Scarlett, I get you.

So, you are a parent out there who has finally reached the top of the infamous "sand hill" and your loved one is really getting better after a difficult illness. It's been hard, you are immensely grateful for the support and information you've had along the way. As relieved and proud as you are of your family and the kindness of your allies, you're also pretty pissed off. WHY did this have to happen and even more important WHY were you given so much crappy information and bad leads at first? WHY hasn't the healthcare system and clinical world caught up with available science? WHY are charlatans able to sell and publish such bad stuff, still?

In other words: you've woken up from crisis mode and you realize that families all over the world are stumbling around in the dark not knowing that there is better information and better ways of doing things and they don't know.

So you want to get involved, you want to be part of improving things for other families. You want to give back, pay it forward, and turn your bad experience into something positive for others.

I love you! Just for being THAT kind of person. Not everyone does, you know. Most families are so exhausted, embittered, self-doubting, and isolated by the time they get their loved one on dry ground that they want nothing but to put the topic in the trash can and back away. Most parents think there's nothing to be done, or that others are doing it. Not all parents find it therapeutic to try to fix what was broken when they came along.

For me, I'm like Scarlett O'Hara getting through the hardest moments of her life by resolving "God as my witness I will never be hungry again. "

I'm gonna be honest, getting out there to make change ain't easy. I have felt humiliated, hurt, offended, condescended to, annoyed, perplexed, despairing, undermined, and misunderstood in nearly equal measure to any sense of accomplishment and success. I have found that it is often my allies who cause me the most sadness, and that simply getting heard is most of the battle.

Again, you didn't ask, but after over a decade here's what I learned:

  • Do it for you. Do it because it heals you to help others. Resist the very natural impulse to do it as a revenge fantasy against those who wronged you or your loved ones.
  • Draw inspiration and perspective from other advocates outside the area you are seeking to change. None of what goes on in our little world is new under the sun.
  • Choose one thing that matters to you and work toward that. Focus is good.
  • Ally with others doing other things.
  • Pay your dues and do your homework. Charging in without understanding the history or the players will make you a tool of dynamics that precede you.
  • Get to know people personally. There is no short cut to this.
  • Follow the Golden Rule with full acceptance that others will not.
  • At some point your closest allies will become your biggest critics. It's okay. If your goal is good, stick with it.
  • Move on when it becomes toxic. When emails make you cry, when you refresh your screen constantly to see if others rally to your defense, when you find yourself back-channelling in anything resembling a whiny tone, do something else.
  • Know your real friends. They are the ones who, regardless of distance, know you as a whole person and not just as a campaigner. They are the ones who you're fine with not being completely in lock step on the issues, and whose opinions you care about without being the end of the world. Don't choose your friends by ideology. Don't lose friends over ideology.
  • When your sense of humor goes, so does your humility, your cognitive flexibility, your view of the forest and not the trees. 
  • Scarlett didn't end up well. She was never hungry again, but man was she miserable and so was everyone around her. Don't let your focus turn you into a one-note, black and white thinking, bitter person in a corner who bites even those who try to hear you. I know a few Scarletts. They don't help the cause.


  1. Love this post!


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