Jubilee

By Roxann Dehlin

There aren't many true stories that are put in writing like mine. A wholly truthful narrative that illustrates not only who but also what I survived. It has been challenging for me to put down in writing what I discovered surrounding the devastating quartet of health events that continue to affect my life since I was 8 months old. This journey highlights how I moved on from my past, and remarkably, how I become seizure-free. In my book about trauma, I became compelled to discover not only why I had a stroke when I was 8 months old but also how I had survived these life-threatening traumas, all happening in the third week of August 1947.

• Language: English
• Publisher: Roxann Dehlin
• Release date: Jan 1, 2021
• ISBN: 9781801280563

Book preview

Acknowledgment

My heartfelt appreciation goes to those who have made my life seizure-free: my husband, Ronald L Dehlin, Mark D Holmes, M.D., University of Washington Medicine, Dr. George Ojemann, M.D., University of Washington Medical Center; Linda Monroe, R. EEG. T., and Marsha Cantrell, R.N., the Epilepsy Center, St. Luke’s Regional Medical Center in Boise, Idaho. I would also like to extend my gratitude to the University of Washington Medical Center in Seattle, Harborview Medical Center in Seattle, and the Idaho Epilepsy League in Boise.

To my dad, William Arthur Howell, and Grandparents, Bessie and Don Howell. I had the pleasure and advantage of documenting my own story with World War II era personal letters sent to my grandparents from Dad while he served in an Army Medical Detachment. Although Mother sought out publicity, I am grateful to her for saving the in-depth newspaper articles about my journey with Polio. Ironically, they planted my seed of doubt about my mother’s personality disorder and her guilt, insecurity, and failure to care about her daughter.

To my fraternal grandparents, Don and Bessie Howell, who taught me the meaning of unconditional love, and enhanced my faith in God, as well as my capacity to forgive. My Grandma Bessie looked at me with such obvious love, interest, and acceptance that I always knew that she understood exactly how I felt. I always knew she was on my side when I needed help and I could take refuge in her loving arms.

To Grandpa Don, who bought my horse, Jubilee, for me, and unbeknownst to everyone, Jubilee’s gait, his God given way of moving, altered the wiring (dendritic connections) in my brain and that ultimately changed my life. It’s true that life’s journey starts with one step and my step up was to mount my horses.

I am especially indebted to my past employment at Boise State University who offered me the opportunity to work with medical professionals who understood and accepted the challenges I faced while working full time, being a mother and wife, and taking evening classes, all the while enduring on average twelve Epileptic seizures a week.

It was while working at Boise State University, College of Health Education, Continuing Education program that I met the epileptologist who changed my life. Dr. Mark Holmes, I genuinely believe you saved my life! Encountering Dr. Holmes through my work transformed my life, and I am eternally grateful for his enduring concern.

My scrapbooks mark life events and the people I encountered along the way. Due to my loss of some memory capability because of my stroke at 8-months old, I am a visual storyteller, and this book is not only a memoir but also a journal of self-discovery.

About the Author

Writing this has been both humbling and healing because after recognizing my insecurities, abilities, and my family of origin narcissistic dysfunction, I decided to go above and beyond my own expectations. I found that I can do more to help myself than anyone can do for me!

I hope that by reflecting on my trials, struggles, and triumphs with Epilepsy and an uncaring narcissistic mother and brother, the resolve of those who may see themselves in my story are also able to persevere and become strong enough to improve their lives.

There are times in life when the question of knowing if one can think differently than one thinks, and perceive differently than one sees, is absolutely necessary if one is to go on looking and reflecting at all.

Foucault, Michel. L’usage des plaisirs. Histoire de la sexualite. Vol. 2-3. Paris: Gallimard, 1984. 14.

I will never forget those who helped me, and I forgive the gossipmongers who readily spread accusations, assumptions, and even those who scattered bold faced lies. Long ago, I learned that taking nothing from a narcissistic abuser is far better than taking the scraps they may choose to let you have because once they have hooked you, they can destroy your self-esteem and if you let them, your life.

That doesn’t mean that I trust them, but my forgiveness of them allows me to let go and move on.

A brown horse Description automatically generated

––––––––

Page Blank Intentionally

Preface

There aren’t many true stories that are put in writing like mine. A wholly truthful narrative that illustrates not only who but also what I survived. It has been challenging for me to put down in writing what I discovered surrounding the devastating quartet of health events that continue to affect my life since I was 8 months old. This journey highlights how I moved on from my past, and remarkably, how I become seizure-free.

In my book about trauma, I became compelled to discover not only why I had a stroke when I was 8 months old but also how I had survived these life-threatening traumas, all happening in the third week of August 1947.

Although my narcissistic mother offered no love or acceptance of me, the humanity and concern I received from my grandparents and my husband, Ron, during my life journey is immeasurable. I believe journey to full functioning and health could not have been achieved without the love and understanding of my husband, fraternal grandparents, my dad, and my medical team.

I only wish I’d known at the time, that my beloved horse, Jubilee, and the God given miracle of his motion, changed my brain cells and their dendrites, and eventually changed the cognitive pathways of my brain. Only while writing this narrative, I discovered my horse Jubilee ultimately changed the course of my life.

There were so many people who did not accept me throughout my life but then even I did not completely understand me. As a child, I wondered if I looked into a mirror, if I could see me as they see me. No, that didn’t work. I began to realize that I would ultimately need to put my story down on paper so I could see where I’d been.

I found that my life – no, my entire world – has been gas lit by misreporting. I became compelled to write this book in order to deconstruct the misinformation that was spread about me and condemn the ways the weaponization of language strengthened those who wanted me isolated. I received extraordinarily little support during that time because I looked normal and Epilepsy wasn’t a socially acceptable affliction like breast cancer is today.

That forced me to wonder what it was that I didn’t know. People can die from seizing and my life depended upon facts that had yet to be uncovered.

I became compelled to expose the web of lies and also expose their denial of complicity. The ugly history of my childhood reality was bad enough, so I had to rise above the hurt I felt of being discriminated against and escape an environment that allowed hatred to escalate through their megaphone of lies.

This story underscores how World War II, the Auschwitz concentration camp, and the late 1940’s family and personal dynamics of a mother’s obsessive insecurity morphed from covert to malignant narcissism that altered the lives of my dysfunctional family.

I was just collateral damage, nothing more than an unwanted pregnancy, and held as a hostage to misfortune for my narcissistic mother. Mother had a desperate need to cover up her parenting mistakes, guilt, emotional immaturity, financial neediness, and ultimately, to hide the tragic neglect of her 8-month-old baby that led to her life-long disability.

Contents

Dedication

Acknowledgment

About the Author

Preface

Introduction

Chapter 1- Discovery.......................41

Chapter 2- Freedom and Friendships.......66

Chapter 3- Heartbreak and survival!........97

Chapter 4- Competition among Friends

Chapter 5- Betrayal!

Chapter 6- Don’t Brake!

Chapter 7- College........................147

Chapter 8- Love And Marriage.............154

Chapter 9- Life With Health

Chapter 10- Uncovering The Truth

Appendix - Becoming Seizure Free

Bibliography

Page Left Blank Intentionally

Introduction

At a point in my life, I faced a self-imposed obligation to uncover a mystery that has affected my entire life. The quest for discovering this truth took me a lifetime to come to fruition.

I suffered petit mal and sometimes grand mal epileptic seizures day and night at home, on my horse, at school and work for the first 42 years of my life before my life-saving medical surgery.

My school report cards documented an inability to listen carefully and follow instructions but I didn’t know that wasn’t said to everyone. After discovering what normal people did to understand their lives, I decided that it was essential for me to understand myself, my environment, and the motives of my family of origin that presided over my existence, whether for good or bad. All in all, I focused on my search for the truth among liars.

In August 1947, I came down with the flu, an acute respiratory infection, and both poliomyelitis and a stroke. It was only by God’s grace that I recovered from this quartet of traumas.

How did Mother hide her decision to leave her children home alone while sick and hide her neglect of parenting from her husband? But what was equally important, hide it from her husband’s parents who came to suspect that her professed invisible neglect and lack of caring allowed me to become infected with the polio virus, catch the flu that became an acute respiratory infection that my brother brought home, and unbeknownst to everyone, cause my stroke?

Why did Mother decide to leave her sick child home alone and not take me to my dad’s parent’s home for daycare that fateful day? My grandparents lived just 5 miles away. What made her twist the truth about why she delayed rushing me to the doctor when these seizures began?

All these years later, it was time for me to take control of my feelings of hurt and learn what motivated Mother ignore the seriousness of what ailed her baby. Her motives through the years were never spoken of, but nonetheless were felt.

Brain trauma is a beast and always affects one in mysterious ways. Brain cells that have died can’t be fixed, but undamaged brain cells can learn to do the jobs of neighboring cells that have died, especially in young people.

It is fortunate for me that kids have an edge over adults because young brains are still developing. In this day and age, it is now known that most kids who have had strokes can learn to interact normally and be active members of their communities.[1]

In many cases, after a stroke, children can learn to use their arms and legs and speak again, but for me, there were no social workers, speech or physical therapists, or even teachers or counselors to help me so this process was slow and difficult.

There was a clear lack of understanding of the devastating impacts of brain injury because doctors had not noticed that I’d had a stroke; headaches could be called allergies and dismissed, internal temperature instability and double vision ignored, and seizures could be explained away as a behavioral problem. But the worst of all, because I was a child whose mother thought only wanted attention, I was firmly rejected and ultimately isolated each time I had a seizure until I stopped acting that way.

When I became old enough to recognize that I was different from the other kids my age, Mother’s constant criticism became more subtle, but she still compared me to my brother and asked, Why can’t you be more like your brother?

I developed what doctors said were migraine headaches that lasted for days along with unexplainable stomach aches and they probably thought I was odd.  During these incidents, I watched others and tried to remember how they acted. I wondered what they did to avoid getting into trouble. I learned to mimic them and more or less deny my weaknesses and get along in my hostile world.

Mother was so skilled at casting intimidation and manipulation; I was amazed that her refusal for me to ever please her was so undetectable to others.

I began to marvel that after Jubilee entered my life and I rode him every day of the week my popularity and successful life away from my mother provided me evidence of the brain’s miraculous ability to heal and rewire itself through movement. Years later, the doctors said my improved development was triggered by the brain’s ability to change and this miraculous ability of nature to heal itself is called brain plasticity.

Seeing the devasting effects of overt and covert lies, and especially lies of omission, I began to analyze everyday conversations and how they affected me! As I began to speculate about what had happened to me as an eight-month-old infant, I found that I needed to know what those responsible for my safekeeping did or did not do.

I was amazed at how removing a part of my brain that was located next to my brain stem could allow me to be able to earn not only a Bachelor of Science degree but also a Master of Education degree while caring for my family, working full time, and studying both nights and weekends. On May 16, 1998, I graduated with my Master