In memorial: e-Patients Have Lost an Important Leader

On Sunday, May 25, 2008, The Sojourner died. She was perhaps one of the most active and loved e-Patient users of the virtual world Second Life. In the real world she was Karen Gans, a stroke survivor, mother and wife. She was 57.

I came to know her through my work with patients on the Braintalk.org stroke discussion board and then adopted her in Second Life as an inspiration and mentor. She probably had the most positive attitude I’ve ever encountered. She worked tirelessly to bring people together to help each other and overcome their problems. Her main interest was stroke, and she was a driving force behind Dreams and Shockproof, sites in Second Life that have become incredible resources for those with physical and cognitive disabilities. Through “in world” challenges she helped people to exercise their minds in a supportive and caring setting. She was constantly seeking resources to help people overcome the challenges of stroke and brain injury and continued to be active on the Braintalk stroke bulletin board as well as Second Life. She was interviewed for print and radio media, and spoke at symposia. Her disembodied voice was soothing and authoritative. We often joked that she should have her own radio show.

She seemed to know everyone and everything “healthcare” in Second Life. She knew who was up and who was down, and how to help. As my colleagues and I began to develop ways to test the impact of this virtual world on health and wellness, Karen was there to advise and encourage us. I was not surprised to learn that she had both masters and doctorate degrees and had been involved, with her husband, in program development and research with handicapped children prior to her stroke. Those skills in combination with her nurturing attention to our fledgling efforts made her such an important contributor to our team. In fact, I have to admit, after the news of her death finally hit home, I felt like an orphan. I will miss her, and my heart goes out to her family and friends.

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Comments

7 Responses to “In memorial: e-Patients Have Lost an Important Leader”

  1. Susannah Fox says:

    Dan, I am so sorry for your loss — and the loss to the world in general. The Sojourner’s comments about Second Life on blogs and in the press always intrigued me.

  2. Online tributes for Sojourner started very soon after news of her untimely death. Please find links below.
    http://nwn.blogs.com/nwn/2008/05/sojourners-end.html (New World Notes)
    http://tributetothesojourner.wikispaces.com/ (Place to read and post thoughts and prayers)
    http://gwynethllewelyn.net/2008/05/26/the-sojourners-last-voyage/ (Gwyneth Llewelyn)
    http://dwellonit.blogspot.com/2008/05/sojourner.html (Tateru Nino)
    http://www.your2ndplace.com/node/1170 (Arthur Fermi)

    There is a growing memorial site in the Events area of Dreams. http://slurl.com/secondlife/Dreams%20Events/151/76/25

    A memorial service will be planned to coincide with the memorial service in RL on June 7th. I will give details as soon as they have been finalized.

    The vision and mission Sojourner had for Dreams will continue. Plans were made before her death in case this eventuality happened. Some amazing people are already working hard to make the transition as painless as possible for the users of Dreams.

  3. Dan Hoch says:

    Gilles, thanks so much for posting that information. Yes, there is much that will go on in her absence.

  4. I looked at the links and I confess way too much ignorance. Please link me to a ground-up article about her.

    Very sorry for everyone’s obviously painful loss.

  5. Karen Herzog says:

    While reading the blog memorials to Sojourner who I would have liked to have met, John Lennon’s song, “Imagine” comes to mind. May Sojourner and her kindred spirits’ dreams live on.

    “Imagine there’s no heaven
    It’s easy if you try
    No hell below us
    Above us only sky
    Imagine all the people
    Living for today…

    Imagine there’s no countries
    It isn’t hard to do
    Nothing to kill or die for
    And no religion too
    Imagine all the people
    Living life in peace…

    You may say I’m a dreamer
    But I’m not the only one
    I hope someday you’ll join us
    And the world will be as one

    Imagine no possessions
    I wonder if you can
    No need for greed or hunger
    A brotherhood of man
    Imagine all the people
    Sharing all the world…

    You may say I’m a dreamer
    But I’m not the only one
    I hope someday you’ll join us
    And the world will live as one.”

  6. David Derk says:

    I am her baby-brother, and have many of her symptoms.
    I appreciate all who worked with and for her.
    She has been missed.
    Its amazing all she was involved in. I as one of her family was ignorant of how much she was involved in.
    She recommended brain talk to me, I never got on brain talk. And my computer would freeze up on second life.

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