A Note from the Author

This unconventional narrative takes readers on a wild ride through the world of Lyme disease; a world that's riddled with scientific discoveries, medical anomalies, diagnostic misadventures, and the sorts of cataclysmic symptoms that would normally define a disease, but which don't define Lyme because, basically, so-called experts can't quite agree on what the symptoms of Lyme actually are and instead take great pleasure in contradicting one another as publicly as possible. This world is seen through the eyes of a patient who won't give up the search for answers even as she loses control of her mind.

Rain on a Distant Roof leverages everything I've learned as a writer so far. It's a work of personal journalism — not quite gonzo, but not far off — that examines the fractious, often vitriolic debate surrounding Lyme disease from a perspective a patient with a diagnosis so rare, it provides a unique window on a medical debate in which no one involved can claim objectivity. At least not with a straight face.

This book is divided into three parts that will be familiar to anyone who has ever read Dante Alighieri's The Divine Comedy. If your memory of that opus is a bit rusty, they are: Inferno, Purgatorio, and Paradiso. Like Dante's poem, this book describes one person's journey through hell and beyond. Unlike Dante's oddly misnamed masterpiece, this book actually delivers humor, much of it inappropriate.

The story breaks down like this:

Part 1: Inferno

Our journey begins in a dentist's office where the sudden onset of a bizarre set of symptoms results in a downward spiral that mystifies patient and doctors alike. The complex bacterium at the root of the chaos is eventually identified, but not before a catastrophic collapse. Debuting in this section are a number of incidents that give rise to a medical dilemma, including increasingly baffling run-ins with doctors, alarming phone calls from public health officials, a few wrong diagnoses followed by a few (possibly) right ones, a severe and decidedly freaky reaction to an unsuccessful round of treatment, and a "back alley" encounter with a doctor who may hold the key to curing this disease, if only he doesn't lose his license to practice medicine before he can administer it.

Part 2: Purgatorio

Our journey continues with the agonizing decision to leave the healthcare system to battle a brain infection without the (rather dubious) help of doctors. And what a battle it is. Readers will get an intimate look at what it's like to live with paralysis, seizures, convulsions, hallucinations, out-of-body experiences, aphasia, memory loss, severe cognitive impairment, and flat-out neurological chaos. The Magic Health Fairy puts in an appearance, as does a protective gargoyle. (I mentioned the brain infection, right?) And that's just the tip of a large and very strange iceberg. This middle section also delves deeper into the enigma that is Lyme disease. We take a hard look at what's known about the mysterious bacterium at its root, the common co-infecting organisms, the ticks that spread the disease in Canada, and the geographical distribution of Lyme-infected ticks in this country. (Spoiler: They don't seem to be located where public health officials think they are.) Purgatorio ends with the mildly reckless decision to treat Lyme with an unproven "remedy" — by which I mean a substance that's more commonly used as a commercial textile-bleaching agent than a medicine — in a possibly misguided bid to stay alive.

Part 3: Paradiso

This section investigates the myriad issues surrounding the official concept of Lyme disease in Canada and examines the future direction that Lyme disease research will have to take if the healthcare system is to serve those patients who are well ahead of the diagnostic curve. In this section we find out why doctors are having such a hard time recognizing Lyme for what it is and an even harder time figuring out how to treat it appropriately. But that's not the fun part. The fun part comes when we take a look at why one person being diagnosed with two relatively rare tick-borne illnesses threatens to upend everything health authorities know about Lyme disease in Canada. And yet, in a really cool twist that couldn't have been predicted when I set out to write this book, that diagnosis is now being backed up by cutting edge research that's yielding results the researchers themselves didn't quite expect.

In addition to the three primary sections, this book includes the boring stuff that a book like this must necessarily include, such as a table of contents and a selected bibliography. It doesn't presently include a glossary, but mostly because I've been too busy writing the book to construct one. I suppose it stands to reason that the average person doesn't have a clue what a Jarisch-Herxheimer reaction or a spirochete is. I remember a time when I didn't know either. And then I wrote this book.