What inspired you to write Look Both Ways?

2020 was an exceedingly difficult year for most of us. Around the world, people faced a threat unlike any other in our lifetimes, bringing to light our vulnerability as individuals and as societies. It has been a frightening time. Understanding our inherent frailty and being at the mercy of forces that are seemingly outside of our control are disorienting and unsettling. 2020 was no different for me, yet last year was only the most recent in a series of years that not only tested my health but also tested my resilience.

For five years now, I have been battling a series of medical challenges that have put my health – indeed, my life – in grave jeopardy. Several years ago, I began to develop a pressure ulcer behind my left leg. For people with paralysis, the severity of pressure ulcers far exceeds the relative benignity their name might imply – pressure ulcers are the visible and physical manifestation of death to tissue, often created by ongoing lack of blood flow in a particular part of the body, cellular damage due to some kind of trauma, or nutritional deficiencies like insufficient protein intake. What happens is that, after experiencing any one of those causes, cells and ultimately tissue in the body begin to die. When the tissue dies, a veritable hole starts to develop right before your eyes, and it doesn’t stop until it is caught and treated. Far too often, pressure ulcers will have been developing for days, weeks, or even months before they present themselves on the surface, and by then, they may have already grown so large and so deep that day expose the bone beneath them. For people with paralysis, and others whose life circumstances may have limited their mobility, pressure ulcers are stealthy assassins, leaving all degrees of devastation in their path.

I have battled pressure ulcers in the past, the most significant of which was when I was in my junior and senior years of college, when I developed one on my coccyx bone. This is a common bodily address for the development of a pressure ulcer for people who use wheelchairs, given that they are sitting on that spot for so many hours during the course of a day. The pressure ulcer that I was battling in college was significant but not nearly as critical as they can sometimes become. Yet, despite that, it threatened my ability to complete my four years at Harvard. Heading into my senior year, I was advised that maybe I should take a leave of absence from the otherwise fast-based life that characterizes college years – when the hours of any given day are stretched to their reasonable limits – and, instead, spend some time home, in bed, recuperating. That idea was devastating but, unless I could craft another plan, likely quite sensible. But, with some creativity and collaboration from physicians at Harvard, my parents and I were able to devise a strategy that allowed me to return to Cambridge for my senior year. After well over a year of treatment, the pressure ulcer I had in college was able to heal, though even to this day it remains a vulnerability for me.

After that potentially deadly and life-altering scare, I was fortunate to not face another pressure ulcer for nearly 20 years. But, several years ago, right before my 40th birthday, I began to develop a red spot on my left leg. At first, it seemed fairly innocuous – something that would go away with just a bit of care and time. It didn’t take long, though, to realize that what we had thought was a relatively insignificant issue was, in fact, much, much worse.

Just after my 40th birthday, I was diagnosed with a stage-four pressure ulcer on my left ischium. I was told that the best, and probably only, way to treat the pressure ulcer was through a surgical debridement: a process that essentially allows a surgeon to delicately remove the necrotic – dead – tissue and allow healthier tissue to grow in its place. This was not the worst pressure ulcer the doctor had seen, he said, but it was one of the worst. It could be treated and it could heal but it would take time and effort and patience.

Early the following January, I had surgery to treat the pressure ulcer I was battling. At that point, it was 3 inches wide by 5 inches long by 4 inches deep, essentially the size of a man’s fist, and had traveled all the way to my pelvic bone. The pressure ulcer was ghastly enough on its own but, in addition, it was riddled with infection of the most pernicious kind: MRSA, Pseudomonas, staph infection, Proteus, all of the terrifying and undesirable infections that make it their business to threaten people’s lives. The infections were so bad that they had crept into my bones, a condition called osteomyelitis, which is equally as life-threatening as the ulcer, itself. It was terrifying. I felt vulnerable and powerless. It forced me to undergo round after round of IV antibiotics – some of the most aggressive and exotic antibiotics that exist – for months in an effort to heal the ulcer. It forced me to use a “Wound Vac”, a device that inserts a sponge and tube into the ulcer, itself, and creates negative pressure to increase blood flow and promote tissue regrowth. It forced me to reevaluate aspects of my daily life – how much time I could be in my wheelchair doing work, how far I could travel from my home safely, how much fat and protein I would have to consume to optimize my ability to heal. It also forced me reevaluate how I was living my life, what contributions I wanted to make in the world, and how much time I had to make them.

Like at so many other perilous points in my life, the moment when days seemed darkest and most frightening served as the impetus to do. To act. To share. I was afraid, not simply because I knew my life was a particularly fragile state, but also there were so many things I felt I had done and was at risk of not ever being able to do. I found myself trying to balance or reconcile these two fears, the first of which I had no control over and the second of which, I thought, might be beyond my ability to translate into purpose. But, I had been in this room before and had become all too familiar with its secrets. I had seen how the times of struggle in our lives leave us feeling impotent in all aspects of it rather than simply incapacitated in a few. It is a devious game; a form of mental trickery and subterfuge that simultaneously leads us to amplify the effect of the darkness in our lives and minimize the possibility in it. Fear is an insidious, shape shifting adversary for all of us, and it obscures its own nemesis – its own functional opposite – hope. I had, at that time, forgotten the primacy of that lesson, despite all of the times in my life that I had to rely on it. It took some self-reflection, reorientation, and external motivation to be reminded that the circumstances I was facing were immensely challenging but not wholly incapacitating. I had something to say and I needed to say it. I was feeling the immediacy of time and I could no longer waste it. The story had already been lived, I just had to restate it. That understanding was the origin of LOOK BOTH WAYS.

And, now, the words have been said, the opportunity has been taken, the story and hard-earned lessons have been framed in language that ties my idiosyncratic life to the threads that join all of our lives together. I put every bit of my heart and soul, blood, sweat, and tears into the words of LOOK BOTH WAYS. This book is part autobiography, as stories about my life provide the framework, part sociological analysis, as my life – just as everyone else’s – exists within a social framework that both shapes our thinking and ought to demand us to do better, and part lessons learned, as the significance of any experience can only reach its true value when shared with others. This is the triad that serves as the structure of LOOK BOTH WAYS: my life, the context in which it sits, and the lessons I have learned from it. This is the fabric of intersecting threads that represents years worth of introspection and examination of the struggles and accomplishments that have come to define my existence. It is this triad, and the aspects of who I am that I thought might be indescribable but have now put into words, and am so eager to share.

How does LOOK BOTH WAYS differ from your first book, Miracles Happen?

Almost 20 years ago, my family and I wrote our book, Miracles Happen: One Mother, One Daughter, One Journey, which chronicled the events that took place in our lives starting on the pivotal day of my accident – September 4, 1990 – and progressing through my graduation from Harvard nearly 10 years later. Miracles Happen was more than simply an autobiographical account of chronological events, though there were, even over 20 years ago, many more isolated life events that my family had experienced than could fill several books. Miracles Happen was an articulation of the struggles, understandings, and relationships that were woven into our lives as we learned to live with quadriplegia as a central characteristic of them. Miracles Happen is written in a narrative, informal, almost conversational style, driven by vignettes to move the story forward. It is a veritable series of snapshots of our lives at different places and times, and, more importantly, an important snapshot of my understanding of my identity 20 years ago. It is truth in all the ways I understand truth, yet there is a layered aspect of truth that grows with new revelations and new frameworks from which to see it.

When I wrote Miracles Happen, which became the basis of the movie, The Brooke Ellison Story, I was an entirely different person than I am today, and the difference between who I was then and who I am now is not simply a function of time or age. In fact, the duration of these past 20+ years is perhaps the least significant component of my evolution as a person from then until now.

20 years ago, I could not have written LOOK BOTH WAYS. 20 years ago, even though I had lived 10 years with quadriplegia, I still didn’t know what it meant to be disabled or how to understand myself as a woman with a disability. It took time. It took time for me to understand how disability becomes incorporated into someone’s identity and that this frames how you not only engage with the world but also how you see the world. Until a shift in my thinking took place – until I could see myself as a woman with a disability who is stronger, braver, more creative, more compassionate, and more badass as a result of it – there was no way that I could properly articulate what the true story of my life has been. That was a process. That was a process that took time, self-reflection, and an abject rejection of all social messaging that taught me to internalize ideas that were fundamentally flawed. I had to deconstruct and reconstruct my understanding of myself before I felt empowered enough to properly articulate my place in the world and how to change it. I regret the length of time it took, but I am grateful for the outcome it produced.

I didn’t need to tell another story about the events of my life but I needed to write LOOK BOTH WAYS. The two are not necessarily synonymous. LOOK BOTH WAYS is an account of events in my life, for sure, but these only provide the framework upon which so many valuable, deep understandings about myself and about life have been developed. Those lessons and understandings are what make LOOK BOTH WAYS particularly significant to me because, in honesty, they did not come about easily and were the products of years of tears and months of hard introspection. And I am a better person for all of them.

Is your second book a continuation of your first?

LOOK BOTH WAYS is 11 chapters. 11 honest, difficult, liberating, and vulnerable chapters which forced me to put to words not only ideas I have never discussed but also ideas I have never been brave enough to think about. Writing LOOK BOTH WAYS was exhausting but in the best, most satisfying, and most cathartic way. In my bedroom, with the lights off and sometimes even with my eyes closed, I spent every day of the summer of 2019 – from early in the morning until the late summer sun set – bearing my soul in word form. There were many times when I thought I was perhaps being too honest, other times when I thought I wasn’t being honest enough, and many more times when I was afraid about what I would find inside my head and my heart if I looked too deeply into them. But, it was through this process that I drew strength and self-awareness. It was through the process of better getting to know myself and claiming stronger ownership over the narrative of my life that my own sense of resilience was less amorphous and more anchored to who I am. That was a gift that I never anticipated.

LOOK BOTH WAYS is 11 chapters. 11 powerful chapters, I think. These are the 11 chapters:

The Introduction

I began LOOK BOTH WAYS with a brief introduction about the purpose of the book, the motivation behind it, and where I expect it will take readers as they read.

Chapter 1: Origins

In this chapter, I discuss the events and circumstances I faced as a child, having undergone a paralyzing accident, living in a hospital for 9 months, and learning to understand what disability meant to my identity.

Chapter 2: Mechanics

In this chapter, I answer many of the logistical questions that are often asked of me regarding what it’s like to live with paralysis. I discuss how I drive a wheelchair. I discuss what it feels like to be paralyzed. I describe what it feels like to breathe through a ventilator. And, I talk, at length, about the structures of society that have yet to include people with disabilities.

Chapter 3: The Family of the Disabled Child

Chapter 3 is a highly personal account of how families of children and people with disabilities live their lives. In this chapter, I include a significant amount of sociological information about the lives and employment statuses that people with disabilities face. I place this information in an overall discussion of my life as a disabled family member and what that has meant to me.

Chapter 4: Invisibility and Infantilization

I am proud of who I am, and of all the aspects of my identity. Yet, there have been many times when the opinions, actions, and biases of others have reflected an antiquated and inaccurate interpretation of who people with disabilities are, what their lives are like, and what they are very much capable of doing. I see it every day and it is a characteristic of society that I have worked to change, both through word and through deed. In Chapter 4, I discuss the ways in which people with disabilities are marginalized and treated as less-than-valuable in society. People with disabilities face multiplicative levels of bigotry and these have had significant effects on how they participate, or are unable to participate, in society.

Chapter 5: Both Ways

Chapter 5 is designed to be a transitional chapter in LOOK BOTH WAYS. In this chapter, I translate the focus from disability as it is typically understood to disability as a manifestation of empowerment and strength, a valuable and critical part of both identity and society.

Chapter 6: I Love

I dream about being in love – madly in love – all the time. I am not of a mind that I need someone else to complete the person I am, but, when it comes to love, I think about all of the ways I would be absolutely stellar at it: what I have to offer another person, what kind of future I would want to create, how I would put my entire heart and soul into it. In chapter 6, I discuss my experiences with love. I use this chapter to talk about an often uncomfortable subject of disability and sexuality, and how our failure as a society to think about people with disabilities as loving, lovable, and sexual beings has done a disservice to everyone. These are difficult topics to talk about because they are so personal, so intimate, and so often a lens through which we understand ourselves.

Chapter 7: Path Dependence

The shortest distance between two points in our lives is rarely a straight line. Our lives take unexpected turns, putting us on trajectories that we never anticipated and often never wanted to be on. And, these course corrections can be overwhelming. Disorienting. Intimidating. This happens to all of us and it is part of being human. In this chapter, I discuss the vision I had for my life as a child and how this vision got rerouted, given the accident I faced. Chapter 7 is a critical “instruction manual” of sorts about how to build hope and find resilience when life presents us with challenge – any kind of challenge, not just disability.

Chapter 8: Politics and Leadership

I view hope and leadership to be tightly correlated concepts, one the logical continuation of the other. While I don’t understand leadership to be synonymous with politics – in fact, I think that far too often they are antagonistic with one another – sometimes, when done right, politics can reflect the ideals that

effective leadership embodies. Chapter 8 puts a focus on my involvement in politics and how this was fostered by work done in leadership – adaptive leadership, in fact, which is a leadership paradigm that has guided my life and given me the empowerment to tackle societal challenges. This chapter includes a discussion about the lack of representation among people disabilities in political office and why this is one of the last but underexplored facets of diversity and inclusion.

Chapter 9: Stem Cells

I have been an advocate for stem cell research for nearly 2 decades. I view stem cell research to be an avenue of science at its best and most promising: an application of human knowledge to alleviate human suffering and for the benefit of humankind. Working to advance this field has been one of the aspects of my life of which I’m most proud. In chapter 9, I look at disability from a different standpoint: biomedical research and treatment for disease and disability. The idea of “cures” and biomedical research is highly controversial within the disability community, yet there are many people with disabilities – myself, included – who look to biomedical research as a source of hope. In this chapter, I look at the complex debate surrounding stem cells and other forms of biomedical research, and how it has been contextualized from a disability standpoint. This chapter also discusses how my work in this field paved the way for my work in medical ethics.

Chapter 10: The Professor

When I was a child I envisioned myself becoming a dancer. I envisioned my life on stage, dancing in front of theaters of people, because that was what I was used to. That vision was what fit into the construct I had built for my life and was somewhat made sense to me. We take comfort in that which we are used to, but our lives rarely take the course we predict them to. Chapter 10 puts a focus on my life, now, as a professor of medical ethics, teaching future physicians and healthcare professionals at the very institution that saved my life 30 years ago. I live at a highly unique intersection of disability and bioethics, and in this chapter, I discuss some of the events in my life have shaped my work and understanding as a medical ethicist.

Chapter 11: The Lesson

I use the final chapter of the book to summarize some of the biggest lessons I have learned after living 30 years with quadriplegia; after living 30 years with challenge and with hope. Chapter 11 crystallizes the overall message of the book and what I hope readers can take away from it.

This is only the most minimal synopsis of LOOK BOTH WAYS, and I think the text on the pages is interlaced with the struggle I have encountered in my life but, much more so, the hope, gratitude, strength, and love I have found in it.

What do you hope to achieve through the publication of LOOK BOTH WAYS?

LOOK BOTH WAYS is part autobiography, part deep examination of lessons I have learned in my life. LOOK BOTH WAYS touches upon all the most salient parts of who I am and the understandings that my life has brought to me. In many ways, LOOK BOTH WAYS represents the legacy I hope to leave on the world: what it means to encounter gut wrenching challenge but also what it means to accept this challenge and confront it; what it means to live with a physical disability and how we need to reconstruct our interpretation of disability; what it means to not only view life in terms of hope but also to understand hope as a tested and action-oriented idea; how to exercise leadership in meaningful ways and how this can be done from any position in social structure; and how we need to view our lives from all vantage points in order to fully appreciate their beauty.

LOOK BOTH WAYS addresses, in the most intimate and personal ways, all these concepts and lessons. However, I want this book – this piece of who I am – to accompany workshops, presentations, and other engagement strategies through which people can learn to better handle the challenges in their lives and thrive, not despite them but because of them.

What do you believe is the main point or points of Look Both Ways?

In its most essential form, LOOK BOTH WAYS is a book about the multiplicative ways we come to understand ourselves and the identities from which we understand ourselves when we experience difficulty and trauma. When we undergo circumstances of challenge, especially life-altering challenge, we can feel as though all is lost; we can feel as though every part of ourselves is different and nothing is the same. Told through the lens of my life as a child who underwent a catastrophic accident, but learned to not only live but thrive in the wake of it, LOOK BOTH WAYS puts an unabashed focus on the enormous challenge of living with disability, which can be extrapolated to challenge of all kinds, but how we can learn to re-understand ourselves, reinterpret our circumstances, and live extremely meaningful and purposeful lives, nonetheless.

What audience does LOOK BOTH WAYS cater to?

LOOK BOTH WAYS is a memoir that incorporates deep and personal life lessons. This book will find an audience among any nonfiction reader, but especially among those who have experienced challenges in their lives or have struggled with the acceptance of changing circumstances. In the post-Covid 19 world, this audience grows significantly to include just about everyone, as the entire globe has undergone trauma, difficulty, and uncertainty. In addition, though, LOOK BOTH WAYS incorporates a significant amount of theoretical and academic literature, in the fields of sociology, disability studies, hope and resilience, and leadership and negotiation. From this standpoint, LOOK BOTH WAYS is very well suited for students and courses in these academic disciplines.

Does LOOK BOTH WAYS fall discreetly into one literary genre or several? Which ones?

LOOK BOTH WAYS is a memoir, but given the ideas it discusses and messages it conveys, can also be considered a self-help or motivational work of nonfiction.

What is the significance of the cover design?

Chapter 5: Both Ways was written to be the transformational chapter of LOOK BOTH WAYS, in which the focus begins to shift from the challenge and pain associated with disability (or life, generally speaking) to the ways in which we can derive purpose, meaning, and opportunity in it. In Chapter 5, I use my condominium, which sits on the North Shore of Long Island’s East End, as a metaphor for the ways in which we can choose to view our lives: we can choose to look at the expense of lawn in front of us and we can choose to look at the water beyond it, but in order to fully appreciate the beauty, we have to see it from all ways.

The image on the cover of the book is a photograph of the land on which my condominium sits, green grass adjacent to the blue water of the Long Island Sound. However, in a stroke of brilliance by the cover’s designer, Angela Morelli of InfoDesign Labs in Norway, the photograph has been transformed into a stereographic projection, an image transformed into 360°, representing the idea that we need to view our lives from all directions, not just one, in order to truly understand them.