May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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In Memory of John Knight

Discussion in 'In Memory of ...' started by Shadowfax, Jan 4, 2017.

  1. Shadowfax


    My brother John died this morning. He had suffered tremendously for years with the horrific disease ME (myalgic encephalomyelitis), the same disease that killed our father and grandmother, the same disease that struck me down 11 years ago. With all of his body systems malfunctioning or totally shut down, including his immune system, a simple cold that he caught on Sunday, took him out.

    Thankfully, he died peacefully in his sleep in the arms of his heroic wife. John was an incredibly intelligent, interesting, witty, talented, and motivated person. He taught me things and he made me laugh. He had the potential to do great things in the world, but his illness kept him a tortured prisoner in his body.

    I don't want condolences, I want to take a sledgehammer to the walls of the NIH and scream WAKE UP! I want NIH to step up to the plate and fund research that matches the disease burden, I want the millions of marginalized people suffering from this horrendous disease to get the support they need from the world of medicine and society at large. I want my family members to stop dying. I want my friends in the community to stop dying. I don't want to die.

    In May I spoke about my brother and his daily fight for survival at a MillionsMissing demonstration in San Francisco. I said I was there to fight for his life. We must keep fighting. If you feel inspired to do something in his honor, please make a donation to the Open Medicine Foundation. I love my brother so much. No words can express my deep sadness.
    Aroa, GreenBlanket, Beyond and 81 others like this.
  2. Sushi

    Sushi Moderation Resource Albuquerque

    I am so very sorry, Shadowfax. Your story is our story times infinity. To have your whole family stricken with this illness is unthinkable. Sending you and your family all our support...and with our support comes our tears.
  3. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    What a terrible way to start the year. So sorry for everyone.
  4. Kati

    Kati Patient in training

    My deepest condoleances, @Shadowfax this is heartbreaking :(

    Shadowfax, TreePerson, MEMum and 4 others like this.
  5. bertiedog

    bertiedog Senior Member

    South East England, UK
    My sincere condolences to you at this awful time for you. Lets all hope and pray that this year some DEFINITE progress will be made its getting ridiculous how long it is all taking in my view.

  6. Ysabelle-S

    Ysabelle-S Highly Vexatious

    So sorry to hear about this. :( Especially with other family members devastated by the same illness. I completely understand you wanting to take a sledgehammer to the walls of the NIH. Their false illness delusions and foot dragging have wreaked mayhem in our community.

    Very best wishes to you at this sad time. XX
  7. Denise

    Denise Senior Member

    @Shadowfax I am very sorry that so many in your family have this horrid disease and that your brother has died!

    I share your rage about the woefully inappropriate funding, the stigma, the widespread misunderstanding about this disease!
    Shadowfax, SueJohnPat, Sushi and 3 others like this.
  8. erin

    erin Senior Member

    So sorry to hear the loss of your brother. This is when words become meaningless. Another life is gone, needless suffering of the lost one and the family & friends. This day and age an illness ruins people's life in such way...
    Shadowfax, Sushi, Laurie P and 2 others like this.
  9. Molly98

    Molly98 Senior Member

    @Shadowfax, I am so very sorry to read this awful news of your brother, it must be absolutely devastating for you and your family, and a big part of that devastation I would imagine would be that the medical establishment and powers that be just sat back and did nothing and let it happen. I am not surprised you feel so much anger and I think the whole community feels rage and anger when we hear of yet another tragic loss such as yours.

    My heart goes out to you and your family through this difficult time.
    I can not imagine what it is like to have your whole family struck down by this devastating disease. It is just truly awful.

    I will make a donation to OMF today in your brother's memory.

    Sending you and your family love and best wishes during this awful time
  10. Ben H

    Ben H OMF Correspondent

    I am so sorry to hear this @Shadowfax

    Thankyou for being so proactive, despite yourself having the illness. Im sure your brother was very proud. Keep fighting.

  11. shannah

    shannah Senior Member

    Deep sadness felt for your loss ... and ours too.
    Shadowfax, Sushi and Laurie P like this.
  12. Laurie P

    Laurie P

    New England, USA
    @Shadowfax, I'm so sorry to read this news of the senseless, needless, suffering and tragic loss of your brother, John Knight. I'm so sorry for all that you and your family have had to endure and continue to endure. Please take care at this extremely difficult time. Take comfort in the time that you had with your brother and the love that you share. Take comfort in knowing that the ME community grieves with you.

    Me too! We need a wrecking ball to knock down the ignorance, apathy and bureaucracy to see if there is anyone left with the humanity, compassion and will to do their jobs and truly help us.

    It's terrifying to be so ill, misunderstood and outcast from society and medical care. I don't want to die or loose anyone else either.

    I sent a brief email to Collins with the subject line: WAKE UP, NIH! ACT NOW! Another ME patient, John Knight, has died.

    Dear Francis S. Collins M.D., Ph.D.,

    The ME community grieves another senseless, needless, tragic loss, that of John Knight, a severe ME patient, who died in his sleep after coming down with a simple cold. This family has endured 3 tragic losses of family members to this disease and don't want to lose anyone else. The ME community doesn't want to lose anyone else. As a severe, bedridden patient, sick since 1983, I don't want to die. We want this endless, needless, suffering to end. We look to you to make sure that this disease is funded commensurate to disease burden, that we receive treatments and care, and that the discrimination against patients with this disease ends.



    Laurie P_____

    Thank you, Shadowfax, for asking for donations to the Open Medicine Foundation in your brother's name.
    Shadowfax, Old Bones, Binkie4 and 7 others like this.
  13. Snowdrop

    Snowdrop Rebel without a biscuit

    I am also sorry to hear of your loss Shadowfax.

    I understand your frustration (as I'm sure we all do) with the pathetic non-response from most of the medical community so far with regard to ME.

    I hope for you that in time your wonderful memories of your brother will bring you comfort rather than pain.
  14. Daffodil

    Daffodil Senior Member

    @Shadowfax I cannot even begin to imagine how you must feel after losing so many to this disease. I cannot even imagine. I am so deeply sorry at this cruel injustice. I just wish I could give you a big hug a hundred times.
  15. Shadowfax


    Thank you all so very much for your words of support and love. It is comforting to feel this sense of community and acknowledgement. This has been so difficult. I keep waiting for the moment when it's over and I can call him and we can talk about everything that's happened. I want to share his obituary with you, we lost a wonderful person.

    John Alex Knight 1971 - 2017
    John Knight was born in Provo, Utah to Elizabeth Allen Berntsen and John Louis Berntsen. His parents divorced when he was two. His mother joined the military and John grew up in many different places including Guantanamo Bay, Cuba, California, Texas, Turkey, and England. He attended college at the University of Utah, attaining bachelor’s degrees in psychology and chemistry, later a doctorate in law, a master’s in in public administration, and finally a master’s degree in computer science. His love of learning and extensive knowledge about nearly everything was a hallmark of his personality.
    He made the best decision of his life when he married Antje Rath in 2000. She was visiting form Germany and it was love at first sight for both of them. They supported each other through difficult times and grew tremendously because of their relationship. Their only child, Christopher, died shortly after birth in 2003 which left them devastated and, if possible, even more devoted to each other.
    John’s father and grandmother both suffered for many years with chronic illness, with John’s dad dying at age 53 from complications of this then unknown malady. As John got older, he started to have similar symptoms. Eventually, it became clear he suffered from a genetic immune system disorder. Over the years, he became more incapacitated and despite his heroic struggles (including reading over 20,000 medical articles and books), there is no cure or actual treatment for this disease. Through the efforts of his half-sister Jenny, who also suffers from this illness, we now have a name for this disease: Myalgic Encephelomyelitis. John was able to provide DNA to be included in a Stanford research study to try to understand the nature and the mechanisms of this illness. This is a legacy that meant a great deal to him.
    John and Antje moved to Moab in 2011, as John became unable to tolerate the pollution in the Salt Lake Valley. He loved the view he had and the friends he made here. Many of them took turns keeping him company in the last year of his life, keeping up his spirits and enjoying his dry wit and big heart. John loved Antje, his family and friends, his cats, Pink Floyd and Bach, Kandinsky, Star Trek, licorice, and prime rib. He loved helping people and figuring things out. He will be missed so much.
    John was preceded in death by his father Louis, his sister Coventry, and his son Christopher. He is survived by his wife Antje, parents Liz and Robert, siblings Hilary, Jeff and Jaynie, Jenny, Adam, and Carrie. His greatest hope was that his contribution would prevent his young nephew and niece to ever have to suffer like he did. John died peacefully in his sleep on Tuesday morning in Antje’s arms,
    A Celebration of Life will be held Saturday January 7, 2017 at 5:00 pm at Spanish Valley Mortuary.
    Please consider to donate in John's name to the Open Medicine Foundation.
    erin, Kati, Marky90 and 11 others like this.
  16. shannah

    shannah Senior Member

    Lovely tribute @Shadowfax

    May you find comfort in the wonderful blessing he was ...

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