Marcus Sedgwick is a British writer of young-adult fiction who here tackles how a young man deals with chronic illness that forces him to live away from toxic society.
Keywords: Snowflake AZ, Snowflake, Marcus Sedgwick, novel, fiction, multiple chemical sensitivity, MCS, chronic fatigue, CFS, myalgic encephalitis
Eighteen-year old Ash travels to Snowflake, Arizona, to check up on his older brother, Bly, who mysteriously moved away a year ago. It turns out that Bly had gotten sick with a controversial illness that carries a stigma, so he was embarrassed and didn’t tell his family what was happening to him.
Bly has multiple chemical sensitivity (MCS). He had to stop attending classes at the police academy and flee the big polluted city he lived in. He then ended up in the high desert where the air is clean and he feels so much better. Here he found a community of other people in the same situation.
Ash tours the community and sees how the people there live. People with MCS need pristine air to manage their illness. This includes living in houses without toxic building products. Ash meets people who have built their own homes, or live in garden sheds or in the back of pickup trucks. One guy is living on the porch of a house he just bought and is working on modifying so he can live inside.
Money is tight as these people are too sick to work and since the illnesses are not accepted by many doctors it is difficult to obtain disability payments or help from families.
Ash is rather skeptical about all this, but he has never heard his brother make up crazy stories. Then Ash gets sick himself with what mostly appears to be chronic fatigue syndrome (CFS). He visits a local physician who tells him there is nothing wrong and his symptoms are all in his head. That rankles him, though he still struggles with accepting his situation.
His brother Bly is determined to return to the career he cherishes. He steels himself against the chemical onslaught of “normal life,” and moves back to the big city, but is defeated. It is not an illness that can be wished away.
This is a story about how difficult it is to have a sickness that is controversial. Some doctors, in their arrogance, conclude that since they do not understand it, then it must be “all in their heads.” A mistake they have repeated many times with illnesses that are accepted today, but weren’t in the past, such as migraines, asthma, endometriosis, asbestosis, Parkinson and more.
This can have real consequences, as these doctors can turn family and friends against the person in need of compassion and understanding, which we see in Sedgwick’s story.
There are many educational moments about humanity, like how we all tend to divide people into “our tribe” (who we help) and “others” (who we do not help). The difference is how big we consider our tribe – to some it is quite small.
This also explains how families see a sick person as leaving their tribe and thus isn’t worthy of their compassion.
The story describes some of the absurdities people with these illnesses are sometimes subjected to.
Sedgwick writes about a very difficult situation with compassion and personal insight. He explains many features that would be baffling to a reader who is not familiar with these illnesses, without resorting to pity or lecturing. He correctly states:
To be sick with a long-term illness is not something most people understand. Not until it happens to them. And when it does, it changes the way you see life.
Popular media have often treated people struggling with these illnesses with derision. This book helps humanizing them and follows in the footsteps of other socially realistic novels, including famous books like The Grapes of Wrath, The Jungle and Uncle Tom’s Cabin, though Snowflake, AZ is much lighter fare.
This book could easily have become a depressing story, but it has an underlying positive message than even sick people can find fulfillment and contribute to society. Ash, who grew up in a family where nobody read books, discovers the joy of reading and learning from books, as well as the sense of community he didn’t have when he grew up.
The middle part of the book vividly conveys the social isolation and limitations imposed on the sick people. This part is slow read as not much is happening. The tenacious reader is rewarded with excellent writing in the last third of the book, where Ash’s health improves and he is able to explore the area he lives in and meet interesting people.
The book is written for young adults, but can be read by older folks as well. It is a universal story about living with a chronic health condition and should appeal to many. It also has some educational value about what it is like to have chemical sensitivities or chronic fatigue.
The book is a work of fiction, but it builds on actual stories. MCS is a real illness that is still poorly understood, so there are doctors who believe MCS is “not real.” There is also a whole political issue as well, which the book does not mention.
The Snowflake MCS community really exists (see below). The characters in the book are based on real people there, though with much fiction added for the story. There really is a “Mona” who has taken in MCS refugees, though she never had a goat. There really is a “Finch” who lived on his porch while modifying his new house. There really is a “Detlef” who drives a modified Mercedes and lives in a remote DC solar house. Mary, Harry, Jenny, Polleux and The Sick Birds also resemble real people, with a lot of fiction added.
Ash and Bly are not modeled on specific people, but are composites of several people – with a lot of pure fiction. Every year the Snowflake community is visited by people who are looking for a healthy place to live in the hope that they can get better. They all know they have the illness before they arrive. There haven’t been any who arrived seemingly healthy and then got sick, like Ash in the story.
Marcus Sedgwick visited the Snowflake community in May 2017, where he visited several people, including this reviewer. It is amazing how many details he picked up and wove into his story of fiction. Of course there are also some details that aren’t quite right.
We build our homes of steel because that is a low-cost safe material. There are no houses or cabins made of wood, as most of us do not tolerate wood terpenes and the paint needed. We do not use wood stoves or kerosene lamps, as they make us sick.
We tend to be careful with what we eat and drink, both in an attempt to get healthier and because the chemical additives in junk food can make us sick. Most of us have to avoid alcohol in any form.
A bonfire party is unthinkable, due to the smoke. We do have parties, but they are with quality food and no bonfire.
It is difficult to describe what it is like to be sick. Sedgwick is intimately familiar with CFS, while his description of MCS is vague and limited to “headaches” and “rashes,” though he shows insight by stating:
At first you’re afraid you’ll die. Then you’re afraid you won’t.
A description of the real Snowflake community is on: www.eiwellspring.org/Arizona/SnowflakeCommunity.htm
The non-fiction book The Healthy House Quest, by Jerry Evans, describes the actual Snowflake community.
Marcus Sedgwick states that the inspiration for his book came from Thomas Mann’s classic The Magic Mountain. The story takes place around 1910, when there was no cure for tuberculosis and the best treatment was breathing in fresh, dry and unpolluted air. Here we follow young Hans Castorp who travels to visit his cousin who lives in a high altitude sanatorium together with other sick people who have arrived there from all over the continent and now live sequestered from the rest of humanity. Castorp arrives believing he is fully healthy himself, despite disturbing signs to the contrary.
Other books about environmental illnesses are reviewed on www.eiwellspring.org/booksandreviews.html