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Wednesday, October 29, 2014

Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada
By Vanessa Farnsworth

Today, I am honoured to interview Vanessa Farnsworth, author of Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada

Following the interview, enter to WIN a paperback copy of Vanessa's book from Cookie's Book Club! 

Plus, join Vanessa and I for a Twitter Q&A on November 12th. One lucky tweeter will WIN an electronic copy of the book, courtesy of  Signature Editions. Instructions follow the interview.

By Vanessa Farnsworth



About the Book

By 2020, it’s estimated that more than 80 percent of the population of eastern Canada will be living in regions that are endemic for Lyme disease and the numbers of infections are expected to soar. Yet what remains unknown about this debilitating illness continues to trump what is known, placing the health of Canadians increasingly at risk.

Rain on a Distant Roof uses the latest in scientific and medical research to explore the considerable challenges that have placed Lyme disease at the center of the most fractious debate in modern medicine. Those challenges include the inability of doctors to properly diagnose the illness, the absence of reliable medical tests, the reliance on controversial treatment guidelines, and a public health response that is, at best, problematic.

Along the way, readers are introduced to the bizarrely intelligent bacterium at the root of the Lyme disease – a bacterium so strange that scientists describe it in terms normally reserved for the creatures found only in science fiction - by the author, whose own terrifying battle with the disease unfolds before the reader’s eyes.

This groundbreaking book, a compelling mixture of biography and scientific discovery, is a must-read for anyone who spends time in nature or even their own backyard.


An Interview with Vanessa Farnsworth

Cookie's Mom: Vanessa, thank-you for agreeing to speak with me today.

I've read a lot on the topic including other memoirs, and was curious to see how your book, a Canadian offering, would compare. I wasn't expecting it to be a good read, honestly, but I was hoping to learn something. The topic can be dry and, let's face it, memoirs themselves are a mixed bag in terms of how well written and how engaging they can be. I was pleasantly surprised. In fact, I was in awe of your ability to weave non-fiction facts about Lyme Disease with memoir in such an inspired way. I was engaged throughout the book, which is no small feat considering the sheer volume of information you've managed to include. The information is explained thoroughly and clearly and the memoir components are entertaining and enlightening. I enjoyed the book so much that I shared it with friends to get their reactions. The unanimous sentiment was that they simply could not put the book down until they had finished. This is a book I would recommend to everyone, Lyme Disease patient/caregiver or not, Canadian or not. It's full of important information about protecting our families against Lyme Disease and what Lyme Disease can look like, and it's just a fascinating and entertaining read.

I can't thank-you enough for writing this book.

Before I get to my questions about the book itself, can you please tell my readers a little about yourself and your writing career before writing Rain?

Vanessa: I have been a creative writer and journalist for more than 20 years. I'm a freelance magazine writer by trade, mainly in the fields of agriculture and horticulture and I've written articles about Lyme Disease, but found I couldn't get into any depth within the 1500 word count of an article, so I decided to write a book.

Cookie's Mom: Please tell us about your history with Lyme Disease and how it led you to write this book.

Vanessa: Having Lyme Disease is a lonely experience. It's not a well-known illness and people think of it in terms of arthritis and a rash, but it’s so much more than that. I disappeared for years. People didn't understand where I’d gone. I was isolated from friends and family who would get frustrated and ask, "Why can't you get better?" I felt alienated. My relationship with my husband barely survived.  Almost overnight, we went from two people running a company to just one person running it and he also had to be a caregiver and run the household. I had to have a chaperone because I would get lost and because I couldn't tie my own shoes. I was having seizures and forgetting what happened. I would completely lose chunks of time. Doctors had no awareness of the illness and sometimes a lack of respect. My relationship with the healthcare system changed dramatically during the Lyme years and has never really improved.

Cookie's Mom: Just how hard was it for you to write this book?

Vanessa: I had to go through psychotherapy just to face what happened and I had to learn to read again. Writing the book was both mentally and emotionally challenging. I wrote it paragraph by paragraph and started with the research because it was much easier to face than the emotional baggage that came along with the sections of memoir.

Cookie's Mom: This book is classified as creative non-fiction. While the non-fiction pieces clearly are fact-based, in the memoir or diary-like parts of this book, you relate experiences of being almost out of your mind. Did you write these pieces in retrospect?

Vanessa: I used to write journal entries in an effort to stave off seizures. I became aware at some point that a lot more was happening during the seizure episodes than I could remember afterwards. I thought if I wrote down what was happening when a seizure was kicking in that I could somehow stay conscious and not succumb to it. I was hoping that I might avoid the seizure altogether or mitigate it somehow or maybe write something in those blackout periods that would be illuminating. Eventually, I went over those entries in an effort to piece everything together. Some were left out of the book because they were just too intense and those that made it in have a weird, nonsensical, almost dreamlike quality to them.

Cookie's Mom: As I said, I marvel at the craft of weaving together these journal entries and the facts about Lyme Disease. How difficult was it to get this right?

Vanessa: I basically wrote two short books: a non-fiction book and a memoir based on my journal entries. Then I wrote a third book that wove the two shorter books together. My editor and I tried different combinations and shuffled things around a few times so that everything came together seamlessly and gave the book a sense of logical progression. That right there is why writers need editors.  It takes the objectivity of someone not involved in either the experience or the creation of the book to make sure the book holds together as a cohesive unit.

Cookie's Mom: You've had a rough time. Anyone who has had Lyme Disease knows that it's like going to battle with ear muffs and a blindfold on, all while suffering intense, debilitating, unrelenting pain at least some of the time. In my experience, for most, if not all, of the journey, people either ignore you or condescend to you. Have things improved for you?

Vanessa: Yes, definitely, but mostly because I got better.  No one wants to deal with someone who is always ill.  That’s as true for doctors as it is for neighbors and friends and family. I have to be honest, to this day doctors go out of their way not to talk to me about Lyme disease.  They pretend I didn’t just say the name of the disease or look around as if they’re planning to bolt at the first opportunity. Lyme is that really big elephant in the room that pretty much every doctor I run into hopes they won’t have to acknowledge. I don’t always let them off the hook.  Everyone else just hopes that when they ask me how I’m doing I’ll give them a positive response and these days I almost always do.  Their relief at not having to make whatever tacky excuse they were going to make in order to ditch me can be hilarious.

Cookie's Mom: I can relate to your desire to write a book that captures the feeling of Lyme Disease and that is helpful to others. I congratulate you on accomplishing something that so many of those with Lyme Disease can only dream about. You've done such a thorough and impressive job of it, that I feel you have fulfilled all of these dreams on the dreamers' behalves. How does it feel to know that you have touched the lives of so many?

Vanessa: I knew when I wrote the book that it would likely strike a chord with Lyme sufferers who would recognize their own struggles in what I went through.  One of the tragic things about Lyme is that it leaves its sufferers feeling helpless and hopeless and worse: voiceless.  You really do feel as though you could stand in the middle of a crowded room and scream your lungs out but no one would hear you.  One of the benefits of being a writer is that I’m never voiceless.  Artless, occasionally, but never voiceless.

Cookie's Mom: There's a bit of a media frenzy lately around Lyme Disease. This is a good thing in terms of awareness. Some of the information is misguided at best, but the truth, if we can call it that, of what Lyme Disease looks like and what the current political and medical environments of Lyme Disease look like, is slowly coming to light. What do you think is the outlook for patients with Lyme Disease? What can we hope to see in the coming months and years?

Vanessa:  That’s a good question.  Things are definitely looking bright these days, but things have looked bright before and the reality is that in the seven years since I was diagnosed with Lyme disease the plight of Lyme patients hasn’t changed all that much.  It is still incredibly difficult to get a diagnosis.  Patients are still being forced out of the healthcare system to seek treatment from medical doctors in the US or alternative practitioners in Canada.  Doctors still know surprisingly little about the illness and what they think they know is often not terribly accurate, which leaves patients in the lurch. And health authorities are being dragged kicking and screaming into a new reality that they are unprepared to deal with: global warming. It is here to stay and it is bringing with it many diseases not previously seen in this country, including Lyme disease.  A proactive approach would seem to be in the best interest of Canadians, but instead health authorities seem content to take a wait-and-see approach, as if by some miracle global warming is going to reverse and it won’t be necessary for doctors to update their knowledge to address it.  That doesn’t seem like the best plan, so hopefully all of the noise surrounding Lyme these days will succeed in letting health authorities know that Canadians expect better of them.

Cookie's Mom:  You've recently spent quite a bit of time and energy touring Canada speaking to audiences in cities and towns about Lyme Disease. How is the tour going? What are people who come to see you looking for? What have you learned from these engagements?

Vanessa: I’ve been to several provinces talking to audiences of all sizes about the realities of Lyme disease in Canada.  Much of what I talk about centers on the latest research and how that research, in many cases, varies from what was traditionally thought to be the truth of Lyme disease in Canada.  Most people who come to my talks have a feeling that what they have been hearing about Lyme disease in the media or from public health officials or doctors may not be quite right, but I think they still leave very surprised by what they hear.  The interesting thing is, everything I talk about comes from publically available, peer-reviewed studies that anyone can get their hands on if they know where to look and yet somehow that information isn’t making its way into doctors offices or newsrooms or, more importantly, into the hands of Canadians who are trying to keep themselves and their families Lyme-free.

Cookie's Mom: Let’s hope that is finally starting to change. What's next for you, Vanessa?

Vanessa:  Now that I’ve got my life back again, I plan on living it!  I’ve been busy outlining my next book, which will also be creative non-fiction, but, happily, will have nothing to do with Lyme disease.  I’ve also got several non-writing projects in the works and now that I’ve finished touring for the year, I’m hoping for a little down time.

Cookie's Mom: Typically at this point in the interview I would ask the desert island question, which goes something like this: Imagine that you are stranded on a desert island and have been able to bring just three things with you. What are these three things?

In your case, having essentially already experienced the feeling of being stranded, alone in a fight against Lyme Disease and a medical system that is ill equipped to manage it, I think I'll go another way. Imagine that you are given an unlimited amount of time to do whatever it is you want to do. While doing it, you experience perfect health, peace and joy. Where are you and what are you doing?

Vanessa:  I used to imagine my ideal life would involve travelling around the world, experiencing different cultures, learning new languages, and reading every book I could get my hands on.  Since Lyme released me from its peculiar torture, my fantasies involve gardening and hiking and meditating on a sunny beach.  Not very exciting, I know, but exciting doesn’t seem to be what I’m after these days. I used to think I had to get to Paris at least once before I died. Now I can’t remember why that seemed so important.  What I missed most during the Lyme years was just the feeling of being at peace in the world.

Cookie's Mom: Vanessa, it was a pleasure 'speaking' with you. Thank-you for being my guest, and thank-you for your tireless work in writing this critical piece of Lyme Disease literature. Thank-you for continuing to inform Canadians about the disease and what they can do to protect and care for themselves. We are all deeply in your debt.


An Excerpt From the Book


My husband suggests that maybe swinging by the hospital might be a good idea.
Swinging by the hospital is never a good idea.
I’ve been to that emergency room enough times in the preceding months to know that my problems will be greeted with malignant disinterest and I’ll be told:
a) That my illness, though manifesting in my body, is really all in my head. 
b) That I’m overreacting to a simple case of the flu. 
c) That emergency services are meant for patients more worthy than me. 
I can’t stand the thought of having yet another doctor push me out the door having done no more than the minimum the law requires. Or worse. To be faced with a doctor who has already failed me.
I decide to sleep the whole thing off, but my husband is growing increasingly concerned so he goes off to phone a nurse. He describes the stiff eyes and the even stiffer neck, the high fevers, the skull-cracking headache, the aching joints, and the profound fatigue. 
The nurse tells him to call an ambulance. The situation is urgent.
I cry. I plead. I can’t go back to that emergency room again and I’m determined that my wishes aren’t going to be overridden by some disembodied voice that clearly has no experience trying to get healthcare from the godforsaken horror show that passes for the local hospital. 
I’m adamant about this. I won’t change my mind. Don’t even try me.
I don’t remember much after that, only fragmentary images with no context to anchor them. 
A magnetic attraction to the hospital floor.
The pain of a needle breeching a vein.
Bright lights being shone in my eyes over and over and over again.
I remember all of this from above as I look down at the body on the bed, not quite connecting it to me, and I recall thinking that it no longer matters whether I live or die. Nothing matters anymore. 
But then maybe that’s just the sort of thing people think when the morphine finally kicks in.
A Week Later
They decide to keep me. Lucky me.
I’m wheeled from the emergency room in the middle of the night and placed in a room alongside a morbidly obese patient who sleeps twenty hours a day and snores loud enough to trigger earthquakes two continents away. 
Someone arrives to wake me up at regular intervals.
This really isn’t necessary. The non-stop snoring ensures I won’t be sleeping anytime soon. 
Snort. Snort. Bluster. Snort. It’s like lying next to a chainsaw with a faulty motor.
It occurs to me that this is what hospital administrators do to patients who can’t take a hint. If a patient keeps coming back to the hospital after doctors have repeatedly dismissed her then they have no choice but to torture her in an effort to make sure that she will never, ever feel the need to come back again.
I feel like a character in a Stephen King novel.
The setting contributes to this feeling. The walls are painted a color that can best be described as drab and the window blindswhich are inexplicably embedded between two panes of glassare broken, preventing them from being moved from their present position, which is partially raised yet slightly askew. The bed is a ramshackle disaster of technology that I can easily imagine being a cast-off from another, better hospital when it updated its furnishings forty years ago. And just to complete the horror-story effect, the hospital’s power goes out several times one day, forcing the back-up generators to kick in and noisily expel stale air from the vents.
Again and again and again. 
I half-expect a machete-wielding lunatic to burst into my room. I’m only vaguely surprised when this doesn’t happen. 
Or maybe it does; it’s not like I would remember. 
I’m in the hospital for more than a week, but my memory of that time is fragmentary, disjointed, as though someone loaded a random set of slides into a projector and is flashing them on a screen inside my brain without providing any narrative glue.

Slide 1.
Someone is speaking to mea nurse, I thinkbut I can’t understand what she’s saying. 
“Source black round fluid next.”
“Are you talking to me?”
“Koi freak leaven irritate deer.”
“I’m sorry, I don’t understand what you’re saying.”
“Winter serif all?”
“Still not getting it.”
“Lewis late episode are ego ant alter window?”
“Look, whatever it is, can you just pretend I gave you the answer you’re looking for?”
“Rifle did jelly art kudo?”
“Yes.”
“Jungle dime?”
“All right then, no.”
“Timeless dark swallow sit table juror dad.”
“Screw it. You’ve got a brain. Whatever it is, just figure it out for yourself.”
“Swat whiskey fur.”
“Christ.”

Slide 2.
A doctor is standing at the foot of my bed, flipping through pages in a chart that’s resting on the rolling table where the trays of untouched food usually reside. He’s telling me that I could be in the early stages of multiple sclerosis.
Possibly lupus.
Maybe rheumatoid arthritis. 
Somehow I get the impression that the choice is mine and I try to consider the pros and cons of each disease, but quickly discover that I don’t know enough about any of them to feel confident that I’ll choose the one that will be the least destructive in the long run. 
The conversation veers in another direction. 
I fail to veer with it.


What Other People are Saying

“Rain on a Distant Roof is an excellent read. I recommend it. Our politicians at all levels and physicians of every ilk should read it as well.” — Jim Wilson, President, Canadian Lyme Disease Foundation

“Rain on a Distant Roof offers uncompromising access to a very personal experience with Lyme disease, an unpredictable, debilitating and potentially fatal illness that is becoming more prevalent across Canada. Vanessa Farnsworth combines a journalist’s tenacity with a writer’s sensibility, presenting her struggle with the disease but also with a health care system that too often leaves sufferers misdiagnosed and undersupported. Farnsworth is an excellent advocate for the Lyme community, both on the page and in person: she is articulate, passionate, invested, well-informed, and vital. Her book is a clarion call to pay attention to a serious health crisis in the making.”— Charlene Diehl, Director, Winnipeg International Writers Festival

"Rain on a Distant Roof offers thought-provoking insight into the daily struggles and obstacles faced by chronic Lyme disease patients. Vanessa Farnsworth's self-described "tick-shattered life" is an all too common but seldom told story of desperately ill Canadians caught in a healthcare nightmare."— Susan McInnis, President, Lyme Disease Association of Alberta

About the Author




Vanessa Farnsworth has published more than 100 columns and articles (including several on Lyme disease) in national and regional publications, including Canadian Gardening, Canadian Living, Cottage, Garden Making, The Creston Valley Advance, The Grower, Harrowsmith Country Life, Kootenay Life East, Route 3, and Vitality Magazine

She holds a degree in English from Toronto's York University, a diploma in print journalism from Oakville's Sheridan College, and she studied creative writing at The Humber School for Writers. Her literary fiction has been published in journals across Canada and in the United States, including The Dalhousie Review, Dandelion, Filling Station, The New QuarterlyPrecipice, Qwerty, and Reed Magazine.

Where to find Vanessa:
Websites:


Enter below for your chance to WIN a paperback copy of Vanessa's powerful memoir, Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada



a Rafflecopter giveaway
To join our Twitter Q&A, simply follow and use the hashtag #LymeInCanada on November 12, starting at 5:00pm PDT (6:00pm MDT and 8:00pm EDT). To follow hashtags more easily, use a Twitter chat application like Tweetchat. Note: you must use the hashtag #LymeInCanada in each of your tweets in order for Vanessa and I to see them. Tweetchat automatically adds the hashtag for you.

PRINT VERSION AVAILABLE FROM:
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eBOOK AVAILABLE FROM:
    


Published by Signature Editions.
ISBN: 978-1-927426-23-4


eBook ISBN: 978-1-927426-24-1

4 comments:

m said...

Nice book

glen rich said...

Great Book and easy to read!

Josy Herrera said...

The cover of the book is very beautiful and intriguing!

Cookie’s Mom said...

Thank-you to everyone who entered to win a copy of Vanessa's book. Josy is our winner! Congratulations Josy!

Reminder: There is a Q&A with Vanessa tonight at 5:00 PM PST. We'll be giving away a second copy of Vanessa's book. Follow and use hashtag #LymeInCanada to participate.

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