Millions will flock to see Unbroken, the film, when it’s released on Christmas day. The book, of course, was written by Laura Hillenbrand, the author of Seabiscuit, who has had a severe and decades-long case of chronic fatigue syndrome.
Admit one – to Louis Zamperini’s and Laura Hillenbrand’s story
It presents a huge opportunity for the public to understand that this is a real illness with severe consequences which can affect anyone – even one of the best known and loved authors in the world. And once you’re caught you’re probably not going to get out of it.
With some of the best medical care in the world an hour’s drive away, Laura Hillenbrand, twenty-seven years after she became ill, remains mostly home bound. All the medical resources in the world, after all, can’t help you when little is known about your disorder.
The Face of ME/CFS – Every Five Years or So.
Laura Hillenbrand clearly doesn’t want to be the everyday face of ME/CFS, but every couple of years, when a book or a movie about a book comes out, she is willing to be very clear about its devastating effects.
In this weekend’s New York Times Magazine (“The Unbreakable Laura Hillenbrand“) and, in particular, in the Washington Post (Laura Hillenbrand releases new book while fighting chronic fatigue syndrome) articles, Laura talks about the disorder frankly and at length. Both present vivid portrayals of the limitations the disorder presents.
“She cannot attend literary festivals, deliver bookstore readings or give library talks and signings. Even the physical act of writing can occasionally stymie her, as the room spins and her brain swims to find words in a cognitive haze. There have been weeks and months — indeed, sometimes years — when the mere effort to lift her hands and write has been all that she can muster.” The Unbreakable Laura Hillenbrand
Not many people go to work to escape a disorder that’s ravaging their bodies, but that’s exactly what Laura does. She finds “a way out” in her characters.
“I’m looking for a way out of here. I can’t have it physically, so I’m going to have it intellectually. It was a beautiful thing to ride Seabiscuit in my imagination. And it’s just fantastic to be there alongside Louie as he’s breaking the NCAA mile record. People at these vigorous moments in their lives – it’s my way of living vicariously.” Laura Hillenbrand
Still Very Broken
“I sent her one of my Purple Hearts. I said, you deserve this more than me.” Louis Zamperini
In some ways, things have changed – Laura’s found new drugs to help suppress some of her worst symptoms – and in many ways it hasn’t. She still has chronic vertigo and is still mostly homebound.
Twenty-seven years later, as Unbroken opens on Christmas day, the medical system is still “broken” for people with ME/CFS
But doctors still don’t study ME./CFS. There are still no drugs for it, and the NIH, incredibly, is still spending about the same paltry amounts on it that it was twenty-seven years ago.
Laura wasn’t taken seriously back then – and the disorder is not being taken seriously now. The effects of that neglect, of course, are immense.
“I was not taken seriously, and that was disastrous,” she said indignantly. “If I’d gotten decent medical care to start out with — or at least emotional support, because I didn’t get that either — could I have gotten better? Would I not be sick 27 years later?” Laura Hillenbrand – The Unbreakable Laura Hillenbrand
Circumstances are somewhat better today but not by much. Other Laura Hillenbrands – young women with seemingly bright futures ahead of them – are having those futures snatched from them every day. They’ re not being taken seriously. They’re not being believed by their families. They’re getting dismissed by their doctors. They’re being told they’re depressed – to just buck up and get out there and exercise – and they’re buying into it, hoping against hope as their bodies are screaming in pain, that somehow the doctors are right. Of course, just like Laura decades ago, they’re getting much worse.
“Energy is finite, and she typically has enough for one activity a day. She is constantly measuring herself, monitoring herself.” Washington Post
It’s deja vu: thirty years later the same scenario is being repeated day in and day out. The system is still … broken.
Almost Unprecedented Success
We don’t hear from Laura very much, but the world should hear about her. She’s not just a popular author – she’s basically “rewriting the book” on what it means to be a successful writer. She’s an outlier in the publishing world. Barnes and Noble bookseller Sallye Leventhal had this to say with regard to Unbroken: “There are other phenomenal best sellers, but not this phenomenal,” she said. “Not with this velocity, year after year after year.”
Few authors have enjoyed the kind of success that Laura Hillenbrand has
The hardcover edition of Unbroken was on the bestseller lists for 185 continuous weeks. It sold so well that her publisher, Random House, waited almost four years before releasing the paperback version. Seabiscuit, her first book, and Unbroken have sold over 10 million copies.
Reset
“I have to detach myself completely from aspirations. I hardly ever listen to music anymore because it arouses all of this yearning in me.” Laura Hillenbrand Washington Post
Laura Hillenbrand’s story not only presents an opportunity to “reset” the image of chronic fatigue syndrome in the public’s eyes, but to give other young women (and men) struggling with dismissal and neglect some understanding of what they’re going through – an understanding that could help them, unlike Laura, perhaps avoid the sinkhole of depression she initially fell into.
Her ME/CFS story needs to be gotten out, but it’s not clear that it is – at least not on a large enough scale. Corrine Blandino, a former athletic trainer who has been mostly home bound for decades, recently asked her nurse – who is very up on chronic fatigue syndrome – whether she was aware that Laura has chronic fatigue syndrome. She didn’t. She knew Laura was ill – but she didn’t know she had ME/CFS.
Let’s get the word out about Laura’s great trial – her struggle with ME/CFS – as the world watches Unbroken
Let’s make it our goal this holiday season to make sure as many people as possible know Laura Hillenbrand has ME/CFS. Let’s also let them know there’s no mystery why she and so many others are still sick decades later. A medical system uninterested in helping her has guaranteed that.
Laura Hillenbrand may be unbroken, but the medical system that should be helping her is broken.
Emailing and sharing on Facebook and Twitter the New York Times and Washington Post articles is a good ways to start. Telling family and friends about Laura’s story as you see the movie is another. Commenting on her and the movie’s Facebook site is another. I compared the story of her travails with ME/CFS to Louis’s travails during the war. Louis Zamperini was tested severely during the war, but afterward his life was a piece of cake compared to Laura’s.
- You can read Laura’s prize-winning 2003 story of how she became ill, “A Sudden Illness” here.
- Check out Jennie Spotila’s recent blog “Laura Hillenbrand is Not Your Bitch! about what happened during the TV interview and more
There are two other writers who come to mind — with regard to CFS/ME — also.
One is, of course, Hillary Johnson who wrote ‘Osler’s Web’ quite a few years ago.
The other is Floyd Skloot. (He is mentioned in Osler’s Web, as I recall.) He is a gifted writer and his daughter Rebecca has become quite successful and famous for her book ‘The Immortal Henrietta Lacks.’)
Have to wonder if it might be possible to ask the three above, plus any others that might be located, to each write a paragraph. Then put the paragraphs into one publication, with the purpose of that eternal request — raising awareness.
Floyd Skloot is a superb and not well know enough ME/CFS author. His story, like so many others is incredible – a marathon runner who wakes up one day in a different world – his brain ravaged probably by some virus. He will never run again. He can hardly walk yet he has come to terms wit h his condition and appears to be a peace.
His Patient 002 novel about the early Ampligen trials is hilarious as well.
Highly recommended 🙂 Thanks for mentioning him.
Thank you for remembering Hillary Johnson and Floyd Skloot as well, although I didn’t know he wrote a book. Thanks for mentioning that Cort. I’ll look for it. This is also a wonderful article about Laura. I almost cried at her quote, “…I hardly ever listen to music anymore because it arouses all of this yearning in me.” I can relate. I enjoy most music but since I LOVED singing in choruses and was also a community choral director, watching choirs or listening to their music is like a dagger through the heart, so I usually avoid it. Laura amazes me – wish I had a fraction of her inner strength. She’s my hero!
Nan,
He’s written more than one book and they are all about ME/CFS…..he’s a very good author and a really nice guy. (I participated in an online book grp and we read Patient 002, and before we started I wrote to him and asked if he would join us. He did.)
That’s really cool! Thanks so much, Tammie. Will look into those. I truly need inspiring stories right now. Won’t go on about how weird my DD health issues have been lately but suffice it to say I need to read about strong people with this DD so I can strive to follow their lead and won’t drop into depression. Hope you and everyone else can enjoy the holidays as much as possible! Thanks again, Cort, for your blog. I know I haven’t agreed with everything written here but mostly do and it gives me hope that so many avenues of research are finally being explored.
It is the same for me. I was a choral singer since the 5th grade. It hurts me to go to church.
So sorry Dana. My piano is still taking up space, just sitting in our office. I should give it away to a family member or anyone who would actually use it but I can’t bring myself to do it yet. I used to sing via a karaoke machine and made tapes for a few funerals and a wedding after the DD. I could never plan to sing live but I could tape and retape until I got something right. One time, at my mother-in-law’s funeral, it was total disaster. For some reason the funeral director forbid me to use my machine and instead insisted on playing my music on an extremely tinny sound system. I cried afterwards, wanting to sound my best for her and also being totally embarrassed. Then again, there were wonderful accoustics in one church and we put the machine in the balcony and it truly sounded live for that wedding. It was the oddest sensation to really hear myself sing like that for the first time but shortly after that I lost my singing voice too and I still can’t get over that loss. I can’t stand to go to church either, so its once in a blue moon. I hope you don’t mind a stranger sending big hugs because its really rough, i know. Sorry this was so long.
I salute your post Cort!
Indeed, let’s spread the name of Laura Hillenbrand’s illness… I still can’t fathom how in the recent TV special they managed to speak twice of her “severe exhaustion and vertigo” without giving an actual name to the illness at hand… Talk about a missed opportunity…
And while we are at it, let’s spread the word of who is really behind this movie!…
A movie about a character whose life speaks directly to what any ME sufferer dreams of (at least this one), not torture of course, but just being able to tough anything out! (and being an Olympian… but “toughing out” anything speaks to me more particularly)
Hillenbrand may not be an “advocate” in a strict sense, but as far as I am concerned, I have never made anyone read a more powerful depiction of the drama than “A sudden illness”. In my early years when I fell ill, making my surrounding read this story did more for me than anything else…So, in my book, she has been an advocate of the best kind.
Thanks Christian 🙂
I just put a mention of “A Sudden Illness” in the post. If anyone hasn’t read it’s an amazing piece. It’s another great way to spread the word on what ME/CFS is like.
(We should probably make a list of these.)
For those who haven’t can read Laura’s prize-winning 2003 story of how she became ill, “A Sudden Illness” here – http://www.newyorker.com/magazine/2003/07/07/a-sudden-illness.
(A subscription to the New Yorker for 12 weeks for $12 is required.)
Christian, I spoke with Laura about why the disease name was not mentioned in the Brokaw interview. Her response is here:
http://www.occupycfs.com/2014/12/22/laura-hillenbrand-is-not-your-bitch/
Thanks for this link, Jennie. I didn’t realize people were blaming Laura for M.E. not being mentioned. I assumed it was the fault of the producers or directors. How sad that anyone could fault Laura.
Perhaps there’s some way to contact Angelina Jolie, she at least purports and seems to be sympathetic to many causes?
Let’s hope she speaks at some point of Hillenbrand’s illness, loud and clear, all the more since she is on her way to the Oscars ultimately thanks to her book! The problem is, as most know, AJ has health issues of her own (THESE were explicitly addressed during the Tom Brokaw interview, as I believe they were also highlighted at the grand premiere of the film in Australia – not that I don’t sympathise with them, far from it). But the end result is kind of unfair: not only AJ seems to be getting all the credit for bringing Zamperini to the world – which is Laura’s accomplishment – but on top of it, the illness threatening AJ is leaving little time and space to speak of Laura’s… The above New York Times article certainly sets the record straight on both points, but still, the massive media coverage AJ could bring for us might not happen, and that is real bummer…
Jolie will get credit or blame for the movie. Hillenbrand still owns the book, and the way to make Zamperini’s story compelling. The author of the NY Times piece did not talk much about the movie — but he remarks how a a movie might make the story unbearably negative and a downer, where LH’s writing breaks it up, in the way real life has it moments of relief.
By the way, the entire NY Times article was posted to Co Cure, every word but not the photos.
Sarah
We just watched the interview tonight, and although there were many good things about it, I felt EXACTLY the same way. Although a lot of good things were said about Laura, she was short-changed, secondary to Jolie, and then not mentioning the name of our disorder, just extreme fatigue and vertigo, was depressing. Can you imagine Michael J Fox being interviewed and there being a mention of a condition that causes movement to be difficult for him without mentioning he has Parkinson’s? How stupid would THAT be? Ditto for the vertigo/exhaustion depiction. And yes, AJ has been through a lot with her surgery and upcoming surgery, but its nothing compared to Laura’s chronic suffering. Give me a break. Jolie was talked about far more than Louie, too, especially towards the end of the interview. She has done a lot to call attention to world poverty etc., so I DO admire her, but it just seemed a bit much in an interview meant to highlight Louis and HELLO…..who wrote the book that made the movie possible? – LAURA, not Angelina!
Check out Jennie Spotila’s blog today in which Laura explains that she talked about ME/CFS a lot during the two hour interview and they cut most of it out – http://www.occupycfs.com/2014/12/22/laura-hillenbrand-is-not-your-bitch/
Right Cort, thanks – I just saw that. I would never blame Laura. Its just too bad the name was cut.
Thanks Cort for writing this. We do all understand what Laura goes through to write two best selling books is awesome. Thank you Laura for your wonderful books. I know about losing myself in something, I can do it cooking.
We will be away for Christmas but hope we can see the movie that day when it comes out.
Thank you too Cort for keeping us informed of the latest going on in our world.
Merry Christmas and Happy New Year to all.
There are several studies going on so maybe this will be our year!
This is going to be the year of big, big studies 🙂
“I have to detach myself completely from aspirations,” Hillenbrand says, discussing how she has learned to cope with her illness. “I hardly ever listen to music anymore because it arouses all of this yearning in me.” She numbs herself to the things she cannot have.
This is from the Washington Post article. So glad you saw these articles, Cort!
Thanks Shakota – I just put that quote in the article. 🙂
Read the NY Times article a couple days ago and was so sorry to hear about Laura’s separation. I was surprised that she could have a muscular physique with her level of fatigue. I wonder if Angelina Jolie could use the movie to bring some awareness to CFIDS….. Another wonderful book is Roger King’s “Love and Fatigue in America.”
That was a great article. I totally understand that Laura doesn’t want, or have the health, to be a big spokesperson re this illness, but it does seem like someone involved with the movie (like Angelina) could somehow use this to help spread more awareness and fund raising for us. This is such a huge opportunity, and we don’t get those! It would stink for it to be allowed to just go to waste.
I imagine it’s yoga and very short duration weight bearing exercises..
On the other hand she may just be that way. An ex-girlfriend was built like an Amazon – she had calves you would not believe – calves some men would have died for – but got hardly no exercise because of her back problems.
It was all genetics!
Good work Cort!
Thanks Mike!
Laura Hilderbrand is a godsend, a hero and a comfort to all who live with ME/CFS.
Yes, Laura Hillenbrand is remarkable. And, Cort is, too. For you have pulled off what appears the impossible for so many of us who strive each and every day — yet, our small achievements are derided and dismissed and our wounds grow deeper.
ME/CFS, and the many conditions associated with it, steal hope when we need it most. It leaves us nearly abandoned to pull ourselves up by our own strength: after all, didn’t some or most of us have fabulously successful careers, lifestyles, attitudes, academic or athletic or at least potential at one time? We could do anything we set our minds to achieving, very nearly. And, we could bounce back after defeat until we simply could not.
Making Laura our spokeswomen may backfire. Could be it that if this remarkable author can achieve roaring success in spite of debilitating circumstances — that it will be assumed that all the rest of us can, too? Isn’t that putting more pressure on ourselves?
I was a writer for a very prestigious international PR and marketing firm for 17 years before this CFS/Fibro and immune deficiency bought me to my knees. A very dear colleague immediately set me the book Seabiscuit and recommended that I follow Ms. Hillenbrand’s footsteps. Oh. But, I also have a daughter with medical mystery illnesses and my mother was dying of cancer. How could I stretch my limits to raise beyond and above my personal circumstances? It turned out that most of my professional friends held the same belief: and, so on top of all else, I became a failure in their eyes by not trying hard enough.
I struggled on for years before admitting that I had to apply for disability.
Perhaps, she is being compassionate by not rising the bar so impossibly high for the rest of us.
I believe awareness initiates action. I don’t have a better solution. I know I just don’t have what it takes right now to write a best-selling novel.
If I’m being petty, please forgive me. I want to live well. And, I applaud the success of those who achieve in spite of everything.
This is a good issue Kym. It’s a question that is inevitably going to be raised and I don’t have a good answer for it.
My only response is that Laura Hillenbrand is – whether she’s healthy or ill – an unusually gifted person. She’s an outlier – like Beethoven was – who managed to produce his best music when he was deaf. Anyone who compares themselves to people like that is going to end up short.
If you read the New York Times article you’ll see her first editor state that Seabiscuit, 15 or so years later, is still the best book draft he’s ever read. That was the first book she had ever written – and it is still the best book draft to come across his desk! He’s still waiting for another Laura Hillenbrand to show up.
There are other things as well. Because she was married but had no children she had three things going for her – she had someone to support her, she was isolated (good for a writer) and she could devote herself entirely to writing. Think how many people gifts are hidden by their circumstances – the need to take care of others – to grind it out in dreary day job or whatever.
I think of that too — could I write? Though I did write in my career, once disabled, I lost that. The writing in my career was technical writing, not the kind people want to buy in a book store.
The real lesson of Laura Hillenbrand is what her husband said when her first book was an instant bets seller — see, this disease is real, not in her mind.
And that is what we all get from her, the legitimacy, the chipping away at the hypochondria taint that the Wesselys of this world insist on attaching to us.
So, if anyone else says, hey, why don’t you write a best seller, too?, tell them that her success proves your disease is a real disease.
Sarah
I get what your saying, this illness is not a mind over matter situation. There is no overcoming this illness, you do the best you can, day to day, that’s it. I am in fact, broken, like so many of us.
Laura Hilderbrand knows firsthand how Me/CFS sufferers fight a daily battle, raging war within our bodies that works against itself some for decades. She gives us hope and inspiration, where in its parallel, the story of Louie, who so graciously gave his purple heart to her, resonated with the meaning of being an “unbroken” soldier.
Surely the movie speaks to the unbreakable will and spirit of overcoming adversity and will encourage all who see it. Gratitude to the courageous Laura, Louie, and to Angelina Jolie for bringing this story to the pages and screen.
Let’s hope that Laura continues to speak about her struggle with these conditions and ushers in 2015 with being a courageous beacon and the catalyst for furthering awareness about CFS/Me.
Thank you Cort for always bringing us together with the most current and trustworthy posts, you too are an unsung hero shedding light into all of our lives.
Astonishing is the only word for what Laura has accomplished. She’s a major author – one of our finest authors – and somehow she’s been able to accomplish that with all this other stuff – the vertigo, the lack of energy and god knows what else – getting in the way. I can understand someone writing a book with severe ME/CFS – but writing two of the best books to appear in the last ten years ? That’s a mind-boggler….
Comparing Laura to the probably the best Classical composer ever – Beethoven – is admittedly a stretch, but Beethoven composed most of his great music after he was deaf (but other wise healthy. It’s amazing what some people can do. Beethoven was definitely borne to write music and I as I think Laura stated at some point – she was borne to write stories.
That is a very good point about Beethoven. But I think it is fair to say that any already-great composer can continue to compose music in their head and write it down, if they become deaf. But two of them, Schumann and Smetana, definitely became mentally unhinged in the process and ceased to do their work. Beethoven probably was mentally affected in many ways too but managed to overcome it to continue to pour out some of the greatest music of all time.
I think there is an element of mental strength involved in continuing to fight and self-help in ME/CFS/fibro too – but we need to feel all the more genuinely sorry for people born with a fragile nervous system as well as ending up stricken in their physical health. The fact that some people remain fighters, is evidence that it is not just the nervously fragile and weak-minded who succumb to these problems. But the problem with “being a fighter” with these problems, is that this is self-harming – it takes real mental sophistication and resolve to discover the pathway of self-care and pacing and rationing of effort, to be able to get anywhere. More on that below!
Discovering your gift and your life opening AFTER all this, is something different to knowing what it was all along and not giving up on it. ME/CFS/fibro might just constrain and redirect you into finding something you might not have found otherwise. Part of the “cure” for fibro at least, is abandoning any livelihood that is inherently stressful – and that can include a lot of sedentary jobs. Possibly more so than with physically action-packed jobs.
I agree completely with this “it takes real mental sophistication and resolve to discover the pathway of self-care and pacing and rationing of effort, to be able to get anywhere.”
Excellent suggestions, Cort.
Another ME/CFS writer/book is Dorothy Wall’s Encounters with the Invisible.
Yes, indeed – my favorite ME/CFS book. And what, I wonder, is going on with Dorothy these days?
Dorothy Wall website:
http://www.dorothywall.com/bio.html
I keep putting this out there but get no response back. If I can get someone to organize medical paper work and case studies then I can try to get financial help from movie stars and philanthropists and get the money we need to beat this disease. I have executive skill issues but can make things happen if I get help. I have asked about this on Corts site about 5 times and never get a response back. I’m not sure why. Cort can you help me with this so we can finally beat this disease or refer me to someone who will help me please. I’m sorry people but I have been suffering for soooo many years with this disease. I don’t want to complain about who is not helping anymore. I want to find people that can help. PLEASE SOME one RESPOND. WE NEED RECOGNITION AND BIG MONEY. WHAT ARE WE WAITING FOR??????? HELP ME TO HELP US ALL>
REGARDS
JIM JALITE@COMCAST.NET should not be capitalized lower case
Just wanted to say thanks for trying to help us. I think one of the problems is that many of us have brain fog. For me, it’s hard to form a sentence many days…so not very easy to communicate back and forth.
Try The Open Medicine Foundation. They have a pretty good research team.
It’s hard for all of us Jim – including me – to embark on a big effort like that. I’m just trying to stay abreast of what’s going on now. If it works though it would be well worth it.
Here’s the article free:
A-Sudden-Illness-How-My-Life-Changed-Ken-Wilber.pdf
A Sudden Illness — How My Life Changed
by Laura Hillenbrand
We were in Linc’s car, an aging yellow Mercedes sedan, big and steady, with slippery blond seats
and a deep, strumming idle. Lincoln called it Dr. Diesel. It was a Sunday night, March 22, 1987,
nine-thirty. Rural Ohio was a smooth continuity of silence and darkness, except for a faintly
golden seam where land met sky ahead, promising light and people and sound just beyond the
tree line.
We were on our way back to Kenyon College after spring break. Linc, my best friend, was driving,
his arm easy over the wheel. My boyfriend, Borden, sat behind him. I rode shotgun, a rose from
Borden on my lap. Slung over my arm was a 1940s taffeta ball gown I had bought for $20 at a
thrift shop. I was 19.
The conversation had dropped off. I was making plans for the dress and for my coming junior
year abroad at the University of Edinburgh. My eyes strayed along the right shoulder of the road:
a white mailbox, the timid glint of an abandoned pick-up’s tail-light. The pavement racing under
the car was gunmetal gray. We were doing 50 mph or so. A balled-up bag from a drive-through
burger joint bumped against my ankle.
A deer.
At first, he was only a suggestion of an animal, emerging from the darkness by degrees: a
muzzle, a sharp left eye. Then the headlights grasped him.
He was massive — a web of antlers over his head, a heavy barrel, round haunches lifting him
from the downward slope of the highway apron. Briefly, his forehooves rested on the line between
the shoulder and the highway. I saw his knee bending, the hoof lifting: he was stepping into the
car’s path.
In the instant that I spent waiting for the deer to roll up over the car’s hood and crash through the
windshield I was aware of my body warm in the seat, Linc’s face lit by the dash, Borden breathing
in the back, the cool sulfur glow of the car’s interior, the salty smell of the burger bag. I watched
the deer’s knee and waited for it to straighten. I drew a sharp breath.
The bumper missed the deer’s chest by an inch, maybe two. The animal’s muzzle passed so
close that I could see the swirl of hair around his nostrils. Then he was gone behind us.
I blinked at the road. My eyes caught something else. A brilliant light appeared through the top of
the windshield and arced straight ahead of the car at terrific speed. It was a meteor. It burned
through the rising light of the horizon and vanished in the black place above the road and below
the sky.
My breath escaped in a rush. I turned toward Linc to share my amazement. He was as loose as
he had been, his eyes slowly panning the road, his long body unfolding over the seat. I looked
back at Borden and could just make out his face. They had seen nothing.
I was about to speak when an intense wave of nausea surged through me. The smell from the
bag on the floor was suddenly sickening. I wrapped my arms over my stomach and slid down in
Thanks – I put the link on the blog
I was perplexed and saddened when during the NBC”s interview of Angelina Jolie’s movie Unbroken, neither Laura Hillenbrand , Tom Brokaw, nor Angelina Jolie mentioned the name of the disease— Chronic Fatigue Syndrome. WHY? Who made the decision not to name it—the network, Laura Hillenbrand, or Angelina Jolie? This was a wonderful opportunity to help legitimize Chronic Fatigue Syndrome as a disease, and yet—as usual the system has failed us. I hope cfs organizations higher up on the spectrum than I am, can help push for an answer to my question.
It was missed opportunity, for sure. That was painful! Since Laura has been very willing to speak about ME/CFS I can only guess that the decision was someone else’s.
The New York Times, thankfully, has been interested in Laura’s illness and in general ME/CFS and that Washington Post article was great. I hope more media outlets are interested in the parallel story – Laura’s long struggle with her illness – and maybe even the lack of funding for it.
In fact it turned out to the network’s decision.
Check out Jennie Spotila’s blog today in which Laura explains that she talked about ME/CFS a lot during the two hour interview and they cut most of it out – http://www.occupycfs.com/2014/12/22/laura-hillenbrand-is-not-your-bitch/
I have had CFS/EBV for years although I didn’t get officially diagnosed until this year. This disease has taken so much. I was an advertising exec as I began to get sicker and sicker, I found myself suddenly having to take huge steps back in my career which was devastating. I got profoundly ill last year and have been from doctor to doctor, dismissed, marginalized and told it was all in my head. This disease has cost me friendships as I am pretty much home bound, I can no longer clean my house, cook (which was my first love), travel, and much like Laura, I try not to watch things or listen to things that dare me to dream because I know I am not able to do so many things I had dreamed about let alone conduct my daily life. I am currently embroiled in a battle with Short Term and Long Term disability who treat me like I am a liar even though I am lucky enough to be less than an hour from one of the nation’s experts on this disease and he’s treating me and I pray with everything I have that I am well enough to be a whole person again. I feel like a prisoner. A prisoner in a body that does not work anymore, A prisoner in my home because I can’t go anywhere, a prisoner of the insurance company due to their denying my disease as valid ( I had to hire a lawyer), And a prisoner because I have lost friends and get ignored by family because they just don’t understand. Someone needs to be a voice for us.. All of us who have been dismissed, marginalized and ignored by the medical community… All of us who are trapped inside a body that is afraid to dream, All of us who battle this every day alone, afraid and losing hope. I pray someone out there becomes this voice. We need to be heard. We deserve to be heard…
I can’t imagine how anyone who takes the time to get to know about ME/CFS and the sometimes horrific problems can’t helped being very touched and disturbed.
I emailed the article to friends, family and my DOCTORS. I printed it so I can give it to doctors I couldn’t email it to. I don’t think anyone realizes how bad this illness can get.
What stunned me were the many negative comments that accused Laura of not being sick, but being a “neurotic, crazy, etc. woman.” I wrote two responses.
If comments are still open, please make one. The N.Y.Times has been very sympathetic and has published good articles about CFS. They notice how many comments and emails an article gets.
I loved her books – I’ve read both “Seabiscuit” and “Unbroken”. The really encouraging thing about her is that she proves that despite cognitive impairment, it’s still possible to accomplish intellectually challenging tasks. I am not as sick as Laura – I’ve been able to work full time for years, but with great difficulty. I’d like to think that I’m the same old me except for those frequent periods when the illness flares into debilitating headaches, malaise and fatigue. Yet, I know that the Stanford brain scans show alteration, and the Japanese studies show brain inflammation. Fear of the unknown only adds to the misery and humiliation of this disease.
Here is a link to the posting on Co Cure of the text of Hylton’s article, The Unbreakable Laura Hillenbrand
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1412C&L=CO-CURE&P=R1482&I=-3&d=No+Match%3BMatch%3BMatches
If you are signed up for Co-Cure, the article was posted by Tate Mitchell on Dec 18 or 19, and came in the Daily Digest (the way I get Co-Cure posts) of that date
CO-CURE Digest – 18 Dec 2014 to 19 Dec 2014 (#2014-298)
Sarah
I say congratulations to Laura for all that she’s accomplished and I think our crowd can appreciate her efforts more than anyone, knowing what it takes to move forward with any project with compromised health.
If she wishes to be a spokesperson for this illness to any extent, then terrific. If not, I don’t think it is her obligation for a multitude of reasons including not having the energy to be in the spotlight. I hope she enjoys great success. Nothing attracts attention like success and hopefully someone will find HER story to be compelling to tell to a wide audience. And that of course will be to the benefit of everyone else suffering from this horrid illness.
Consider the case of someone who wrote only one book in their career about 60 years ago and has shunned the spotlight completely. Yet how many people would be tripping over themselves even today if Harper Lee indicated she wanted to give an interview.
Perhaps Laura has not wanted to detract from the story of Louie by raising the banner of CFS at this time. But I think that the more people are interested in this movie, the more they will be interested in Laura and her story. Carry on Laura and thanks for what you do.
I was/am a writer, too. When I became sick with this thing after a bout with pneumonia 24 years ago, I was a full-time newspaper reporter with a 2-year-old son and 6-year-old daughter. I managed to keep my job for a while by writing about the disease. I wrote a series for my paper about going to North Carolina to interview (and be diagnosed by) Dr. Lapp. Eventually, I was pushed out of my job, partly because I didn’t have the energy to keep fighting for understanding from local doctors, my employer, etc. My husband was sympathetic and supportive, even though the decision hurt our family finances. (I was the main breadwinner.)
This disease pretty much robbed me of everything except my family. Of course, I wouldn’t have traded my husband or kids for health and success, but it would have been nice to have had all three. Interestingly enough, both of my children have turned out to be caring young adults with professional careers. I like to think my illness taught them to be more sensitive to other people. They also knew they had to work hard, because I didn’t have the money or energy to pave the way for them.
Anyway, I have tremendous admiration for Laura, Cort and others who have accomplished so much despite being sick. I wish I could have done more, although I still struggle every day helping my husband with his business and trying to write.
Sorry for going on so long! I haven’t really talked to anyone about this for years. It’s nice to communicate with others who are going through the same experience. I hope you all manage to enjoy the holidays.
Here is a copy of “A Sudden Illness” essay by Laura. I read the original article and printed it, This is the same story. http://www.kenwilber.com/Writings/PDF/A_Sudden_Illness.pdf
Thanks for posting this link, Jane.
The essay had been kept at cfids-cab, a link I used in 2013 with success, but the link did not work this week. I sent a note to the successor of The CFIDS Association of America to learn if they were keeping up those archives. There are other things of value to me in those archives, besides this most important article. I wonder if I will get a reply.
I have the printed copy of the magazine, so precious. With the artwork of the taffeta gown, later stolen by a supposed helper. But I like having it online, as well.
Reading about advanced ME/CFS victims make me feel my fibromyalgia is not so bad after all. I would love to know – does Fibromyalgia have a Lauren Hillebrand/ Floyd Skloot/ Hilary Johnson? Is fibromyalgia sufficiently non-debilitating that some already well known successful people have it without us even knowing? It is knowing about others that really helps, and knowing “how” they did it.
But there are definitely parallels between this story and my fibro one; the absence of understanding and sympathy; the accusations of malingering, and the “all in the mind” ones; the self-flagellation to try and keep measuring up regardless; the ever-worsening symptoms and eventual collapse, quitting the job, and withdrawal from normal social life.
The “detachment from aspirations” – this brought tears to my eyes, and the “can’t listen to music any more”. For me, for years, it was the kind of music that changed. I am an amateur musicologist with a wide knowledge of music and always say there is something for every mood. My mother would say, “that sounds horrible”. I would reply, “I feel horrible”. The music that completely “fit” my mood, was the gloomy sounding works of obscure British early 20th-century composers – Peter Warlock’s “The Curlew”; Frank Bridge’s Piano Sonata; Constant Lambert’s “Adieu, Farewell All Bliss”. I still think this is cathartic rather than further repressing. Maybe people who do not have a broad knowledge of music, lack this sort of “self-treatment” outlet.
The lush romantic compositions of the similar era in Britain were what I found actually relaxing – Delius, Finzi, Vaughan Williams, Ireland, Moeran etc. Slightly gloomy and pastoral.
I also was still into post-WW2 cool jazz, like Miles Davis, Gil Evans and Bill Evans – especially the “modal” stuff.
There is a proverb that says “As he that taketh away a garment in cold weather, and as vinegar upon nitre, so is he that singeth songs to a sad heart”. But it is happy music like Schubert and Johann Strauss that I could not stand; or country hoedown music or Celtic jigs (Celtic tearjerkers like “The Fields of Athenry” are all right :-))
I remain an unrepentant despiser of heavy metal and rap music – they are definitely not my poison of choice! If I want to express a little fireworks, it will be Arvo Part’s “Nekrolog”, Olivier Messaien’s “Par Lui tout a ete fait”, the Storm fugue from Gershwin’s “Porgy and Bess”, and that sort of thing.
But the discovery of “pacing” and rationing oneself and achieving more, slowly and patiently, rather than doing it in spurts and crashes, is an important stage. And discovering what I call “the middle finger life app” – just looking after yourself and too bad what the hard bastards say. It is not self-pampering, it is “staying functional at all”.
I believe it is through a path somewhat like this, that one can become an achiever of sorts once more. Write a best-selling novel? Might not be my particular gift. But I might achieve a “medium-sized” breakthrough pretty soon (which would be “big” for someone like me), things are happening in more than one field I have discovered I have a particular gift for. Writing is part of it, but not fiction. You actually start to focus on “returns for effort” in your life, instead of “effort” itself – because you are forced to. I have mentioned before that I changed my career to piano tuning – which has been excellent for return on effort – minimum stress, reasonable enjoyment, reasonable “professional” charge-out rate for time. This I regard as part of “the cure”. Then one can start dreaming higher, especially with one’s mind freed from the daily stressors of office politics or whatever it was that helped destroy you in the first place.
Wonderful comment Phil – particularly for me, a classical music lover. Thanks for mentioning some British composers bscure British early 20th-century composers – Peter Warlock’s “The Curlew”; Frank Bridge’s Piano Sonata; Constant Lambert’s “Adieu, Farewell All Bliss” – I’m not very familiar with.
I agree the romantic English composers, who I do not know well (Delius, Finzi, Vaughan Williams, Ireland, Moeran etc.) produce almost uniquely relaxing and lush music. I’ve listened to more Dvorak but I think he’s less lush and more bouncy. Maybe I’ll visit those English composers after all.
I too tend to find “darker” music more fulfilling. Bach’s cantata’s – all 60 discs of them 🙂 – fit the bill nicely. I love Haydn as well, though – not thought of as a dark composer – but so interesting and his slow movement can be heartbreaking. ( I’m going through the string quartets now). There’s also something about the simplicity of lieder – including many of Schuberts songs, Schumann, Wolf and others – just the piano and the voice – very restful and moving.
Thanks for your comment! 🙂
Big agreement from me on the Bach – and a lot of the organ and keyboard works in minor keys, especially the fugues!
I play piano myself and if there is one thing I have NEVER been so low that I could not play, it is the minor-key fugues from the famous “48”.
Along with these, Federico Mompou’s plaintive miniature piano pieces never let me down. And sometimes, I will turn to Gabriel Faure’s later piano compositions.
I agree on the darker German lieder – and put Brahms at the top for me – but the happy tinkly major-key ones don’t do much for me. Those British composers who are favourites of mine do wonderful dark art songs. Thousands of them, in fact. The most contemporary poetry most popular with composers in the early 20th century in Britain, was the gloomy stuff from A E Housman (“A Shropshire Lad” etc). And with English language art song, especially with the more modern poetry, you get the point so much more. Actually some of the American composers at the same time, caught a bit of the same mood, and set Housman, Hardy, Keats, Joyce etc – Irish poets feature heavily in this era and genre too. And the “Celtic” influence on the music itself is often considerable, with there being close similarity between the many fine arrangements by noted composers, of Celtic folk music, and some of the original compositions.
Thanks – again didn’t know about the lieder from the British composers and I look forward to digging into them at some point.
Bach’s organ music is his only music that has defeated me. I tried for a couple of months and I will try again. Everything else from him is wonderful .
I was itching to jump in on that subject but felt bad about digressing so I waited a bit…Thank you Phil and Cort for bringing it up!
I too prefer the dark side in music…
You want a dark German lieder? Try “Im Treibhaus”, by a composer whose name is synonymous with egomania…but WHAT a lieder that is…
I am also keen on piano, and dark+piano= Rachmaninov! The opening bars of his second piano cto are hard to resist, he wrote that as he was emerging from a two year plunge into depression. Some are saturated with that piece, in which case I recommend his piano trio no 2 in d minor, even darker still. The abyss…Incredibly moving, written for Tchailkovski’s death I think.
Bach?!… If you don’t believe in God, but what to hear something that sounds like him, – the opening of the Saint-Matthew Passion… For me this is as grandiose and sublime and tragic as music can get. Go for Klemperer’s version, his tempo is sooooo slow and painful! Most other conductors go too fast.
From Bach, I also love…everything else!
But as far as “dark” goes, let’s also mention in passing the prelude of his cello suite no 5 in c minor… What a piece…
English and dark? – My first pick is Henry Purcell’s aria “When I am laid in earth”…
The sum of all human suffering, but somehow wrapped in serenity? – The adagietto of Mahler’s fifth symphony.
Beethoven…. If I had to choose between his late string quartets or his late sonatas, it would be heartbreaking for me…When my tinnitus is driving me nuts, and away from my piano whose sound then aggravates me, but still can’t resist the temptation, I play the first chords of the last mvt of op.111 – his very last sonata. Whether you are deaf of prey to heavy ear ringing, you still hear “eternity” in these chords…
I don’t know where to stop…(and I better not start with Chopin)
So, needless to say, I too felt a VERY strong affinity with Hillenbrand’s quote on how she “fears” the effect of music. When I think of all I have lost, career, social life, family life, sports and hobbies, I am surprised that I don’t cry more often.
But, listening to beautiful music can become dangerous…!
Didn’t know Wagner wrote Lieder. Last year, I think it was – Wagner’s anniversary – I went through all his operas (starting with the Dutchman..) What an experience!
I’ll have to check Rach out – haven’t heard much from him. Agree on solo cello suites – very difficult but once you get them – so moving…what an unusual artist he was!
Love Beethoven’s sonatas but I’m missing the string quartets – maybe after Haydn…
Ah Chopin! I can just sink into Chopin!
I love the lushness of some of Strauss’s stuff as well- you can just flow with it – so beautiful……
If you haven’t check out Anne Sophie Von Otter – any of the lieder does is fantastic…
Agree on Rachmaninov – and not just his piano music either – the art songs and other vocal works are magnificently feeling.
That is a good point, that “English and dark” goes back way before the 20th century. Try John Dowland! “In darkness let me dwell”, “Flow my tears”, “Lachrymae”, etc
But take my word for it – obscure British composers of the early 20th century took “lachrymose” to an all time peak. It is interesting that they had such a long heritage of antecedents in this. Peter Warlock’s “The Curlew” is on YouTube with several people putting their own series of chosen images to it. The cello line is often reminiscent of Purcell. But with many more devices in music post-Purcell included.
There is a long intro before the vocal soloist starts, and the buildup to and launching into the actual sung lyrics is masterly. Then there is 20 minutes of magnificent sustaining of the mood of “sublime depression” as one musicologist put it, along with genuine musical substance and interest. I am among those who think it one of the 20th century’s greatest works, for all its obscurity.
I got to this link by “falling into a black hole on “teh interwebs” but am glad that I did, to see this discussion! I look forward to re-reading on a day my brain is working better.
You music lovers might enjoy the recent novel by Richard Powers, “Orfeo.” (Another of his novels, “Plowing the Dark,” had a sensitive portrayal of a composer with MS, that was meaningful to me.)
A lieder presented in “Orfeo” has become a favorite for me, from Mahler’s “Kindertotenlieder,” “In diesem Wetter.” Some might find it sentimental, but it speaks to me.
Also online, is a video of an amazing event:
http://www.centerforfiction.org/calendar/notes-on-fiction-orfeo-by-richard-powers
Thanks again for the posts, and Cort for all your hard work here!
Thanks Pearl – I’m definitely going to check out Orfeo – thanks!
Does Laura mention what drugs have helped her?
Unfortunately not – or rather if she did – it didn’t get into the article.
I am reading the comments about Laura Hillenbrand and shocked by the lack of concern that there is a continuing missed opportunity exhibited in her failure to speak more vocally as an advocate for all of us and express outrage at the failure of the medical community and government to tackle the causes of autoimmune disease in women and ME. I think Ms. Hillenbrand could make her interviews such as the one she did with Brokaw conditional on her ability to speak out about the illness. I e-mailed Brokaw, Ms. Hillenbrand’s editor and the author of the NYTimes article to state that the media has failed to give the story attention and thus millions of us are suffering in silence without lives, hope, or access to doctors who care in the least. One person suggested we flood Angelie Jolie with e-mails asking that she and the Coen brothers donate the proceeds from the movie to research. Rather than discussing the lack of funding, we should be organizing and I don’t see this forum as providing the leadership we need to do a simple thing such as flood Jolie with e-mails to this effect and agree where the funding should go. Very discouraging to read the failure to use this opportunity to advocate for increased funding for ME and related autoimmune illnesses, We need federally funded clinics to see people with ME and related illnesses and we need federal housing for starters.
Maybe, with all that indignation bubbling, why don’t you take the ‘leadership’ and set up a militant wing of ME sufferers?
I think you’re right Mary. We have not mobilized to take advantage of this opportunity.
It is sad, part of what the condition does to people, is that it kills their aspirations, and along with this it kills their initiative to even make a fuss about their condition and the absence of help for it.
Healthcare as a rule is a very charged issue politically, with many conditions, failure to intervene is perceived as very serious, politicians and health care providers are anxious to avoid fallout.
But with ME/CFS and fibro, there seems to be none of this, because no-one has established it as a public issue.
I agree, awareness is our only hope, money will follow awareness. One thing is for sure, as long as there is no awareness we will continue to be funded at the insulting $6 per year, per person. Thanks NIH for a self worth of $6 PER YEAR! If we don’t organize we will be sitting in the same place a decade from now.
It would be great if Laura Hildenbrand would endorse the use of her book
title “Unbroken” to become the brand behind one of those colored bracelets in
order to raise money for ME/CFS research.
That’s a good idea, Dave! We would have to find a colored bracelet that isn’t being used by another cause.
I vote for transparent bracelets (almost invisible).
Laura was on Fox news this morning Chris Wallace, and they spent almost half the time talking about her iiness, and she did say “They used to call it Chronic Fatigue Syndrome” she did a great job. CFS is definitely easier to remember than Myalgic Encephalitis.
Thanks for letting us know! Good news…
I asked my sister if she knew Laura had ME/CFS and she said she knew she was really sick but not that she had ME/CFS! This will definitely help.
Laura was interviewed on Face the Nation (aired yesterday, 12/28). Bob Schieffer showed interest in the illness, and Laura did a nice job. ME/CFS still seemed secondary however (logical I guess), and discussion of the illness shifted more to the remarkable ways Laura has accomplished what she has in spite of ME (or because of it thus a deeper understanding of suffering).
Sure would be nice if one of these news organizations would see the potential in a story about ME/CFS.