith and spirituality gave him an uncanny ability to walk in someone else's shoes.


He understood what it was like to live like this. He knew how much we suffered. and he knew we weren't exaggerating, being dramatic, or whining. He knew without a doubt how sick we are.

I remember emailing him a couple years ago and in my email I said he felt like an Angel for us. He wrote back and said he wouldn't go THAT far.

Now he is that Angel.

I cannot imagine what his wife and family are going through. My thoughts and prayers are with them. The ME/CFS community stands beside them just as Rich stood by us and we weep with them knowing what a deep loss to thousands (and more) of people this is and knowing that Diana and the rest of his family are suffering a loss so profound......my heart breaks for them.



3 comments:

Renee said...

It is so sad and tragic when someone dies so suddenly and it is such a blessing what Rich Van Konynenburg gave to the ME/CFS community.He will be missed....

Anonymous said...

thank you for this beautifully written blog post in honor of our friend, rich. i loved him, too. -- rivka

me/cfs warrior said...

Renee-It is so sad and tragic. He was such a good man. Thanks Renee.

rivka-Thank you. I know your heart is hurting-much peace to you...