One of my favorite Christmas activities is to enjoy a really good French meal. I start my indulgence with a hearty serving of escargot, defying my cardiologist.
But this year, I have declared a one-man moratorium on the eating of snails. My gluttony has been impaired for this and other visits to Chez Indulgence by a slim but compelling volume that makes you think differently about that humble creature: the woodland snail.
It is also a book for Christmas: a feel-good book about a sick woman and a lowly creature of the forest floor. You never feel sorry for the writer, even in her distress, and you feel joyful about the snail. You bond with it.
The book is “The Sound of a Wild Snail Eating” by Elisabeth Tova Bailey. It belongs in that category of books that, like tunes, becomes imprinted in your memory. Bailey’s book is not a work of fiction, and it is work of wonder.
Bailey, who used to be an outdoors woman and a professional gardener, was felled nearly 20 years ago by one of the least understood but most debilitating of diseases: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
“From where I lay, all life was out of reach,” Bailey writes in her book.
Nothing much is known about the disease, which afflicts about 1 million Americans. But there is recent evidence that it may be caused by the retrovirus XMRV.
My own research into CFS and hundreds of e-mails I have received reveal that sufferers have bad years, worse years and years of some improvement. One writer told me, “We are the living dead.” Others thought they had recovered, but fell back into the lonely painful abyss.
In Bailey’s worst year, a visitor put a woodland snail into a pot of violets and presented it to her. It was a whimsical gesture, but it may have saved her life by giving her an interest beyond dreaming of the life that could no longer be hers. Sometimes she was so ill, Bailey reports, that she could not turn over in her bed, so she watched the snail.
Later, she placed it (they are hermaphrodites) in a better home—a terrarium where it could go about its complicated life, which included audibly chewing squares of paper. She got attached to it and learned about its habits; its use of slime to get around; and its ability to fertilize its own eggs and bring forth young—an amazing 118 little snails — in this predator-free space.
As Bailey’s health improved, she began to research snails in general and to study the work of the extraordinary naturalists of the 19th century, mostly British, including Charles Darwin. In the book, Bailey quotes some wonderful observations from this rich period for the natural sciences.
Like Bailey, the 19th-century naturalists depended more on what they saw in the field rather than study in the laboratory. They found, for example, that even hermaphrodites love to make love; and if one snail gets amorous with another, the proceedings are protracted. Who would have thought?
Bailey does not dwell on her disease, but on the snail. In fact, the nature of the disease is not revealed until the epilogue.
The book is not a lament of life’s abounding injustices, nor is it full of humbug about the human spirit. It is an adventurous, fascinating investigation of a snail that comforted inadvertently as it went about its slimy business, habitat attached.
Bailey is a beautiful writer of the simple English sentence and an artful storyteller.
This is a book for Christmas because it makes one feel very good. Merry Christmas to all the snails of the earth – people, too.
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I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.
Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis in many parts of the world, mostly strikes people in their thirties and forties. The disease begins with flu-like symptoms which are often a precursor to a full collapse, often after exercise.
The disease largely disables the immune system; and leads to joint and muscle pain, cognitive dissonance, memory loss, dysphasia and problems with simple math. Sufferers are often confined to bed for months, functioning at a substantially reduced capacity, where the simplest tasks become monumental.
CFS-afflicted authors describe taking years to finish projects that should have taken months. These include Hillary Johnson, whose book “Osler’s Web” is about CFS; Laura Hillenbrand, who wrote the bestseller “Sea Biscuit” while struggling with the disease; and Deborah Waroff, who is writing a book about the Jewish hero Sholom Schwartzbard, but who has found the task dragging on for years, working as she can between severe periods of disability, confined to bed.
The human suffering of both the afflicted and those close to them is incalculable in its awful impact. One woman who e-mailed me wrote: “When I became totally disabled seven years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of the medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse.”
One of the most hopeful of recent discoveries is also generating a collateral fear. The retrovirus XMRV has been found to be present in CFS patients and has led them to worry about transmitting the disease to family members. One woman who e-mailed me from Britain wrote that her husband contracted the disease after years of nursing her. Who, she asked, will look after them now?
A sufferer in Maryland wrote to me that she worries about her family. She and her husband decided to have a child. They were blessed with triplets – and the return of the mother’s disease. Now she worries for her husband and the three babies.
A man—one-third of victims are male, although the National Institutes of Health treats CFS as a woman’s disease–sums up the anger in the community towards the political establishment, and particularly the Centers for Disease Control which changed the name from Myalgic Encephalomyelitis, in a controversial action.
He wrote: “Washington didn’t so much forget – they were never told. The CDC swept it under the carpet, despite the fact that their main raison d’être is to investigate and sort epidemics of new diseases before they take hold. Now, because of the CDC’s wrongdoings, there are more than 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back.”
Breaking down the e-mails, I find these commonalities:
· Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.
· Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.
· Anger at the media and others for not taking CFS seriously enough.
· The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.
· Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.
I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.
There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars.
- 102 responses