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Dan Brookoff, Fidel Castro, Peace Offerings and Me!

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  • Dan Brookoff, Fidel Castro, Peace Offerings and Me!

    I think the loss of Dan Brookoff is finally hitting. I want to jump up and down and yell "Do you realize who we've lost?" He's the man who singlehandedly recognized that IC patients were being ignored when they asked for pain care. He's the man who set out to change that, one patient at a time, in his pain clinics in Memphis and Denver. Though he was small in stature, his heart was giant sized. He was good man who tried to help so many IC patients struggling with pain.

    We've lost a tireless advocate, an intellectual seeking new, potential therapies and a man who brokered peace rather than war between patients and their physicians and between the ICA and the ICN. He saw the good in most people.

    True story about Dan. As many of you know, the IC Network was born in 1995 after the ICA turned down my offer to build them the first website and online support community dedicated to IC. Not only did they turn my idea down, but I was chastised and ridiculed by their executive director and told what a stupid idea it would be to offer support on the web (ironic eh?) .

    I responded that if they weren't interested in it, that I would do it on my own at which point they said "If you do it without us, we will never acknowledge your presence or work." Believe me, they couldn't have been more hostile about it for many years to come.

    Yet, Dan knew me and he knew the founder of the ICA. He said, many times, "You have to talk with each other. You have far more in common than you realize and I think you could be friends." And so, at his encouragement, I flew to St. Paul to an IC conference to do just that. To sit down with my ICA critics and try to resolve any issues that they had.

    Well, ironically, it didn't go as Dan had hoped. I sought him out one afternoon and said "I'm here. Let's do it." He said "Wonderful" and then went to find the powers that be. He came back to the table 30 minutes later with an unusual, somewhat angry look on his face. He said "Jill, you are being compared to Fidel Castro trying to shake the hand of Bill Clinton. You are the enemy to them. To talk with you.. they want a peace offering."

    I asked "What they do want? I'm here. I will answer any questions they have about the IC Network, my goals, our finances.. anything."

    Deeply embarrassed, he whispered "They won't talk with you until you agree to give them your website." Shocked and appalled by their audacity, I laughed and said "They don't deserve my website because they don't have the decency and integrity to talk with me."

    The look on his face was priceless. He was obviously mortified by this unexpected turn of events and supported my decision to say "No." Of course, I would not hand over the IC Network and, of course, I was not the enemy. He was so clearly embarrassed for them and for me. And so, for many years, Dan danced an uncomfortable waltz between the ICA and the ICN... because he did, indeed, see the good in both of our perspectives.

    He was supportive. He was encouraging. He always welcomed my presence at IC meetings. He flew across the country to speak at our state pain conference AT NO CHARGE. He appeared in our free lectures online, again AT NO CHARGE. He was, undeniably, a tireless advocate for anyone who served the IC patient.

    And so this website might not exist today without the kindness and caring of Dr. Dan Brookoff. He told me that I had a good idea. He encouraged me to run with it and develop the ICN into what is now the largest IC support group in the world. I grieve deeply for the loss of his friendship, his mentorship, his compassion and, most importantly, his support.

    I hope that you will join me in lighting a candle tomorrow in his memory. We've lost a wonderful IC advocate.

    Jill
    Last edited by icnmgrjill; 04-17-2011, 07:08 PM.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    Jill -

    What happened to Dr. Brookoff?

    Nancy

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    • #3
      Jill,
      When I heard about his death I was so sad because there are so few Dr.'s who will fight for IC paitents. Those doctors who will research and help not for personal gain, but because they care about people, not making more money. I saw him featured in the ICA magazine and I did check out why he wanted to help those with IC - just how many of us feel. We wish we had cancer because no one will treat us or believe our pain is just as significant as those with end of stage cancer.

      I told my husband the night I read the message that it is a sad day for people with IC. We can't afford to lose people who will try to help so much when some doctor's don't know anything and dismiss us and our pain.

      God bless him and I pray for comfort for his family. So sad.
      Teresa

      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

      Comment


      • #4
        Ic

        Thank you so much for filling us in on all the details...we owe so much to you Jill. It is sad to hear the loss of someone who cared enough to push for change.

        All of this makes me think we need to get the word out about IC in a LARGER way. A friend of mine just finished her daffodil campaign for Cancer. It is everywhere and everyone knows about it. We are wearing our daffodils in support. An IC week awareness week would be so powerful.
        Interstitial Cystitis: Elmiron and Hydroxyzine
        Depression/Anxiety: Remeron, Cipralex and Clonazepam

        *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
        * 2 hydrodistentions :

        * currently on "Nabilone" for pain management

        Taken the following:
        Gabapentin no relief but could tolerate it
        Lyricano relief but could tolerate it
        Cymbalta severe depression/anxiety etc.
        Topamax severe nausea and weight loss
        Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

        What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

        Other conditions...
        Vulvadynia (amytriptaline cream - no longer using to to irritation)
        Severe IBS
        Chronic Sinus pain (nasal rinse as need)
        Migraines
        Lower back and sacroiliac joint disfunction

        Allergies: Erythromycin, scents and detergents

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        • #5
          I will definitely light candles tomorrow in memory of Dr. Brookoff.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

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          • #6
            I believe that he had a heart attack. That's what I've been told atleast.
            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






            Comment


            • #7
              Thank You.!.!.!

              Candles lit.. prayers sent ... I care.!.!.
              SueC
              [email protected]

              Comment


              • #8
                The wonderful doctor

                Jill,

                I lit a candle and said prayers for the family. The articles that I have read by him have been so helpful to me in seeking treatment. What a wonderful person. Thanks so much for the beautiful letter of tribute. He will be greatly missed.

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