A nightmarish stay in a surgical ICU permanently changed me
I was facing surgery recovery, medication withdrawal, and heartbreak all at once
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Note: This column describes the author’s own experiences with Xyrem (sodium oxybate). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
In 2010, I almost died from a cantaloupe-sized hepatocellular adenoma wrapped around my portal veins. People hear the word “benign” and assume harmless, but there was nothing harmless about a massive liver tumor strangling critical blood vessels deep inside my body.
By the time I was admitted into the surgical intensive care unit (ICU) at Methodist Dallas Medical Center, my world was already unraveling physically and emotionally. My liver surgeon and his fellows, residents, and medical students spoke carefully around me, their expressions saying more than their words ever could. I knew enough to understand the danger. A tumor that large, wrapped around the portal veins, could rupture, hemorrhage, or destroy liver function. Surgery itself carried terrifying risks.
The day of surgery
I remember lying in that ICU bed, realizing my body no longer felt like it belonged to me.
My first liver resection was brutal, but what happened afterward became its own nightmare. During my hospitalization, I was suddenly taken off Xyrem (sodium oxybate) and my SSRI medications, as oxybates and SSRIs can interact with opioid painkillers. My nervous system spiraled almost immediately into relentless episodes of status cataplecticus, a rare manifestation of narcolepsy.
Most people misunderstand cataplexy. They imagine someone briefly going weak after laughing. Status cataplecticus is entirely different. It is wave after wave of paralysis crashing over your body with barely enough recovery time in between to catch your breath mentally before another attack steals control again.
I would collapse into complete paralysis repeatedly while lying in the ICU. I could hear the monitors beeping. I could hear nurses talking. I could hear footsteps outside my room and family members panicking nearby. But I couldn’t speak or move. Sometimes I couldn’t even force my eyes open.
The scariest part of oxybate and SSRI withdrawal
The most horrifying part was remaining mentally awake while appearing unconscious.
Inside my mind, I was screaming, “I’m still here!” But status cataplecticus from instant oxybate withdrawal took over, and outwardly, my body looked lifeless and unresponsive. My jaw wouldn’t cooperate. My muscles vanished beneath me. Every time I thought an episode was ending, another attack would hit before I fully recovered. It felt like being trapped alive inside my own body while the world moved around me without me.
The ICU itself intensified the trauma. Surgical ICUs never truly sleep. There are alarms constantly sounding, blood pressure cuffs tightening around your arm every hour, fluorescent lights glowing at all times, IV pumps clicking endlessly, cold air, and the exhaustion of never feeling fully safe or comfortable. Time stopped feeling real there. Day and night blurred together into survival.
At the same time, my first marriage was falling apart. That emotional devastation collided with everything else happening physically. I was critically ill, neurologically unstable from sudden medication withdrawal, recovering from major liver surgery, and simultaneously grieving the collapse of the life I thought I had built. There is a unique loneliness in realizing that while your body is fighting to survive, your emotional foundation is also crumbling beneath you.
A life painfully exposed
I remember feeling painfully exposed. My body had been cut open. My future felt uncertain. I was trapped inside repeated cataplexy attacks while trying to process heartbreak I barely had the emotional strength to face.
There were moments when I genuinely did not know whether I would survive any of it.
I was terrified not only of dying, but also of disappearing while still alive — awake mentally, yet unable to communicate from inside paralysis. Narcolepsy with cataplexy is so misunderstood that I feared people would mistake my attacks for sedation, psychological instability, or unconsciousness. Inside, I desperately kept trying to hold on to reality while my nervous system betrayed me over and over again.
Looking back now, what remains with me most is the fragmentation of that experience. Every part of my life seemed to collapse simultaneously: my health, my stability, my first marriage, my sense of safety inside my own body. Yet somehow, I survived.
Surviving that ICU stay permanently changed me. It stripped away superficiality and forced me to understand how invisible suffering can truly be. It taught me that behind every medical diagnosis is a human being carrying fear, grief, humiliation, exhaustion, and hope all at once.
People now know me as a writer, advocate, mother, singer-songwriter, and the Sleepy American superhero persona. But those versions of me were forged during some of the darkest moments of my life — moments spent in a surgical ICU, wondering whether I would ever leave the hospital alive.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
Susie Nesmith
As Rachel’s mother, i am so proud of her strength, courage and perseverance. This article provides a window into the many layers she endured and recovered through many hardships during her medical and personal journey through this difficult time in her young life, Her greatest joy now is helping others through their personal journeys.