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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
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
Jill. It is sad to hear the loss of someone who cared enough to push for change.
no relief but could tolerate it
yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture
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