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Thread: Jack - Rembered

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    Default Jack - Rembered

    On 23rd September 2011, we lost an active member of this forum. He'd had WG for some 25 years. During this time, arguably some of the 'so called' cures which he was exposed to, worsened the condition and shortened his life. It is with thanks to people like him that treatment has progressed. The early victims of WG were little more than Guinea Pigs.

    Many of you on this forum will not have heard of Jack. His Leonard Cohen icon beamed out for 3 years. I don't think anyone on here ever met him, but on-line, he was very active and shared his knowledge and experience. Search 'Jack' and you will see what I mean. Below are links to a couple of his threads.


    Whilst scanning them, it is also sad to see others such as 'lightwarrior' who have gone, to what we hope is a better place. Jack was no better or worse than anyone else but, perhaps, just stands out a little more to me. Also let keep Phil in our minds as he battles on.

    I don't post on here very often nowdays (but do lurk) but this guy touched so many lives when alive, I'd just hate for him to be forgotten.
    RIP Jack


    http://www.wegeners-granulomatosis.c...jack-said.html
    http://www.wegeners-granulomatosis.com/forum/new-member-introductions/77-20-years-wegener-s.html
    http://www.wegeners-granulomatosis.c...news-jack.html
    Attached Images Attached Images
    Last edited by Hammy8241; 09-16-2014 at 11:39 PM.
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



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    Great post, thanks for keeping Jack alive in our memories and for reminding us that treatment has improved.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    When I joined this forum and read old posts I noticed many by Jack and Lightwarrior, it was really sad to read about their passing Feels like I knew them, even though they were gone before I had even heard about them.

    I also liked Sangye's posts, even though I guess she hasn't really posted anything in a very long time. (Just not active anymore, I guess).
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Like many people, I joined here when I was diagnosed and scared to bits! It was those like Jack and Sangye who help me to understand WG and come to terms with it.

    I understand that Sangye is generally Ok by the way, but, as you said, we arrive here scared and dumb - progress to helping others - and then feel the need to brake free as the ones we knew move on or talk via other medias, leaving tha mantle to others....but most of us still lurk

    Back to Jack and one reason that prompted me to post this was a event I went to on Sunday. Jack worked for a car company in the UK and helped design some good and bad cars. I know he loved the Triumph brand and the photo below was a T4 winning a race. memories

    Race 1 - hammy8241
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



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    Quote Originally Posted by Hammy8241 View Post
    I know he loved the Triumph brand and the photo below was a T4 winning a race. memories

    Really? I had a Triumph when I was younger. A Spitfire MK3. My dad always wanted one when he was young, so he got one when he was older and gave it to when I was old enough. A small world I think there were 14 of them registered in my country if I remember correctly.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    I second everything you've just articulated so beautifully.

    Jack was the first to send me a warm welcome to this forum after I posted my intro/battle story. I immediately felt welcome and safe. Jack was an amazing man, and always felt like the wisdom behind everything, the benivalent patriarch. He helped me out of some tight jams in my early days and despite never meeting him in person, I felt like I had him in my corner. I remember talking to him about his avatar one time, and why he chose it, he said because Leonard Cohen was one of his two favorite artists, the other being The Gorillaz. I said, why not have some fun and change your avatar to your other favorite band? See what happens. So he did - https://plus.google.com/u/0/+Gorilla...66134214367080 and it lasted no more than a day.... lol.... it makes me laugh, there was an uproar...it was funny. It wasn't much later that he actually put his real photo from before WG as his avatar. Ever since Jack, I can't look at a photo of Leonard Cohen and not get a little butterfly in my stomach feeling like Jack's around.

    He gave great advice and he made me laugh and see hope where before there appeared to be little. His passing hit me like a brick.... a ton of bricks.


    Those were the days, when I needed this place most in my life - right after diagnosis, there was this incredible mix of energies all working towards keeping our collective as healthy and 'normal' as we can.

    Jack was the wisdom, kindness, pespective gained with having to deal with this disease through those early difficult days when it was all experimental and being one that survived their experiments much longer than most.

    Sangye was the practical, scientific encyclopedia with a very healthy mix of empathy and compassion. Sangye is pretty active on Twitter where she has over 6600 followers. She's helping all kinds of other souls, animals, birds... she spreads a very beautiful message, widely.

    Lightwarrior was exactly that, Christy was a warrior spreading light. She was a nurturer and a healer, perfect for being a nurse in real life. She had a positive view of everything, it was magical to watch. Sadly, we also lost her way too early.

    Al came after I had stabalized and was less active here, but we connected and I saw him as the academic of the crew. Finding research and being our go to if you wanted a science journal broken down into English. Al and I had many great discussions on the Autoimmune Disease research/awareness under one umbrella. Al too, lost the WG battle.

    Phil rounded off the energy on here, that was my ever present friend, with his welcoming and wealth of personal experience. Phil has suffered greatly at the hands of WG and brings with him a wealth of knowledge and compassion. He has spent most of his young life under the clutches and has chosen to share his experience to help others rather than turning inward. Phil and I have had our little scraps here and there, but that's to be expected of family - especially family where everyone is on pred.

    My best wishes go to Phil, and he better not stop his Saskatchewan-scrappy, pool-cue-waving, self from kicking some whoop-ass on this lung issue right now. I know you have it in you Phil. I know that every fairy tale has to have an antagonist, but they all get beaten in the end, so let's get on with the fairy tale part please. Sending Phil my best wishes, brightest light, and healingest ju jus, because this story has only just begun.

    Jack, Lightwarrior, and Al, a triad whose passing, so close to each other, shook me to the core. It was too much in too short a time.

    One is too much!

    But now I feel like I have them closer somehow.


    Thanks Hammy for bringing Jack back.
    Last edited by marta; 09-17-2014 at 04:32 AM.

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    RATBAG Marta... made me cry !
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



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    I came here not too long before Jack's passing, but he made a big impression on me. I had the good fortune to meet Al in person not long before he lost the battle. And Lightwarrior was a hard loss to take, as well.

    I have exchanged tweets with Sangye just recently, to make sure she knows what is going on with Phil. She is quite heartbroken that he is going through these things. The Tibetan Buddhist temple to which she belongs is including him in their daily prayers. She is doing OK herself, busy with temple activities and political and other causes on Twitter.
    Anne, dx'ed April 2011

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    I think of Jack pretty much every day. I don't know what it was about him that I loved so much. I could list some of his qualities but it was more than that. Same with LightWarrior/Christy. Friendship is inexplicable and something to be cherished forever.

    Thanks for your kind words everyone. Much love to you all.

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    Wow I feel as if I have gone back 6 years in a time machine! Posting on the same thread as Sangye and Jack's Avatar evident.
    Thanks Paul for remembering the anniversary of Jack's passing, we did discuss it with Dee when we visited her and The Baron earlier this year and I cannot believe how quickly that time has gone. I have to agree with you Marta, just seeing that Avatar brings back a real rush of tingling emotions, as if Jack was going to suddenly open up a new thread.

    I, like others, came to this site with trepidation, as searching the internet (Totally against my daughters wishes!) had only frightened the whats its out of me, but it soon became evident that there were friendly helping souls who could relate to my fear and ignorance, and offer me a helping hand.

    Like others on this Forum, I still have PMs from Jack tucked away in a folder; he was our Rock, along with Sangye, who despite having suffered, almost as much from the medication as the actual disease, was still able, often with a dry sense of humour, to give advice and encouragement. I owe him so much, and loving the music of Leonard Cohen, Jack is never far away.

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