Your Wildest Dreams: A Parkinson's Love Story

By Michelle Terrill Heath

Michelle Terrill Heath has lived an unconventional life, partly by choice and partly by circumstance. As a teenager, she met the love of her life, Andy, and they have been married for forty-seven years. They are a happy, healthy, and adventurous couple who have discovered how to continue this lifestyle, even through the onslaught of Andy’s Parkinson’s disease.

In Your Wildest Dreams, Heath offers a unique and intimate view into their unconventional choices and ways of living. Through examining their own life experiences, which have included both the exotic and the mundane, strategies emerge for living well in all circumstances. For example, they traveled to India to work at an orphanage where they built a 125-foot suspension bridge. Another time in their life, they sailed a thirty-seven-foot trimaran sailboat across the Gulf of Mexico through a major storm.

When faced with Parkinson’s, lessons from these experiences buoyed them. When their art business began to fail or when the fidelity of their marriage was tested, more approaches emerged. Lessons are learned that translate directly when faced with the reality of living with an incurable disease.

• Language: English
• Publisher: Balboa Press
• Release date: Sep 12, 2023
• ISBN: 9798765240199

Michelle Terrill Heath

Michelle Terrill Heath and her husband, Andy, have earned their living as traveling artists, creating welded bronze jewelry and selling their art at juried shows. They raised two children in the tiny home they crafted in a mountain forest near Taos, New Mexico, living without running water, plumbing, or electricity for more than twenty-four years. Heath continues to be Andy’s caregiver, embracing the best life they can while living with Parkinson’s disease for eighteen years.

Book preview

YOUR WILDEST DREAMS

A Parkinson’s Love Story

Michelle Terrill Heath

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Copyright © 2022 Michelle Terrill Heath.

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.

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.

Balboa Press

A Division of Hay House

1663 Liberty Drive

Bloomington, IN 47403

www.balboapress.com

844-682-1282

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.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

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.

ISBN: 979-8-7652-4020-5 (sc)

ISBN: 979-8-7652-4021-2 (hc)

ISBN: 979-8-7652-4019-9 (e)

Library of Congress Control Number: 2023911412

Balboa Press rev. date: 09/06/2023

CONTENTS

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Preface

Chapter 12015

Chapter 21974 –1975

Chapter 31975 – 1978

Chapter 42005 – 2007

Chapter 51980 – 1982

Chapter 62007 – 2008

Chapter 71982 – 1986

Chapter 82010

Chapter 91986

Chapter 101988 – 1991

Chapter 112010

Chapter 122012

Chapter 131990 – 1999

Chapter 142000 – 2006

Chapter 152012 – 2013

Chapter 162014

Chapter 172015 – Present

Book Club Questions

Acknowledgements

About the Author

For Andy, my loving husband, and Brendan, Alana,

and Sky, our beloved children. Without you my life

would not have been as wonderful, and this book would

not exist. Thank you for proving our claim, time after

time: When we are together, everything is fun.

PREFACE

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Your Wildest Dreams

This is a love story.

Belonging equally to me, my husband, Andy, and our children, this story is about how we as a family faced Andy’s experience of living with Parkinson’s Disease.

The very particular way we chose to live our lives defined how we approached our journey with Parkinson’s. Our lifestyle and Andy’s illness are woven together in this telling, just as they are in real life.

This is an adventure story.

Andy, my hero (who will soon become yours, too), begins as a stoned ski bum living in Aspen, freshly returned from the Vietnam war. He falls in love with me, an inexperienced seventeen-year-old girl, mature beyond my years.

Our story takes you to Hawaii, India, French Polynesia, Guatemala, and all over the US. Along the way, you will be introduced to an incomparable cast of characters, from dedicated skiers to islanders, from master ballet teachers to genius artists. You will meet our children, two born and one found. They were raised unconventionally; each took their unique strengths and ran with them.

This is a survival story.

You do so much with so little, a friend once told us.

Her observation became a way of life we embraced. Your Wildest Dreams explores Parkinson’s, from diagnosis to our present-day success living with this capricious disease. I write openly about risks we took and failures we lived through. Parkinson’s became another part of our big, messy, wild, loving life.

When things get hard, I don’t pull punches. I’ve lived through heart wrenching struggles that seemed insurmountable. Andy having Parkinson’s is certainly one of them, but there are others before and after Parkinson’s came to be, as well.

I hope this story opens your mind to new possibilities. I’m sharing our history with you not as any kind of life template or map, but as a source of inspiration, guidance, encouragement, and maybe even comfort. Whatever you are facing, with or without Parkinson’s, there is a way through. There is always something else around the corner.

A disaster can always be turned into an adventure.

CHAPTER 1

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2015

"It is good to have an end to journey toward, but

it is the journey that matters, in the end."

– Ernest Hemingway

Stars glimmered in the dark of the early morning when Andy’s voice whispered in my ear. Let’s get up and row.

His excitement was palpable. Rolling off our camping mattress, I felt my knees grind into some stones under the tent floor. I moved gingerly as I dressed in shorts, a T-shirt, and a sweatshirt to ward off the California morning chill. We walked with our carbon fiber oars over our shoulders and life vests on down the steep dirt hill to the beach, only fifty yards away. It was not yet fully light out. The sand felt cold on my feet and the ocean waves lapped gently at my ankles, waking me up. High tide made it easier to push our eighteen-foot blue rowing boat from the sand into the water.

I secured the oars and climbed into my seat, holding the boat steady. Andy stood in the water holding the stern, and when the moment came, he put one foot into the boat, pushed offshore with his other foot, and twirled his body in a balletic move that landed him on his seat. The first few oar strokes were mine alone while he got his feet situated in the straps. I felt connected to the oars as they penetrated the water. My own muscle power pulled them through, our boat gliding forward toward the open ocean. Shortly, Andy began rowing too, matching my rhythm. With double the power, we shot across the bay and into the wild waters.

Breathe in and breathe out. Legs, back, arms. Legs, back, arms, was our rowing mantra.

We passed natural caves that burrowed into the island and cruised over a reef. Our craft rode high in the water. We watched as blue and golden fish weaved through the tall kelp forest then passed into deeper waters. Pelicans flew above us. Sea lions draped over the last buoy, barking their mournful cries. Water splashed as one of them rolled off the buoy and into the sea.

Now we were in the open ocean, a half mile out, following Catalina Island’s undulating topography. On a lucky day, a seal might pop up and swim alongside for a while. Occasionally, we’d ship the oars and float together, taking in the extraordinary reality of the moment.

Was this a dream? No. Andy was eleven years into his Parkinson’s disease experience. His seven years of being entirely disabled were over.

Motorboats loved to zip up to us and inquire, Is that as fun as it looks? That morning, a giant double-decker yacht came close, its engine purring and its owner standing on deck.

I used to row like that in the mornings and it was the very best part of my day, he said. We smiled at him, and Andy gave a thumbs-up.

I got old, though, he went on. You are lucky you are young and healthy enough to still do that.

Andy was seventy years old, and I was fifty-eight.

I was forty-seven when Andy showed the first symptoms. The early stages of his disease were relatively mild physically. I learned that the really early stages included depression and lack of motivation, which Andy had presented for years.

When Andy was diagnosed with Parkinson’s, we had already been struggling financially for a while. My life had spiraled, setting me on a busy and difficult path. I was responsible for Andy’s care, which increased each week, and juggled that with being the breadwinner, as well as making time to be Mom to fledgling adult children. My busyness actually kept me a step or two ahead of my fear and removed me from fully feeling the losses I was experiencing.

The strategy of not looking too far ahead worked very well for surviving difficult pieces of our life. It protected me. Living in the present moment is usually an act of deepening one’s attention, but I used it as distraction. Being an optimistic person and having the ability to tap into joy amidst suffering, it was an easy leap for me to pass over the depths of my own pain and despair. If I was able to live in a way that kept me from feeling that pain, then did it ever really happen?

We had not been able to afford health insurance for twenty years. Ever since health care in our country had been taken over by private, for-profit insurance companies (around the 1970s), our income did not allow us that luxury. When Andy was diagnosed, we were completely shut out of that system because he had a preexisting condition.

I recognized that my days working were going to have to become longer and more intense. I faced a loss of equal partnership with my husband. Our children were beginning to strike out into the world on their own, and our daughter was beginning her first year of college. They were going to have to live their lives without the support we craved giving them. Since Andy’s disease was incurable, I faced the fact that we would never be able to afford medical care.

There was no one to ask for help. My family didn’t offer. Friends didn’t know I needed it.

I felt alone.

I focused on what we could do rather than what we couldn’t. This way, my fears became manageable, and my life became about simply putting one foot in front of the other.

One of the first major losses the disease brought us was when Andy told me he could no longer safely work with the torch to make his share of the bronze jewelry we sold. I was suddenly responsible for making all of it on my own.

I laugh while writing this now, because the pressure I felt then was nothing compared with what was to come.

After Andy stopped all torch work, he could only use his right arm. We adapted. Andy was still able to polish our jewelry. He could get around alright because of his ingenuity and willingness to accommodate his lessened abilities, but everything he did was a lot slower. Eventually, even the polishing became difficult for him, so Andy taught me the process and I added that to my list of responsibilities.

We lived the first couple of years with the disease hoping it would disappear. I had anxiety about the possibility of Andy’s right side eventually tremoring, too. I would surreptitiously check him daily, because if that ever happened, I knew our life before Parkinson’s would be gone completely.

When his right hand, arm, and side finally did start tremoring, Andy heroically tried and failed to adapt again. We went out to dinner occasionally. Andy would sit on his left hand to appear more normal. He’d eat standing up at our counter so no body part would touch the plate or bowl, and he’d brace his arm against the wall, trying to quiet it enough to bring food to his mouth. Walking became difficult, then dangerous.

Andy was a lifetime runner, and a gorgeous national forest trail began steps from our home. We had run there together for many years. One day Andy took a walk on that trail and returned limping, accompanied by a neighbor who had found him on the ground. He had broken his scapula after falling and had not been able to get up.

Andy stopped brushing his teeth altogether because he often hurt his mouth with his toothbrush. He stopped driving.

These activities of daily living, and his inability to do them, were losses we absorbed. The rate of loss seemed to be at about one thing per week for a very long time. The life we had built together was dismantled piece by piece.

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By the time I turned fifty, Andy’s symptom progression was excruciating and relentless. The amount of his care that fell to me felt overwhelming, but I kept putting one foot in front of the other—the only way I knew how to cope.

Each morning I took care of my own needs as well as Andy’s. I didn’t enjoy shaving him or cutting his nails, but helping him dress, preparing his mouthwash gargle, and brushing his hair were more enjoyable to me. Was I developing preferences of these mundane tasks because they were the only way I could have any say about something that was not optional in my life?

I missed everything about our life before Parkinson’s.

I missed having an independent husband who could make his own choices.

I missed our runs and hikes together.

I missed being more equal.

I missed going out together for dinner or a movie.

I missed working together.

I longed for my husband, best friend, and father of our kids to be well.

My longing sometimes showed up in unattractive ways, like jealousy. In an unguarded moment, driving with a friend and their spouse, I said, It has been devastating to no longer be able to be a team with Andy.

Really. Well, Beverly and I are a team in every aspect of our life together, aren’t we? the spouse replied. He looked at her, smiling happily. Fortunately, I was in the back seat of the car, and they couldn’t see my tears. I was jealous. I was also ashamed to feel that way. I tried not to have unguarded moments.

There wasn’t anybody outside of our relationship to share our pain with, so we didn’t.

Our saving grace at the time was Andy’s ability to speak normally. His voice was my teacher when I had to learn to do the things he used to do. It was the primary way he expressed himself and was one of the only ways we could access our previous life. We talked together and remembered our long romance and adventurous lives. We laughed as I shared stories about my daily activities. One morning, while he was sitting in his chair shaking like crazy instead of going for a run like he did most mornings of his life before Parkinson’s, he said, Honestly, this is the worst aerobic workout ever. I never stop shaking and burn calories like mad but there is no benefit!

His courage and strength existed in his voice. It was a balm to my spirit and connected us in our love.

Living this way for many years takes a toll. In our culture we don’t have a natural way to express the pain we suffer, so usually it stays silent. It is not a peaceful silence, though, because unexpressed trauma causes long term harm.

I recently learned, after Andy regained much of his ability to live independently, how significantly I had repressed my own needs during his battle. My own deepest life force was hidden and hard to find. It made sense. During those hard years, I barely had time to take care of all I was responsible for doing, much less express my own suffering.

At the time, I didn’t have a welcome place to go and express these difficult feelings. It never felt right to intrude on my parents’ or siblings’ lovely lives with my own messy, unattractive pain. I don’t know what would have happened had I felt able to talk to them openly. This is not a judgment against them. I know I am not alone in keeping hard times to myself, and now I’ve learned that all that inward containment can become poison over time if not expressed.

During this period, I was comforted by three people who unexpectedly stepped forward and stood with me in the gates of sorrow when I was stuck. My friend since childhood, Nubia, began to give us money. It was such a needed gift that each time it made me cry. During those hard years, she deposited significant funds into our account that allowed us to try new treatments, help our kids, and live more securely. I felt seen, recognized, and loved.

Our friends and neighbors also stepped up and helped. Marianne and Chris, and Day and Iris, were two young couples who lived in our neighborhood.

Are you and Chris available to come over and feed Andy two times a day all next week? I once asked Marianne over the phone. I have work and need help, but I’ll have premade all the food. It will need to be warmed up, though. I’m hoping $13 an hour is enough?

We can definitely do that, Michelle, but we don’t want to be paid. We love Andy and don’t consider spending time with him to be work, Mar replied. I cried over the pure friendship she offered.

My dad relentlessly pushed us toward trying to get benefits from the VA. It took years. Without his encouragement, I wouldn’t have persisted.

At night, when I couldn’t sleep, I prayed, and I knew many others were praying for me and Andy. God’s love brought peace to my soul but given that I was living on Earth in human form with my sick and disabled husband, I also needed material, pragmatic help for our physical, mental, and emotional needs. When people offered us help, we received so much more than the money, time, or advice they gave; we received the gift of feeling connected.

I have since approached my own healing with the same care I gave Andy during those years. I have learned to pay careful attention to who I give my precious energy to and when it is best to sit with it myself. I use natural treatments and have strengthened my life force through conscious deep breathing, quiet times, rest, flower remedies, and protecting myself from helping when it is not the best choice for me.

There is much suffering in this world and many people who have been hurt more deeply than I. To those people, I bow down in humble respect and hope that they have given themselves time to heal and integrate the suffering into a life that includes joy. It is clear to me now that every person who has sacrificed a part of their life to another or who has sustained a trauma in any way needs to regain balance and find expression for the pain they felt.

In 2015, when Andy really started to feel better, we proceeded much as we had during our most difficult years: by living the best lives we could design and staying present. As with many challenges, the remedy helping us towards our best life was within. Our awareness of our pain would now be balanced with the reality of our joy.

This story is about us discovering through trial and error what Parkinson’s treatments worked and what didn’t. I share how we found our way through sickness and into wellness.

CHAPTER 2

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1974 –1975

I’m off, I called to the Myers family, who were all still at the breakfast table. The smell of pan-fried sausage lingered in the air.

Bye Michelle, Jeannie answered. I’m working late tonight, so can you be here when Janet returns from school?

Jeannie was a nurse and Janet was her ten-year-old daughter who I shared a room with in trade for occasional kid-sitting.

Sure, I’ll be home, I replied.

I was 17 and working as a ski instructor at Aspen Highlands ski area. It was 1974.

It was only two blocks from my house to the bus stop where crowds of tourists and I waited for the free shuttle to take us several miles to the base of Highlands ski area. I clunked along in my ski boots, carrying my skis over my shoulder, and marveled that I was really living in Aspen.

My large sunglasses kept my light blue eyes safe from the high-altitude rays as I shimmied my way toward the front of the crowd waiting for the bus. I was wearing blue jeans, a ski sweater, and a purple instructor’s parka.

I hope I don’t get in trouble again, I thought, remembering my supervisor’s words a few days back. Michelle, the blue jeans have to go. It isn’t a professional look. You’re a good instructor, but you have to buy yourself some ski pants.

At five feet ten inches tall, skinny with blond hair, I knew I stood out in a crowd already, and I felt shy wearing the tight ski pants that were in fashion. All my life I only wanted to fit in and not call attention to myself. Somehow that never happened.

Michelle, do you want a lift?

I looked up from my reverie and saw Bill, a guy I’d recently skied with, in the passenger seat of a very red sports car. It was a cute convertible with the top down.

The driver was cuter than the car.

Yes, I said. I added my skis to theirs, the pile sticking out of the back seat, and climbed onto Bill’s lap, my ski-booted feet barely fitting in.

Every person waiting for the bus was staring at the spectacle of this tall seventeen-year-old ski instructor climbing into a Porsche Speedster already at capacity with two long-haired, wolfishly handsome, certainly stoned men.