Unseen Illness, Controversy, and
Chronic Fatigue Syndrome
(Southern Methodist University Press)Dorothy Wall has Chronic Fatigue Syndrome and she's mad. She's mad at the name Chronic Fatigue Syndrome. She's mad at the medical profession for ignoring a disease that, she believes, may have 800,000 sufferers in this country alone.She's mad at people who offer her home-remedies when she tells them what she has. She's mad that people don't understand what it is like to live with CFS. She's extra mad at doctors who tell her it's all in her head.She is also mad at her body when it doesn't listen to what she wants to do. When for example, she goes to a party knowing that she will pay back with a week or two in bed from the loss of energy, whatever energy she has left over with this maddening disease.And it is, apparently, quite maddening that CFS cannot be diagnosed. There is no test that proves that one has it. Thus, for the medical profession, unlike lupus, or beri-beri, or dengue fever, or syphilis ... it doesn't exist. One can traipse around for years to different doctors' offices, only to be told that one's tests are "negative" --- which is doctor-speak for "You're OK, you just think you're sick." Which, as I have said, gets Wall riled up.
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What are the symptoms? You name it: loss of motor control, sore throat, on-going "flu-like symptoms" that last for weeks or months. Low energy level, difficulty walking, reading, or even watching television. Extra sensitivity to loud noises. Memory impairment, confusion, word-finding difficulty, asthma, chronic sinus conditions. Muscles painful to the touch.
One of the worst symptoms might be described as letter-itis. It refers to the compound words that she and her fellow CFS-sufferers have to deal with. The CFDC and the NIH don't go after CFS with enough gusto. Neither do the AMA, the NIAID, the DHHS, the CDC and the SSA. She has to battle with all of them over what she believes might better be termed NDS (neuroendocrineimmune dysfunction syndrome) or CFIDS (chronic fatigue and immune dysfunction syndrome).
It's a jungle, inside and out, and Ms. Wall's story is a 300 page diatribe for more research, more empathy, more caring, more information, and more vision. It is an extended cry for help.
And like many cries for help from the chronically ill, it may be just too much, for too many pages. You can write long autobiographical books on the divine, war, history, love, passion, biography, and science. But there are three subjects in the autobiographical form that, I contend, just can't cut the mustard ... unless the writer has a high art, the style of a Fitzgerald, Hemingway, Marias, or Nabokov. (It's significant that this last writer had one of the most painful ailments of all time --- facial neuralgia --- but never chose to devote a book, much less an article to it).
It is impossible, I claim, to write, and write flowingly and well about depression, chronic illness, and chronic pain. Why? The subjects by and of themselves are just to ... well ... painful and depressing. They do not lend themselves to the orderly flow of narrative style, the build-up of literary tension, and most of all, artistic resolution. How do you resolve something that is on-going?
You can write around it, or through it --- but you cannot write it for a full book. Relief and change must be the secret of a commanding, soul-touching piece of writing.
Wall has all the smarts. She has been teaching writing and consulting writers for years. She has all the tools to shape her narrative. She starts by talking about her personal research into CFS. She lets us in on some personal history (some disturbingly personal). She interlards the text with meaningful quotes. She offers an interesting historical query: was what they call "neurasthenia," one of the most puzzling diseases of the Victorian period, really CFS?
She then intersperses vignettes of her morning or afternoon ... about trying to walk three blocks, or even one, from her house. She puts in quotes from Oliver Sacks, or Ernest Hemingway, or Reynolds Price, or Christina Rossetti (one of her favorites).
All this formalistic writerly art --- but she can't get away from the fact that she has compiled a depressingly static book about a depressingly static subject.
I know of many people who have tried to write about disability and survival and dealing with the world ... and the books are usually bummers. Even the ones that Wall cites as having succeeded --- Reynolds Price on disability, William Styron on depression --- are uneven at best, misleading at worst. The only writers, those who can pull it off, are those writers who interlard comedy --- dark comedy, indeed --- to get the message across. There's John Callahan's fine Don't Worry, He Won't Get Far on Foot about being a full-time, life-time paraplegic. There's Betty MacDonald's sweetly understated The Plague and I on surviving tuberculosis some fifty years ago. And finally, there is a masterpiece about living with and caring for a quadriplegic, Susan Parker's immensely affecting Tumbling After.
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The most interesting passage in Encounters with the Invisible doesn't have to do with Ms. Wall's fights with the medical establishment. Nor is it the story about how her life has been turned upside-down, along with a painful recitation of her symptoms. In fact, many of the latter seem to be common to plain vanilla-fudge geezerhood. I've passed 73, can testify to newly-discovered fuzzy memory, dizziness, inability to get about, unrelieved aches and pains, depression, transitory illnesses (which are no longer transitory), sinus infections, aches, etc., etc. It is called ageing.
No, the one that startles one is a passage that reveals that her daughter is suffering from candida. Like CFS, it saps the energy, causes recurring infections, mood swings, the works. "Are candida, CFIDS, and other immune system disorders related?" the author wonders.
The last twenty years have seen a startling rise in lupus, MS, allergies, asthma --- an early warning sign, as many believe, a sign of the vulnerability and fragility of a planet under ecological assault. Are these illnesses connected to the roughly 80,000 to 100,000 chemicals that have been poured into our environment since World War II --- organophosphate pesticides, dioxins, DDT, benzene, lead, arsenic, cadmium, PCBs? Approximately 20 new chemicals are put into use each week, yet we know little or nothing about their potential health effects ... Even those chemicals that are tested are studied primarily for acute, short-term effects rather than long-term immunotoxic damage or interactions with other dangerous compounds.
CFS is scary enough, but the idea that we may well be bringing this and dozens of other ailments down on the heads of our families through systematic ecological neglect is enough to scare the bejesus out of those of us who care for our children and grandchildren, have high hopes for their lives, health, and joy.--- L. W. Milam