Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
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.
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 Sectdion 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.
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.
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.
….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.
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 …
…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.
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”
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.