Peggy Munson is an award-winning fiction writer, poet, and essayist. Though she suffered from pre-onset symptoms, she became severely ill with CFIDS in 1992, following a sudden infection. “Stricken” is a compilation (edited by Ms. Munson) of many voices of CFS sufferers, talking in their own words about what it means to live with a debilitating disease.
Q: What was the catalyst for putting “Stricken” together? It must have been a daunting task given your illness.
Peggy Munson: My main impetus for Stricken was the fact that I felt CFIDS needed some fresh PR. There were plenty of medical books, books suggesting treatments, and some personal monographs, but nothing that really seemed to impact people at a gut level. I feel very strongly that CFIDS will not be understood until it is seen as a collection of human stories. I think one story – as in staring at one square of the AIDS quilt and seeing the depth of one life – can have an enormous impact.
As Susan Griffin writes in her section of Stricken, every illness has a “gestalt,” or felt quality. I think the gestalt of CFIDS, because so many patients are pushed into their homes and out of society due to the severity of their symptoms, is not really understood. I focused on the most honest, literary stories I could find that also might raise political or social consciousness about specific issues relating to CFIDS – such as assisted suicides, poverty issues, and relationship concerns.
My emphasis on story also came as a reaction to Elaine Showalter’s book Hystories, which asserted that CFIDS was a form of hysteria generated by media stories. While she made a point of NOT interviewing actual patients, I
wanted to show the merits and the individuality of each story of CFIDS. I
wanted to show that, contrary to Showalter’s assertions, CFIDS is far too
complex to be seen as a plagiarized set of symptoms.
Stricken was definitely a daunting task – I had gotten to the point of being
almost completely homebound and mostly bedridden by the time I began the book
(and remain so), and my cognitive impairments made it very difficult. Doing
Stricken was almost like climbing Mt. Everest and seeing the signs of those
who didn’t make it to the summit – I was contacted by other CFIDS patients
who had attempted similar projects and gotten too sick to finish, and I
didn’t know if I would make it to my goal. Toward the end of the project I
really was just putting one foot in front of the other.
Interestingly, though, I was able to better understand my own cognitive impairment, and figure out new ways to “fix” its influence on my own writing, by carefully studying the way cognitive problems played into the writing of others. Many years ago, I also worked for a blind writer who wrote her books on a tape recorder, then had someone transcribe the tapes, read them back, and edit orally. Since I had seen the arduous process another disabled person went through to continue writing, I knew my work would be different from what it used to be, but I was very determined to hold on to this part of my life.
Q: In the process of putting this book together, what are the most significant things you learned about CFS, yourself, and the many people out there struggling with this ‘invisible illness’?
PM: I learned that CFIDS patients are resilient, powerful, generous human beings. Many of the pieces I read in editing Stricken were very heavy – suicidal ideations, desperate stories about financial struggle, stories of loss and devastation. Despite this fact, I found there to be a thread of quiet inspiration running through all of them. One thing I found interesting is that the sickest patients are often the strongest activists and most
I learned a lot about the nature of oppression, especially oppression having to do with bodily weakness or failure, and about how people seek out hope, community, and connection in the midst of oppressive circumstances.
Perhaps the main thing I learned is that, despite our belief that we are in a modern (or postmodern) age, medicine still often functions like the blind men and the elephant. I think CFIDS, far from being a simplistic illness, can teach all branches of healing a great deal about utilizing a holistic approach.
Q: Now that you’re on the ‘other side’ of writing this book, how do you perceive its value? Is it accomplishing what you hoped it would?
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PM: The book has reached some academic programs that deal with disability politics, but I would like to see it reaching more of those and more people in the field of medical humanities. I would also like to see the book reach more members of the medical community, both the alternative and allopathic sides.
I think medicine desperately needs to be personalized — doctors need
to know that they don’t have to be heroes, and we need to share each other’s
humanity. What really characterizes the doctor-healer relationship is not
that the doctor is a godlike figure, but that we are all mortals, united by
our mortality. I think healers on all sides of the fence need to realize
that the objective and the subjective parts of illness can coexist and not
threaten each other. I think there is sometimes an impression in allopathic
medicine that science will be “tainted” by too much subjective human
The flip side of this is that when subjective experience is allowed in a healer’s office, and the patient is given more agency, the patient is then sometimes blamed for her own symptoms — the symptoms themselves are no longer seen as objective occurrences but as subjective creations. In fact, I think a true awareness of a situation comes from a combination of the objective and subjective parts of experience. I think human stories are necessary to medicine.
I have gotten great feedback from CFIDS patients. What is most rewarding is
that many patients have found the book to be an excellent vehicle for explaining the illness to family members, friends, and healers who simply did
not “get it” before they read the book. Many have also told me that it
evoked an emotional response from people who before could not see the illness
outside of clinical boundaries, and I think this is where true healing starts
– with empathic connections.
So, in that sense, the book accomplished what I had hoped – it reached the essence of the experience. I tried to focus on timeless issues – like metaphor and illness, spirituality, family, and the psychology of diagnosis. So I hope it will continue to influence public ideas about CFIDS and about illness in general.
Q: As a writer/poet, do you promote the act of writing as a
therapy for the people you meet who are struggling with CFS?
PM: Absolutely. I think for people with CFIDS writing can serve many functions.
For one, I think it is a form of actual physical therapy for people who have
severe cognitive problems and word-finding difficulties. It is a kind of
“memory trick” to record words on paper and read them back later. I think it
gives coherence to an experience that is so often baffling and isolating.
Writing relieves stress and makes the invisible visible. Some poets, such as
Federico Garcia Lorca, believe good writing is always a physical act, and
always in touch with both life and the reality of death. I believe this to
be true, and I think it makes anyone struggling with illness uniquely
qualified to produce powerful writing.
An editor told me recently that she felt my own writing made me more able-bodied, whereas many able-bodied people disable themselves all the time. I see writing as a vehicle, an adaptive technology that allows people who are dealing with limitations to transcend their experiences. I would also like to add, though, that CFIDS patients struggle with unique issues relating to the process of writing, and writing – like anything else – can be frustrating and exhausting for most of us.
I think it’s important not to focus on output or on matching the speed of
able-bodied folks, but rather on doing what one can.
Q: What are you working on now?
PM: I have a completed poetry manuscript which hopefully will be published soon. It deals extensively with my own CFIDS experience. I publish short stories here and there and am working on publishing a book of those as well. I might attempt a collection of CFIDS essays at some point, and I have done some very preliminary research for a book about pesticide-induced toxicity as it relates to CFIDS, Gulf War Syndrome, and other illnesses.
I have what one sick friend calls “CFIDS hummingbird syndrome” – I flit around from project to project but cannot stay focused on any of them. Mostly, I am working on healing.
To purchase or read more about Stricken, go tohttp://astore.amazon.com/prohealth-20/detail/0789008955/102-1430045-2093738