The more we learn to allow others to speak the Word to us, to accept humbly and gratefully even severe reproaches and admonitions, the more free and objective we will be in speaking ourselves.
--Dietrich Bonhoeffer
Father, into Your hands I commit my spirit.
--Luke 23:46
Prologue—The Star Patient
Over the last month, I have undergone the strangest, darkest journey of my entire life. I plan to describe it in all its darkest detail, so I recommend that if there are kids under about 15 or 16 years of age, parents check it out first to decide whether they consider it appropriate reading.
The story begins on Tuesday, July 17. Having experienced critically low blood pressure levels for the previous 2 weeks, I finally collapsed in the elevator on my way up to our condo. At that point, I was taken to Huntington Memorial Hospital, which, unfortunately, our HMO does not cover. The next night, I was transferred to Queen of the Valley in West Covina. Let me say from the beginning that QV has perhaps the best ICU unit I have ever been to—something I attribute especially to the overwhelming care and attention I received from the nurses: RZ, Paula, Sharon, and Leslie.
The doctors, on the other hand, dragged me through hell during my first several days. To begin with, at least half of them were named Dr. Patel, an Indian name, suggesting a way of doing things that I would not understand. Nephrologist Dr. Shah kept telling me to sprinkle salt on my meals (a flavor I’ve honestly come to loathe), since he wanted to elevate my sodium levels. The wonderful oncologist Dr. Klein, whose Bronx roots I immediately identified, took time to explain to me in detail what was happening inside my body, as my abdomen began to fill up with fluids, and my groin swelled to at least 10 times its normal size.
The nurses called me their Star Patient, since it is such a rare treat to receive a patient who can actually communicate with them. I soaked it up. I find that during my first days in ICU I am an abnormally pleasant person, since it really does feel a bit like a retreat from everyday life.
The First Cracks
Within only 2 days, the utter absurdity of my situation began to set in. That morning, I felt equally certain that the ICU had helped me as much as it possibly could and that nobody intended to release me in the near future. Mom & Lynne had flown in for the day, and they & Karla had gone to grab some supper. In their absence, it occurred to me that the story would come full circle when the doctors determined that, although I was now in perfect health, I had become a menace to society and could not be released to the public. I sat for over an hour tuned in to a classical music station cracking up with laughter, like Inspector Dreyfuss at the end of The Pink Panther Strikes Again.
The next day, Dr. Shah came by for his 45 seconds to ask how I was feeling and repeat his daily admonition to sprinkle salt on my food. To describe my current condition, I used a couple of 4-letter words, and blamed it on him for giving me medical advice that utterly ignored my history and keeping me in the hospital after he and the others should have sent me home. (Karla later assured me that this was a terrible strategy for anyone hoping to go home in the near future.) I felt certain that staying in the hospital at this point could only make me worse, restraining my body from the kind of free-range exercise needed if it were to continue healing itself.
That night, I slipped into an infantile state into which I would pull out only sporadically for the next couple of days. Sharon, the nurse, came to check on me, and I was bawling, saying that I couldn’t let Karla see me like this, and asking whether I would go to hell for what I said to Dr. Shah. Later in the night, well past midnight, the same older man smelling of alcohol as every night came to empty my garbage. I asked him as well, “Do you think I’ll go to hell for using dirty words?”
“Uh, no sir,” he said, “I don’t think so.”
I continued, “Every night you come in here to clean out my garbage. You’ve been such a good friend to me.”
“Just doin’ my job, sir.”
Descent into Hell
Monday night, I was at last transferred out from ICU and into a hospital unit. On the way over, I inexplicably blacked out. When I came to early Tuesday morning, I found myself in a primitive looking room with a Catholic Crucifix hanging on the wall and 2 young Latino women bringing me ice water, one of them praising me for reading the Bible and reminding me that God always answers when we pray. I had been transported back into a 19th-century convent, into a Graham Greene novel. The myth was destroyed moments later, when the door swung open to the hallway and yanked me back into a 21st century facility.
Later that morning, the transporters took me into the lab where Dr. Molinet was to administer the paracentesis. The nurse soon informed me that there would be no such procedure that day, since the meds I had received made me an unsafe candidate. She walked away, and I sat, trapped in the dark, for the next 45 minutes. They stuck me right under the Patient’s Bill of Rights document, so that I could read their guarantees for patient participation making decisions, respectful treatment, and speedy recovery, all violated. They made me their victim.
The next morning, I woke up and went into the restroom, as I did every morning. That was the last thing I remember. When I came to at 11:30, I only knew that I had no memory whatsoever of what had transpired.
Apparently, the darkest corner of my id had broken off and taken over the rest of my person. (I knew this only because, somewhere in the course of those 4 hours, I had pulled the surgically implanted PICC-line out from my arm.) I remained lucid, if a bit confused, for half an hour or so, and then slipped back again for the afternoon.
I retain dreamlike images of what I said and did during that time. I remember thinking of myself as a philosopher, condemned to find out “why” when there is no “why,” and repeating incessantly “I don’t mean cause anyone any trouble, but I do.” I remember a string of people rotating past my bed—my nurse, my CPN, the Blond Person Whom I Want to Make Happy—and each time she entered the room I said, “I don’t mean to make you sad, but I do.”
By this time, Deb Flagg had shown up, so the 3 of us went outside to eat supper. Karla tells me that I didn’t eat much, but spent the entire time repeating in a loud Borat imitation, “I don’t mean to cause any trouble, but I do!” Soon Murray came, more amused than frightened by my display of insanity. As the 4 of us visited outside, Karla commented on the swelling in my legs. I reportedly responded, in the same Borat voice, “But one leg…,” as I reached toward my grotesquely swollen groin and began to pull off my sheet. The Blond Person Whom I Want to Make Happy persuaded me not to do this.
By nightfall, I had returned to my normal self enough to listen to the horrid stories of what had transpired during the day.
I think I remained fairly stable throughout most of the next day, Thursday, until Eric, Todd and his son Nick showed up late in the afternoon. At about that time, I descended again, this time without the Borat routine, into someone whose hope lay in the promise that one day we would all be taken to Yosemite. I lay in my bed asking to walk down the hallway whose walls were covered with pictures of Yosemite, but barred because the nurses were pumping medications into my arm. When at last they released me, I walked slowly, tracing the outline of the mountain depicted in each picture, and proceeded toward a stairwell from which one could look out a window toward the mountain range.
“Do you know the names of those mountains?” asked Todd, as he stood behind me, holding me steady. I didn’t—some foretaste of Yosemite, I guessed, but not the real thing. Not yet.
In my imagination, family members had been dubbed “in-laws.” I had around me my mother-in-law, my Todd-in-law, my Nick-in-law, and my Eric-in-law. In-laws were the people you could touch, hug, and kiss. You could even remove their caps and touch the tops of their heads. To lose one’s mother-in-law meant to begin to die, so when Todd, Nick, Eric & I went to the elevator to see Eric off, and Mom stayed back at the door to my room as it receded into the distance, I knew that I would die soon and go to Yosemite. I would have liked Eric to join me there someday, but he didn’t believe in Yosemite.
As Eric stepped onto the elevator, someone mentioned the name of our niece Kelly. It occurred to me that Kelly should have been with us. The fact that she wasn’t suggested that she was already waiting for us at Yosemite.
I don’t think Eric believes in Kelly, either.
Once we had returned to my room, family members all left, but I had more to do. At some point, I got up from my bed, walked out of my room, and wandered down the hall toward the stairs and elevators. The nurses caught up with me in time to prevent me from entering, but, as it turns out, the madman has about 10 times the strength of my normal self. It required 3 nurses and 2 security guards to pull me back from the stairs and force me into my bed, where the awesome sense of liberation I experienced as I wandered the halls and lingered around the elevator and stairway gave way to the realization that I was a crippled oddity, bound to medications by people I neither knew nor trusted.
Once in bed, the madman understood the whole system. The nurses had, at some point in history, gained domination over the rest of us. Now they sat in the halls in their privileged seats behind their computer screens, as people in suits walked freely about and entered the elevator whenever they wished, and we patients in our beds lay hooked up to their medications, powerless against their experiments. Atop the whole sinister system sat the unseen evil force whose name appeared on the dry erase board facing my bed: Dr. Patel.
Home at Last
I remained sane all day Friday, my birthday, and was sent home on Saturday. I had assumed that, having left the hospital, I would experience no more madman episodes. All the visual cues that sent me over the edge were there at the hospital—the dry erase board with the names of my captors, the hallway with exit signs that led to nowhere. But I was mistaken. For several days after my release, the madman continued to resurface. The elevated ammonia level on my brain appears to be the main culprit, and I think we’re getting on top of that. I haven’t had an episode now for about 10 days.
I’ve learned a lot through all this—2 things in particular. One concerns both the importance and the difficulty of Bonhoeffer’s admonition to receive the words that God gives to others. I’ve become quite dependent upon (and resistant to) the instructions and boundaries set up for me by Karla and my mother. I don’t have to tell you how passionately my pride fights back against these invasions of my independence, but this is what it means to say that my life does not belong to myself.
The other concerns the people who keep us tied to the real world. I encountered the madman during a visit to my oncologist, and all the way home I could not convince myself that a real world existed outside the dreamscape of my car. Karla & Mom both assured me that it did, but how good are the assurances of characters within one’s own fantasy? What finally pulled me back were names and faces of people outside the car, people whom I could not now see—Lynne, Todd & Eric, Dad & Carol, Don, Aunt Doris; the Eckardts, the Roes, the Needs & the Lanes from up north; Glenn & Shanti, Deb & Murray from here in LA, and so many others. These are the people, the communities God has allowed me to participate in, who pulled me out from insanity and drew me back into the land of the living.
