Dr. Bateman answers IOM questions from the community: Part 1
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In Memory of Patrick Kelly/hubcap_halo

Discussion in 'In Memory of ...' started by Phoenix Rising Team, Apr 22, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Person with CFS Takes Their Life: A Goodbye to Patrick Kelly
    APRIL 22, 2012

    Posted by Cort Johnson

    [​IMG]After 17 years of being ill with chronic fatigue syndrome, Patrick Wylie Kelly, took his life on April 15th leaving many in the ME/CFS community shocked.

    An inspiring figure to many in Sept 2011, Patrick posted on the Phoenix Rising Forums that he ( hubcap_halo on the Forums) was working on accepting the losses that come with the chronic illness and looking to find positives –something he had done for years.

    “Jumping off from Penny’s quote that about the fight to hold onto bits and pieces of our former life AND from Cort’s welcome and frank reminder that depression and chronic illness often go hand in hand—-if it’s not obvious, we have to fight to find (or create) positive things in our ME/CFS life as we mourn the loss of our old life.

    Making room for both. Loss and moving — positively — forward.”

    In fact Patrick’s Facebook site is full of interesting and often uplifting quotations accompanied by beautiful photographs……In February he posted

    Feel your bare feet on the ground. The soil soothes, strengthens, and heals. Your Earth. Third planet from the Sun. Over 70% of the Earth’s surface is water, with a thin atmosphere of mostly nitrogen & oxygen. Earth supports ~8.7 million life forms, including potentially intelligent species such as dolphins and humans. Please enjoy your stay….
    Patrick tried to uplift those around him – in fact he was known for doing that –which made his untimely death at 42 all the more difficult to accept. Again and again people noted his humor and his graciousness. Rivka described him as one of “the most positive and kind people’ she had ever met.

    “Over the past years, I counted him among my good friends — but many of us likely felt that way because he was so outgoing and loving to all of us. He had been very sick for years. And most recently, he was doing much better; he told me he was going on walks and lifting weights. That was the last I heard and that was in December 2011. After I heard about his passing, someone told me that he had got much sicker again. No, I don’t know for sure if that happened. But certainly, if that is true, we all know that the dashed hopes after getting a bit better, and finally having a sense of some wellness, and then losing that yet again to a bedridden hell, can be devastating.

    The crazy part is, he was one of the the most positive and kind people I have ever ever met. No exaggeration. Over the last five years, he was always unendingly telling me how we are going to get better”

    Patrick was clearly an unusual man – funny, big hearted and articulate. For his Birthday in his Facebook site he put “Pick a day and send me something”. He had a lot going for him as a young man… a punk rocker and straight A student he stated that he “studied all my subjects + drugs and partying in high school” – he was clearly a well rounded individual (!)…. and graduated Phi Betta Kappa from college and then created a successful graphic design business. Following college Patrick successfully dealt with periods of depression using meditation and medication; in fact he felt having depression had, in the end, been something of a positive.

    That was not true for CFS, however. In Dec 1995 Patrick got sick and like so many others never recovered. While Patrick had been able to cope with and even surmount his depression CFS was another challenge indeed. Clearly a rather enlightened man, he reported he had looked for CFS’s lessons and failed ‘Unlike my first depression, CFIDS has never felt like a gift. Mostly because no matter how well I try to learn it’s lessons, it never leaves.”

    He recovered enough by 1997 to pursue a work and crash, work and crash lifestyle – working well below his skill level as a freelance advertising writer. In 2005, quite sick, he moved to New York because he’d always wanted to live there…and there he was doing all the right things – he was on the Teitelbaum protocol and doing yoga, meditation, self-help CDs, journaling, al anon groups, eating no sugar, only healthy foods, and trying to be peaceful.

    Patrick got around – his Facebook and Forum pages were filled with people who’d had significant conversations with him…The scariest thing about his death is how talented he was. Again and again people described a unique person gifted with an enormous drive for life. I didn’t know Patrick but by the time I got through the tributes I sincerely wished I had.

    “I already miss his giant smile, wild sense of humor, artistic zeal and the joy Patrick created. A wonderful, memorable personality, a kind and gracious man ….

    “Handsome, multi-talented, witty and smart, Patrick was the star of our family and the best roommate ever. I will be forever grateful for the abundant warm and happy memories.” His Dad

    ”Smart, creative, witty, upbeat, supportive, and undeniably unique in all the best ways. He was also incredibly humble, given how talented he was. If he had not gotten sick, he would have surely been one of those people who had it all, because he had such enormous gifts and from what I saw a tremendous drive to live fully and accomplish a lot in his life.” Peggy

    “Pat, your friendship had such a huge positive influence on my life and you probably didn’t even know it – because being nice is just who you were. Peter Schoenke

    He was extraordinary — extremely smart and emanating kindness. He also seemed unedingly proactive about seeking out a better life. I hope his family and those closest to him can know that he touched a lot of others even while dealing with his own illness struggles, and I hope he is at peace. Peggy Munson

    “Patrick had the most incredible combination of being simultaneously fearless and fragile. I believe he had the most beautifully creative mind I have ever in my life had the pleasure of briefly co-mingling with. Paul Durham

    It tragic when anyone, let alone someone as dynamic as Patrick was, kills themself. His death is a loss not just to his family but to the many people he touched in the ME/CFS community. The fact that he clearly was an unusual person who had dealt successfully with something as serious as depression but ultimately was unable to do so with chronic fatigue syndrome only underscores how difficult this disorder can be.

    Two things to ponder 1) suicide often occurs during exceptionally dark moments which are often temporary in nature. If an individual can get through those they can often continue on. (2) Men are statistically much more likely to commit suicide than women.

    Phoenix Rising has a Crisis Center with information on suicide and suicide hotlines throughout the world. If you have concerns about someone try and get them help.

     
    Last edited by a moderator: Feb 21, 2015
    Googsta likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks so much, Cort for writing this and linking us all pages that give everyone more appreciation of this wonderful man. I didn't know whether I could give his "real name"--I'm glad you did. It is another way of honoring this man who meant so much to so many of us and whose loss we can't accept.

    Sushi
     
  3. Googsta

    Googsta Doing Well

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    A beautiful tribute Cort, thankyou so much. I did not have the pleasure of knowing Patrick, but given the outpouring of greif on Phoenix alone, he was a very unique & precious soul.
     
    Little Bluestem and Firestormm like this.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Really nice Cort! Rest in Peace Patrick. I didn't know you but I miss you anyway....
     
    Firestormm and Googsta like this.
  5. Cort

    Cort Phoenix Rising Founder

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    I feel the same way...I feel like I wish I had known him....and his death is rather chilling honestly, given how talented he was and how hard he obviously worked at being well and keeping up as good a mindset as possible.
     
  6. Xandoff

    Xandoff Michael

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    Thank you Cort for sharing all of this with all of us. It is important that we all send peace and love to Patrick and his family.
     
  7. richvank

    richvank Senior Member

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    Patrick was the first person to try Valcyte and the methylation protocol together, back in late 2007. He found that the symptoms were too severe, so he dropped the methylation treatment until he had finished the Valcyte treatment. In 2009 he tried the methylation treatment again, for several months. I think he was still trying a version of it in 2011. He kept trying, because he read of the success that some others were having on the internet groups. Sadly, it did not seem to work for him. I don't know why. Perhaps his body was deficient in something that was needed. I hate it when we lose anybody, and he was really a wonderful guy. We have to figure this disorder out.

    Rich
     
  8. SpecialK82

    SpecialK82 Senior Member

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    What a beautiful account of Patrick's life, heartfelt condolences to his family and friends.
     
  9. Nielk

    Nielk

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    Thank you Cort for this write up. It gives me a feeling of getting to know him - in death - while I didn't know him before. I'm at a loss for words about
    How a young person who had such an uplifting attitude came to this desperation. Two days before, he wrote on his fb page - status: grateful? He must have already made up his mind and made peace with it. What a great loss!
     
  10. Cort

    Cort Phoenix Rising Founder

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    Rivka noted that when she had been doing better - much better! - and then pushed too far and had a bad relapse - that was really difficult to handle. I wonder if he experienced something similar? In Dec she said he was doing much better - even lifting weights.

    I remember that people engaging in torture sometimes give their prisoners great meals - and sometimes that's what gets them to break...its apparently devastating to go between the two states...you can get used to one state but to go through the highs and lows of both is really difficult.

    Who knows? It's something to consider if you start experiencing much improved health and then start fading...you may go through a really rough spot.
     
    Little Bluestem likes this.
  11. Bunchy

    Bunchy

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    This is devestating news. I exchanged a few posts with Patrick on another board years ago - he seemed a kind, funny and intelligent man. Such a great loss - terribly sad.

    My thoughts and prayers are with Patrick - may he rest in peace - and his family.

    Esperanza x
     
  12. InvertedTree

    InvertedTree Senior Member

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    Thank you Cort for writing this. This is such a loss for our community. I remember him well. When I was first diagnosed and started posting on prohealth he impressed me with how positive he was in the face of this illness. I don't really have words. May he be at peace...
     
  13. Carrigon

    Carrigon Senior Member

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    When I knew him, the thing we talked about most was the work and crash cycle. And how horribly depressing it was when you think you're getting better only to have the rug yanked out from under you yet again. But he was a fighter. And he kept on fighting. I don't know what happened. Somewhere in there, he just couldn't deal with it anymore. I hope he's at peace now. And I feel terrible for his family.
     
  14. taniaaust1

    taniaaust1

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    Nods.. I agree. When I had complete remission for a couple of years then suddenly started crashing. The whole situation hit me FAR HARDER then it had the first time even thou I didnt go back to my original severe level.

    People may think someone was lucky to gone throu a level of improvement or even a remission but it soo sucks loosing everything all over again for a second time and esp cause you know more about what you are possibly in for again, second time round..

    I think there needs to be more awknowledgement of just how hard that can emotionally/mentally be and the possibility of maybe an increased suicide risk at that time. It truely just makes one want to just give up.

    No one seems to really know if that is what happened to Patrick or not and if it was what finally pushed him over that edge but its certainly a possibility.

    I cant remember ever communicating with Patrick but it is sad to hear he was trying so hard to find something to help... only to end up feeling he couldnt continue on any further.

    RIP Patrick and condolences to his family
     
    Firestormm likes this.
  15. Don Quichotte

    Don Quichotte Don Quichotte

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    Recovery, in itself, can be a hard and painful process.
     
  16. ramakentesh

    ramakentesh Senior Member

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    Sad news. Very sorry to hear.
     
  17. ramakentesh

    ramakentesh Senior Member

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    I have a relapsing remitting course and although i cant really speak for others, I do find that often you feel like your life is back on track and things are looking positive it can be a very 'oh no, not again' moment when it returns.
     
  18. sianrecovery

    sianrecovery Senior Member

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    I feel a great sadness on hearing this news - another kind, brave fellow traveller who quite understandably couldnt take anymore suffering. Travel on in the light Patrick.
    Thank you Cort for making sure his death did not go unnoticed by his community.
     
    Wayne likes this.
  19. Merry

    Merry Senior Member

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    My sympathy to his family and friends. By all accounts, Patrick was an exceptional person, very kind to others struggling with the same illness.
     
  20. BEG

    BEG Senior Member

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    Condolences to the family and those who loved him, in their time of loss. To Patrick, I'm so sorry you felt that leaving this earth was your only way out of your life. I trust you found what you needed.

    "So every soul goes on, learning what questions
    will count, seeing a life slowly take shape,
    placing light against dark, dark against light,
    patiently as a painter, always losing and finding."

    from Losing and Finding (the excerpt above from a poem of the same name), by Karen Fiser, also a PWC.
     

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