Rob is working on renovating his condo when his life is turned
upside down. One fateful day, his contractor hears him collapse from the
other room. When Rob awakens in the hospital, little does he know, his life—
and brain—have changed forever . . . .
Leaving La-La Land is the astounding memoir of a man afflicted by a rare brain
condition known as encephalopathy. Over the course of his three-month
hospital stay, doctors speculate all kinds of hypotheses for what Rob might
be dealing with, which shows itself through both psychological and physical
symptoms. Meanwhile Rob, who has lost his sense of who or where or when he is, and his abilities to accomplish even the most basic bodily functions, finds himself afloat on a sea of encephalopathic dreams that try desperately to make sense of his new reality.
Through these remembered dreams, Rob’s hospital experience is half-revealed to him, while the medical staff’s scrupulous note-taking helps fill in the blanks.
Against all expectations, Rob will eventually find himself able to partially
recover. Imaginatively told, at times harrowing, and
always profoundly illuminating, Leaving La-La Land is a story of survival and
perseverance in the face of incredible odds.
Rob is working on renovating his condo when his life is turned
upside down. One fateful day, his contractor hears him collapse from the
other room. When Rob awakens in the hospital, little does he know, his life—
and brain—have changed forever . . . .
Leaving La-La Land is the astounding memoir of a man afflicted by a rare brain
condition known as encephalopathy. Over the course of his three-month
hospital stay, doctors speculate all kinds of hypotheses for what Rob might
be dealing with, which shows itself through both psychological and physical
symptoms. Meanwhile Rob, who has lost his sense of who or where or when he is, and his abilities to accomplish even the most basic bodily functions, finds himself afloat on a sea of encephalopathic dreams that try desperately to make sense of his new reality.
Through these remembered dreams, Rob’s hospital experience is half-revealed to him, while the medical staff’s scrupulous note-taking helps fill in the blanks.
Against all expectations, Rob will eventually find himself able to partially
recover. Imaginatively told, at times harrowing, and
always profoundly illuminating, Leaving La-La Land is a story of survival and
perseverance in the face of incredible odds.
Every day feels like a wrestling match with an elusive, ever-changing foe. It is a relentless fight that leaves me exhausted and gasping for air. Simple tasks are epic battles as I grapple with lost control. My muscles fail to remember their purpose and are too weak to execute even the most basic movements, like sitting upright. I struggle as my body rebels with wild spasms, akin to a fish flopping on dry land. My mind is lost in a turbulent la-la land.
Getting out of bed, dressing, eating, or taking a step feels like navigating a treacherous obstacle course, each movement cautious and slow. Gravity pulls me down harder than ever. I rely on nurse assistance for simple actions like getting dressed. Eating has become a comedy of errors; my trembling hands can’t guide food from the plate to my mouth. Coordinating my movements is futile; my mind and body no longer function properly. All my most basic acts of existence require constant support.
Meanwhile, my vision mirrors the chaos within. My eyes dart uncontrollably, and I struggle to focus on anything for more than a fleeting moment. Faces blur into indistinguishable shapes, and the world appears as a flickering filmstrip, with each image appearing then vanishing as quickly as it’s recognized.
Then come the hallucinations, adding another layer to my la-la land. Not only is my vision impaired—I can’t even trust what I see. My perceptions diverge from reality, transporting me from my office to a military ship, then a small town, and even jail—experiences that exist only in my damaged mind, but which feel very real. Fact has become fiction, and fiction appears to be fact.
A thick fog shrouds my thoughts and obscures my senses. I grapple with the whys and hows of my existence, struggling to distinguish one moment, day, or place from another. Memories slip through my fingers like sand. Even the most basic thoughts and interactions fade from memory within minutes, leaving me empty, uncertain, and disconnected.
No one understands me, and I don’t understand them. I can’t follow simple directions, like to touch my nose. Communication becomes a Herculean task as my words tumble out incoherently, barely audible and often unintelligible. Mumbling is my norm.
Doctors are confused, grappling with a diagnosis. Is it withdrawal, brain damage, Parkinson’s, or maybe Alzheimer’s? Speculations run wild, as symptoms suggest a large spectrum of diseases. Without a diagnosis, treatments are merely a prayer for some indication of recovery.
Restraints constantly confine me to my bed. I’m watched closely by medical staff and tethered to alarms to inform them of my movements. I’m a prisoner in the hospital and within my own body, just a silent observer of the unfolding drama around me. But my confused self wants to escape. Against all the efforts of the medical staff, I wander aimlessly and break the rules. I am a lost soul.
~~~
This isn’t a firsthand account of events but a patchwork of hospital records and accounts from family members. It paints a picture of my three-month unconscious existence, where reality and illusion blurred into one, and I drifted through the world weak, helpless, and confused. This story describes the beginning of the end of the old me.
What This Book Is About
This book tells the story of my journey with encephalopathy—an umbrella term encompassing brain diseases, damage, or malfunctions that manifest both physically and mentally. My behaviour might have appeared erratic, irrational, and disturbing to onlookers during this journey. In Psychology Today, clinical psychologist Ryan Howes defines insanity as “a mental illness of such severity that a person can’t distinguish fantasy from reality, conduct affairs due to psychosis, or control impulsive behaviour.” On my journey, I showed signs of insanity.
There’s a parallel between encephalopathy and a split personality. Similar to the abrupt shift in a person’s demeanour in the latter case, encephalopathy disrupted the regular flow of my thoughts and behaviours, thrusting me into a realm of unpredictability. At one moment, clarity reigned, grounding me in the familiar territory of lucid thoughts and deliberate actions—the essence of my previous self. Then, without warning, the tide turned, and the encephalopathic state emerged, enveloping my mind in a dense fog of confusion and hallucinations. Encephalopathy split my brain—one part aware, living in the real world, emotionless, eating, talking, and moving, but unconscious, unable to create memory—the other part unaware, absent from the real world, but conscious, living in an emotional and unresponsive state, but able to make memories. I become several personalities. Thoughts became entangled and obscured by the murky depths of my cognitive disarray. It was as if I was lost, grappling to find solid ground amidst my erratic thoughts and behaviour.
Encephalopathy is a condition with outcomes ranging from death at its worst to partial recovery at its best. While I count myself fortunate to have partially recovered, the impact of encephalopathy on my daily life persists. More than a mere physical ailment, it delves into the depths of my psyche, prompting me to reflect on the essence of my identity and existence.
“I’m not one and simple, but complex and many.”
— Virginia Woolf
There are four personas underlying this book; they emerged during my tumultuous encephalopathic journey. Each character embodies different aspects of my being and my encephalopathic mind, recounting tales of struggle, resilience, and partial recovery.
Firstly, there is my pre-encephalopathy persona, the cornerstone of my life for sixty years. I embodied ambition and drive, yet maintained a calm and collected demeanour, preferring to stay in the background. Educated, experienced, and fiercely independent, I navigated life’s complexities with determination. Despite working with people, I found solace in solitude. I channelled my energies into personal pursuits like renovating my homes. However, beneath this exterior lay whispers of impending health challenges—harbingers of the storm ahead.
Then, there’s my hospital persona, who is unaware but conscious. I’m a shadowy figure in this story, shrouded by the veil of illness, confusion, and uncertainty. I’m shadowy because I remember very little of this persona, and this persona carries all my lost memories. My knowledge of myself during this time comes from what others have written or told me. Emotionally distant yet strangely calm, I navigated the sterile corridors of the hospital in a haze. Nurses noted my expressionless demeanour and bouts of confusion, which were signs of turmoil. My family saw a confused and disabled persona, but they sometimes caught glimpses of the person they once knew and loved. At times, I appeared stable and composed to the outside world, but these appearances were deceiving. A storm was raging inside me, leaving my mind in a labyrinth of twisted thoughts and fragmented memories, and my body in disarray.
Then there’s the persona that exists during my encephalopathic dreams (what I call e-dreams). During this time, I live in the unconscious dream world but am somehow aware of the real-world events around me. I’m the most emotional and colourful then, reflecting the inner turmoil that threatens to consume me. I embody the essence of vulnerability and resilience while struggling with relationships, health issues, and an ever-changing world. A risk-taker, I navigate challenges and the murky waters of existence with a sense of urgency, seeking acceptance and belonging in a world I often find alien and indifferent. In my delirium, I try to communicate with the outside world while I search to understand the strange world inside me.
Finally, the post-hospital persona is the one writing this book. It’s who I am today. Unlike the other personas, I stand on the edge of transformation, ready to face my many new challenges. I find comfort in knowing every trial and tribulation I’ve experienced has brought me one step closer to recovery, self-discovery, and a return to independence.
This book is an account of the evolution and demise of my previous self and transitional personas, resulting in who I am today. It allows me to say goodbye to my earlier personas.
This almost unimaginable account of the experience of disconnect between the mind’s cognitive abilities and the physical body’s basic functioning is a raw, detailed exposition of vulnerability between the author’s experience and the reader that brings awareness about the complexities of their interworkings.
It embodies what it means to be human in deciphering the world around us, memories, and in distinguishing between real and imaginative, fact, and fiction that is described as the line of sanity. The delineating of the recovery experience broken into four distinct characters illustrates how unique these phases are that they are not experienced as a single person in which progressive versions are the demise of a previous self is fascinating.
The author tackles the difficult stages of the prognosis from that which lacks optimism in the medical record, helplessness when bed-ridden, needing assistance with basic feeding, incontinence, and disorientation to marked differences whereby the physical recovery is not experienced at the same rate as the cognitive processes such as the verbal, emotional, expressive, and interests is insightful. A fragmented view of the whole person. The recognition of new baselines that further discourage him about his progress and acknowledgement over his persistent nature that he attributes to stubbornness in trying to do more than he can shows the frustration over any attempted strides.
The interwoven memories that read like a narrative of his life living with a family overseas alluding to clandestine, professional, and military affairs is believable - vivid and detailed, but when he notes that he did not have a family living in Japan, it blurs the lines between fact, fiction and narration that is as unreliable to the reader in not knowing how to interpret it any better than the protagonist. Distorted fragments of memories, hallucinations, or attempts at confabulation - all unclear.
The midpoint at which the diagnosis is confirmed as an explanation to the havoc, as he describes that took over his body is somewhat of a relief from the extensive list of conditions, uncertainty, and ongoing testing he has undergone despite its severity.
The struggle he describes in succombing to the treatment and loss of freedom he equates with assisted living is empathetic and leads to greater understandings about these topics that are often buried within families navigating the difficult decisions. While he may have attributed earlier determination to stubborness, his unrelenting process of self-actualization, the writing that brings clarity to his thoughts, and the goal-directed approach to his recovery is admirable. He is the kind of patient that practitioners and those inspired by his narrative cheer his marked progress in the short months of this journey, and provides hope for improving the quality of life as he continues to progress. Despite the severity of confounding diagnoses, he paints a vision of, 'what if' in terms of possibilities for the remaining years of his life expectancy. It's something to think about after reaching the end as time is finite for everyone even when facing limiting circumstances.