Saturday, April 10, 2010

What about ME?

This is the trailer for a new UK documentary about CFS entitled, "What about ME?"  ME, of course, is a double entendre because it also refers to the UK name for the disease, Myalgic Encephalomyelitis (ME).  As Alison noted over at Blog Wormwood, "sounds much scarier, doesn't it?"

I haven't been able to get the website ( to work, but here is what Alison had to say about the making of this documentary:

On their list of people interviewed, I recognize Dr. Sarah Myhill, Dr. Charles Shepherd, and Anette Whittmore, founder of the Whittmore-Peterson Institute, which funded the groundbreaking XMRV study.

"People are suffering. But they are being told it’s all in the mind. Our aim is to investigate ME further, to put the plight of an ME sufferer in the public’s consciousness and to encourage further research and health policy reform. We hope to spread the word through this website which will have videos and podcasts on ME, short virals on the ME situation delivered multi-platform, a TV documentary aimed at a prime-time audience, a worldwide theatrical release and a docu-drama dramatizing an ME sufferer’s struggle, based on the novel “The State of Me,” by Nasim Marie Jafry."
I'd like to get my hands on that novel, and I really hope that this documentary gets made, because this story needs to be told.  Here's the trailer... it's definitely worth a watch, even if you don't know anything about CFS/ME.

Wednesday, April 7, 2010

Owning My Story

After my diet change, I intended to write a post about what I could and couldn't eat.  I was going to take pictures, make comparisons between my old stand-bys and my new fill-ins, joke about my wine and sugar addictions and my subsequent withdrawal symptoms... you know, the works.

One small problem:  I don't really find it that interesting.

I think that I'm at that phase of my blog journey when I feel the need to define this blog and its purpose.  "This is a health blog," I told myself.  "This is where I blog about my health and all my screwy symptoms and my many doctors.  This is where I find other patients who get it and we talk about how our lives have been changed by health."

But really, I didn't start this blog to talk about my health, or lack thereof.  I started this blog to talk about everything that was affected by my health.  MY LIFE! 

I went to church this past Sunday for Easter and the pastor said a really great thing in prayer that stuck with me.  He told us to thank God for our story, no matter how hard that may seem sometimes.  And just like that, I was able to see my life a little more clearly.  This isn't the end, and it's not the beginning, but it's part of the story, and that's okay.  If God is the author of my story, then I know it will be beautiful.  I just have to trust Him and live my life and own my story!

I've been slowly going through the diaries of Anais Nin, a French author who died in the 1970s, because I just love the way she uses words.  She croons her life story to you.  Anyway, she's training under a psychoanalyst in New York City named Dr. Otto Rank, and she's describing his patients' troubles:

The sick came endlessly, each one who was cured brought father, mother, sister, brother, friend.  They multiplied in an alarming degree.  Was this a new illness, born of our own times?  No time for love, no time for friendship, no time for confidences.

Rank touches all things with the magic of meaning.  Those who come to him are like the blind, the dumb, the deaf.  When he discovers the "plot" of their life, they become interested.  This interest saves them.  This plot created by the unconscious slowly reveals itself to be more interesting than any detective story.  Rank uncovers the links, webs, patterns.  It is endlessly interesting, full of surprises.

Then, after Anais begins to see her own patients, she makes the following remarks:

Analysis accelerates growth, maturity, but changes come more slowly than insight.  The patterns have deep roots and take time to change.

I avoid all clinical language because as a writer I believe language has power.  I also take much trouble to describe each character, each motivation as unique, not to give the patients the feeling of being classified.

Science may heal, but it is the poetic illumination of life which makes my patients fall in love with life, which makes them recover their appetite for it.

This is what the blog is really about for me: falling back in love with my life.  Accepting my story and starting to do a bit of the writing of it myself.  Extracting the meaning from my days so that this time of my life will not have been in vain.

What about you?   If your life story had a genre, what would it be and why?  What would it take for you to fall back in love with your life?

All photos from WeHeartIt.

Sunday, April 4, 2010


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