Introducing 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 they 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.
Harvard Class of 2000
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-paced 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.
With friends and loved ones on my 40th birthday
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 4 inches wide by 5 inches long by 3 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. For many years, I had been wanting to write – yet delaying in writing – a second book about my life and what I had learned in it. It was a plan I had, but not a plan I was, in actuality, implementing. “I have plenty of time to write another book,” I would tell myself, without properly evaluating how precious or unpredictable a resource time, in fact, is.
Fear and hope exist side-by-side, one almost irrelevant without the presence of the other. 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 in a particularly fragile state, but also because there were so many things I felt I hadn’t done and was at risk of not ever being able to do: writing a second book not least among them. 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 tries to obscure its own nemesis – its own functional opposite – hope. Speaking from the vantage point of someone who has lived for 30 years with paralysis, I can say that fear is paralyzing. Fear is the shroud that conceals possibility. Fear is the antithesis of, but also the groundwork for, 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. It took some self-analysis and encouragement to understand that the fear I had about my life could and should be the maternity ward for something much more powerful. 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 Impetus behind my second book. 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 understandings 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 with you.
I look forward to telling you more about LOOK BOTH WAYS in the coming weeks and months. Until then, I send you my love and gratitude.