Resilience in the Face of Multiple Sclerosis

Copyright © 2019 Brandon Emet Beaber M.D.

Resilience in the Face of Multiple Sclerosis/Brandon Emet Beaber M.D.–1st Ed.

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The content in this book solely represents the opinions of the author. Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas and suggestions contained in this book are not intended as a substitute for consulting with your physician or other relevant professional.

Foreword by Sky-Ellen Beaber Ph.D.

Contributions by Rex Beaber J.D. Ph.D., Mark Katz Ph.D., Melissa Fledderjohann Ph.D., Jon Forsyth Ph.D., Mabel Katz

Edited by The Artful Editor, Rex Beaber J.D. Ph.D., Alice Handel, Dr. Alan Epstein, J.R. Alcoyne J.D., Calli, Shalom Rabizadeh, [fiverr.com accounts] gingermaneditor, thornecomm5r, kitd56

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ISBN-13: 978-1-7332426-1-5

ISBN-10: 1-7332426-1-9

Praise for

Resilience in the Face of Multiple Sclerosis

"A unique exploration of this very important psychologic construct in persons with MS. The detailed and engrossing individual patient stories will resonate with readers, and there are clear explanations of practical strategies that can be used to develop and enhance resilience for anyone with a chronic illness.

—Barbara S. Giesser M.D., Author of Multiple Sclerosis for Dummies

Dr. Beaber shares the inspiring stories of five people who challenged his beliefs about what it means to live well with MS—an unpredictable and often disabling disease. As a young doctor, he takes us on his journey to see beyond the fear and physical disability MS can cause, to discover the power of resilience these remarkable individuals display. He introduces us to an in-depth, yet accessible overview of the often-confusing and seemingly conflicting theories of resilience. Throughout the book, he skillfully interweaves pragmatic ways all of us can improve our resilience. His compassionate voice shines through and will encourage you!

—Annette Langer-Gould M.D. Ph.D., Multiple sclerosis specialist and regional lead for Clinical and Translational Neuroscience for the Southern California Permanente Medical Group

An amazing piece for patients to learn about things they have control over...a wakeup call to the medical community, that they are being cavalier about the process of accepting diagnoses. I love the whole shifting perspective, mindfulness, etc.…it is well written with a unique insight…a great read.

—Marie Heron, Host of the Living with MS Truth be Told podcast, Qigong for MS instructor, speaker, and patient advocate

If you are impacted by MS, then you need to read this book right now! I’ve learned a lot from reading it, lessons I look forward to sharing with my own clinic patients.

—Aaron Boster M.D., Systems medical chief of neuroimmunology & director MS center, OhioHealth.

"Beaber explores the personal stories of his patients dealing with MS, as well as other hardships. Dr. Beaber’s expert synthesis of personal, medical, and psychological elements is powerful and inspiring. This academic work reminds us that we all have strength and courage within us to face life’s challenges.

—Gail C Brady, M.D., Psychiatrist

This manuscript is an amazing opportunity for education and growth on multiple fronts. It does a great job combining psychological frameworks for treating MS in a novel way. Resiliency is a powerful tool and is displayed beautifully.

—Melissa Fledderjohann Ph.D., Clinical psychologist and director of pain management at San Mateo Medical Center

Open-minded in terms of what can help people, be it traditional religion or philosophy or Buddhist concepts and ideas.

—J.R. Alcyone, Author of Five Fathoms Beneath

The author presents a very humanistic appreciation for his patients, tries to not define them by their MS, and yet also describes how they have integrated (and to what degree) their MS into their identity and self-concept. Emerging research has shown that resilience can be taught and enhanced through training and therapy. Therefore, resilience may be conceptualized as a skill that can be drawn upon and refined, even if individuals are born with more or less resilience at the outset. Presenting this perspective early on promotes hope and motivation of the reader to pursue activities to enhance their own resilience.

—Anonymous Academic Reviewer

As a neurologist, treating patients with MS, I have encountered countless situations in which patients, after receiving an MS diagnosis, feel and act as if they already lost the ability to live a normal life. By introducing the concept of resilience, the ability to survive and succeed despite hardship and adversity and telling the story of patients who thrived despite having MS, this book can improve the lives of patients who live with a chronic and challenging neurological disease.

—Anonymous Academic Reviewer

Dr. Beaber’s primary goal is to demonstrate to those living with multiple sclerosis or any significant life stressors/struggles that the character trait of resilience can have a tremendous positive impact on one’s happiness and even functional status in the face of adversity. His corollary goal is to demonstrate that while some people seem to be innately resilient, this a trait that to a large degree can be taught and incorporated into one’s approach to living with whatever struggles one may face. The author has done a phenomenal amount of research on the topic of resilience. He has also consulted and interviewed other experts in the field to get their insights and opinions on the topics presented.

—Anonymous Academic Reviewer

The work is clearly laid out, easy to follow, and the chapters flow logically from one to another. The case reports are all compelling and provide strong examples of how resilience plays a pivotal role in helping individuals transcend the limitations of a disease like MS.

—Anonymous Academic Reviewer

To my wife, Elana

Table of Contents

Praise for Resilience in the Face of Multiple Sclerosis

To my wife, Elana

Foreword

Chapter 1: Multiple Sclerosis

Introduction

MS Basics

A Clinical Description of MS

Treatments

Resilience

Chapter One References

Chapter 2: Dr. Emily Spitz

Chapter 2 References

Chapter 3: The Science of Resilience

Emotion Regulation

Impulse Control

Realistic Optimism

Causal Analysis

Empathy

Self-Efficacy

Reaching Out

Icebergs

Me vs. Not Me, Always vs Not Always, and Everything vs. Not Everything

Measuring Resilience

Post-Traumatic Stress Disorder

Childhood

Broaden and Build

Biological factors

Resilience in MS

Chapter Three References

Chapter 4: Dr. James Bhat

Chapter Four References

Chapter 5: The Psychology of Resilience

Cognitive Psychology

Rational Emotive Behavioral Therapy (REBT)

Perspective

Assimilative and Accommodative Coping

Positive Psychology

Logotherapy

Acceptance and Commitment Therapy (ACT)

The American Psychological Association

Chapter Five References

Chapter 6: Sandra Orozco

Chapter 6 References

Chapter 7: Ho’oponopono

Chapter Seven References

Chapter 8: Miguel Hernandez

Chapter Eight References

Chapter 9: Mindfulness

Dr. Kristin Neff

Tara Brach

Noah Levine

The Science of Mindfulness

Chapter Nine References

Chapter 10: Barbara Richardson

Chapter Ten References

Chapter 11: Conclusion

Similarities

Setbacks

MS as a Unique Challenge to Resilience

Happiness

It Takes a Village

Religion and Spirituality

Shattered Assumptions

A return to the RS-11

Summary of resilience suggestions

Final Thoughts

Chapter Eleven References

Appendices

Appendix A

Appendix B: The City of Bell Scandal

Appendix C: RS-11 Survey Results

Appendix D: Philosophical Significance of the Nervous System

Appendices References

Acknowledgements

Index

Foreword

by Sky-Ellen Beaber Ph.D.

All of us, at some point in our life, will face circumstances that challenge us. Some of these are acute situational stressors, such as the loss of a job, death of a family member, or perhaps loss of a romantic partnership. Other forms of adversity are more insidious and pervasive.

In this book, Dr. Beaber presents compelling stories, the individual experiences of his patients coping with a chronic and progressive illness, multiple sclerosis. He lays forth these biographies, along with data and research on psychological resilience and coping strategies. While many of us will not face a diagnosis of MS in this lifetime, we are all certain to encounter pain, suffering, and the unavoidable realization that much in this world is unfair, difficult, and often not what we expected. Learning more about ways we can cope when life throws us curveballs is one way of feeling some sense of agency in a world with many factors outside our control.

I remind myself that these stories are a particular subset of patients—those with health insurance. These stories are people with access to Dr. Beaber’s care, expertise, and knowledge. Whenever we read a narrative, we might also ask ourselves, Whose story or experience am I reading? What other stories are not being told?

As a psychologist, I also see a very specific subset of individuals in suffering, patients who either have health insurance or the means to pay for therapy out of pocket. In this day and age with rising costs, health care and mental health care have become inaccessible to many. Keeping this in mind, I invite you to read the following examples, remembering that a multiplicity of factors influence our response to stress, our reaction to suffering, and our ability to tolerate loss. To have the fullest understanding of an individual’s circumstance and response, we must take into account the wider societal context.

How do we come to understand and cope with loss? This is the question Dr. Beaber seeks to answer through his exploration. These stories center around loss. In the most narrow and reductionist definition, loss manifests in a medical illness like MS as losing different bodily functions. However, this is just one piece of the story. Loss may encompass loss of autonomy, privacy, relationships, parts of identity, or certain hopes and dreams for the future. Only each individual can answer what is lost for them. Loss is unavoidable, and some losses are easier to tolerate or accept than others. To understand the reality of living with an illness, one that is chronic and potentially progressive, we must understand what it means to face loss and grief. We must understand the discomfort that comes with accepting that we rarely know how things will unfold, that much is unknowable and uncertain in life. These stories are about loss, but they are also about hope, perseverance, endurance, acceptance and compassion.

As I work in the mental health field and not the medical field, I am most able to speak to resilience from my experience using CBT (Cognitive Behavioral Therapy) and ACT (Acceptance and Commitment Therapy) as approaches to care. As a cognitive behavioral therapist, I focus on my patient’s thoughts, as our thoughts can impact our moods and behaviors. An example of this is the way many people respond to a break up, perhaps one of the most common examples of loss that we encounter. When a relationship ends, people may say to themselves, This is terrible; I’m so lonely and upset; I can’t stand it! Their narrative may be, I’ll never find love again; I will always be alone, and life just isn’t worth living. This train of thinking contains many cognitive distortions, catastrophizing, fortune telling (predicting the future), along with an underestimation of one’s ability to cope. Anyone repeating these distressing statements to themselves is likely to feel hopeless. Often, our thoughts are so automatic and move so quickly we don’t even notice what it is we are saying to ourselves. When I meet with patients, I encourage them to pay close attention to their thoughts, to really slow down and notice what it is they say to themselves. A mindfulness practice allows a person to observe their own cognitive patterns. We have the agency, once we identify these stories, to start to change how we relate to them. The person who says to themselves the negative statements above is at much greater risk of depression and self-harm.

In Miguel’s story (Chapter 8), there is a point where he reflects on the way his thinking shifts:

In my head, I was asking, ‘How can you be happy with all of this happening?’ What else are you to be? Sad and shitty for the rest of your life or just happy because you woke up today? Let’s go with happy.

This quote reflects a pivotal point in Miguel’s journey, where he starts to recognize he has choices in how he relates to his situation.

The ACT theoretical lens reminds us we are all trying to live lives full of value and meaning. Understanding one’s values can provide guidance in moments where we face hardship or need to make difficult decisions. Perhaps we can’t always live out our values in the ideal way we would like to, but we may still have options. Dr. James Bhat (Chapter 4) strikes me in that he highly values his work. Dr. Bhat came up with some creative solutions to continue to practice psychiatry due to his value of work, such as hiring a driver for his commute and using a baby monitor to speak to patients in the waiting room. This is one example of how one may take a step to live out important values, even in the face of changing circumstances and ability.

Another example of this is Martha Collins (Chapter 10). Martha’s story speaks of her deeply held values around being a parent and having a family. Faith and service are also central to her values and life story.

Woven throughout the book are other examples of individuals continuing to pursue their values. The interview with Miguel Hernandez shows his values of love, relationships, work, learning, and inner strength. Miguel speaks positively about his parents for their hard work and perseverance, and his own continuous striving for education and job opportunities reflects his internalization of these values. Sandra Orozco’s story (Chapter 6) centers on her values of service, justice, and independence.

Medical professionals are not trained, as mental health professionals are, to help clients identify their thoughts and work on reframing them or relating to them differently. Having access to these tools can make a significant difference in a client’s experience of receiving a medical diagnosis. It is important not to accept all of our thoughts as facts. We have all kinds of thoughts, some insightful and transformative, and some that are exaggerations and fears rather than facts. Learning to discern the difference between these thoughts can have a positive impact on one’s experience. Additionally, we can continue to live in value-congruent ways while having distressing thoughts by not allowing them to take us off our path. Dr. Beaber presents a thorough review of these tools to assist both patients and professionals.

When my brother first told to me he planned to write this book, we discussed what topics might be helpful to include and what I might contribute. I shared my experience of studying mindfulness both professionally and personally and the ways I have integrated it into my practice. My first experience with mindfulness was a deep dive into a seven-day meditation retreat. The retreat included multiple sits per day, as well as yoga, a moving mindfulness practice. This week was transformative for me, as I felt my nervous system really settle in a way it never had before. Fortunately, you do not need a seven-day retreat to achieve the benefits of mindfulness (although it certainly is a beneficial experience!) We can take mindful pauses throughout our day and build a practice in as little as a few minutes a day. Teaching clients mindfulness skills can be a very powerful way to help people to sit with, observe, and accept what is. Although the impact of my own retreat experience was relaxing, mindfulness does not always result in feeling good. In fact, the intention of mindfulness is not to change our current state—but to fully experience and observe what is. Often, when we are struggling to live out one of our values, the experience is far from relaxing and pleasant. We must accept the whole range of emotions and thoughts that coincides with living a meaningful life.

My second experience was a five-day retreat with Dr. Kristin Neff. Dr. Beaber details some of Dr. Neff’s teachings on self-compassion in Chapter 9. This retreat, not unlike the first, transformed my relationship to myself and to my work. In my years of practice, one ongoing theme I observe is that clients are often very hard on themselves. When we are already suffering, berating ourselves only leads to additional suffering. Unfortunately, many of us believe that self-blame and self-critique will lead to us making progress towards our goals. However, it is quite the opposite. In her book, Dr. Neff details the research that shows the way the brain on shame negatively impacts our motivation to look at the very areas where we need to grow. If we can be kind to ourselves, loving, forgiving, and compassionate, our experience of suffering attenuates. This is an invaluable coping strategy for all of us, whether we are facing a chronic illness, or another stressor.

While there is currently no cure for MS, the ideas in this book give us some framework for coping and thriving. The review of the literature on psychological resilience, mindfulness, Ho’oponopono, logotherapy, etc. provides us with strategies on how to relate to and contend with the experience of impermanence and suffering. In these personal narratives, we gain some insight into the moments we have choice, and in those choices lies our freedom.

Chapter 1:

Multiple Sclerosis

I want America to know that you can still have a full, exciting, and productive life even if you or your loved one is battling a debilitating, chronic disease such as MS.

—Michaele Salahi

My head was spinning. I was in severe pain. On a scale of one to ten, it was a twenty. I couldn’t even turn my head to the left because I was in such pain. I had paralysis of my right face. My throat had closed down, and I could not eat. I had peripheral blindness of both eyes. I felt like I was dying. I lost faith. I lost hope. I lost my career asa healthcare professional. I was slowly going into a state of depression, and I felt worthless to society. I went to my nephew Jonathan when he was seven days old, and I said to him, I’m not going to be around. I’m going to be a little angel watching over you.

These are the words of Sandra Orozco, a then thirty-eight-year-old hospital administrator. She was an energetic and ambitious young woman with the world as her oyster, but the attack on January 19th, 1993 left her scared and hopeless. The mysterious illness started with a vague imbalance followed by vertigo, blackouts, and a shutdown of half the functions of her nervous system. Perhaps worst of all was the widespread pain—burning, tingling, sharp, stinging—like a blanket of hot coals with electric shocks striking stochastically. It was not just her body that failed her but her self-confidence and her entire support system. When you are ill and no one knows why, sometimes people assume that it is self-inflicted or you just are not trying hard enough. Even those who love us prefer to blame the victim rather than acknowledge that life can be arbitrary, cruel, and tragic. Sandra’s remembrance of her childhood is not atypical of the family interactions that haunt children with mystifying symptoms.

You’re fat. You’re ugly. Your teeth are bad…no man’s gonna want you. You’re no good for nobody. My mom said that. If I would say something, she would hit me. I was crying. I would not take a bath. I didn’t care about myself or my acquaintances. I didn’t want to go out. I didn’t want to eat.

These sound like the words of a woman battered, beaten, and crushed by adversity, but when I met Sandra in 2016, she had become one of the strongest and most inspirational people I have ever known. It was not because of a fortuitous recovery or miracle cure. On the contrary, she has used a wheelchair for years and is plagued by a myriad of symptoms both conspicuous and invisible. She has battled depression, family conflict, and a host of personal demons. However, everyone she meets can see something which is quite profound: An infectious smile, an appreciation for little things, a philanthropic purpose, and a passion for life. She is optimistic, personable, and productive.She reoriented her organizational and leadership talents towards a life of political activism and has become a pillar of strength in her community. She has meaningful social relationships, and she wakes up every morning with something to do. Over the years, she has won awards, shaped the local political landscape, and even took part in uncovering the infamous City of Bell scandal in 2010.

Sandra is just one of the amazing people I have met over the years. The forthcoming chapters will elucidate their inspirational stories, returning to Sandra in Chapter Six. These narratives unveil the hidden powers of psychological resilience that can salvage a life plagued by a terrifying illness. They remind us of a truism. Life might be described as a war between human-kind and disease, accidents, homicide, and aging. That war is punctuated by smaller battles and skirmishes modern medicine graciously allows us to win. Alas, while we may win some battles, our shared destiny is to lose the war. Accordingly, the measure of any person cannot be victory but only the dignity with which he or she conducts the struggle. Our defining character can only be our psychological resilience. I hope these stories of resilience will be instructive, heartwarming, and inspiring.

Introduction

As a clinical neurologist, I have the unique experience of spending a significant amount of time with people who have physical limitations. I specialize in treating multiple sclerosis (MS) and other immunological diseases of the nervous system. MS affects nearly one million Americans¹ and has a profound physical and emotional impact on their lives. However, even when people develop serious disabilities from the disease, they often find a way to thrive and not just survive.

You may ask, Why write a book exploring the resilient qualities of individuals with MS? Three reasons: First, I think they can provide us life lessons we can all benefit from, whether or not we suffer from a particular disease. Second, by drawing attention to their resilient qualities, I am hoping to ensure that they, and others with significant health conditions, come to see themselves in this light as well. And third, I want those not intimately involved in the MS community to learn more about the condition and have a taste of what it is like to live with a disability.

MS is a fascinating disease. A detailed description of the extensive scientific knowledge on this topic is beyond the scope of this work, but I will give you an overview to provide some context. Multiple sclerosis is named after areas of scar-like tissue, known as sclerotic plaques, in the brain, spinal cord, and optic nerves of affected patients. MS damages the myelin, a fatty sheath that normally protects the nerve fibers. The myelin aids in the speedy and efficient communication between cells within the nervous system. A schematic of a normal nerve fiber with surrounding myelin is shown in Figure 1.

Figure 1. A myelin-covered nerve fiber reminds us of an electrical wire with insulation. The oligodendrocytes are supportive cells that produce myelin in the central nervous system. Source of graphic: Wikimedia Commons.

Magnetic resonance imaging (MRI) scans of the nervous system in patients with MS often reveal impressive macrostructural changes. Such changes are shown in the image below (Figure 2). Compare this to a normal MRI (Figure 3).

Figure 2. An MRI showing abnormal plaques in the white matter typical of multiple sclerosis (some of which are noted by arrows). Source of graphic: Wikimedia Commons.

Figure 3. A normal MRI of the brain (T2 axial sequence). Source of graphic: Wikimedia Commons.

The potential ramifications of MS are endless, because almost everything about who we are and what we do is a manifestation of the central nervous system. This includes our senses, memories, abilities, personalities, tendencies, and even morals. For more on the philosophical significance of the nervous system, see Appendix D

MS Basics

At the outset, it is helpful to have a sense of the brain and its attached nervous system. The nervous system is, at its core, the most elegant and robust communication system in the known universe. It is composed of billions of cells (neurons) that chatter back and forth among themselves, conversing with all the senses and muscles that control dexterity and ambulation. It is responsible for hearing, speech, interpreting speech, and fashioning responses. The brain learns by storing information, and it regulates activities by retrieving information, implementing plans, and sending orders to muscles. Through the optic nerves, the brain obtains visual information from the environment. Much of the brain is dedicated to integration, correspondence between various parts, and secondary processing. Hence, the brain, with its neurons, is the organ of communication within the body. Any disease or pathology that impedes, retards, or garbles this communication process results in a wide array of impairments. MS is just one of numerous diseases that interfere with our internal communication apparatus, and it has its own unique tendencies and peculiarities.

MS has two major clinical presentations: a relapsing form and a progressive form. Relapsing MS is marked by the dramatic development of neurological symptoms, such as vision loss, vertigo, numbness or weakness, followed by relative quiescence. The attacks of symptoms are called relapses, and the intervening periods are called remissions. Progressive MS, on the other hand, causes a more continuous and insidious decline in neurological function, often manifesting with gait impairment or cognitive dysfunction. This steady worsening is known as progression. Relapsing MS is more common in younger individuals, and progressive MS is more common in older individuals. The two forms can overlap, and relapsing MS can transition into progressive MS. Progressive MS has a more negative connotation because it is often associated with greater disability than relapsing MS.

Relapsing MS appears to be sparked primarily by abnormal inflammation, and white blood cells invade the central nervous system, causing injury. Progressive MS appears to be at least partly degenerative and can resemble Alzheimer’s disease or Parkinson’s disease. The cause of MS is unknown, but evidence suggests that the immune system becomes dysregulated and attacks the body’s own tissues, analogous to autoimmune diseases such as lupus or rheumatoid arthritis. Various risk factors for MS have been identified. These include living far from the equator, having low blood levels of vitamin D, having a history of mononucleosis (the kissing disease, which causes fatigue), smoking, being born in May, and having a family history of the disease. There is also evidence that