ME/CFS needs witnesses – people who can stand firm in the face of denial and rejection and tell their story to the world. Each time we responsibly speak the truth to the medical profession, or our families, or our friends, or the NIH or whomever we begin to move the conversation around chronic fatigue syndrome (ME/CFS) in a different direction. It moves from invalidation to validation; from dismissal to concern; from ignorance to knowledge. Witnessing is how we produce change. Valerie Free is a witness for ME/CFS.
Valerie’s journey to become a witness for ME/CFS began with journaling, a sometimes painful process which nonetheless turned out to be a validating experience. She began to work on her book “Lighting Up a Hidden World: CFS and ME” after having what she described as a life-altering conversation with Tara Hyland-Russell, PhD, a professor of English literature and life-writing. Once Hyland-Russell explained about “the importance of bearing witness to the history of an oppressed group”, and how storytelling can be used to mobilize social change something clicked inside her.
Valerie Free felt she was called to become a witness for ME/CFS. “Lighting Up a Hidden World” took seven years to complete
A book by Arthur Frank, “The Wounded Storyteller: Body, Illness and Ethics”, gave her her mission: she would bear witness to the disease that had changed her life so radically. Frank explained, “Becoming a witness assumes a responsibility for telling what happened. The witness offers testimony to a truth that is generally unrecognized or suppressed.”
Frank emphasized that being wounded didn’t mean that one couldn’t also be a healer:
“As wounded, people may be cared for, but as storytellers, they care for others. The ill, and all those who suffer, can also be healers.”
Valerie now had a calling, and like many people with a calling, what happened next was a bit out of her control. The book she ended up writing “Lighting up a Hidden World: ME/CFS and ME” called to her, woke her up at night, and put a pen in her hand even when she felt horrible and didn’t want to write. In the end she felt that the “book worked on her” instead of the other way around.
Seven years later, working bit by bit, she had completed “Lighting Up a Hidden World: CFS and ME” – one of the most comprehensive books on ME/CFS that I’ve read. (The book will take several reviews to cover).
A Review of Section I of “Lighting Up a Hidden World: CFS and ME” by Valerie Free
Section I: Valerie’s Song
Valerie’s book is fashioned in two sections. In “Section 1: The Chronic-Call” Valerie tells her story. In “Section 2: The Global ME/CFS Community – Voices of Struggle and Strength” she uses the voices of the community to further expound on central themes of having chronic fatigue syndrome (ME/CFS).
In “The Chronic-call” Valerie tells her story in the form of a poem fashioned on the song “These are a few of my favorite things” fromThe Sound of Music. As she does so she elucidates further on issues raised in the poem on the accompanying page.
In Shakespeare extensive foot or side notes are usually used to explain the text. “The Chronic-Call” is like that except the poem is shorter and the side notes are even weightier. For instance, next to the first line of the poem “Chinooks and low clouds and changes in pressure” Valerie describes the problems that changes in barometric pressure started causing her.
Using a poem to anchor content Is a pretty daring move. Fortunately Valerie has produced a superb ME/CFS rendition of an easy to follow song. The only downside is occasionally some scattered content. For instance, we’re introduced to Valerie’s problems with barometric pressure before we learn how she got ill. Information on the different types of fatigue present in ME/CFS is presented in the same section as information on how new the disease is.
If you have trouble with this different type of story-telling my advice is to keep pressing on. The more I got used to the format the more I enjoyed it. Valerie’s story is a striking one and it’s a joy to have her explicate aspects of ME/CFS next to it…. As you learn Valerie’s story, the story of ME/CFS itself unfolds.
Valerie’s Story
As Valerie describes getting ill in 1990 she writes about how new the illness was, her luck in quickly finding a doctor (giving her the opportunity to provide a sidebar on how few doctors are aware of ME/CFS) – and the ME/CFS epidemics taking place around that time. It was surprisingly engaging to think that as Valerie was becoming ill by herself in Alberta, Canada, these outbreaks – which we still don’t have a good explanation for – had just occurred. Later in the book Dr. Bell writes of “The Early Days” of ME/CFS.
In the next stanza which deals with her formerly active life (including aerobics instructor!) Valerie folds in the five different types of fatigue Lenny Jason found (post-exertional, wired, brain, etc.). A stanza which asks “Am I Dying?” flows into a wonderful report on just how difficult ME/CFS can be. Valerie writes that in one breath she had the thought, “I hope I am not dying” and in the next the thought, “I wish I were”.
Valerie’s former life was a full, active one that little prepared her for a long term illness. She asked how could she – who had been so strong and healthy – get so sick and then stay sick for so long? Nothing prepared her, she writes, for what was to come and the heart break it would entail. Nothing prepared her for the life sentence this illness has become. (She has now been sick for 27 years.) Surely, she thought, as so many of us have – at some point she would get well. Instead, over time, she got worse.
I need help in ways I never expected,
Cannot believe it – I once was perfected.
How could this happen just after a flu
When 30 and healthy and shiny and new?
Valerie switched to part-time court work (stenographer) and eventually dropped it as her ability to multi-task, a vital part of a job which required her perfectly transcribing several people talking at once, went to uni-tasking and at times not even that. The one-time court reporter eventually had trouble following one person’s conversation, let alone transcribing it.
She got worse, in part, because of the advice she got to push harder and exercise…
…We did not know…
…This could harm me….
…No one said a thing…
While Valerie attempted to get a Natural Health diploma – to learn more about her health – the same flu-like sensations that showed up at the beginning of her illness reappeared with devastating results.
Energy’s draining right out from my feet,
What odd sensations starting to repeat….
Valerie’s functional level fell from 70 per cent on the Karnofsky scale to about 10. (Both the Karnofsky scale and Dr. Bested’s functional scale are included in the book). Valerie felt that 10 – the lowest rating on the scale, is actually not sufficient to explain the debility she experienced. Documenting that, she felt, would require going into negative numbers. (Valerie devotes an entire chapter to severity later in the book.)
At the age of 35 Valerie applied for and got disability. It took a year and her watching agents parked outside her house watching her, but Valerie had some factors on her side. First she’d been diagnosed early, was part of a union that fought for her, and had an ME/CFS doctor to support her application. The financial support was welcome, but still unsettling.
Never dreaming I’d need disability pay,
At age thirty-five; and still get to this day,
For an illness I’d never heard of before.
On work and on play, it had closed all the doors…
As Valerie’s illness worsened she was faced with more and more difficult choices – choices that few outside the illness can understand. Any semblance of normality was going; exercise was out of the question, participating in family events dangerous, most chores an impossibility. Instead Valerie had to withdraw from most aspects of her former life and hope for better health – and that her family would understand.
Having to stop all exercise that I love now,
No physical working – spread two tasks out – somehow.
No dancing, no yard work, no biking, no fun
Walking is hard, never mind a good run.
She tried and tried to get better. She used “charting” – a technique that Martha Kilcoyne of “Defeat Chronic Fatigue Syndrome: You Don’t Have to Live with It” used to get well – to pace. A heart rate monitor was eventually discarded because using it would have required her to stop almost all her activities. Meditation, breathing exercises and restorative yoga poses provided some relief but the core of the disease remained untouched.
During her worst relapses Valerie was still incredibly ill. Chewing required so much energy at one point, for instance, that she had to store her food in her mouth until she had the strength to chew it again. She lost the ability to read or speak fluidly.
Doctors reading Valerie’s book may quail at the unintended consequences of their actions. Few ME/CFS specialists exist in Canada (or the U.S.). Valerie’s interactions with the medical profession have at times left her reeling and have had, she believes, profoundly negative effects on her well-being. It took her years to accept the ignorance the medical profession is drenched in regarding ME/CFS and to view her role, not as a victim, but as a pioneer – bringing some light as best she can to a medical system that is supposed to do the same for her.
I deal with doctors who still do not get it,
And if they do, they might still rather dismiss it.
Nurses who still think I am just tired,
“No, I’m not loony or lazy – and you should be fired”…
That’s a big burden for someone unwell,
And it can bring me to my knees.
Valerie Free – shining a light on a mostly hidden world
The expensive treatments that never moved her health forward were one thing. The ones that hurt her were another entirely. One called Integrative Light Therapy (ILT), which her doctor assured her had no side effects, effectively fried her already fragile central nervous system leaving her bed bound in a darkened room for months. She’s still experiencing repercussions from it.
As Valerie’s song goes on she explores the tangled web that ME/CFS patients exist in. There’s dealing with the loss of her health, her independence, her emotional strength, ability to produce, etc. She reads that coming to grips with her losses requires a deep mourning for her lost self and a conscious acknowledgement that her old life is not coming back, but this kind of acceptance is not easy for her.
Perhaps her most unsettling and telling loss – for those who don’t understand this disease – is simply for “predictability” – for having some idea how her health is going to be from moment to moment and day to day.
I miss…..my power, my confidence, trusting my body.
I miss….finances, and earning a good solid dollar.
I miss….the feelings of fitness, well-being, and strength,
A predictable day ‘stead of one moment’s length.
Living in what she calls her “glass box”, her fragile living space – so easy to break – is difficult: not just for her but for her family and friends as well. These and other chapters give caregivers and other healthy people valuable insights into what it’s like to have this disease.
…Humiliation….
…And frustration…
….A pot of emotional stew…
Grief, guilt and fear, anger, jealousy, too;
Disappointment, to name a few.
The guilt she feels for her many absences from her family, her inability to produce an income, to do more household chores, to participate in the activities that enriched her and her husband’s relationship, and to be the mother she desires to be – is immense. People who think ME/CFS is a walk in the park because of the things ME/CFS patients can’t do – such as work or household chores – would do well to read these sections and catch a glimpse at the guilt and turmoil seething inside.
I think that I’ve been a good wife and mother,
I’ve completely enjoyed all of our time together,
To let them down is gut-wrenching for me.
Recognizing how difficult her illness is for her family, she implores….
Please don’t grow impatient – it is a disease.
How to accept a diminished life is something that everybody with ME/CFS deals with. For Valerie it requires, again and again, putting aside her expectations and recognizing that she is not in charge. It’s an all-around humbling experience. She does what she can…..
I give friendship and nurturing, I help where I can…
…Set just small goals…
…Value each step…
…Do simple things to please…
This is not what I expected at all.
But this disease brings humility.
Valerie adjusts. Instead of doing major chores or going shopping she makes lists for her family, works on the computer, pays bills, chats, shops in the mall with her wheelchair and even travels sometimes. Worries about the future, though, abound in an illness that has packed such surprises. It’s so much easier to get worse than to get better.
…To worsen, easy…
…To improve, hard…
…Which way will it go?…
Taken nothing for granted with CFS,
‘Cause the future we do not know.
Valerie recognizes that she’s been lucky in her unluckiness. At 55 she has ME/CFS but her health has been stable at about 40 percent of normal. She also has a supportive family, a lovely home, and a husband who’s been able to provide. She lives a quiet and sedentary life. She mourns the
Teens who cannot school and adults who can’t work,
Mothers who can’t lift the children they have birthed.
People from complications who have died,
And some who took their lives from suffering denied.
In an essay associated with that section of the poem she talks about Tom Hennessey, Vanessa Li and her own friend Lisa who committed suicide. I am reminded of John Falk, author, husband and father who left a wife and two children behind.
Persistence and small changes over time will make the difference for ME/CFS
What she calls the “out-side in” suffering – from the doctors, the ignorant healthy and society in general – is immense. The inequities motivate her, though. There are still things she can do – the book being a prime example. No one would ever guess that Valerie’s book and the film “Unrest” – both so beautifully and professionally done – were created by people with such restrictions.
Valerie ends the first section of the book with a call to action. It’s true that there’s so much to do and no clear pathway forward. None of us has the sense that we are strong enough or smart enough or connected enough to succeed, but that’s true for anyone who is aiming for great accomplishments.
Valerie reflects on something from Leonard Jason: that those committed to creating change must have “dogged optimism, community support and spiritual beliefs as their shield” as well as patience and persistence. Small wins are the key to creating long-term change.
Ultimately, Jason says “It’s endurance, it’s staying committed to something over long periods of time.” The ME/CFS community will win out by our not giving into resignation, anger or dismay but to each of us doing our small part over time.
This illness community, global and strong,
It needs so much help but I’m glad to belong.
Thank you to everyone working so hard;
Many are ill, but they still hold the cards
…Choosing action …
…and compassion…
…Connecting ME to you…
Things have happened since Valerie wrote this book. Three small ME/CFS NIH research centers – the first in almost 20 years – have been funded, an in-depth study is underway at the NIH, we have our first ever full-time ME/CFS advocate (the SMCI’s Emily Taylor), the film “Unrest” is one of 15 documentaries under Oscar consideration and is making waves internationally…These and many other steps are how the race is won…
Some day they’ll put all the pieces in one,
And then all of us…WILL SOAR.
Conclusion
What an excellent witness – blending personal insights, compassion and understanding – Valerie is for ME/CFS in the first section of “Lighting Up a Hidden World: CFS and ME”.
Valerie’s song and her story will resonate, validate and deepen the experiences of people who have ME/CFS. It will also provide much-needed insights into the struggles, fears and aspirations of ME/CFS patients for their families, caregivers and others who come across them.
Llewellyn King on “Lighting Up a Hidden World”
For more information on Valerie or the book (paperback or ebook) see http://www.valeriefree.org/.
Next Up – in Section 2: “In The Global ME/CFS Community – Voices of Struggle and Strength”, members of the ME/CFS community get their say.
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As told in Dr. Ritchie Shoemakers books “Mold Warriors” and “Surviving Mold”, at the moment Dr. Cheney persuaded me to serve as a “prototype for a new syndrome”, as he put it,
my first thought was.
“WOW. Start a new syndrome? Who wouldn’t want to talk to someone like that? I would! I’d have lots of questions”
That is part of why I agreed.
To “bear witness” to the Battle of Incline Village.
The fight with the CDC that culminated in this new syndrome.
Because I had been certain that many, many people would wish to know the real story of how “CFS” came about.
Hi Cort. Thank you so much for this. You have really captured so much of what “Lighting Up a Hidden World: CFS and ME” is about in the first sections.
I was not able to play the video from the Bedfest reading however. Is it just my computer?
Again, wonderful work!
Thanks! I thoroughly enjoyed reading the first half of the book 🙂
(The video is fixed)
Hmmm… It doesn’t work for me, either (about eight hours after the time stamp on your comment here).
It worked for me and then it stopped working again (sigh…). I’ve replaced it with a Llewellyn King video on the book.
Hi Valerie!
I am enjoying reading about your book and now hearing/seeing you directly on the video. I like you! But I also want to comment on one of the good points you made here—that even though you stopped getting “sick” frequently as you first did and instead only very rarely get colds, that your condition goes downhill anyway with exertions, etc. I am the same way and also get easily “socked” but no more in the form of colds and flu-type illnesses. This strange immune system is employing some means to protect against those but is still deficient in other ways. Immunoglobulinemia is one of the terms applied to the abnormally low test results I get.
Hi Valerie thank you so very much.Tears are flowing.We need this so much in Australia we are in the,dark ages here. Thank you also Cort you are so appreciated.
Thanks Peach. I hope that many people with buy Valerie’s book and spread it around.
Thank you Cort, for the review, Valerie Free’s book looks to be inspiired, informative and interesting.
We are ‘down under’ but not quite in the dark. Our government has just announced announced the establishment of a 12 month ME/CFS Advisory Committee to advise on current needs for research into ME/CFS, as well as clinical guidance on the diagnosis and treatment of the illness. WOW!!! Another step forward.
Thank you so much for writing this book, Valerie! I’ve been meaning to buy it for some time now — I just did. And thank you, Cort, for the wonderful in-depth review.
You are all so welcome. That is why I wrote it so that others could use the book as their advocate and take it with them to doctors, put it in libraries, etc. That is what we have been doing.
Thank you so very much for speaking out and sharing what you have been through. I was diagnosed in 1996/97, I’m now 61. Extremely frustrated w/medical society. Have tried many medical and natural practices w/not much change. Practice 3 breathing techniques, yoga, stretching, walking, swimming, changing diet for the umteenth time, veg’s, fruit, low sodium, low carbs, low fat. Try not to eat much sugar, white flour/foods – GF, dairy, etc. Take various supplements. So all consuming. Expensive. Still Fighting. Miss myself!!!
I agree. It does feel like so much work and thought for what seems so little gain. But I have been told that keeping as well as we can might be advisable so that we may be able to try something should there be a breakthrough. Also it may keep further complications away.
There is a part in the book where I speak on mourning the lost self. I felt at that time that there is nobody closer a person can lose…no “death” that can be nearer to us… than such large pieces of ourselves. I miss my healthy self too.
“It took a year and her watching agents parked outside her house watching her…”
This is one of the things that has infuriated me for years…being watched, followed, stalked, victimized by what I finally found was a stream of “private investigators” sent not only to watch me, but engage me in conversation, interrogate me and so forth because it was assumed I would be applying for disability long before I even knew such a thing existed…
(And not to mention the possibility of malpractice suits…)
And when I told anyone this was happening, that I did not know who these people were or what they could possibly want with me, a nobody, that I was being viciously stalked, intimidated, threatened without explanation, having my life interfered with in more ways than anyone would believe, that I realistically, literally feared for my life, I was told over and over that I was “imagining things” that I was “paranoid” etc. and at that I must be suffering a “form of mental illness…”
Until one day, when I finally decided to corner one of them…
He was shocked that I even noticed him, quickly confessed as to who he was, why he was bothering me and how he would only get paid if he got “evidence” on me…which explained why there were so many of them…
They did not assign the “job” to one of these people at a time-it was more like they were (are) bounty hunters and anyone could have a chance at the “reward” of getting proof of a crime that was not happening…
So, after that, other people started watching these people watch me and taking photos of them, their cars, etc. on my behalf…for years…
(Many did not or do not even have a legitimate license of any type).
To this day, no one wants to admit to me this goes on and what legitimate “investigators” are allowed and not allowed to do…
And my life and my medical care are STILL being interfered with..
I really felt it was important to bring out every experience I had so that others could relate; for example, the disability insurance story. These are frightening and confusing experiences when sick…even traumatic. I did not start writing until I was sick for 20 years and it amazed me as to how each memory or trauma was still there (in detail), not so much in my thoughts but streaming out of my body somewhere as I wrote. I guess we really do store things we are no longer directly conscious of?????
Hi Cort and everybody,
I was just wanting to make a point about the style of writing and how it can be a bit awkward at first, as you mentioned, until you get the hang of it. We were very clear about the major audience who may be reading the book (although my intended target is the general public to raise awareness)
So I took great measure to make everything into short stories and pieces which all stand on their own. In essence, it is 7 short books in one. For example, some people may just read the introduction which is about narrative medicine, or the poem; some just prefer the side notes and don’t necessarily read them together.
The book was created more like “Chicken Soup for the ME/CFS Soul” in that it does not have to be read cover to cover but can just be opened anywhere, and patients or the public or the medical profession will walk away with something new to learn or ponder, without the overwhelm of its length and depth.
Then some people prefer the Stories of Others in the second section, others the researched footnotes (there are hundreds); and medical professionals particularly like the appendix for the formal documents.
Lastly, for those unable to read right now, the illustrations are a story in themselves. A picture really does say a million words and we had a great deal of fun creating them. That is one reason the book is so unique and versatile I think.
After all this explanation, though, many readers have told me they read it cover to cover and don’t want to put it down. This generally takes a week of reading to do. I look forward to feedback on these ideas.
Valerie bravo! I devoured your book from cover to cover, sometimes pausing to digest & lick my wounds. It is so real, so important, so validating. A massive feat for me to read with significant cognitive limitation… but I relished my short reading times. I bought two copies… the write up was enough to recognise the importance of this work, then ‘working’ the book exploded my expectations into gratitude & praise. Thank you for the healing & what feels like a good friend resting on my book shelf. I know I’ll go back to it again & again.
🙂
Hi Sandra. So good to hear that this book is comforting to you as well as helpful. If you feel up to it, I would really appreciate if you would post your wonderful comment on Amazon under reader reviews. It is so great to hear others with the illness give feedback about their reading experience, either paperback or eBook. I have not heard if people are enjoying the eBook although I know many are purchasing it that way. Perhaps someone could respond about that?????
Dear Cort, have fun in Montreal. My friend and book collaborator Maureen MacQuarrie will be there and will have flyers for the book to share. I hope you get to meet her if you have not already. I really appreciate the nice piece you have done here on Canadians who have contributed so much to the community.
valerie, thank you so much for writing this important book, so the world can know more about ME! i know it can take so much energy and time to write and edit a book. so THANK YOU. (i bought a copy, but have yet to read it. but i’m so glad i have it on hand so that i can read it, when my brain/life allows!)
Thanks, Rivka. It has been nice working alongside you and learning from your efforts as well.
Thank you for writing this blog Cort.
I would like to let the world know what a persevering, unrelenting champion Valerie is for the ME/CFS community. Having worked with her, by phone, for about 3 yrs. as I wrote, and rewrote, and edited and reedited my story for her book, I grew to know this amazing woman. She has remarkable insight and a great ability to teach and I can’t tell you how many times she helped me through some horrible difficulties. She made great sacrifices to write this book and I am honored to be included. I am even more honored to know her. She makes this world a better place. Thank you Valerie, for all you have done and continue to do to help bring understanding to this complex and much maligned illness. Love you my friend. Blessed New Year!
You brought me to tears this morning. It is really crazy remembering all the work and time and love that went into each story. I am so glad we did it then because I doubt any of us could accomplish what we did now. This book did create a lot of lifelong friendships which I cherish. Thank you for all your efforts and all your courage to write your blogs for Cort’s site. They were very eye-opening for me too.
When the student is ready the teacher is there…..,, and so is Cort Johnson!
Valerie, I just purchased your book, thank you so much for sharing your story. Seeing “Unrest” and now your book I’m inspired to see things in a new light.
That is wonderful. I really think that the documentary and the book go well together and fill each other’s gaps so to speak. I wish that the book was sold where the movie is seen so that people could really look at all aspects of the disease and the stories of many – not all in the most severe category. Because we all are at different stages and ages of life and phases of illness, it would be very hard to cover it all in one or two documentaries. So “Forgotten Plague” and “Unrest” are invaluable for so many reasons. The book takes people in detail through the other pieces which may have been left open to question. It certainly takes a village.
From Patricia: (Patricia made this comment on an image) – i have had me/cfs for twenty-five years and have been unable to work in all that time. i would love to read your book, but priced at 29.99 dollars for a paperback i will have to wait until the price goes down or i can buy a used one. i’m just curious, why so expensive?
Hi Patricia. First off, that is one reason I made sure there is an e-book available because it is so much less costly. I do realize, however, that it is not the best way to read for many, and it does not do the book justice in my view.
But unfortunately, that is the cost of having a paperback which is large and complex in design on the market. If I put it in bookstores, they would add another 30% to that price. I personally get a tiny percentage as the author (I know, right?) The rest is the cost of having it printed and available on demand. There are many more costs to having a paperback available.
We did choose a larger sized book, and larger print with a lot of space and beauty due to the readers I suspected would be picking it up. And it is 500 pages.
Due to our Canadian dollar exchange (at over 30% more), here we are paying close to $38 at Amazon.ca for the book because the prices are set by US dollar rates.
I set the price down almost to wholesale cost at FriesenPress bookstore in Canada where it was published because of that crazy exchange rate additional charge. But then the shipping is more expensive. The book price is based on US dollars because it is printed there unless it a huge bulk order when it is printed in Canada.
Personally, I buy 20 at a time from FriesenPress for Canadians who are near me in location and I sell it at cost to keep the price down. That still ends up to be $35 per book here. That is just the best I can do to have it out there.
I was always told not to expect to make any profit on a project like this because of its incredible costs to create and produce, but I felt it was my way of contributing and donating to the cause… Rather than to donate cash to some other aspect of the illness.
Maybe Cort could help me to offer a book or two for free in a draw or something after this blog. People would have to submit their names and we could draw a winner and I could order one or two from Amazon to ship out. That would be great.
The other idea is maybe there are others who would not mind donating a few books so those patients who cannot afford one, and really want one, could have one. Just some ideas maybe Cort and I could look at. Right, Cort? (wink, wink)
thanks so much for your reply. i had no idea that the process of getting it out there was so costly and that the profit margin was so low. i also didn’t see where an e-book was available on amazon. i’ll be checking into it. i can’t imagine what it took to write something like this with this disease. i’m sure i can speak for all of us when i say thank you for doing that. i really look forward to reading it!
I don’t think an ebook is available. Maybe Valerie would say if it will be…
Yes, an e-book is available as we mentioned in the blog at the bottom of the review by my website. It is available at iTunes and GooglePlay. If you go to the website http://www.valeriefree.org you will find some of the buy options there. I hope that helps. Because of the complex design, it is basically a pdf file because it would have cost too much to have the design transferred to a regular ebook.
I’m an owner of a court reporting agency in Los Angeles and read this article. I’m going to post it on my facebook page for other court reporters to become aware of ME/CFS. I was not before reading your life story.
Thanks for helping us bear witness 🙂
Hi Mary Jo. What a great idea! When I left my court reporter position, after 15 years at Supreme Court, I was working with 30 other court reporters and more staff, and had seen many others come and go. We were all very young and many of us ended up lifelong friends. They have all followed the course of my illness and know of the book as well. I still stay in contact with some who keep the others informed. It is a unique job, isn’t it? As I look back, I realize how much pressure and perfection was required to do the job. I started when I was only 20 after two years to learn the trade. I definitely witnessed a lot in those court rooms – much I have forgotten now. But it was a very big position for someone so young and naive as I was at that time. I enjoyed it a lot but sometimes I wonder if that long-term acute stress (which I did not realize) had something to do with my demise; along with the content of what I was hearing and transcribing over and over. I guess we will never know. How did you come to read the story?
Happy New Year Cort and everyone,
Cort are you aware of the news just before Christmas that the Griffiths University researchers in Australia believe they have established a diagnostic test, and that it relates to poor calcium absortion into cells? This seems to have come a bit from left field, unless I am mistaken. They are also suggesting that blood pressure drugs might be able to help due to a mechanism relating to cellular calcium.
Hopefully this is not another false dawn – wouldn’t it be great if we had some real groundbreakers in 2018.
Cort,
This review is outstanding. Thank you for taking an interest in Valerie’s wonderful book.
When she first approached me to contribute my personal story I was a bit skeptical because I’d submitted a short survey for a Fibromyalgia book and was misrepresented. My wariness completely fell away in the first few minutes talking to Valerie on the phone. She is one of the most sincere, insightful, and mindful, and spiritual people I’ve met, and at the same time if quite analytical.
I’m so honored to have not only contributed my story, but to have worked with Valerie over an extended period on some of the early editing of the book. Valerie has a gift, a way of explaining and teaching to all audiences, and I learned much from her about the disease. I was immediately impressed by her determination to maintain the integrity of the history and current state, conveying facts and informing about all aspects of this disease in addition to sharing personal accounts.
You are correct that “Lighting Up a a Hidden World: CFS and ME” is the most comprehensive book written about ME/CFS, and Valerie did a masterful job in presenting the information in a creative and effective format.
We in this community are all witnesses, and we all share the responsibility of utilizing this book as a tool for creating and furthering awareness about ME/CFS.
Thank you and Valerie,
Claudia Goodell
Race to Solve ME/CFS
Hi Claudia,
How nice to hear from you in this way. I totally enjoyed working with you on the book and other ideas. I am often amazed to see how much many of us have in common. You have been working tirelessly for many years to keep awareness growing on these complex conditions, and I have been inspired by your story and your commitment to others with the illnesses. Wishing you and everyone real progress in 2018. To better health! Cheers.
As another ME/CFS sufferer who has contributed to Val’s book, I want to add my praise. Valerie’s story told as a poem with comprehensive notes about various aspects of the disease, along with the testimony of other ME/CFS patients and advocates, provides valuable information, insights, support and validation. I am encouraged by her call for meaningful change, delivered in a gentle but determined voice, infused with intelligence and hope. I have enjoyed working with her – whether brainstorming ideas, editing, or just exploring issues, sharing personal experiences, and laughing together — and feel as if I’ve made a life-long friend, even if she’s in Canada and I’m in either New Jersey or Arizona!
So many of us are just too ill to function as advocates for change. By sharing this book with family and friends, we can increase their understanding and empathy as well as our personal sense of empowerment.
I am happy to see Cort’s detailed review and hope that it will prompt others to benefit from Val’s hard work and dedication.
Carol Lefelt
Hi Carol. Those are some pretty strong and lovely words all in one. It was fun working with you on this project and I like that we can laugh about things when they can be so rough. Your story in the book points out a lot of unique aspects of living with these complex conditions and I hope others dive into your contribution to find these gems. Thanks for everything.