March 9, 2012

Under the weather

I have a head cold and my email/calendar/tasks program are broken, and that should be enough to give me the blues, but even with an unstuffed head and knowing what I was supposed to do today I would still feel quite blue.

Some things have come clear to me in the past 48 hours that I could, had I been brighter, have seen earlier but I just didn't see. I've been fighting for certain principles out there, and believed that if I worked hard, gathered allies, spoke up, and those principles had merit then in the end all would be well. Yet I sit here in the wreckage of yet another storm and realize that honest discourse may well be futile until the next generation comes along and sweeps the old away.

Not because the new ideas are false, or that they are are not useful, but because it doesn't actually matter how calm and right and kind and patient you are. If people don't like your ideas they will find ways to hate you and your ideas. In today's melee, the excuse is that there are people who hold similar views who go too far or are too aggressive. That's true, there are. But to judge the ideas on that basis is a cheap escape from questions people don't want to answer. Well, I regret that these are new, controversial, misunderstood ideas that some rude people have expressed unattractively, but it doesn't change the ideas and their merits. I've not yet found a way to deliver these ideas without offending or causing ridiculous, outlandish responses.

I've watched with wonderment as interactions that I saw or was part of are distorted or outright lied about. I've been called extreme and rigid and narrow and closed-minded. I can only believe that the personal hurt of these people over being challenged has altered their judgement. I have nothing but sympathy for their pain but deeply saddened they would turn that against people who are often quite hurt themselves. It's a vicious cycle of fear and retribution between those who should be allies.

Look, eventually these ideas WILL be the mainstream and then a whole new school of thought will come along to improve on them. For those struggling with the paradigm shift you have my condolences but this advice: don't get stuck and left behind. Don't continue to harm families and patients with myth-based, well-meaning, but harmful beliefs.

So, just in case you missed them before, or you think recent fear-based attacks have changed my mind or my resolve:

  • Parents don't cause eating disorders. (that includes not "contributing to" them)
  • Patients need parents to step up and seek out and participate in evidence-based care if possible
  • Eating disorders are biologically based brain disorders.
  • The best-validated treatment for eating disorders are Family-Based Maudsley and Cognitive Behavioral Therapy and all others are of unknown value.
  • Nutritional and medical normalization are and must be the first priority of ED treatment.

These ideas may offend you, you may disagree with them, but they are neither extreme nor unfounded. If you assert the opposite of any of them, expect to be held accountable for that. If you misunderstand them expect to have me try to explain myself again. Some people will ask for that accountability politely, and some will not. People who feel their child's life has been harmed by bad ideas can, on occasion, behave that way. Ask yourself what greater provocation to strong emotion there is for a loving, normal parent, than being led astray while a child is dying.

I have not attacked anyone, nor do I condone it. I do come out strongly against certain ideas. I engage with mutual respect with people whose ideas I disagree with. But I also refuse to apologize for others as if I need to make my beliefs palatable. If you are dismissing ME or the ideas I believe in on the basis of the most extreme believer then ask yourself why you need to do that. The issues are worth discussing, and you aren't getting rid of the issues by lumping those who believe differently into a box you refuse to address.

13 comments:

  1. I really needed to read this right now. I'm feeling very battered and bruised and so I'm taking a long hot shower, making some hot cocoa, and recharging with trashy tv and crochet. Tomorrow is another day. Just because so few people understood the point I was making doesn't mean that I am wrong.

    You are passionate, Laura, and people misinterpret that as being narrow-minded. Which I find extremely hilarious having met you. You are the least narrow-minded person I have ever met and my life is possible because of you and the work you have done.

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  2. Sorry about your head cold and about the need to defend yourself just because your views are challenging and some people who hold similar views lack the remarkable grace you posses when under fire. Both you and Carrie make your points so well. This means that people like me who aren't so good with words or so clear about meaning can ride on your coat tails. I've met both of you. Two kinder and less narrow-minded people I have yet to meet (with the possible exception of your mother Carrie). Your passionate but reasoned arguments and your clear and remarkable support ARE appreciated. Keep up the good work, but look after yourselves while doing it. Enjoy your crochet Carrie.

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  3. Whoever it was who complained about you two needs to get a life and a backbone. Just sayin.....

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  4. I hope you feel better soon. Head colds can clear up, but unfortunately biased, judgemental, ignorant people sadly tend to stay that way. I wish they would SEE how selfish they are. Do they feel threatened when someone pushes new ideas? Well, it's NOT ABOUT THEM. it's about saving lives.

    i want to thank you, for standing up and continuing to speak out and stand behind the truth no matter how much abuse you have taken for it. I'm sad that people are that low. I'm one of the people whose lives you might be saving in a roundabout way and I greatly appreciate everything you have done. THANK YOU.

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  5. Laura, you have taught me sooo much about communication and listening. I will continue to remember that and use it to help share my knowledge, experience and thoughts with those who seem to think differently. It takes ALOT of practice. Its so hard not to be passionate and even angry at some narrow minded people, be them professionals who can actual do much harm and seem incapable of opening their minds to a different view or experience. BUT, I do believe we are heard. Even if we are NOT acknowledged. And we are growing, as activists and caregivers, I worship the ground you walk on Gandhi-like Laura Collins and I DONT use that term lightly. Only those who know you and what you have done for so many others all over the world could measure the magnitude of your commitment.

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  6. I hope that you feel better soon Laura. I don't know who continues to feel threatened by you and is doing these attacks, but I am one of those parents who fully appreciates all your hard work. Without you, I would never have been able to provide my YA D the help she needed to finally have a chance to recover. This was after ten years of her feeling like a treatment failure, when what she really needed was my support to help feed her and get her weight restored. I, for one, saw how tortured she was in her ED thoughts and how terrifying it was for her to eat. And, how much better she is now that she is accurately and fully weight restored and able to benefit from cognitive behavioral therapy to deal with life's stressors. Please keep speaking up and we all will stand behind you.

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  7. "Finally, in 1992, three years after Galileo Galilei's namesake spacecraft had been launched on its way to Jupiter, the Vatican formally and publicly cleared Galileo of any wrongdoing."

    Your time will come, truth always wins out and the cream rises to the top. The proof is in the recoveries so you can relax and feel confident that you are on the right side.

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  8. The truth will set you free. Keep fighting Laura we are here fighting with you all the way.

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  9. The work of people like you has given me so much hope. Now I finally understand what's wrong with me - a biologically-based brain disorder that I did NOT cause. Do you know how much freedom I feel now, knowing the truth? And now I know better than to expect traditional therapies to be the holy grail that saves me. Now I understand more why, multiple IP stays later, I'm still struggling. It's been a lot of years and a long road, but now I have more hope than I ever did.

    The more I learn from the latest research and folks like you, Carrie, Dr. Ravin, Dr. O'Toole, etc. - the angrier I get with past treatment professionals. I wish they had this information, and I wish they operated by it. But I guess they've been operating by the same paradigm for so long that they don't really know something different.

    Oh, well. *I* know different, and that's just going to have to be enough for me, and I'm going to hope the best for their future patients.

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  10. Laura,

    My daughter is living a normal and full life free of ED because of the brave work that you have done. I am back in the work force because my daughter is healthy. MMy story is repeated hundreds of times by people who have been touched by your work. Keep your head up and keep doing what you do best. No pioneer has blazed a trail unscathed from ferocious detractors. That is what you are my dear a pioneer in the field of ED advocacy and treatment. I love you and send you healing thoughts both for your body and your soul. Axa

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  11. My daughter is alive today because of the work that you and others on the same path have done. We were given a stack of books at the hospital 8 months ago and told to educate ourselves. We have continued to fight her anorexia every day since. We have read, asked questions, sought answers. We hooked up with horrible treatment teams only to be accused of sabotage and non-compliance. But, we have spoken out and walk on our own path since then. It is strong women like you who give me hope and strength to fight when my daughter can not. I am grateful to you and others who have walked this path before me- I know that I am not alone.

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  12. I have an idea of what happened because of a message from Carrie yesterday, and I can only say the same as she has. I don't understand this accusation of narrow mindedness, because you really are one of the most diplomatic and open minded people I know, Laura. And the real miracle is that you don't take that stance because you want to manipulate people into agreeing with you, but because you are genuinely curious, open minded and passionate about communicating with others and hearing their opinions.

    I also owe a great deal of my recovery to you and your work, but that's not why I agree with you on so many points. I agree with you because your opinions are well informed and created from logic and science, not from anecdotes, pride and bias.

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  13. Laura-
    whomever decided that YOU are narrow minded has obviously NOT done their homework!

    nar·row-mind·ed (nr-mndd)
    adj.
    Lacking tolerance, breadth of view, or sympathy; petty.

    Any person who has made their life's work (as you have) to erradicate an illness (an illness of which you have already battled on behalf of your own child, and successfully won!)for the benefit of future sufferers (of whom you did/do not personally know) and with continuing RELENTLESS effort to spread awareness of the SCIENTIFIC BASED EVIDENCE as soon as it is available could not ever be considered lacking in tolerance, breadth of view, petty... and least of all lacking in sympathy! Why on this God's earth would you ever want to stick your neck out (as you most certainly have... and continually) if it were not for the fact that you absolutely, 100% are devoted to wanting a better future for the rest of us! You are a very passionate, unselfish, determined woman, and more than just because you have been a huge part in saving my own daughter's life... if it were not for the sheer determination and passion that you have, there might not be a place for ANY parent to find commonality and reassurance as to what the illness is, and the TRUTH about what works... what saves lives!Don't let other's insecurity (or their inner ED) wreak havoc on your confidence for even a nanosecond! <3

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