“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.
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.
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 …”
- Check out the Face the Nation video here
“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….
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.
Great article, Cort!
Laura was featured as Power Player of the Week on Fox News Sunday with Chris Wallace this week. It was an excellent interview, primarily about her illness, and in which the name of her illness was not edited out, but CFS was clearly named. You can find the video at:
http://www.foxnews.com/on-air/fox-news-sunday-chris-wallace/videos#p/158303/v/3963255832001
Thanks!
Christine
I just got it in the blog – thanks to you 🙂
That was a great interview on Face The Nation. What a lovely person Laura is – I’m so happy for all her success. Thanks Cort.
Thank you for being so open about your illness Laura
I have had it about the same amount of time as you and faced many of the same frustrations
Many people in the public eye are afraid to talk about it – I know I have hidden myself and tried to act “normal” when around other people only to have relapse after relapse We needed someone to draw attention to us Thank you again
Carol
Just watched Scieffer interview. Excellent! So thorough!
Having a personal connection to Louis Zamperini made Unbroken so incredibly personal to me, given Laura’s ME and the fact that my dad, who passed away in September, grew up in Torrance and was neighbors with the Zamperini family. Mrs. Zamperini and my grandmother were close friends. When my grandfather abandoned his family during the depression, my father was only 2 years old. My older uncle, who was 12, was left to fend for the family, along with any work my dad and his 5 year old brother could do. Mrs. Zamperini would make huge pots of spagetti and share them with my dad’s family, which not only helped them to survive, but enabled them to stay together as a fsmily. I had the privilege of meeting Mr. Zamperini when my dad invited him as the speaker for an annual Anaheim Chamber prayer breakfast. He was a wonderful man, and a model of endurance in pursuing his passion and of forgiveness.
Laura is an incredibly courageous woman and I consider her a role model of endurance as well, who, though she is very open and honest in speaking about her illness, has not allowed it to define her. She has not only endured but overcome by continuing to pursue her passion by adapting to, even utilizing, her limitations to further her work. I was challenged when she said that, while working on her books, she found a way to work every day, at least to some degree. This is a woman who accepts no excuses for her own life. I can only hope that I will take her example, and those of so many in our ME/CFS community, to reignite my passion and look for a way to fulfill it.
Thanks, again, for the article! The one in Elle was excellent as well.
Christine
What an amazing story Christine. How about that! I grew up in Redondo Beach just to the west of Torrance, by the way 🙂
I DO live in Redondo now…and enjoy reading these comments. I’m new to this blog/website but not new to CFS and Coxsackie B3…
! No kidding. I was near Prospect and PCH – south Redondo. 🙂
How do we capitalize on this free awareness? The news stations that didn’t cut out the illness should get thanks, at the very least. Maybe a huge basket of goods to any news organization that mentioned CFS, thanking them for awareness, and could they please do a follow up story for this debilitating disease? Of course emails, Tweets, any social media would be good. Any suggestions? Thanks for the follow up Cort.
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Please add to this article that the Elle piece is from 2010. I’ve read elsewhere that Laura’s life has changed quite a bit the recent years, 2010 is therefore «old news».
So it is…I didn’t realize that – it came up in a Google search and the date was Dec 10th, I think so I assumed it was from this year.
While her health has improved, I think the fundamentals of her story remain. I edited the piece to indicate it was an earlier interview and that her health has improved.
Cort, the start of this article still says from December, without adding 2010. So there is a second place to fix it. I had missed that article in 2010, glad to find it now, it was well done.
Great article.
I don’t have ME, only fibro, but I can relate to feeling “not of this planet” isolated by extraordinary pain and inability to function.
Laura is a model for me, must be her athletic past…..competitive. Distraction and having a goal keeps one going.
Thanks!
Very true, Shakota, and my wife is also tired of dealing with my pain.
Unfortunately, the person with star power who could publicize fibro, Morgan Freeman, has declined to so.
Does Morgan Freeman have fibro? I have asked the question on here before; are there successful people who have it but have made a success of their life in spite of it? But no-one seems to have been able to name anyone before.
One of the inherent problems is that there is such a high risk of being considered “messed up in the head”, that you tend to keep quiet and try and appear as normal as possible. But this often leads in turn to overdoing it and burning out.
The “pacing” is something I have only recently worked out an appropriate level for, for myself. The problem is that the harm is delayed. You can feel quite proud of yourself when you are making a massive effort and doing something spectacular; but it is the period from 1 day – 5 days later that will really, really tell.
A rule I have now made is that you can do almost anything if you “plod”, and use time as a substitute for actual power output. I have now managed exhilarating hill walks that climb 1100 feet in 4 miles, without after-effects. A year ago, doing exactly the same walk, I put myself out of action for weeks, in terms of ability to do anything beyond sedentary activity. I just wasn’t doing the walk slowly enough. The difference for me is literally doing it in 5 hours versus doing it in 3.
I regard myself as one of the luckier fibro sufferers in that I did have an athletic constitution to start with, which puts the level of what I can sustain higher than otherwise. Plus I have made many important discoveries about how to cope – career change to something less stressful was number one. But it is only in the last year that I have discovered the link between pushing too hard and delayed malaise. It is the delay that makes it so difficult to make the mental connection.
But how can this be applied to people who are extremely debilitated? Can they possibly be actually “doing” something beneficial in terms of building “condition”, for long periods of time, substituting time for power output, and not inducing a relapse of pain, stiffness and fatigue? The idea of gentle movement in a warm hydrotherapy pool really commends itself to me. But you can get waterlogged skin if you do this for hours every day. Is there some kind of support frame that severe CFS sufferers can use as they gently “work out”?
I hypothesize that there is a vicious circle here, of burnout induced by overdoing it, followed by a long period of enforced inactivity, during which the “use it or lose it” effect is making the victim worse still and lowering their threshold for manageable levels of exertion. I think that discovering the threshold and remaining within it, and building one’s condition ever so gently and patiently, is of major importance.
This is why so many sufferers are perfectionist, driven kinds of people. They can’t help themselves, they are forever self-harming by trying to meet the challenge with grit and resolve and refusal to be limited, pushing through the pain and all that kind of thing. This is certainly my story until a few months ago – and I had made a lot of progress due to career change first and foremost; and getting the right massage therapist and a few other important things like regular spas, a routine of gentle stretches, etc. Now I am quietly optimistic that I am onto something of great significance in the pacing aspect.
Plus I continue to try anything – hyperbaric oxygen is the latest thing I have found a treatment facility for in my area.
And I am also quietly optimistic that I am making a breakthrough in terms of a life achievement that I will be able to point to, in terms of “I have fibro and I still did this” – it involves getting published as a writer. Completely different kind of writing to Laura’s, though. I have a number of published essays to my credit already, on housing affordability and urban economics. And this is a hobby for me, not something I have ever qualified in. I have discovered an aptitude for it, that is all. But I don’t think I could handle a degree course.
My actual livelihood that I switched to 13 years ago, very much for the better, is in piano tuning. I love it, and have built up an income to “above average” level with as far as I am concerned, almost nil stress. Especially compared to what I used to do. I have critics of my technical writing who sneer “oh, but he is just a piano tuner”. But I have my defenders as well….
My dream is to be able to live at least a financially secure, normal as possible life by way of making a very high return on the actual effort I am able to put in. This is exactly what Laura has done. I say no wonder she is an amazing writer – every iota of effort you make with a condition like hers, has to be made to count. She is the perfect exemplar of this. When you are travelling slowly, your whole consciousness is working at a far more detailed level than someone for whom the scenery is just rushing by in a blur.
SO MUCH THANKS TO LAURA!!! I know it’s hard to talk about what we cannot do. Family thinks it’s what we WON’T do. Greater awareness will hopefully lead to better funding for research and possibly some family reconciliations!!!
Thank you Cort for the great article. I just viewed Fox News with Chris Wallace and Laura Hillenbrand and it is an excellent interview. I also contacted Fox to thank Mr. Wallace for having Laura and for talking about her illness and how many people are now aware of the illness because of his reporting. If everyone with ME/CFS contacted Fox News they could see how much interest there is and make a special report for CFS. EVERYONE please act on this while it is a hot topic in the media right now! Contact Fox, their form is easy to fill out – have your family and friends contact them too!
Judi– could you post a link for that form? I’ve been looking on the Fox site and can’t figure out where you found it. Sorry if I’m being stupid!
Deirdre, here is a link to the video with Laura Hillenbrand. There is a red bar above the video with Chris Wallace and to the right on the red bar there are icons for fb, twitter, etc. and an envelope. Click on the envelope and it opens a form to contact Fox News about the show with Chris Wallace.
http://www.foxnews.com/on-air/fox-news-sunday-chris-wallace/videos#p/158303/v/3963255832001
Thanks Judi,
It was very easy to comment on the Fox site and I just did. I encourage everyone to leave your thoughts with them. These moments of attention are few. If a network like Fox could be encouraged to do a show on ME/CFS specifically, what a boost that should be for those of us with very few means to be heard.
Thank you, Judi!
Three cheers for Laura! She is so articulate and such a fine writer. We couldn’t ask for a better spokesperson.
I suffered with Chronic Fatigue and mono for 7 years, and went through 3 years of treatment before both totally went away. I urged anyone with these conditions to (1) Find out what caused it and (2) seek alternative treatment. Mine was all due to viruses—mono, Epstein-Barr, pnemonia, strep, chicken pox. I got treatment from the FFC — Fibromyalgia and Fatigue Treatment Centers, and received intravenous anti-viral supplements once a week for 9 months; I eat no sugars or carbs (they feed the viruses), take lots of supplements, and sleep 8 hours a night.I take Lysine (a natural anti-viral) and Vitamins C and D in large doses everyday. They are both completely gone. I know how fortunate I am.
Congratulations! And thanks for being willing to share. Please keep up to date with Health Rising. We’re going to have a recovery stories section coming up. Love to have yours in there.
I am beginning to see some success with weekly IV treatment as well. I am curious about the name and dosage of the intravenous anti-viral supplements you received? Thank you
May I ask what anti-viral supplements are? Different to anti viral medications? Thanks
This reminds me of a controversial (but possibly right) doctor in my own region who is now deceased. He may have been onto something. Dr R. Bruce Duncan. Googling his name brings up the fact that he actually wrote a book with a co-author, on viruses and fibro, which I did not know before.
http://www.amazon.co.uk/R.-Bruce-Duncan/e/B001KHES28
I have his 1993 book but did not know about the 2001 book, very ironically given that I have fibro.
He treated people for numerous conditions, with vaccine injections. By the time I had been diagnosed with fibro, Dr Duncan was no longer practicing otherwise I would have tried him. I knew people who were helped by him.
There seems to be no information online about his co-author, Roberto Patarca Montero, apart from several more books, many of which are also on Fibro and CFS. My own recollection is that Dr Duncan died around 2001, but I can’t find any information online.
Amazon dot DE actually has more information on its page about his writing:
http://www.amazon.de/Cfids-Fibromyalgia-Virus-Allergy-Link-Functional/dp/0789010720
Can you give more specifics on your anti-viral protocol? How much of the supplements and what kind of Anti-viral IV therapy?
Wish her complete wellness soon hugs/blesses 🙂 Is she aware of Dr. Coimbra’s research Neurologist from Sao Palo on M.S. incuding auto immune disorders with vitamin D3 high doses with other vitamins/minerals also Dr. Michael Holick anyway I pray she gets well soon & bounces back to full complete health soon x x God bless her x x 🙂
Cort, thanks for the great article and the links that you provided. Like many here, I’m hoping researchers will be more interested in ME/CFS now so that drug aid may soon come our way.
As Laura stated, yoga, following a strict diet and ‘listening’ to her body (pacing) are all part of the equation that is allowing her health to improve. Nonetheless, its interesting that you note – (Laura has apparently found a drug – type unknown – that has helped her since this article was published.) Is there a reason that we can’t learn what that drug is? Her story has inspired and encouraged so many people so naturally we would want to know what drug she used.
I am going to try to find out what that tantalizing drug is…
Could it possibly have been low-dose naltrexone? I know this article and post was from 4 years ago, but now it seems many with FMS and autoimmune disorders use this drug, some with success. Or possible it is CBD products?
Those are two really good possibilities. It would be nice to know, for sure.
First diagnosed ME/CFS 26yrs ago-8yrs ago private tests show Lyme disease-are virus/bacteria involved in ME-if so could ME/CFS be Lyme disease? ARE ME/CFS/Fibro all related?
Are these tests validated in the health community? If yes, which tests did you have? The Meirleir thinks that almost everybody with ME/CFS have Lyme, i don’t believe that.
Cort,
Excellent article!
To thank “Face The Nation” & Bob Schieffer here’s the link:
http://audienceservices.cbs.com/feedback/feedback.htm
Easy to use, “Choose” Face The Nation”
Laura is raising wonderful awareness, very grateful. Sorry if it sounds I am being a pedant, although LH has certainly been severe at times, I would never describe her as very severe. In my view, Very severe is tube-fed, barely to communicate by speech or text, in terrible pain, in a darkened room. This Happened to my friend
You are correct. Thank you for also confirming this. Some with very severe may be able to talk or eat a bit but likely not at a set time, or always articulately and as you say, sometimes not at all.
Hi Cort,
Is there a “Part I” before this article? I couldn’t find it.
Thanks,
Mary
Mary,
Cort wrote an article a few days before this, and you can find it at http://www.cortjohnson.org/blog/2014/12/20/unbroken-lauren-hillenbrand-talks/
That one pulled good quotes from the article that appeared in the New York Times, by Wyl Hilton.
Sarah
Thank you, Sarah, for this info. I am aware of the previous post, just wasn’t sure it was “part 1”.
Wonder if Dr. De Meirler couldn’t do anything for her?
The Meirleir thinks that everyone with ME/CFS (95%) have Lyme! This docter can’t be taken seriously anymore. Sorry.
Could she be trying Ampligen or GcMaF? I understand her need for privacy with respect to a rather mysterious and experimental treatment, but it might helps others to know. Or, maybe she’s trying a very strong anti-viral…lots of long term side effects, but I know actual ME specialists who try them on their most disabled patients…with care.
Regardless, she’s the best celebrity face and voice the ME (please stop using the confusing, inaccurate, misleading and insulting term CFS…*sigh* Fatigue is a noun while Chronic is a redundant noun for an illness that is already “chronic.” We don’t call MS, “Chronic MS” or Parkinson’s “Chronic Parkinson’s Disease.” Nor, do we call Alzheimer’s, “Chronic ‘Forgetfulness’ Syndrome.” We’re not “tired/fatigued.”
We feel a seemingly indescribable and debilitating/disabling WEAKNESS…like someone is gradually poisoning us…a “sickly weakness” if you will…mixed in with immunological, neurological, etc. issues.
Thank you for the article and to Ms. Hillenbrand for finding the little strength she has to advocate and continue to “live” as best as one can.
Bravo…all around! Don’t lose hope, folks!!
Hi Laura,
You are an amazing person! Have you ever considered that you might have lyme disease. The symptoms sound almost the same. I got it in 2001 and had many of the same symptoms you have. At least lyme is a treatable disease while chronic fatigue isn’t. Do some research on-line to check it out.
Smiles,
Donna Williams
Santa Barbara, CA
The article mentions that Laura has been helped by her current diet, but that she was not helped previously when she followed a gluten free diet. Does anyone know what her nutrition protocol is that has helped ( along with the rigorous pacing, drug and yoga)?
Hi Cort,
Do you know if Laura Hillenbrand subscribes to you blog?
I have no idea…I do know that she saw the earlier on on her – but I think someone alerted her to it. I’ve never communicated with her myself.
I just want to point out that ‘very’ severe ME is usually classed as bedbound. (By this I mean stuck in bed permanently for at least a good few months, sometimees decades). Severe ME is classed as housebound or alnost completely housebound. Although some places it says wheelchair bound which is really quite different if you can do most things including travel but have to be sitting down to having to lie in the dark and be unable to do basic tasks most the day. Many with severe ME have intolerance to light and noise. Some stories in the media do not portray everything correctly but Laura is sitting up straight (and the video includes typing at a computer when describing writing for a book everyday..not dictating etc). I know there are many levels of ME. I feel that those who are unable to stand the lighting levels needed with a TV crew and cannot sit up straight or get dressed or get to their sofa because it makes them too dizzy or they cannot get downstairs are left out here. Laura says she was not able to leave her bed and was worried she would not be able to get downstairs soon sometimes. We all have different levels but I feel this needs pointing out. Very severe ME and severe ME is described on the hfme.org and ayme ability scale. I see Annie has pointed this out too.
I’m sorry but I’m too ill right now to read through all the above replies. Does anyone know what that drug is (“type unknown”) that has helped Laura since Cort’s article? Good lord, we who suffer need to know anything that could possibly help!
Thanks.
Amazing blog.Very informative.
30 minute conversation with Laura Hillenbrand. Practically unedited. They talk about everything, not only ME/CFS.
FoxNews Foxhole. James Rosen.
Rosen says: I found my respondent gracious, sharp, thoughtful and concise, not unpracticed at the business of being interviewed and given only to the merest hints of the kind of fragility one might expect of someone who has battled debilitating illness for so long.
Somebody please tell me Rosen and Hillenbrand pre-discussed the conversation. Laura’s answers were insightful, wide ranging, and thoughtful. I don’t know how she could have done it otherwise. Rosen establishes great rapport also.
am 55 year old male in north Dakota had 2 surgeries and got cfs tried many doctors and many supplements not much help on nexavir now on the 4th month some help any advice anyone have high Epstein bar virus and pesticides doctors think Epstein bar virus is the main reason not much help anyone have any help please thank you JR
Two very good books in their own right. I personally am very inspired by the books(great storytelling and great subject matter),but Laura’s story adds a dimension in that all people have had obstacles and what we do to overcome them defines us. I say God bless you, Laura!