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“To me your story – battling your disease ….is as compelling as his (Louis Zamperini’s) story” Bob Schieffer

Two powerful pieces  – one a short interview with Laura on Face the Nation and another a long piece appearing several years earlier in Elle – demonstrate why Laura, with her very severe ME/CFS, is such a great spokesperson for this disorder.

hillenbrand-laura

Putting the right face on severe ME/CFS

Let’s face it – the very, very ill – the home or bedbound patients – can be too much for the public  or even the medical establishment to properly grasp. The degree of disability in this disorder can be so extreme and unusual as to leave people turning away in shock and probably grasping in desperation at a psychological explanation. That is, after all, the default we as a society tend to go to with unexplained  disorders.

But 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 related to  when they hear ME/CFS.

Laura Hillenbrand Faces the Nation

Hearing Bob Schieffer say to Laura Hillenbrand “I understand a million people have this disease” on Face the Nation sent chills up my spine. Unlike an  earlier interview in which the word “Chronic Fatigue Syndrome” was  left on the cutting floor, Face The Nation allowed both it and myalgic encephalomyelitis to air. Several times in the interview Laura talked about the effects having a severe case of ME/CFS had had.

broken-II

Louis Zamperini felt Laura’s experiences gave her a unique insight into his time at the POW camp

We find, for instance, how much writing Unbroken had taken out of Laura.  Working day in and day out  – she never missed a day –  drained her greatly. “There was a  span of time”, she said,  “two years – while I was working on the book when I was unable to leave the house a single time because I  wasn’t strong enough to  walk out to the car”

She also felt the suffering she’d endured helped her understand what the lead character in Unbroken, Louis Zamperini, went through in the prisoner of war camp.

“I have been in very dark places in my life largely because of this disease. It has given me an understanding  of suffering that I think you can only get firsthand… He (Louis) understood that I knew what he  was talking about. When he was talking about really suffering, I understood …”

 “Unbroken Authors Personal Story of Courage  and Resilience”

“Hillenbrand has her own amazing story of courage and resilience”

The Fox News story starts off talking about Laura’s own heroic  struggle and then relates how  Laura received Zamperini’s purple heart in the mail. Speaking about how she sometimes couldn’t make it out of bed. “It’s that serious” Laura emphasizes, for the many who don’t know.

The Elle Interview

 “I suffered for a short period of time—her suffering is  for life.” Louis Zamperini

Talk about suffering. The Elle story (“Chronic  Fatigue Syndrome: A  Celebrated Author’s  Untold  Tale” ) story on  Laura and ME/CFS from several years ago is one of the most vivid protrayals of a severe case of ME/CFS I’ve read. Focusing mostly Laura’s struggle with ME/CFS, Elle hits it right on the nail when they call ME/CFS “a cruel medical condition with an unfortunate name that fails utterly to do ­justice” to the often debilitating  symptoms it causes.

Laura’s infectious disease specialist, Fred McGill, MD at the NIH states  “It’s very serious. It stops people’s lives.”

Indeed it does. Aside from her husband, her doctor and one social visit, the Elle interviewer was the first person this world famous author had seen in months….

silhouette

Having ME/CFS for Laura in the early years was like living in a different world

Despite the fact that Hillenbrand was pretty much of a jock who loved exerting herself pre-illness, virtually everyone including her child-psychologist mother, virtually abandoned her afterwards – something they all regret now. The isolation was incredible.

“It’s like you go to another place…Like you’re not on this planet anymore” Laura Hillenbrand

As in the Schieffer interview Laura felt her horrific experiences helped her understand Zamperini’s suffering:

“… something I do understand is… suffering to the last point of your ability to tolerate it… What you feel more than anything else in these situations… is an experience of terrible aloneness … and it’s reassuring to see that other people have gone to those places and come back.”

She went through many doctors and we find out some things that didn’t work: steroid hormones, daily vitamin B-12 shots, a gluten-free diet, acupuncture, and Chinese herbal ­remedies, and that some treatments had such a devastatingly negative effect that she’s  very conservative  with  treatments now.  (Laura has apparently found a drug – type unknown – that has helped her since this article was published.) The consequences unproven treatments can have – both at the time and later – on people with severe ME/CFS is a story all in itself.   That limiting down of treatment options because of horrific past experiences is just another facet of having a disorder that gets little research and few clinical trials.

For Laura it’s now mostly about diet, very rigorous pacing and yoga to keep her as fit as possible and for its emotional benefits.

“It’s not just the poses, but also the meditation and learning and applying the philosophy behind it: ­acceptance, living in the moment, focusing on being peaceful, being alive to what is beautiful and good all around me.” Laura Hillenbrand

Ironically, we learn that the wealth Seabiscuit and Unbroken brought Laura has paid few dividends simply because she’s too limited in her activities to enjoy it. Travel, for instance, is out. So is simply going out, for the most part.

While we don’t hear anything about the federal neglect that has made very limited treatment options an inevitability for Laura and many, many others, this article will  quickly tune people to what severe ME/CFS is all about.

The long article hits it’s denouement when the interviewer checks  back with Laura several weeks later to find things  have gone downhill

“”In the last few days, my health has taken a sudden, very sharp downturn, and I’m back to being trapped upstairs. I’m scared to death that I’m sliding into another relapse.  If you happen upon a magic wand, wave it my way.” Laura Hillenbrand

Check  out the article here.

More Media

These stories are great ways to overturn false assumptions about ME/CFS.

Laura Hillenbrand’s Purple Heart – Another good story that mentions ME/CFS and myalgic encephalomyelitis.

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