Great Googa Mooga: Multiple Sclerosis Runs in the Family

By Joyce Edwards Lee and Richard Edwards

We were walking this journey together, yet alone. Two siblings from a close-knit, boisterous family of six. There is nothing like the camaraderie of family to give you the determination to persevere in spite of any obstacle. We were overwhelmed by the disease of multiple sclerosis as well as other autoimmune diseases. Our outward appearance of healthiness was deceiving. Unbeknownst to us, the disease of multiple sclerosis would eventually consume mobility, sight, memory, fine motor skills, speech, and so much more. The emotional suffering that we have endured was compounded by physical ailments. Many incidents of failing health and loss have occurred over the years. Every nuance of each symptom has vanished at least from our minds. The invisible physical effects still linger in our bodies. Great Googa Mooga is a testament to moving forward, having grieved the loss of bodily function, but coming to an acceptance of what is. Every time we felt that we could not go on, our strength was bolstered by the kind deeds of others and prayer. This disabling and progressive disease was no match for two people resolute to live their lives.

• Language: English
• Publisher: Fulton Books, Inc.
• Release date: Apr 5, 2022
• ISBN: 9781637109892

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Great Googa Mooga

Multiple Sclerosis Runs in the Family

Joyce Edwards Lee and Richard Edwards

Copyright © 2021 Joyce Edwards Lee and Richard Edwards

All rights reserved

First Edition

Fulton Books

Meadville, PA

Published by Fulton Books 2021

ISBN 978-1-63710-988-5 (paperback)

ISBN 978-1-63860-956-8 (hardcover)

ISBN 978-1-63710-989-2 (digital)

Printed in the United States of America

Table of Contents

Introduction

Acknowledgments

Chapter 1

The Early Years

Chapter 2

College Daize

Chapter 3

Jobs

Chapter 4

In Sickness and in Health

Chapter 5

Family

Chapter 6

Twist of Fate

Chapter 7

Faith

Chapter 8

State of Denial

Chapter 9

Time Waits for No One

Chapter 10

Memory

Chapter 11

Melancholia

Chapter 12

Journey of a Thousand Miles

About the Authors

Introduction

The utterance we heard our father say more times than we could count was Great googa mooga. This can mean so many things, but in this instance, it had become an expression of awe, fright, or an utterance of great surprise.

As the middle and youngest child, respectively, in a family of six, we were the siblings who would be diagnosed with multiple sclerosis, in addition to other autoimmune diseases. Multiple sclerosis in particular is a disabling, progressive disease that effects the central nervous system, brain, spinal cord, optic nerve. It causes irreversible damage and deterioration of function such as speech, memory, mobility, visual, and fine motor skills. This disease is chronic with symptoms of weakness, trembling, sensory disturbances, fatigue, pain, bowel and bladder problems, dysphagia, etc. The list is too extensive to include in this writing. Our siblings would suffer and, as the years progressed, be diagnosed with several different autoimmune diseases such as sarcoidosis, lupus, Raynaud's disease, celiac disease, and rheumatoid arthritis. Research back in the day regarding this illness was fleeting unless you knew where to look. For us, it must have been hidden in plain sight because we were not able to immediately get a diagnosis, treatment, or specific answers. At the time of my diagnosis, our parents were told that it was uncommon in people of color and definitely could not run in the family. There is now evidence that the illness of multiple sclerosis experienced by other ethnic groups is different in people of color. The course of the disease has a greater effect on mobility; more relapses and severe disability ensue. If only we would have had this insight some forty-plus years ago. Autoimmune disease is a condition in which your immune system attacks your body's healthy cells. People with autoimmune diseases have a tendency to develop additional autoimmune diseases.

This is called multiple autoimmune disease, reportedly linked through genetics and environmental conditions.

Great googa mooga, these illnesses were fierce and unfortunately debilitating, having a tremendous effect on our lives. As we came to learn, this disease is not for the weak at heart, the faint of spirit, those bereft of faith, or short on patience. We put our trust in a higher power who wakes us up every morning. The doctors say time has not lessened the impact of this illness on our bodies, but the greatest physician ever has not declared the last word.

Great googa mooga, through the years, multiple sclerosis has taken us to the depths of despair, but we claim victory. Fast-forward through the years as we share the incidents that we have endured.

Acknowledgments

Brodie, my husband, for his encouragement to seek out the answers together related to this illness. One hand, one heart seems appropriate as we started this journey shortly after getting married.

Liane, Lamar, and my niece Rikki Alizé, the grown children in our lives. We never wanted to show that we were defeated by this disease. It is true that life has its ups and downs, but determination and prayer kept us on the path to victory.

Thank you to our siblings who have lived up to the mantra All for one and one for all. Brenda, Patricia, Valerie, Jacob III.

Our parents, Frances and Jacob walked with us every step of the way. The encouragement and prayers through the good times and the bad helped us to move forward. Mother continues to uplift us and the quotation from Proverbs 3:5–6. Dad's favorite passage continues to resonate in our hearts, making all the difference in the world. May he rest in peace.

For everyone who said a prayer, gave advice, or just took the time to listen, we know you felt our pain. We are filled with gratitude.

Thank you to my brother Richard who allowed me to incorporate some of his experiences related to the disabling disease of multiple sclerosis.

Chapter 1

The Early Years

I was born premature and spent almost a year in the neonatal care unit. Being three pounds in weight and sickly, I was given very little chance of survival. My father said I could fit in the palm of his hand. After a few months, I began to thrive and was able to join the family at home.

For the most part, I was a healthy child until my teenage years. While laying on my bed one evening, listening to music, a pain gripped my side so suddenly it took me by surprise. I could not move and started to cry. One of my sisters went to get the folks. When asked what happened, I could not tell them what was happening because the pain took my breath away. I fell back on the pillow, watching the commotion around me. It was as if I was drifting away and floating above my body. Dad lifted me up and hurried out of the house with me in his arms. I passed out before getting to the hospital—so I was told. The condition was appendicitis, which is a medical emergency and requires surgery. Many weeks later, I returned home to rest and had a long suture mark down the middle of my stomach.

Richard in his teen years was not able to sit up or walk erect without terrific pain in his back. After being checked by a doctor, the diagnosis was scoliosis. His backbone was curved to the side. He was in the hospital for quite some time while he got treatment. Upon his return home, school