Chapter Three

Kansas City’s “Wheel It Forward”

         When you think about it, life is an experience of individual narratives that live and breathe in collective spaces. Sometimes those spaces can be dark, violent, and hopeless. But others offer the light of grace, peace, and human potential. Sometimes we can choose the spaces to inhabit but many times we can’t. The spaces choose us. Some might call that fate, while others see it as pure luck. Maybe it’s a bit of both. Regardless, the critical question is whether you, with the help of others, can push yourself through the dark spaces you might find yourself in and find the door to the spaces that celebrate life.

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I didn’t choose to inhabit the space of the ICU. I didn’t choose to be part of the ICU’s narrative. Not as a patient, at least. But there I was, the puzzle that had to be solved within a narrative that, as I’ve said, includes a range of characters, each playing their roles, each bringing their own narratives to the ICU.

The minutes turned into days for the puzzle, the days into weeks, and the weeks into months in the ICU. Every day was a ritual of what I’ve called “micro-hope.” Not the grand plans of a life narrative, but the hope of just getting through the day, hoping that on that day there would be some sign of the reversal of my paralysis as the myelin sheath would start to repair itself and allow my brain to communicate with the rest of my body, starting at the top. (GBS starts at the extremities and moves up; when movement returns, it comes back in the opposite direction.) I didn’t ask for much. A barely perceptible movement of a frozen eyelid would’ve made me deliriously happy. But on that day my micro-hopes would be dashed. The ritual would resume the next day, and the next, and the next, and the next.

Just about every day, Doctor Wisen, my neurologist and a major character in the ICU narrative, came to my bedside to inspect his puzzle, almost like a coroner inspects his corpse. Whether by voice or visage, he showed little emotion, as if doing so would jeopardize his much-prized “I’m-a-genius-neurologist-who-is-dour-by-nature” bedside manner. But what was his subtext, what was beneath that man in the white lab coat? Why was he so inscrutable, so aloof?

Maybe this is why, at least in part: Mark Wisen was born in 1934 in Lublin, Poland. A Jew, born in Poland, in 1934. You know where this is going, right? He and his mother survived the Holocaust and emigrated to South Bend, Indiana in 1950. South Bend? Why there? Because one Frederick Baer, Esq. lived there. He was Mark’s mother’s cousin who became a Nuremberg prosecutor and made it his mission to find relatives who survived the Shoah.

Studies have found that Holocaust survivors are remarkably resilient and lead pretty stable and successful lives. Mark became an accomplished doctor and enjoyed a loving marriage. But the horrific trauma suffered by survivors lurks deep within their psyches. They’re pretty good at keeping it there. But sometimes trauma surfaces violently and causes havoc with devastating consequences. I know this. Dr. Wisen knew this. How do we cope? In many ways. Including being inscrutable, aloof.

And there he was, a Holocaust survivor born Lublin, staring down at a young man born in Chicago, in the ICU of Bloomington Hospital, being tortured day after day. The most he could do was monitor the dosages of steroids, and poke and prod to see if any part of his puzzle would react. Nothing.

That I was being tortured is not an overstatement. Think about it. Counting every second, every moment, every hour, every night, and every day. Being totally paralyzed, I mean totally paralyzed, blind because your eyelids are taped shut to protect the corneas. . . But here’s what made the torture exquisite: I was totally aware of everything and I felt everything. I was aware of the tangle of tubes I was hooked up to. I was aware of the constant beeping of the heart monitor. I was aware of the endless needles being stuck into me to draw blood. The worst was checking my “blood gas,” or the arterial blood gas draw to see, in essence, how well my lungs were functioning in terms of oxygen and carbon dioxide. I dreaded the nurse who came into my room and uttered those words because I knew she would stick a needle deep into my wrist to find the radial artery. It was excruciatingly painful, especially when the nurse couldn’t find the artery and would probe my wrist relentlessly.  To the onlooker, I was a body at peace, the peace of complete paralysis. But inside I was screaming at the top of my lungs.

And, of course, I was aware of the ventilator that unfailingly kept pumping my lifeless lungs with oxygen. It became my friend, in a weird way, the rhythmic sound of the pump assuring me that I would not suffocate. But there were times when, because of fluid buildup in my lungs, I didn’t feel like my friend was giving me enough of what I needed from it. I needed more oxygen, immediately, I felt. Suddenly, my friend had become my executioner, putting me to death as the heart monitor’s beeps ticked away my last moments on this earth. “Please, I want to live! Please! Someone! Help me!” When my eyelids weren’t taped down, my eyes would bulge and move wildly in my sockets. I recall on one occasion a nurse happened to be by my bedside when I was in the throes of suffocation. She said pathetically as she rubbed my arm, “Oh, honey, what’s the matter?” “I’m fucking dying, you idiot! Get your hand off of me and do something!” “Poor thing. . .” “Fuck you!”

But the truth of it is that the nurses worked as a team to keep me alive. They were there 24/7 working in the trenches of the ICU narrative to do everything possible to help me survive, constantly assuring me that survival was worth it. They did everything to preserve my body while I was helpless. To prevent bed sores and fluid buildup in my lungs, every four hours they came into my room and turned my body, from laying on my left side, to on my back, then on my right. They fed me through my g-tube, emptied and measured my urine bag, emptied my bedpan, gave me my medications, and kept me clean: sponge baths, so humiliating—I had no “private parts.” And periodically throughout the day, a nurse would go through a range of motion routine, moving my arms and legs around in various angles to prevent my body from freezing up like rigor mortis. A seemingly dead body, but alive inside. Despite having to cope with trauma in their lives, they clocked in every day, came into my room, and told me I wouldn’t die, not on their watch.