Wednesday, March 30, 2016


My brother sent me this 10 minute talk by investigative journalist Sheryl Attkisson and it changed my life, and scared the shit out of me. As a person who avidly researches, this floored me. I understand that information is widely manipulated, but I had no idea that it was this bad. It's terrifying, and disgusting, and it makes sense. I hope you find it as interesting as I did, and half as disheartening. Think again about what you think you know, and who you think you can trust.

"In this eye-opening talk, veteran investigative journalist Sharyl Attkisson shows 
how astroturf, or fake grassroots movements funded by political, corporate, 
or other special interests very effectively manipulate and distort media messages."

So what do you do? How can you protect yourself? How do you know what to believe? How much further can you really get with a discerning mind if there's so much conflict of interest, and little disclosure? Sheryl has some tips at the end to help you analyze distorted media.

This is a major issue for me with research studies. There are drug companies that fund studies, or they donate [endowments] to [medical] schools within colleges. It's blatantly a conflict of interest. Everything is so tainted, so tangled. Where's the truth? How is it that our knowledge base that is our researchers, and scientists are so exploited? You could even go as far as say they're bought. It's getting uglier and uglier, and I don't see how people can wade through the sludge to protect themselves. It's just gross.

Friday, March 25, 2016

No Model

A couple of months ago a patient told me that I'm a role model, and it completely freaked me out. That is a ton of responsibility. I don't want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they're going to die too? That we're all doomed? That's how I feel sometimes when tumor friends have recurrences. I don't want that on my hands. What if I just want to eat crap for a year and see what happens? You can't do that if you're a role model. When you're a role model you're held to a higher standard; there's good behaviors that you're supposed to exhibit. You're supposed to lead by example. That's a lot of responsibility, and it's definitely too much stress. I'm not trying to be perfect, I'm just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn't be looked up to. 

A couple of days ago I removed my favorite Buddhist saying and replaced it with this.
I like to think I made it up, but probably not.
Last night, a friend helped me see that I am not other people's stories. That when I help, I don't have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It's easier said than done, but it's a lesson we all have to learn. In life, we connect, even if we don't want to. There's these invisible strings that pull us together spiritually, emotionally, physically, and if you're dealing with heavy stories all the time, you can become tangled. Tied up. And that's where I was, in a balled up mess, until she helped me break loose. 

Someone asked me last summer, "What gifts has cancer given you?" And at first I wanted to blurt out, "A horrible case of paranoia." But then in an epiphany, I saw a slideshow of faces, of all the interesting, caring, brilliant people I've met because of my diagnosis. Many of the people, most actually, who read the blog, don't comment. They're private, but they can somehow relate to what I'm feeling, to what I'm going through. Some have had cancer, others are currently undergoing treatment, and most are healthy, but what I write has struck a chord in them. The biggest shame, is that there are exponentially more people who read this blog than engage. I wish people felt comfortable, and it's my fault for not facilitating it, to comment more, to create dialog not just toward me in private emails, but amongst each other. Maybe people don't realize it's easy to post anonymously, or use a pseudonym. 

I feel strongly that we have to be the change we want to see. And sometimes, eliciting that change is just talking. It's getting the information out there. It's discussion. It's provoking thought. We learn invaluable information from others, and I can't express enough the powerful conversations that I've had between patients. They have altered my view on various things, and helped me evolve. But the conversations are private, and I'm not at liberty to share. If only people could open up, even anonymously, we could all benefit. There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away. The most beautiful thing would be for readers of the blog to begin dialog even with each other. I field so many email questions, but what if a person chose to post a question in the comments, they could do it anonymously, and just see what people suggest for solutions, or just share their knowledge. The more we talk, the more questions will come up, the more problems we could address, the more we could educate ourselves.

I have grown by sharing my story. It has made me a better person. I took a hiatus because I became overwhelmed, but with the right tools, by setting some boundaries, I think I can continue, and be better for it. It sucks, but no one is going to set your limits, you have to do it yourself. Kinda like the dishes. Okay, that was dumb. But, you know what I mean. I could have shriveled away from the blog, and in essence, I did, but it would be a shame for me to lose the magic. It has brought me so much joy, revolutionized my damaged brain, given me hope, and love, and friendship.

Thank you for giving me space, and also encouragement while I was away. The most powerful thing I've heard lately, was, "Your story is enough." I never feel like I do enough, and to be given permission to own that as a fact - that I am enough - was powerful. I'm absorbing it. I hope you can except it for you too.
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