The Life of a Walking Mermaid: A Story of Resilience

By Vicki Thompson

The Life of a Walking Mermaid looks into the life of an angel, disguised in a 90-pound body with a smile and laugh that lit up the world. Young Vicki Thompson could have been the next Gandhi or Abraham serving as a magnet for love, kindness, and goodness. She wrote from the heart and, without knowing it, transformed peoples lives. Her memoir will open your heart and soul whether you suffer from a physical or mental illness or have perfect health.

Through Vickis inspirational blogs, she gives readers a glimpse into what it felt like being forced to live with Cystic Fibrosis and the lessons she learned through her experience. Most importantly, though, Vickis blogs attest to not allowing a disease define who you are. Vicki never did and encouraged others not to do so, either. Right up to her final days, she spoke of what she was going to do after she received her new lungs, thrilled to no longer be a prisoner of Cystic Fibrosis.

• Language: English
• Publisher: Archway Publishing
• Release date: Aug 6, 2018
• ISBN: 9781480864870

Vicki Thompson

Vicki Thompson never allowed fear to stop her. An avid snowboarder, she attended Sierra Nevada College in Lake Tahoe. When not traveling, she created the non-profit Boundless Art and wrote for the Cystic Fibrosis Lifestyle Foundation. Her final quest was founding Salt and Soul, a salt therapy and yoga center. She was always busy planning her next adventure.

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Copyright © 2018 Vicki Thompson.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

Archway Publishing

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

ISBN: 978-1-4808-6485-6 (sc)

ISBN: 978-1-4808-6486-3 (hc)

ISBN: 978-1-4808-6487-0 (e)

Library of Congress Control Number: 2018953079

Archway Publishing rev. date: 8/2/2018

Contents

Introduction

Part 1

Vicki Thompson

Meet the Author

Coughing in (Un)Comfortable Quiet

6/23/2014

Depression and Cystic Fibrosis

08/20/2014

Patient vs. Visitor

08/20/2014

What Does Cystic Fibrosis Feel Like?

09/24/2014

Mermaids, Novelty, and the Origin of CF

11/06/14

Authentic Play

12/19/14

Disease Gives Perspective

01/28/15

Chronic Love

03/05/15

Video Blog: A Day in the Life of CF: Episode 1

04/20/15

Video Blog 2: Denver Days

05/25/15

I Am

09/07/15

Cough Your Heart Out and Other Words of Advice from an Almost Thirty-Year-Old with CF

11/16/15

Notes on a Beat-Up Monkey and Miracles

Inspirational Bites

02/22/16

Time Traveling with Cystic Fibrosis

05/13/16

Every Breath Is A Gift

08/14/16

Stomachache Sentiments

11/21/16

Fifty Ways to Leave Your Disease

02/13/17

Lesson Numbers 374, 767, 5, and 127

04/17/17

Altered Perceptions

Part 2

With Courage and Hope

Part 3

The Unexpected

Vicki Thompson

Epilogue

Introduction

On September 6, 2017, at 8:25 p.m., my daughter, Vicki Thompson, lost her life to Cystic Fibrosis (CF). She was thirty-one, almost thirty-two.

Born on a full moon November 27, 1985, she was a perfect baby! Ten fingers. Ten toes. So beautiful and precious! But two and a half years later, the worst nightmare a parent could ever experience occurred. Cystic Fibrosis. She has Cystic Fibrosis! The words echoed; the world stopped. In 1988, the average life expectancy of a person with CF was twenty-four years. Average. Okay. I was not going to lose this beautiful little person. Let the fight begin! And so it did.

Vicki was a tiny person—only four feet eleven—living an anything-but-small life! She was big. Everything she did was done in a big way, right down to the vehicle she drove (Sierra, GMC), her dog (a giant mixed breed), and the paintings she created on four-by-five-foot canvases she could barely carry.

Currently, the average life expectancy for a person with CF is about thirty-seven and a half years. Average. Vicki exceeded the first average. A true milestone considering that when she was seven I overheard doctors tell medical students they never expected her to live past five!

Her best friend, Goldie, would say, Vicki is running a marathon every day of her life. Vicki was brave, a fighter with admirable strength. She never lost hope. Every hospitalization—even when they became bimonthly—ended with Vicki saying, Mom, where are we going next? and When I get out of here, I want to … What spirit and unbelievable optimisim!

I knew Vicki was getting worse. I knew she had developed an immunity to almost all the antibiotics being used to treat her. But not in my wildest dreams did I think we would lose her. Not so soon. We were heading for that double lung transplant. It was going to be okay. Wasn’t it? Yet in desperate need for a miracle, I was somehow blindsided.

It was a full moon that night. Maybe the miracle was that her life was taken from us so she could finally stop suffering and breathe.

Part 1

Vicki Thompson

Meet the Author

06/23/2014

Vicki Thompson

Age: 28

Location: Long Island, New York

Occupation: Art therapist / yoga instructor / lifetime student

Activities: Yoga, hiking, surfing, snowboarding, swimming in the ocean, dancing, Hula-Hooping, walking forever, and biking

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I am excited to share some stories and insights into the human comedy of living with CF. My posts fall between four categories: earth, wind, fire, and water. Earth posts tell stories involving community. Wind posts are about topics invisible to the naked eye. Fire posts are passion posts, and water posts involve water and its healing entities. Yoga, snowboarding, and surfing have played a major role in my increased body awareness, health, and happiness.

A little bit about me. Over the past ten years, I’ve lived in five states, exploring what each has to offer, meeting the people, monitoring my health, and finding a new affinity for a sport that aligned with the environment. In Hawaii, it was surfing. Colorado, it was yoga. California, rock climbing and snowboarding. Challenging the body challenges the mind. And as we all know, a stale mind leads to the deterioration of the body.

The last ten years have been filled with many ups and downs. There was a period of about two to three years when I was hospitalized every other month. It was scary but also made me appreciate every single day and every single breath. I had to come to a harsh realization that my life needed routine to be healthy and long. With my being a sort of gypsy, this was extremely hard for me to accept, but I think I’m coming closer and closer every day to finding the balance of healthy, traveling happiness.

Whenever I am hospitalized, my body and mind are placed two steps back at least. So having to repeatedly start over with gaining muscle mass, building mental confidence, and, the hardest part yet, listening to my body’s limitations—a.k.a. patience—are the most challenging parts of CF. However, every time I overcome a hospitalization, I am stronger mentally and physically than I was before. I’ve learned what I need and what I want in medical care, and this life lesson from all my experiences has put me where I am today. I look forward to sharing stories of these experiences and hope to build a more-pervasive CF community and support through the readers. And remember—resilience creates!

Coughing in (Un)Comfortable Quiet

6/23/2014

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Picture this. You’re in a sixty-minute Restorative Yoga class in an enclosed room surrounded by many fellow yogis. Your feet are positioned above your head with the aid of a bolster over some blocks. Your head is slightly lifted by a soft trifolded blanket. Arms are spread wide, palms facing the ceiling. It’s arguably one of the most comfortable positions of your stressfully busy day.

(This image is a re-creation of an aforementioned position during a hospital stay.)

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You are encouraged to let the breath flow through your body like a river. In through your nose—picturing it flowing through your body—past your throat, and down and out through your toes. That’s all fine and good, unless you have CF. The breath gets stuck at the Great Wall of China, a.k.a. your mucus-riddled lungs. There are no convenient Rip Van Winkle bridges in sight or Waitomo caves to escape the inevitable. The only way through this proverbial wall is a cough. One cough leads to two, two to four, and four to many, many more. Yup, this is what happened to me the other day in my Restorative Yoga class filled with twenty people all quietly breathing while I was successfully inducing a coughing fit.

I like to think no one notices or cares. I like to think they can meditate through my coughing and are perfectly content and restoring their bodies while I keep coughing. However, the unfortunate truth is that I didn’t get up and remove myself from the room, because I thought my cough would eventually stop. Well, it didn’t stop. My coughing relentlessly continued until the class flipped over to lie on our stomachs in a relaxing child’s pose.

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Of the sixty-minute class of restorative torture, the last ten were blissful. My breath flowed freely, and I forgot about telling myself not to cough. Some participants of that class might claim I ruined their relaxation class. I saw it in some of the looks after class, a quick glance saying, Oooooh, you’re the cougher. I felt the negative glace and emotion of one particular person before I saw it in her eyes. It was the woman next to me, who kept breathing hard whenever