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

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

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About the book

Rain on a Distant Roof takes readers inside the frightening but fascinating world of Lyme disease in Canada. This is the story of one woman's struggle to understand the disease that’s destroying her body and mind. Armed with a confusing diagnosis, a baffling array of symptoms, and a body that’s filled with diabolical bacteria, she sets out to unravel the mysteries of her malady. Along the way, she discovers challenges in properly diagnosing and treating the illness, deficits in medical testing, conflicts among medical guidelines, and a public health response that is, at best, problematic. She also discovers the bizarrely intelligent bacteria at the bottom of it all, an organism so complex and perplexing that more than 30 years after it was first discovered, researchers are still having trouble nailing it down. 

But time is running out. By 2020, it’s estimated that more than 80 percent of the population of Canada will be living in regions that are endemic for Lyme disease and the numbers of people infected with the illness are expected to soar. What remains unknown about the illness continues to trump what is known, placing the health of Canadians increasingly at risk. Welcome to Lyme disease in Canada. Don't go into the woods today.

About the author

Farnsworth, Vanessa

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, The New Quarterly, PRECIPICe, Qwerty, and Reed Magazine.

See Vanessa Farnsworth’s Lyme disease web site at:  http://www.lymediseasebook.com

Excerpt

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 blinds — which are inexplicably embedded between two panes of glass — are 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 me — a nurse, I think — but 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.

Reviews

I took a five-year vacation from my life." This may sound like a dream, but for Vanessa Farnsworth, it was a nightmare. Before "the vacation," Farnsworth was outdoorsy and... >>

— Ryan Stuart Explore

Vanessa Farnsworth feels lucky that she has lived to tell her story about five years of suffering from a bacterial illness that she apparently contracted from a tick bite... >>

— Lorne Eckersley Creston Valley Advance

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 thought-provoking insight into the daily struggles and obstacles faced by Chronic Lyme disease patients.  Vanessa Farnsworth's self-described,... >>

— Susan McInnis, President Lyme Disease Association of Alberta

You'll find lots of material on Lyme disease from the internet (forums, devoted websites, anecdotes, academic papers etc). Much of what's out there is written from personal... >>

— Andrew McGuinness, novelist & lecturer

Rain on a Distant Roof offers uncompromising access to a very personal experience with Lyme disease. Farnsworth combines a journalist’s tenacity with a writer’s... >>

— Charlene Diehl, Director Winnipeg International Writers Festival

A mixture of biography and science, Vanessa Farnsworth's Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada not only introduces the reader to the... >>

BC Bookworld


Audio

Tuesday, April 1

Nelson, BC

CJRL Radio

Vanessa Farnsworth interviewed by Andrew Rudenhauser on Kootenay Co-op Radio.
(MP3 file, 14 minutes)

Download the MP3 clip
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