Exquisite Warriors

Exquisite Warriors by Laura Russell

Click here to see a flip book of Exquisite Warriors in action.

Click here to see a video of a my recent talk about this project. (Hint, skip to minute 11:15 to skip the history of 23 Sandy and go directly to the Warriors part of the talk.)

Parkinson’s Disease (PD), typically thought of as a disease of old men, is the fastest growing neurological disease in the world. There is no cure. It affects the nerve cells in the brain that produce dopamine. Symptoms include muscle rigidity, tremor, changes in speech, cognitive issues, gait and balance problems — plus a long list of painful, debilitating symptoms. It is a long, slow descent into profound disability. It is a disease that I am all too familiar with after watching my mother suffer for 20 years before my own diagnosis in 2019.

Exquisite Warriors celebrates 26 women battling this unrelenting disease with grace and dignity. This limited-edition artist book is an “exquisite corpse” structure — an interactive children’s book that was once a Surrealist game where the pages are split into body parts. In turning the pages the viewer changes the visual sequence of the body, creating a variety of permutations of heads, torsos and legs. As if we could swap out our own body parts when they fail us.

Three different narratives flow on the text panels opposite the photos: FATE, FACT, FEAR. On the top panels, FATE: an abecedarian, or ABC book, of PD symptoms. Weaving through the middle panels, FACT, a narrative about my own battle from dark diagnosis to newfound hope, an action plan that brings optimism, and a community of friends and supporters. (Scroll down this page to read the entire text from the FACT panels.) And, FEAR, the bottom panels: a quotation from each warrior about their biggest fears as they face this disease.

In the end, this book is an empowering exploration of exquisite women. Facing the battle of our lives with strength, grace and dignity. 26 women fighting fate, facing facts, conquering fear.

All gross proceeds from the sale of this deluxe limited-edition artist book will be donated to organizations supporting women with Parkinson’s Disease. Thank you.

~Laura Russell

Click here to see a flip book of Exquisite Warriors in action.

Click here to see a video of a my recent talk about this project.
(Hint, skip to minute 11:15 to skip the history of 23 Sandy and go directly to the Warriors part of the talk.)


Click on images for larger views.

Exquisite Warriors
Deluxe Limited Edition Artist Book
$500

Exquisite corpse structure. Spiral binding with case-style cover. Digital Prints. Domtar Lynx paper. 60 pages. 6.5 x 9.875 x 1 inches. Presented in a clamshell box. Signed and numbered. 2021. Limited Edition Artist Book. Deluxe Edition of 25.

Click here to purchase online at 23 Sandy.

Or, contact Laura.


Exquisite Warriors – The FACT Panels Text,
aka, Laura’s Story

In this book, three different narratives flow on the left-hand text panels opposite the participant photos: FATE, FACT, FEAR. On the top panels, FATE: an abecedarian, or ABC book, of PD symptoms. Weaving through the middle panels, FACT, a narrative about my own battle from dark diagnosis to newfound hope, an action plan that brings optimism, and a community of friends and supporters. And, FEAR, the bottom panels: a quotation from each warrior about their biggest fears as they face this disease.

Following is the full text from the FACT panels:


You have Parkinson’s Disease.

Four little words delivered by
a neurologist following an exam lasting
less than five minutes.

Parkinson’s Disease, typically thought of as a
disease of old men, is a degenerative brain disorder.
There is no cure. It affects the nerve cells in the brain
that produce dopamine. A movement disorder, it is a
long, slow descent into profound disability.

Devastating news delivered in rushed, emotionless,
brusque manner—by a woman, no less, half my age.
I’ll never forget her face staring at a computer screen
while speaking those four little words, ruining my life.
To this day, I hate that doctor. Does everyone hate
the doctor who delivered the news?

I knew those four little words were coming.
I had known for the previous three years.
A tremor in my left hand, but only when I was
walking or climbing stairs. Oddly rhythmic,
unpredictable, inconsistent.
I could make it stop.

Then, a strange pull in my left fingers, curling into my
hand. That could be explained by a recent elbow injury,
too much bicycling, or too much computer work.

Was this the result of the stress of my always-
ambitious work life? For 10 years I proudly owned
an art gallery in Portland. I was determined to succeed.
I thrived on Stress. Capital S. I worked what felt like
100 hours a week for those 10 years.

I knew it was coming.
My mother. Uncle Mike. What about Uncle Jack?
Aunt Dale Ann says no. But he walked, shuffled,
fell, just like mom, his sister.
I was 55 years old.
Average diagnosis age is 60.
Once again, I am just average.

They say that only 10-20% of Parkinson’s Disease
cases are genetic. But, it seems like everyone I
meet has a mother or father who also had this
dreadful disease. My mother suffered with it
for nearly 20 years before I was diagnosed.
The good news is, I know what’s coming.
The bad news is, I know what’s coming.

Mimi, my best friend of 30+ years, noticed
my left arm doesn’t swing anymore.
We were in Chicago. Girls weekend with Spam.
We hadn’t seen each other in a couple of years.
Friends who know you the best always tell the truth.
I tell Spam that I am jealous of her breast cancer.
At least she has a battle she can win.

A week after my diagnosis I attend a lecture at
the Portland Art Museum by a young woman with
Multiple Sclerosis. She showed us her photography
project studying hands as a way to come to grips
with her own fears. As she talked, I sat in the back of the
darkened room and cried throughout the entire lecture.
I left early so none of my photographer
friends would see me sobbing.

Confirmation delivered by Matt Lauer during a
Today show segment titled something like,
“Five Symptoms of Major Diseases You Should
Pay Attention To.” Symptom #1: onset of small,
cramped handwriting is a sign of Parkinson’s.
Damn. Suspicions confirmed.
I am alone in a condo in Palm Springs.
I’ll never forget that room.

A devastating diagnosis like Parkinson’s Disease
brings waves of grief, terror, fear and countless other
feelings. I cried every day for exactly a year. Rarely in
front of anyone. My mind just always went to this
dark place any time I was alone. How many times
did I pull the car over to the side of the road?

I am left-handed. PD took that hand first.
As an artist, my hands are vital to my identity.
Before I started the drugs I could no longer floss
my teeth or hold a scalpel for cutting paper. Who will
I be when I can no longer make books? Hopefully,
I’ll get the apathy symptom at the same time so that
I no longer care about all the book ideas that
are always swirling in my head.

Environmental toxins are known triggers of PD.
I grew up in mid-Michigan, in a nice subdivision
surrounded by a lush green golf course
and miles and miles of fertile farmland.
Corn, soybeans, sugar beets, pesticides, herbicides.

When I was 25 I bought my first house in Denver.
It was 1989. I was single and it was a milestone
moment for me. I sprayed the entire yard with
Round Up (glyphosate, a proven neurotoxin) to clean
up a long-neglected yard. Kill it all. Fresh start,
green sod, flowerbeds, my first vegetable garden.

Menopause: hot flashes, mood swings,
cognitive difficulties, sleep disturbances,
heart palpitations, depression.
Parkinson’s: hot flashes, mood swings,
cognitive difficulties, sleep disturbances,
heart palpitations, depression.

Women take much longer to get an accurate diagnosis.
We are frequently diagnosed with PD during our
peri-menopause and menopause years. PD symptoms
are often confused with menopause symptoms,
leading to delayed diagnosis and treatment.

It has been over 200 years since Parkinson’s Disease
was named. There is no cure. No miracle drug.
So far the only known way to slow the
progression is with eXercise. Capital X.
Serious, intense, focused exercise.
My plan is 2-4 hours per day, 7 days a week.

Luckily, I found a brilliant doctor and reasons
for optimism. She just happens to be a Michigander,
so of course I trust her. In her work, I find honest
science-based facts and a straightforward path
toward a slowed progression. Hope.
I’ll do anything she says to make it work.
I desperately want to be one of her “Positive Deviants.”

At the first women’s support group
I attended, the leader said to me,
“You don’t look like you have Parkinson’s.”
Taking this step was scary because it is hard to
be around older people with more advanced
symptoms. I felt out of place and lost.
It took another year before I tried another group.

Steve, my husband and biggest supporter.
The love of my life, my rock.
Calm, steadfast, always. Says all the right things.
Listens so well. I try not to tell him my
symptoms too often. Don’t want to whine
or complain. Or scare him. He senses when
I need denial or soothing or research.
We had so many plans.

Besides family and close friends, I did not tell a soul
for the first two years. Still, today, not really a secret.
I just don’t feel a need to tell everyone I know.
It’s only now I’m finally able to tell a few more friends.
It’s like peeling back the layers of my social sphere.

Somewhere along the way I found community.
The pandemic brought virtual support groups,
somehow easier to dip toes. Support takes on new
meaning for my fiercely independent soul.
Especially inspiring: the women.
Fighters, warriors, all.
So much advocacy, outreach, support,
strength, resilience, hope, unity, action, nurturing.

This book is like a coming out of sorts.
This disease has been an unseen illness for me so far.
It won’t be someday.
I’ll hide then.
For now I must choose the path
of light and hope and action.

This book started off with a working title of
FATE, FACT, FEAR. It was a dark book,
exploring my deepest fears and the
grim facts of this horrible disease.

As the concept and design progressed and as
I added the voices of other women, the book
became more about hope than fear.
It is now an empowering exploration of
exquisite women facing the battle of our lives
with strength, grace and dignity.

26 women.
Fighting fate, facing facts, conquering fear.

 


Copyright © 2021 by Laura Russell, Simply Books, Ltd.,
Portland | Tucson, United States. All rights reserved.
No part of this book may be reproduced in any form without
written permission of the artist.

Comments (0)

Post A Comment