Book Review: “Pathogenesis” by Peggy Munson

 

Chronic Fatigue Syndrome (CFIDS), known outside the United States as Myalgic Encephalomyelitis (ME), is a poorly understood, overwhelming and controversial ailment. It can affect every part of the body including brain function. The severity can range from a mild intrusion on daily activity to complete disability or even death. There is no magic pill to cure it, only attempts at managing individual symptoms. This disorder can defy proper description.

But one woman, Peggy Munson, has been able to report from the trenches of CFIDS/ME with startling clarity. Her book of poems, “Pathogenesis”, gives the reader a glimpse into the world of one transformed by this illness. She holds nothing back, tearing into the complexity, heartbreak and even dark humor with the sharpness of a razor.

Munson’s is a truly original voice in a genre that invites cliche. When you read of one her poems, it is like crossing a threshold into her psyche. Her metaphors go in quite unexpected directions, sometimes intriguing, sometimes shocking, but never ordinary. 

The book has four sections entitled “Death, Rebirth”, “The Body as a Burning Prairie”, “The Brain Saw a Patina of Words”, and “Pathogenesis”. Individual poems address her family members, lovers, the medical profession, the possible causes of CFIDS and its many effects on the brain. One particularly pointed poem is called “To the Professor Who Received Many Accolades for Calling My Illness Hysteria”.

My favorite poem in the book is “Mother: Astrology: The Brain”. It evoked in me images and memories of my own mother and my relationship with her. A sample:

“…My element is fire…Mom is an air sign, feeding fire children to the point of reckless consumption….

…My love was a kind of hyperventilation. Just as ducklings imprint and see their mothers in everything, Mom made me believe in constellations.”

Peggy Munson wrote the novel “Origami Striptease”. She also edited the anthology “Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome”. She is quite well-known among CFIDS/ME awareness advocates.

“Pathogenesis” is NOT light material; it is for mature readers only. There were times I almost felt as though I were intruding upon something private, so brutally honest were these words. It can be a grueling journey, but I found it extremely worthwhile.

“The poem will be complete when it is obsolete – 

when it is but an afterimage of a hawk,

and you, the reader, know that we have met

in infrared and ultraviolet and loss.”

– from “These Words, Like Small Eyes Witnessing”

_______________________________________________

Title: Pathogenesis
Author: Peggy Munson
Publisher: Switchback Books
IBSN: 978-0-9786172-2-6

Submitted by staff writer Karen Brauer
Karen has been writing for butyoudontlooksick.com for many years. Her movie and book reviews are always descriptive and honest. She has a keen eye for pointing out what might be useful to a viewer/reader that might have certain disabilities, or sensitivities. She loves reviewing movie dvd’s and television shows.

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  • Melinda

    I have a friend who had devastating CFS for several years before going to an acupuncturist and doing qigong. She had lost her job, and was about to lose her home. I told her about my acupuncturist, who is very good, and also teaches qigong. Since she had no money, and she is a friend of mine (I am a long-time patient for other reasons), and he was interested in a real challenge, he treated and taught her for free.

    At first, in qigong class, she couldn’t even stand up, and sat in a chair, doing what movements she could. She had acupuncture for months, I don’t know how frequently, at least once per week. I was out of touch for awhile, and then I saw her a year or so after she started acupuncture and qigong at the grocery store. She was shopping with a friend, drinking coffee, and she said she was completely back to her normal pre-CFS state. I am still amazed.

  • Thank you for this review – I look forward to reading these poems when physically strong enough for a book as I’ve got a lot out of reading the powerful poems about severe ME/CFS at http://www.stonebird.co.uk.

    ME/CFS is so terribly underestimated. Many people haven’t heard of its most severe form and when they do it is dismissed as rare – it’s not.

    I’ve suffered from ME/CFS at every level from so mild that I led a normal life simply intruded upon by a myriad of horrid symptoms to so severe that there have been multiple occasions when I’ve come close to dying. And not through suicide. Through the illness making me so ill that my body couldn’t cope with the interventions I had come to need (artificial nutrition, IV fluids, antibiotics and more) – when I hit such crises, opting for no intervention could kill me, but then so could the intervention. Given all that’s happened one could say I’m lucky to be alive, but equally question the “lucky” given what being alive means for me.

    My mother and full-time carer (I’m 29) says “After 23 years with the disease her situation is currently very extreme. She has over 100 symptoms, needs to take massive opioid doses and strong anti-sickness meds just to live, requires extensive care 24 hours a day, lies alone (company worsens her symptoms), still and completely flat in a blacked out silenced room, cannot be washed and suffers terribly when touched at all. Which you’ll all guess from personal experience doesn’t even begin to convey the reality of it. She can do almost nothing independently – though limited use of a BlackBerry is a lifeline for her.”

    People are shocked to hear that severe ME has meant for me periods of paralysis (often from the neck down), blindness and muteness; it has meant being doubly incontinent and at times being unable to understand what is said to me or recognise my own mother. But through my work (in better phases I’ve been a charity worker and health writer – last year I had a book offering help on living with severe ME/CFS published) I have known countless others experience the same.

    Death may not be common in ME/CFS, but we associate death with MS and those with severe ME/CFS (estimates of patient numbers suggest that people are experiencing it severely in somewhere between 10 and 25% depending on the diagnostic criteria used in milder cases), particularly very severe ME/CFS are vulnerable to exactly the same things which kill MS patients.

    If anyone is interested to read my story – an experience of very mild, mild, moderate, severe, very severe and extremely severe ME/CFS between the ages of 6 and (nearly) 30 – it can be found at http://www.stonebird.co.uk (scroll down the home page or go to the contributors page).

    Incidentally I’ve been wondering if bydls.com would be interested in reviewing my book which was aimed at the bedridden but equally seems to be helping the housebound and offering little bits of benefit to others with severe ME/CFS. Last year I wasn’t well enough to tell bydls.com about it and it’s now taken me ages to write this leaving me with no strength for contacting the team to ask. So hope this will be seen!

    Wishing everyone a bunch of extra spoons,
    Emily

  • Fiona

    It’s been known for a while that there have been extreme cases where the patient is so sick (totally bedridden, fed through IVs etc) that they’ve gone into organ failure. Because ME isn’t on the death cert. it sn’t publicised. It’s an extremely tiny perentage, though.

  • Miranda Rice

    CFS can cause death through accident – if your brain is not functioning, you will tend to trip more, fall more, walk off the curb, not see a car coming…Driving on very bad days is equally dangerous, as is work with dangerous machinery or tools. Death from CFS can be caused by the bewildering array of treatments and medications, all of which have sides effects, and many are be lethal when taken with another medication, or, through poor brain function, exhaustion & chronic pain, a CFS sufferer takes too much or the wrong kind. And if you have been suddenly disabled by CFS, and you have no work, no money, no health insurance; you are very very ill & your doctor or your friend or your wife or El Perro thinks that you are just lazy,crazy & making it all up – that it’s not that serious, just pull yourself together, make an effort….and you realize that your family would have been better off if you had died (life insurance!), suicide that looks like an accident is tremendously appealing. So death by CFS, probably began when someone died from “complications resulting from CFS” or “died from unknown causes”. The first you may be able to find statistics on, the second is unknown, since CFS is so poorly understood.

  • velvt

    that was my question, too… except for suicide i have never heard of CFS caused deaths. although i suppose many car accidents and that sort of thing, even accidental overdoses, could easily be attributed. i have had CFS since 1982 and it’s getting progressively worse and i’ve about had it.

  • El Perro

    Death, by CFS? Since when?