I am surprised by my ambivalent response to the current media attention paid to Laura Hillenbrand.
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.
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.
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.
I love the attention Laura brings to ME/CFS- I did read somewhere ages ago that she spent 4 years when all she could do was look at a clock.
No one seems to mention the autoimmune diseases that came with my me/cfs.
You are not alone Carol and each of you….
In our humanity – in mine!- it is all too easy to fall off the tightrope in both directions- seemingly almost at the very same time!!! -referring to negative self-talk “You have done too much!” “You have done too little!” …..Then, when reading Toni’s wonderful book I am reminded just how confusing and difficult a challenge this disease really is- for each and every one of us!
Thank heaven we stand together in gentleness with and for each other… in admiration, too! We do this for each other at the times we fall off the tightrope and cannot see it/do it for ourselves!!!!! Thank you all!!
Regardless of ME/CFS, if one has great talent and fantastic support from a spouse, as apparently Laura has, obviously, it is quite possible. Without support, it is not. RP
Richard, She does not have support from her spouse. She used to, but they are separated.
Oh no! What happened? I remember thinking that she was living one of the greatest love stories…he was with her throughout college, grad school, and they didn’t get married until she felt well enough, which was well over a decade after she fell ill. This makes me sad 🙁
Laura and her husband separated only this last year. So she did have the support of a spouse for decades and did not have the additional demands of children. Even if their relationship was less than stellar, he was a crucial part of what allowed her to spend her available energy on writing bestsellers.
Agreed! No children was big…A couple of kids would have meant no books I imagine. Laura was also so disabled that outside activities couldn’t entice her…she was stuck in her apartment. I imagine that her isolation actually helped in some ways.
I battle this too. If Laura can, if Toni can. But I think we’re being unfair to ourselves, and maybe underestimating the audience.
Do cancer patients battle this? Do they say to themselves: Stuart Scott worked right after surgery, worked until a month before he died. Does anyone say to cancer patients: you know, Stuart Scott had surgery and was on stage a few days later. Maybe you should quit complaining about chemo and exercise.
I don’t think that happens to cancer patients much, and most people would find that judgment offensive. Yet we deserve the same compassion. There are degrees of illness severity. And no one sees the sacrifices Laura and Toni make, or that any of us make to advocate or take care of our families/ourselves.
Maybe ME/CFS patients don’t get this kind of compassion. But we deserve it, and we should at least give it to ourselves.
Believe it or not, it can happen to cancer patients too. My father had battled cancer for years, had gone through chemo, radiation, expensive injections too, and yet someone chastised him for not wanting to go for a walk at a time when he was very feeble, close to the end of his life. She said “It’ll be GOOD for you.” I wanted to leap out of my chair and strangle her because I knew exactly how my dad must have felt, having heard those exact words from someone too. He just wanted to relax and watch TV and he had surely earned the right to do whatever the *ell he desired. Other family members were disappointed too, that he finally “gave up”, despite the fact he had fought two different kinds of cancer for many years and just wanted to live the remainder of his life in peace. People talk about those that “beat cancer”, leaving those who aren’t so lucky to feel lesser than, failures for not “beating” their disease. So, maybe its human nature to unwittingly torture those with serious illnesses by expecting too much, simply because they love them and feel the need to offer some potentially life-saving advice. People tend to be harsher on us, though, since so many don’t understand the disease itself, so in that regard, its tougher for many with M.E., especially when family and friends desert them. I’m sure THAT doesn’t happen often with cancer patients. I also struggle with beating myself up constantly for either overdoing or not doing enough. I agree with you, Jennie, that we deserve more compassion, even if just from ourselves.
Please believe you are not the only one with this view. I was waiting and hoping for someone to make a comment that I could respond to. I was grateful for the publicity for our illness, but I’m afraid that the bit of publicity mentioning “the illness” will wither and die and very few will even remember this illnesses real name. Some will, but not many. Are we going to be left with this view that so many of us are slugs, just lazy? I think with this groundswell of attention, it would be top notch if a ME/CFS doctor could write a great article about the illness,etc. say stuff on YouTube..there could be all kinds of stuff with the gritty, reality details. We could make it to the forefront. Do we have some leaders who may see to it, or do we all have to do it ourselves? Can’t wait too long.
I like what you said, Richard. With the level of support Laura had made it possible for her to be a writer. Believe me, I know what it takes-it would take me years and years, without any support. Period.
Excuse me I meant to say you can’t tough it through the disease. It will kill you for the next week or two if you over do it for just one day. Her comments were silly.
I remember reading that Laura didn’t start writing articles until almost 10 years after she got sick, after she achieved some improvements in health. And then she didn’t start writing books until she achieved even more improvements in health. I also wouldn’t classify her ME as very severe – she was never tube fed. It was severe at one point (she couldn’t read, etc), but even she says that she has improved a fair amount since. I’m more curious as to how she improved! 🙂
I think we have to keep things in perspective when we are doing comparison’s. During one of Laura’s interviews she stated that she did not leave her home for two years while she worked on “Unbreakable”. That’s a long time to be house bound. I’m sure she knew how much this project was going to impact her health but decided to do it anyway. Look to Stephen Hawking, the physicist with ALS, to find an example of a severely handicapped person who has made incredible contributions to his field of study. I think a big part of this perception problem stems from the fact that most people with ME/CFS don’t look very sick and this has contributed to our struggle for respect. I’m just grateful for people like Laura who let the world know that we exist.
Exactly right, Deborah! In Laura Hillenbrand there is an articulate advocate. We can really only know a fraction of one another’s struggles and appreciate one another’s small (getting out of bed) and large (writing a best-selling book) victories.
I so relate to this post, and to all the comments! I was a professional writer (journalism, corporate) before CFIDS, went to grad school during my first bout and published a textbook, and since having to go on disability have been writing, mostly creative and literary.
It keeps me sane over this long journey of improving my health. I lose myself in it, it is a meditation. I publish, win small awards, get a bit of recognition, fellowships, etc. But it doesn’t pay the rent. On the other hand, it doesn’t hurt anyone, and puts me in a great mood.
The “either” “or” thinking from other people is that if Laura Hillenbrand can do it — make a seven figure salary from books — I ought to be able to. I have huge self-discipline and fire in the belly, but no million dollar book contract. What I may not have is Laura’s huge talent and brain power. But those are things I can’t control.
On the other hand — because I was pushed off of my corporate career track, I have been in the position of being there for the elderly people in my family, when no one else could be bothered.
There are lots of ways people who are differently bled give to others. Unfortunately, we live in a world where making money and being “exceptional” is some kind of expected norm.
I look at Laura, and many of my other favorite authors, and I say, They are geniuses and I am not. It doesn’t mean I’m worthless, it doesn’t mean I shouldn’t pursue creativity at my own level.
Thank you, Christina. Even when illness is not in the picture, it’s difficult to do creative work (and most work is creative, or can be) and not succumb to discouragement. We are ruthless self-critics; we constantly compare ourselves to others who seem more successful, or to standards that we can’t meet. Somehow we need to continue creating, while living with our own respective abilities and limitations.
To quote Eckhart Tolle: “The ego says: Maybe at some point in the future, I can be at peace- if this, that, or the other happens, or I obtain this or become that…”
You said, “Unfortunately, we live in a world where making money and being “exceptional” is some kind of expected norm.”
So well said! Can I quote you on this?
Oh, the dangers of comparing ourselves to others… I too fell into that especially since I was a professional writer with a degree in journalism and an MA in communications. Naughty ego…
Then I remembered, oh yeah, when I got sick I was taking care of my Dad who had Alzheimers and had three kids from 8 months to 13 years old to raise. Besides I was never as talented as Laura and never really wanted to work that hard anyway.
But I think we should use the story of Laura receiving the purple heart as the basis of an advocacy campaign making purple hearts our symbol. My specialty was marketing communications and I have all kinds of ideas on how to launch an advocacy campaign using purple hearts in time for next May. Does anyone know which of our organizations or individual advocates work on advocacy communications so I can contact them? It doesn’t have to be complicated to be effective. And this would be my big chance to use my writing skills and make a mark in the world…:-)
Seriously, can anyone point me in the right direction? Hope you’re all awap. Esther
Ester,
I actually had the same thought when I heard she had received Louie’s Purple Heart and our ribbon is purple! How great is that?! I will put my thinking cap on to see if there is someone you could work with to give birth to this brilliant idea! Sounds like you already have a plan to get started and a “fire in your belly” to make it happen!
Esther,
I actually had the same thought when I heard she had received Louie’s Purple Heart and our ribbon is purple! How great is that?! I will put my thinking cap on to see if there is someone you could work with to give birth to this brilliant idea! Sounds like you already have a plan to get started and a “fire in your belly” to make it happen!
Excellent! Purple Hearts it is!
Hi Esther – these guys (and in particular, this project) sound right up your street:
http://www.meadvocacy.org/frequently_asked_questions_for_the_national_pr_campaign_for_me
Great idea, Esther!
Esther I have a good source that can work with you on this. Send me what you want and how to contact you to my email: judiwarner@earthlink.net
I will get the information to them. Woohoo!
Thank you for expressing so well what I thought and felt when I read the original story. I’m not alone in my feelings, even if I am too unwell to, nowadays, express them.
First, I wanted to thank you for sharing this blog summary because I too have had the same concerns since all the media attention surrounding the Unbroken movie release started.
I agree you should not compare yourself to someone else, even if you have the same diagnosis. (I don’t think healthy people should really compare themselves either.) It is a futile exercise that will only serve to disparage you and discount the accomplishments you’ve made to date. We are all different people with varying symptoms (which is especially the case with ME/CFS). Do you really want to compare an apple to an orange?
I believe this concept is well-described by Toni Bernhard in the book you described. She adds that if you must compare yourself to something, do it to an earlier version of yourself to assess your progress. I find this to be a helpful rubric … although even that can be depressing at times, so don’t forget to consider current factors outside your control, such as the weather, time of year, etc.
IMHO, any attention paid by the general public to ME/CFS is a good thing because it sparks a dialogue and opportunity for their discovery. Yes there will be some who think that since Hillenbrand could write two incredible best-selling books, then the average CFS sufferer should be able to hold a job, etc. But keep in mind, it has taken her the better part of her adult life (more than a decade) to complete these two works, ON HER OWN SCHEDULE, and that she has sacrificed who knows how much in order to do it (perhaps a marriage, for example?)
I think that most people (unless they possess a profound capacity for empathy) won’t “get” what it is like to suffer from CFS, but that does not mean that we shouldn’t try to describe it to them. A friend of mine recently told me about The Spoon Theory of chronic illness, which relates how we have to ration our energy each day even for seemingly simple things like showers and preparing meals, and how if we “over do” it we have borrowed against the daily allotment of “spoons” for the next few days. The author of the theory, a Lupus sufferer, really feels like it has helped her family and friends relate to her daily struggles, even though when they see her, she appears happy and healthy. Something to consider?
I too had these same thoughts. Even prior to reading about Laura, I have very similar and comparable thoughts with regard to others that face, what I consider, “bigger or harder” challenges than what I face. ie. cancer, missing limbs, etc. I look at those individuals and think to myself,”please! Are you kidding me?! If they can accomplish so much with their challenges…quit your belly aching already woman!” It is hard to not be hard on our selves even while having compassion and complete and total understanding for another person, who may be in a very similar situation as our own. On my worse days I will still feel as though I should be able to tough it out because I am a strong woman–a fighter, dammit! But the truth is, this disease has stolen that woman. She no longer exists in me..no matter how much I think she should still be there, she’s just not.
I call this the “Montel Williams” phenomena. He’s very open about having MS. He told of an incident he had. A woman who had MS approached him at an airport and told him since he came out her husband told her if Montel Williams can do a TV show, why couldn’t she do more. He said no one saw him when he’d be in bed two hours before his show and four afterwards. And also he had a staff to take care of his needs at home as well as at work.
Her first interview after “Seabiscut” was more graphic. She said she almost went blind writing the book. I don’t think many people would think that would be worth any accomplishment.
People with spinal cord injury gained enormously from Chris Reeve’s struggle.
I worked for the Crohn’s & Colitis for ten years (I have Crohn’s.) Role models, faces of famous people admitting to Crohn’s disease or ulcerative colitis made a big difference thirty years ago.
We knew many people who had these diseases who remained silent. They had to be respected.
I personally am at peace with my own accomplishments. Maybe turning seventy and having had serious illness’s since I was twenty make that difference.
Like others I think Laura Hillenbrand would be the perfect face for ME and I don’t believe healthy folks would expect anyone with ME to do what she did with her writing any more than they expected an AIDS patient to be a movie star like Rock Hudson. In spite of the odds Hudson and Hillenbrand exceled in their careers and it leaves us in awe – that’s why Hudson was a perfect representative for HIV / AIDS and why Hillenbrand would make a good representative for ME – they have stolen our hearts and we admire them with respect. That said, I do find myself thinking too – if she wrote two best sellers why can’t I as an artist, who once painted twelve hours a day, everyday, pick up a brush and and manage to make one stroke on the canvas!
Great article Carol!! Read Seabiscuit!!! Much better than the movie – of course.
I wonder how many of us have support. Either as a husband/wife, family, friend, or hired. How many marriages have survived this disease? I would like to see how many of us have been abandoned. Our bodies don’t work, our brains don’t work, we aren’t very good companions. Sounds like a good survey for someone with more energy than me to do.
I would love to see professional survey of CFS/ME patients showing the amount of devastation this disease has wrought on our lives. The number of marriages/partnerships that have been lost, the number of us who feel we have been more or less abandoned, the careers lost, the bank accounts drained, etc. This survey would be useful to show others how this disease really affects our lives. It would also be useful to show the costs to the government and society in general in the loss of taxable dollars, the high cost paid out in disability payments and the considerable loss of our talents and hard work that have diminished our society.
As to the thought “Why can’t I produce like Laura?” I know that the efforts I make daily to survive are superhuman considering the amount of energy, brain power, and finances I have to do it with. I feel blessed to have someone like Laura who can bring attention to our disease, but all of us should be proud because surviving with this illness is an impressive feat indeed.
I agree!
Just learning to ‘ BE’ when suffering from ME/CFS/Fibromyalgia, plus osteoarthritis, spondylosis, scoliosis and osteoarthritis and NOT abiding by or living my life to fit into social constructs has been and still is something I try and do on a daily basis. I have been through almost every traumatic experience a human being can endure and also experienced great joy, inner peace and gratitude too. The older I manage to get and the more simple I try and keep my life and especially my thinking because too often I have fallen into the trap of living up to my own ridiculously high expectations of myself and those of others, in order to be accepted and to feel acceptable. What this lady has achieved is what she chose to do, hats off to her and that is my point. Life is a journey making choices along the way. Some work out some don’t, we all as individuals though part of the whole, have to learn what works for ourselves regardless of the opinions of others. The only caveat being that we are not causing harm to ourselves or others. Considering we have a global population of 7 to 8 billion, that is a lot of opinions to take into account so I find the best policy for me is to keep it simple or succumb to collective madness.
Thank You for writing this! You have verbalized my exact contradictory feelings about the brilliant Laura Hillenbrand… feelings I’ve been harboring since the success of “Seabisciut”!
I am grateful that Carol has shared her thoughts. I wonder if there’s a path we each can take through illness that helps us to let go of the cultural expectations that once drove us to success and, after the onset of CFS/ME and or Fibromyalgia, ultimately to flares in our illness. The motivation to let go of those old standards is high as is the pain of continuing to hang on to them.
We have a ‘new normal’ that has its own demands that are, in many ways, much more rigorous than those we used prior to illness to the climb the ladder of success. The path for me is to embrace who I am now.
I used to be great at delaying gratification, setting and achieving short and long term goals that demanded discipline, required sacrificing sleep, time with friends, family, hobbies, and many things I liked (but discounted as “less worthy” than the current goal). Now, I’ve lost much of the executive function that kept track of those goals. And, though it grieved me for the first few years, it bothers me much less now. I live closer to the ground now and less in my head.
From what I gather, many of us are wired as Type-A personalities. CFS/ME has helped me begin to dismantle the armature of that wiring and focus more on what’s good in this moment and less on what’s missing or what I used-to aspire to. Illness has taught me that I can no longer pick and choose when to listen to my body. Illness and the related stressors don’t need to define who I am or dictate my mood. CFS/ME has helped me to embrace the things I used to discount and make time for what gives me joy.
My take on the world is that we each have a calling. Mine is still here in the midst of illness. As some have posted, we’re more available to care for others, to be compassionate to those in need, to explore new kinds of pursuits given our physical and mental limits. I used to focus on being more successful. That’s no longer a thought. How successful I am at my calling (or even exactly what that calling is) is not within my pay-grade to define. I show up with who I am and what I am today and pursue what is meaning-full and joy-full despite the limitations.
Thanks Suzanne. I particularly liked, “… I’ve lost much of the executive function that kept track of those goals.”
This is the first time I’ve heard this statement; it’s so helpful. And it made me giggle…thankful for my sense of humor. (I’m NOT happy at the loss of much of your executive function–or mine!)
Someone asks me, “How’s your book coming?”
I reply, “What book?” or “Which book?” or “I’m not sure.” And sometimes I think, “Oh! I’m writing a book–I better work on it!”
I have four books going at once and if any one of them is ever published, or even finished; I’ll be astonished! I do so love to write though–if nothing else, my writings will give my kids a puzzle to piece together (if they want) after I’m gone.
For an example of this lack of consistent executive functioning; I’ve spent almost two hours on here; reading and commenting. Now my brain’s inflamed and I didn’t finish the research I had planned. Good thing I gave up deadlines!
Tami — I’m sure the books will come out when they’re ready.
One of the ways I look at the loss of executive function is that my mind is like a computer that freezes everytime I open too many browser windows. I have to reboot often and the operating system is obstinate. Sometimes it wants to help. Sometimes not. And the browser doesn’t have the capacity to keep track of those formerly open tabs. Just have to trust that what needs most to be done is getting my attention because stressing over ‘what I’ve not yet done’ doesn’t help me get things done or feel better.
After eight years of a seemingly hopeless lifetime illness, ME/CFS/FM, I watched through many tears as Laura described her ‘all to familiar’ relational losses, limitations, disabilities and work-arounds. She was for real. Her story was my story. Hope! Hope for a life even with limitations and work-arounds. Thank you Laura for sharing what can be done in the face of unimaginable difficulties and preservance. I can do this!
I think it is precisely because Laura has been so ill she pushed herself to do the book. I bet if we each look at our lives with the illness we have done something heroic with our teeny bit of energy. I started a support group for CFIDS when I was bedbound. Being bedbound drove me to do something. I couldn’t stand the isolation. Now that I am doing a little better, I am getting out some socially, and I would probably not want to be a writer because it would put me back in isolation. However, instead of worrying about how she might represent us..just accept that she has a genius to write..and that is still able to shine with her disability. I was a nurse..and even though the illness knocked the heck out of me..my background in medicine provided a groove for my brain to work better. A good friend of mine committed suicide with the CFIDS but he also wrote a lot, and he told me since it was a gift it was something his brain could still do although he had to do it differently than when he was well. I am so grateful some of us can still shine with this illness to draw attention to our plight. Please don’t compare yourself to Laura, just think of some way you may have pushed yourself through this nightmare of an illness and shone because you really wanted to be with your child, take a class…go to an event, and your passion pushed a bit through the disability. I bet no matter how ill someone is I can bet you have one event..one dream you found the strength to fulfill.
Lisa
I also have described the illness as a car trying to get where it is going on 1/10th a gallon of gas. When the gas is gone..then, the gas to refill the 1/10th of a tank of gas trickles in over several days before the car is up and running..and then it runs out pretty quickly again. So for the gas to last a week..this car cannot travel very far each day. Keep in mind also when Laura was interviewed on Face the Nation she was asked why she hadn’t written much in the last four years..and I was thinking ( I bet all of us CFIDS patients know..it takes a long time to refill the tank), heh, heh. post exertional recovery time.
Lisa
I *really* like this image! I would only add, that my car has gone from 40 mpg to 10 mpg.
Carol,
Thank you for your articulate and incredibly judicious reaction to the “Hildebrand dilemma.” I saw your blog tonight—coincidentally, after a tearful conversation with my husband, where I complained that people—even he, with his enduring patience with my limitations—don’t seem to understand, not really, and I referenced Hildebrand and the various articles and interviews I’ve found through HealthRising. I told him how I admired her, but also about my fear that her story will further undermine general understanding of those of us with ME/CFS. It’s true that her accomplishments make it seem that we, like Louis Zamperini, could prevail if we just try hard enough. I think Hildebrand’s point is that in seeing someone like Zamparini endure his tribulations we can think, if he can “do it,” we can do what we have to do. But what is the “do it”? For us it is to continue to maintain. For him, it was to get through it, to the other side. I don’t begin to think my pain and suffering is comparable to his—or to Hildebrand’s—at least not in intensity. But there was something more tangible about his suffering. There could be the belief that he would be rescued. I think that’s why he chose to give her his medal. She can’t believe that being “rescued” from the prison is really being released to freedom; the prison is always there, a few steps away.
What I find inspiring in Laura Hildebrand’s story is her acceptance of her limitations. She realized that she only had enough strength to do one thing and that she’d have to do that slowly. She made some hard decisions (or her body made them for her): not to leave her apartment, not to try to live a “normal” life. She had to make that trade off, if she was going to write. She committed herself to that single purpose and didn’t try to do all the other things that could have sapped her energy.
Many of the rest of us haven’t accepted our situation so well. We bounce between denial (I can take a walk, have a lunch with my daughter, grocery shop in one day!) and the backlash that results. And I had to ask when I was reading the articles, listening to the interviews—Laura: who buys your groceries? Who cooks your food? Who cleans your house and buys and washes your clothes and who is there for your loved ones when they need you and their needs cause stress?
Laura Hildebrand is a wonderful reminder of how vitally important it is to accept that we have limitations, and we have to work within them with great focus and commitment to staying within our limits. But she’s also a reminder of how “normal life” dictates our choices and cuts us off from most of the accomplishments we’d want to have. I hope that the “general public” who hear her story also hear the subtext: she could write these books only because she sacrificed virtually everything else.
Nancy
PS. I’ve recently discovered the excellent work by Kristen Neff on self-compassion. http://www.self-compassion.org.
After seeing Klimas for the first time Aug 2011 & a Jan 2011 SPECT scan giving me my ME/CFS diagnosis after 9 years of diagnosis, the debilitating brain fog started to lift. When the fog cleared for the next feel years, we figured out another hear surgery was needed, this left me horizontal for all of 2012 and part of 2013.
I had given up painting as sitting did up didn’t work at the time. And I began researching the Modern Art Story here in my village of Spoleto Italy. I stumbled upon a hidden treasure of the CIA funding American artists, painters, musicians, actors, dancers to travel internationally to be a way of promoting our culture abroad during the cold war while but a way for the CIA to have a perfect cover, with most news journalists having a silent no tell agreement with the CIA.
I happened to bust open a hug secret and was invited into an archive. At that point in time, I learned to access archives from multiple nations to rebuild the truth of the story I am researching and organizing. But this is where my problem lies… I would relapse at time for months to where I could not care for my daughter and barely take care of me.
Desperate enough after the Jan 2014 severe relapse, Klimas said, give the sports a try Francesca, as I was an ex-athlete. She had told me in 2011 BUT I WAS NO WILLING TO FOLLOW THIS PART OF HER ADVICE, just like 99% of ME/CFS patients will not even try…. SO Spring of 2014, my book writing went on hold, and I am 9 months into being CONDITIONED from being DE-CONDITIONED. In starting my group for safe exercise, 900 professional posters arrived and all wanted to strut their stuff and let their voice be heard. When I finally had enough of wasting my precious time, the group got weeded down to 70 team members. They are some of the most highest level successful people from before getting sick in all occupations, and they were desperate to get better. They where willing to dedicate 4 months of clearing their docket on life to do nothing but to achieve one goal, move from being DE-CONDITIONED to becoming CONDITIONED. But unless each of us accepts responsibility for our own health and stabilization (with a few exceptions of those on feeding tubes and 24 hour IV) you only get the life you create! I take all of Klimas’ cocktail mixes, I had my first solo art show promoting our illness in 7 years, I am painting and I do research for my book and I exercise. But here is the deal…. I can’t do it all anymore… I allow myself the grace to move between the arts in which serves me best. Right now being focused on exercise and having the art show, painting and research is off. But when the time is right, I will go back t those and I cycle getting my projects done. I have also excepted that it may take my life to get these goals accomplished and that is ok… Klimas told me I am one of the few to succeed with exercise because she said YOU MUST BE DETERMINED AND COMMITTED, and most are not… My exercise team is a hidden closed group because I could not nurture the endless needs and excuses of those who just wanted to be professional posters… We do have a Safe Exercise Prep group where the information is available to get prepped. Then only after one has read of those documents and bought the minimum needed exercise equipment, then they can submit their application to join the exercise group. We let people into the team in blocks… right now I am training about 15 new people that started exercising January 1st. Also… please do not say that you are sicker than me… I have all the test results, vo2max was 1 point about severe, NKC dysfunction, CVID, Optic neuritis, open heart surgery, POTS, ablations surgery, 4 strokes, reoccurring VTACS, MPS, kidneys compromises, documented inflammation of the brain, and on and on… I get IV IgG treatments every 21 days for life. https://www.facebook.com/groups/1549954715251687/
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Hi Francesca,
I have been getting IVIGG for over 20 years. I am having some new adverse reaction that are quite troubling. This is my second reply. I seem to be getting disconnected from the site before it is sent. If you receive this I would be ever so grateful for an open dialogue. I am considering stopping it altogether which could have dyer consequences. I thank-you in advance for your time & support. Peace & Blessings, Linda
I too wrestle with this dilemma. Because I am writing a book to raise public awareness about the experiences of living with CFS and M.E. (of both myself and others), I was really praying that Laura would use her platform to give more detailed information about the illness. The more of us that speak out, the better. However, after speaking with others about these feelings, I realized that she never said that it was her primary purpose nor that she is acting as an advocate for ME or CFS. I don’t really know why I expected her to. It was my expectation and not hers I guess. There is one interview in The New York Times that went into detail about the illness and Laura’s experiences, and I was thankful for that one. I usually send things on to the general public as well as patients if I feel it to be helpful. This was the only one about Laura that I felt comfortable sending to others with the intention of raising awareness. It can be found here http://www.nytimes.com/2014/12/21/magazine/the-unbreakable-laura-hillenbrand.html?_r=2
Thank you Carol, for bringing it up for discussion. I love to read your blogs.
http://www.nytimes.com/2014/12/21/magazine/the-unbreakable-laura-hillenbrand.html?_r=2
Thanks for your article/blog post, Carol–opening this conversation.
Thanks for all the comments; I enjoy hearing all your thoughts and learning from what you share.
When I first read about L. Hillenbrand and Unbroken; I was happy re its awareness potential. (Awareness Potential??)
I was sad for her and could relate to her inability to travel and do book signings, etc.
I told my husband about it. That was when questions began forming…
“How did she work every day?”
“Is this going to give credence to the fallacy of “If you’re just determined enough, you SHOULD be able to ___________~fill in the blank~
“Perhaps this is an example of differences between neuro-inflammation in CFS versus ME.” I don’t mean to offend anyone; I believe they’re two different diseases/disorders.
“She can afford help. She might not have to do the majority of things I choose to use my energy on—you know stuff like, changing the bed, cooking, cleaning…things like these.
I read she has her work area set-up for maximum energy conservation; everything easily accessible in a small area. I think an area to rest is included.
She’s an exceptional writer. This gift has perhaps afforded her the luxury of being able to focus on one thing. And as happy as I am for her; my heart aches from knowing what this must have cost her.
When I used to write with a deadline; I remember that feeling of brain inflammation. It was such a struggle–finding the words; finding the resource; stringing the sentence together; spelling; re-reading. An article someone healthy (or more gifted) could whip out in 20 minutes, took me hours.
A while ago, a grace fell on me. I was in my crazy making mode of– “Am I REALLY doing all I can—there must be a better way—if only I could figure it out—I SHOULD be able to get this figured out.”
In an instant I was impressed with, “Are you trustworthy?”
“Yes.”
“Are you lazy?”
“No.”
“Do you like to work and create?”
“Yes.”
I began to trust myself that day. I’m doing the best I can on any given day. I’m sure of it. I can also change and define “best”; and the definition may change day to day. This gift has given me psychological relief and a bit of immunity from the opinion-viruses of others.
I’m thankful for this great site, Cort, and appreciate all your good work.
Two books is not much in a lifetime. I think her unique way of living in the world make the depth of her writing style very unique… thus the success. She found the sliver lining in her cluod
I agree – you work out that every word has to be made to count when you have to produce them so slowly.
Kind of like a military force besieged, and low on ammunition.
Carol, you need not be so tough on yourself. This is such a well written realistic article. YOU did it! In reality, I doubt Laura thinks it easy. It comes with a price and those of us with ME/CFS know exactly what that is, but we do it anyway.
Thank you for your honesty, and keep up with your writing, you do it well. And there is nothing wrong with watching “Orange is the New Black,” or any other reality TV. Even the most achieved able bodied people need a mental break.
As I remember it took Laura a year to write the essay that appeared in the New Yorker.
I love all the comments etc on this post, only thing I can’y agree on is the person who wrote about 99% of people not giving exercise a try. I can only speak from my own personal experience and this s not so. If anything I think most of us are too hard on ourselves also many of us do not have access financially etc to the Drs that could really be helpful (such as Klimas or insurance to cover VO2 maxtesting etc.and the ability to give 110% of negative energy reserve to our own recovery while neglegting all else.to achieve our own personalized recovery…..that being said I am very happy to hear of people who have recovered and acknowledge all the hard work they put in to doing so. It is good to hear these stories but I don’t think we should compare ourselves to others and point any blaming fingers as how can we possibly know someone elses story? Also, I feel thankful for Laura Hillenbrand and her courageous ability to share the truth about how me/cfs has effected her life. I think she gave up most everything else to achieve her goal and it did take her a long time. It was brave of her to talk openly about the illness on Face the Nation.
A very useful discussion with much to consider. I too started to wonder how she managed to do so much.
I think much of the dilemma many of us face with her wonderful achievements is caused by the vague and very open definition of our illness based on symptoms.
As sub-sections are being identified, defined and specific treatments designated then we may more easily compare apples with apples and ignore the oranges as being irrelevant.,
Many of us have fibromyalgia, and a range of co-morbidities and symptoms. I feel that I need to progress on my own journey to improved health and not be negatively influenced or daunted by the achievements of others.
I don’t want to waste my limited energy on an ill-founded concern that someone else is able to do more than I can. It isn’t energy efficient nor spiritually efficient for me to do so.
How does an ME brain write as well as she does?
I’m jealous of all you being able to write whole paragraphs that make sense. 🙂
someone is maybe jealous of me being able to read your paragraphs.
🙂
(((SMILES)))
Thanks for putting that into words Jamie – I couldn’t 🙂
Laura, I doubt this is the origin of your dizziness since it started when your other symptoms did, but you might want to see if you have Superior Canal Dehiscence Syndrome. I had terrible dizziness for 5 years ( no help by the 2 “experts” in my state) and finally found help with Dr. Gerrard Gianoli in Louisiana, who resurfaced a hole in my ear via craniotomy. 2.5 hour operation and 5 years of suffering gone. I just had to mention this even though the chances are so slim it’s causing your problem…..
Here is my point. She down played the illness to fatigue and dizzyness. The disease has biomass now..your immune system and no cells are destroyed. Your brain imaging shows white matter ect. Your heart has major issues including von max and of course mitochondrial issues. I can go on and on. Yes I did get cancer 3 years ago from this disease and laughed at the cancer because I knew this disease gave it to me.further I knew when I would beat the cancer the disease that has ruined my life and given me cancer would still be there. I.man ex athlete and tough guy. You can be strong minded and positive but you can’t push through if your really sick period. My opinion is she does have something but not serious cfs. Nor did she do anything on TV to make any impression on anybody watching.
I can relate. I read somewhere there’s a higher incidence of thyroid cancer in people with M.E.(Maybe The Nightingale site?) The thyroid cancer I had resulting in a total thyroidectomy may have been caused by the M.E.
The lung cancer, taking the top lobe of my left lung, may have been helped along by the M.E….low NK cells?
Perhaps I would of had both these cancers w/o M.E.
I’m thankful for the successful cancer treatments. Both were difficult times, but I did have hope.
But like you–during it all; I knew the M.E. “would still be there.”
We need to remember that Laura Hillenbrand suffered for her art. She has only had the energy to write 2 books so far in her life. I believe that with her talent and “fire in her belly” she would have been a far more prolific writer. Her ME/CFS has robbed the world of all those books she would have written. She has also crashed horribly after each of her wonderful books. I believe I read somewhere that she had a year-long crash after finishing “Unbroken.” The fact that she made so much from her books is a fluke of Hollywood. One never knows what books they will sink their teeth into and make money off of. I am happy for her but although can appreciate the throttling hold her/my illnesses have had on us. How much they have robbed from our lives. I admire her and no I am not fighting alone.
I agree completely. It took her ten halting years to write Unbroken…She would have been much more prolific without this weight dragging her down…
Over the years, I have met many ill people who are no longer able to work, and find themselves at home with time on their hands. They turn to writing, hoping they can come up with something marketable. There are a lot of manuscripts out there going nowhere for various reasons. Often they are not finished. Often they just do not get published. In the meantime, you still have to eat and pay rent. “Why can’t you do what she is doing?” is a thoughtless question from others and myopic from ourselves. I think few of us have escaped that moment of self-questioning.
I would be interested in hearing Laura’s thought processes BEFORE Seabiscuit was published. No one sets out to write a money-making bestseller and succeeds just because they decided to do so. None of us would be on here writing posts if our big ideas had worked already. Yet, most will just keep right on trying those ideas, and that is as it should be. Some of those ideas will succeed.
I admire Laura Hillenbrand’s genius at writing. Bravo to her for finding her niche anyway in difficult circumstances.
It’s so hard to understand what the problem is and I always have to go back to the fact that CFS says it all. People with MS, RA and so many other illnesses have a much larger window of opportunity to work. So, when the general public cannot relate to the severity of our disability and they know that what I just stated about other illnesses and work ability, they will then assume we too can work. I did work for the first ten years of my illness and it was so difficult that I finally collapsed at work and was brought to the hospital. Then I was put into a place for people with psychological problems because I was having panic attacks and literally could not catch my breath for two weeks.
And after all that, the stigma that I had a mental illness still follows me around, even though I see the Klimas group and was diagnosed with CFIDS years ago. It even disqualified me from receiving disability insurance that my co. paid for. (Erisa) the most difficult to collect on. And so now 22 years from that breakdown which came from pushing a sick body to work I am still ill. I did receive SS disability, but Fortis got off w/o paying me. At this point in time they probably owe me $400,000, but the time is up to even try and fight again for it. I am not a rich person and just get by. So many things disgusting regarding how this illness has been handled. At this point, I would be happy to have a medication that worked and the ability to have a normal life. At 71 probably too late for me, but I pray that those after me get a chance to some sort of recovery and are able to go on with the lives.
I cannot help but wonder what Laura Hillenbrand herself must make of this kind of debate.
Does anyone remember — a few years back there was a female soccer player on the U.S. Olympic team who claimed to have CFS. I had a real problem with that. The running and physical exertion required to be an Olympic athlete did not jive with the symptoms of ME/CFS. And I was totally unable to explain that dichotomy to friends who at the time asked me about it.
With Laura Hillenbrand, I find no such difficulty. I think about how hard we all occasionally push ourselves to be our former best, knowing that the price we will pay is huge. And few people will ever see or understand that pain. This is an insidious illness; Laura found some success. But for such a prolific writer, as has been mentioned by others, she has written beautifully, and then taken to her bed for YEARS at a time. We see the success but can only guess at the price.
Laura Hillenbrand inspires me, in part, because I too am housebound, totally disabled and I’ve been sick only one year less than Laura herself. And I say to myself, if Laura can do it for 24 years, then so can I.
I appreciate all these thoughtful, illuminating and articulate comments exploring this topic and offering many different perspectives. In addition to admiration for Laura Hillenbrand, a common thread seems to be reminders of the great physical toll her efforts have taken, in addition to her isolation.
We’re walking similar tightropes, trying for balance but sometimes wondering why we can’t be as amazing as the Wallenda brothers.
Isn’t it interesting (and hopefully fortunate) that Hillenbrand has been in the spotlight roughly the same time as the release of the P2P and IOM reports? Let’s see what kind of coverage THEY receive.
Carol-
Thank you for this. I cried.
This is very interesting & I’m trying to take it all in by re-reading the original post. Like most of you struggling with ME/CFS & FM, I also have Hashimoto’s and arthritis. It takes a lot of effort to remember what I’ve just read! I could open a bookshop with unread books. My husband has a busy job which requires him to travel almost every week (that’s how we remain married), so he tends to forget my limitations. His weekends are filled with paperwork & the food shopping that I’m unable to do, no social life for at least 15 years. (Also, I’m too embarrassed to explain my situation without sounding like a hypochondriac.)) I’m alone at home all week except for a weekly 50-minute drive to my psychiatrist for 50 minutes (where she tells me “You should get out more”), then a guilt-ridden 50-minute drive home. That trip wipes me out for the following days. I also had earned a master’s degree in 2000 but now not only unemployable but overwhelmed with daily survival. I just turned 60 & if not for my dog, I would go to bed each night wishing not to wake up in the morning. Last year $16,000 was spent in out-of-pocket costs for muscle relaxants, pain pills, anti-depressant/anxiety meds, thyroid and other supplements. (That astronomical amount also included a hip replacement–all this with insurance coverage; without it might have been 10 times the amount). I should be inspired by stories of those who have ‘risen above & beyond’ their in their incapacities and I’m happy for them, but it doesn’t seem to be in my future.
Laura may very well be able to afford to employ others to do the day to day household challenges that consume much energy and increase stress on most of us challenged by ME/CFS.
I so admire her willingness to share and obviously her talent. I have been listening to the audio book “Unbroken”, and highly recommend it…. as well as “Seabiscuit”….. Although be prepared for much emotional stress with the former.
Perhaps Ms Hillenbrand will share a few of the strategies she implements to live productively with CFS.
Thank you Laura Hillenbrand 🙂
Laura may very well be able to afford to employ others to do the day to day household chores that consume much energy and increase stress on most of us challenged by ME/CFS.
I so admire her willingness to share and obviously her talent. I have been listening to the audiobook “Unbroken”, and highly recommend it…. as well as “Seabiscuit”….. Although be prepared for much emotional stress with the former.
Perhaps Ms Hillenbrand will share a few of the strategies she implements to live productively with CFS.
Thank you Laura Hillenbrand 🙂
Laura may very well be able to afford to employ others to do the day to day household chores that consume much energy and increase stress on most of us challenged by ME/CFS.
I so admire her willingness to share and obviously her talent. I have been listening to the audiobook “Unbroken”, and highly recommend it…. as well as “Seabiscuit”, although be prepared for much emotional stress with the former.
Perhaps Ms Hillenbrand will share a few of the strategies she implements to live productively with CFS.
Thank you Laura Hillenbrand!