In Memory of Bob: A tribute from his friends

waiting

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Bob's brother phoned me just now to say that Bob died on Wednesday. He asked me to let his online friends know, and will say more later. I don't know what to say: he was such a good friend.
@Graham, *You* were a truly wonderful friend to *him*. Thank you to you & @Countrygirl & @Gingergrrl & others who tried so very much to help him. What a terrible loss.

As for the despicable & ignorant treatment he received at the hands of the U.K. health system, I am appalled. It is terrifying. No-one deserves that mistreatment, in particular, our kind Bob. Force-fed?! Barbaric.
 

CFS_for_19_years

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I'll create a memorial thread for him and copy our posts there. We need to honor him in any ways we can think of.
Thanks for creating the memorial thread.

Maybe we could have a moment of silence (and prayer for anyone who is inclined) a week from the time he died or around the time of his memorial/funeral? Could we all stop typing for a brief time to recognize the passing of someone who has affected so many? I didn't know him but I read his thoughtful posts and know he will be missed by many.
 

Sushi

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Maybe we could have a moment of silence (and prayer for anyone who is inclined) a week from the time he died or around the time of his memorial/funeral? Could we all stop typing for a brief time to recognize the passing of someone who has affected so many? I didn't know him but I read his thoughtful posts and know he will be missed by many.
That is a very good idea. I hope that someone can let us know when the memorial service or funeral is taking place. I think many, many of us would like to mark that moment in honor of a fellow patient who meant so much to us and contributed so thoughtfully to this forum. A member dies will always be a member and though few of us will be able to be at his farewell in person, we knew Bob online and we can honor him online.
 

Gingergrrl

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Maybe we could have a moment of silence (and prayer for anyone who is inclined) a week from the time he died or around the time of his memorial/funeral? Could we all stop typing for a brief time to recognize the passing of someone who has affected so many?
Wow, that is an amazing idea and makes me feel less helpless. If we knew the time of his memorial service we could do that but if not, we could choose a time and post it in this Memorial Thread and then it could be a moment of silence, prayer, meditation, or whatever people are comfortable with, to honor Bob. This could become a PR tradition and I think it is beautiful (although my wish is that no one else dies and we did not even have to be discussing this).
 

Molly98

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Perhaps we could all release the same color balloon from our bedroom windows at the same time in memory and solidarity. Perhaps this is something we could do each time we lose someone from our community. Something in memory but also something visible that might draw attention that people are loosing there lives to this disease.

If we all tied some string with a note attached to Bob, or about Bob's death with an address to this thread or a website with Bob's story, when people found them, some may be interested/ curious enough to look up the address online and read his story. We would probably need to give it a couple of weeks to get the message around the ME community and set a time and date.

Maybe we could get some media interest to if people are wondering why these same colored balloons are appearing around the world.
 
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msf

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I just read his story in the other thread. I really hope that those who have caused such terrible suffering will be made to recognise this one day, and not just wessely and his ilk, but the medical community as a whole. I think we should ask for an apology from every health body that let us down, and depending on the laws in our respective countries, we should sue those responsible.

I dont remember much of our interactions, but I do remember that he was probably the most courteous and reasonable person on here (myself definitely included).
 

Wayne

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it’s lovely reading all your comments,
Hi @vickster,

My sincerest condolences to you and your family on Bob's passing. Please know there would likely be many more comments of affection for Bob if Phoenix Rising members were not so exhausted, with corresponding limited abilities to even reply.

I considered Bob to be a true gem on this board, someone whose unflinching grace, kindness and compassion were evident in almost every post he made. He will be sorely missed, by myself and many others. Again, my sincere condolences to you and your family.​
 

Ben H

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Bob's brother phoned me just now to say that Bob died on Wednesday. He asked me to let his online friends know, and will say more later. I don't know what to say: he was such a good friend.
I am so sorry and so sad to hear this. I didn’t know Bob personally though I always enjoyed his posts on the forum and his incredible contribution. I was dismayed at his treatment he had been through recently. Just heartbreaking.


B
 

Sushi

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Hi, I’m Robs sister, it’s lovely reading all your comments, I knew he did some ‘stuff’ on forums but never knew the extent of it.
Myself or Graham will let you know when rob’s Funeral is, we’re not sure on a date yet.
Thank you so much for coming on this thread and deep condolences from all of us. It is sad and ironic that, because we need to guard our privacy online, we know little factually about people with whom we regularly interact with and feel are our friends. I know your brother was a private person but if you feel that you could share anything more with us--like a photo that we could add to this thread--we would consider it an honor to get to know him better here. Of course, very understandable if you wish to continue to guard his and your family's privacy.

Yes, he did "stuff" online. If you haven't seen his profile page you may be surprised at how much he participated and interacted with us all here. If you follow this link, you can read all of his posts: http://forums.phoenixrising.me/index.php?members/bob.558/

HomeMembers>Bob>

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Bob
from England (south coast)

Bob was last seen:

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Hi, no problem, Graham has asked for a photo and that’s my job for this evening when the kids have gone to bed to look for one.
I am his little sister-6yrs younger, we have another brother and another sister, he chose my name for me when I was born. We fought like all siblings do but we were incredibly close as children, Mum said we ran rings round her. Her worst week was when we were both home from school with chicken pox.
I used to get into pubs at 14 and he was asked for ID. Our gran lived by the coast so every summer was spent swimming, rowing, sinking boats, creek jumping, skinny dipping...we travelled round Ireland and Scotland together and enjoyed festivals and clubbing in london together.
The ties of children and bobbles illness means we did drift apart but he’ll always be my kindered spirit. I can’t imagine never talking to him again.x
He was so humorous, an amazing uncle to 6 nieces and 2 nephews and an incredibly loyal son...
 

Sushi

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Hi, no problem, Graham has asked for a photo and that’s my job for this evening when the kids have gone to bed to look for one.
Thank you so much. If it is okay with you, we'll copy it to the first post in this thread so that it will be the first thing that readers will see. And it is so kind of you to share some of your memories of your brother. It enriches our picture of Bob in the wonderful way that only family can do.
 

Gingergrrl

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@vickster I am so sorry for the loss of your beloved brother. As others have said, he was a kind and calming presence here on PR and it is still hard to believe that he is gone. Thank you for sharing more about him with us so we could learn about him through your eyes. He did not deserve the suffering that he went through in the end and we are all hoping it will lead to positive changes for other patients in the UK (and everywhere) and also find a way to honor his memory and legacy.