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I am surprised by my ambivalent response to the current media attention paid to Laura Hillenbrand.

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Laura Hillenbrand’s success has brought much needed attention to ME/CFS but also raises some questions

I found her book “Unbroken” riveting; I don’t read much non-fiction, but I loved the way Hillenbrand adopted fiction-like techniques to tell this story. She incorporated such a wealth of meticulous detail into a compelling narrative that became all the more powerful because I kept reminding myself that Louis Zamperini actually survived those ordeals. (In comparison, the movie was disappointing, but that’s usually the case. I rarely like a movie as much as the book it’s based on.)

In addition to appreciating her enormous talent, since I learned about her illness back when she wrote “Seabiscuit” (which I haven’t yet read), I’ve so admired how she overcame debility and pain and vertigo and so many other symptoms to do her work. As Louis himself recognized when he gave her his purple heart, it’s astonishing.  Right now I’m writing this in bed with my computer on my lap and my own struggle with weakness and confusion and brainpain compounds my admiration.

Hillenbrand has become the much-needed and long-anticipated “face” of ME/CFS, in somewhat the way that Rock Hudson opened the public door to AIDS in 1985.  The recent revelations in the major media about her severe ME/CFS have been (mostly) welcomed with the hope that readers and viewers will better understand the depth of our physical and emotional pain. As Cort says, “. . .with Laura you have an articulate, capable and very admired woman who just happens  to have a very severe case  of ME/CFS. You really couldn’t ask for a better face to have the public relate to when they hear ME/CFS. “

What strikes me as particularly fortunate is that readers of The New York Times Magazine section and viewers of Face the Nation will not necessarily be familiar with ME/CFS when they open the paper or turn to CBS.  Usually patients and their caretakers and relatives might seek out or be drawn to such stories. Here, however, general audiences will find themselves learning about the disease within the larger context of the recent publicity focused on Angelina Jolie and her movie version of “Unbroken.” Sure, in a 2003 New Yorker article, Hillenbrand had powerfully described how this illness started and had come to “ruin” her life, and other coverage about her appeared with the publication of her books (i.e., “An Author Escapes from Chronic Fatigue Syndrome” by Tara Parker Pope, The New York Times, 2011) but we all know how much significant attention was paid.  Not much. Now, the aura of Angelina Jolie and Hollywood has descended on Hillenbrand.

So I agree with the very articulate Jennie Spotilla who wrote in her blog “Occupy CFS” that  “Laura’s courage in speaking out has brought more mainstream attention to this disease and its impact on individual lives than anything else in the last ten years. . .That she has chosen to be so public about having ME/CFS is a gift to us all.”

Okay. That’s all good. So what’s this about ambivalence?

My reaction is totally personal and idiosyncratic and is absolutely NOT a criticism of Hillenbrand or the kind of coverage she is receiving.

First. I worry that the public will focus on her amazing ability to rise above (or “escape from”) her daily suffering.  In spite of her descriptions of a mainly housebound life, will healthy people not really get it and assume that the rest of us might (or should) be able to overcome our severe limitations through immersion in some kind of similar life-affirming activity? Besides, how terrible could the illness be if Hillenbrand could do such amazing work? ME/CFS patients know how those without first-hand experience with the disease can so easily dismiss it.

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Carol takes her measuring stick out – an inevitably falls short

This view is based on insidious either-or thinking: We can only hold one belief at a time. You’re either liberal or conservative, good or bad, black or white, too sick to write a book or the opposite — well enough to be well enough. Reality is so much more complicated, more interrelated and interconnected.

The second reason for this ambivalence stems from my own Type-A neuroses, and is hard to confess. Like the judgmental reader I just described, I find myself unhappily measuring my own life against Hillenbrand’s. Damn it. If she can achieve so much, why can’t I?  Instead of lying on my back watching “Orange is the New Black” or marathon-listening to the Serial podcast, why don’t I sit up and actually accomplish something meaningful, something significant?!  Why am I such a slug?

Sure I know the inevitability of crashing but if Hillenbrand can work through that, why can’t I? I know how I denounce myself (“you idiot”) when I fail to pace my activities well enough, but how does she manage?

I try to follow the mantra of self-forgiveness described as a path for everyone but especially for those of us with chronic illnesses. I love Toni Bernhard’s How to be Sick and her very do-able exercises for achieving compassion for oneself and for others in the pursuit of a kind of peace.  Thinking about Hillenbrand, however, can undermine this process for me.  I don’t like these feelings, but they exist.

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Carol switches between punishing herself for not being Laura and forgiving herself for not being Laura

Learning from bad experience the crucial role of pacing in my life, I determined I would prioritize daily survival activities over, say, exercising or writing much beyond these short blogs. So I focus on making dinner one day or doing the laundry, or maybe driving to a local small food co-op to buy a few things, maybe seeing a movie or having dinner out.  I’m usually okay understanding and accepting that I made this choice. When I encounter Hillenbrand’s achievements, however, that understanding and acceptance melt into self-criticism.  Here I am leading the slug-life while she transcends all expectations for what someone with severe ME can accomplish.

Ouch.

So I remind myself of the varieties of possible symptoms and of the different sub-types of ME and of the need to acknowledge and adapt to my limits. I remind myself of my satisfaction after trying a new recipe or finishing a book or even just folding the laundry. And when I remind myself to accept and even respect my negative feelings, I find they lose power. I feel more settled, calm, and in a better place.

I can accept the contradiction: Though the publicity for Laura Hillenbrand is bringing much-needed attention to our disease, it nevertheless causes me to question my own life. At the same time,  though the publicity for Laura Hillenbrand causes me to question my own life, it is bringing much -needed attention to our disease.

Besides, I would admire and enjoy her extraordinary books even if she had never fallen ill with ME. And I’m well aware that, even in my healthiest life, I lacked her talent, determination, and perseverance. The “fire in her belly.”

I suppose this recent flare of attention to ME will just be a flash in the pan (I thought this metaphor came from old-fashioned photography but it’s from muskets – guns that had small pans to hold a gunpowder charge; if the gunpowder flared up without firing, the attempt was called a flash in the pan. Ha. I love etymology and The Urban Dictionary). And maybe only the ME community is paying much attention now anyway.  I hope not.

 

 

 

 

 

 

 

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