My Dark Night(s) of the Soul: Notes on the Long Road to Recovery

A Follow-Up to Doug Porter’s Update on My Health

By Jim Miller

It’s been a long, hard road. Looking backwards, I was confusing symptoms of my acute liver failure with GERD and nausea, an inguinal hernia that required surgery, and a positive colon cancer screening test. Even though I told my doctors that I didn’t feel very well, none of them thought it necessary to do a full panel of bloodwork or even an exam.   

I soldiered through my work and other events in the spring despite feeling poorly, sometimes truly awful for most of the time. On my trip to Hawaii in June, things came to a head just as I had gradually returned to weightlifting after my hernia surgery and had climbed the mountain of recovery, slowly, grinding it out, day by day, moment by moment, pound by pound. 

The same was true for returning to my routine of walking, hiking, or running at least five miles every day—it was difficult, but I did it. 

Life, like writing, is a discipline that demands courage and openness to the blank page or the uncertainty that lies ahead. At our best, we learn to lean into that uncertainty rather than resist it and are able to not master but develop a tolerance for the chaos of our lives, which narrative can sometimes lend at least an artificial structure to. Great musicians who improvise know this as do those who never write a thing successfully but manage to face the void of meaninglessness that can afflict any human being directly, honestly, and without apology. 

In the last week of June, though, my legs swelled up during a Hawaiian Slack Key Guitar Festival, and my wife noticed a sickly yellow color in my eyes and on my skin. Suddenly, everything about my physical existence had come into question, and if not for the intervention of a close friend who happens to be a liver specialist, I would not have gone to a pharmacy to pick up a life-saving prescription, taken an emergency flight home, or ultimately have lived past the remaining week of my “vacation.” The meteor hit my life and shattered me. 

More specifically, the day after the festival, I went to a Maui Kaiser clinic (my wife wisely vetoing my stupid, bullish impulse to go to the gym before the appointment) where the doctor said I either had congestive heart failure or some kind of acute liver issue. 

A problem with my liver had never occurred to me, since I eat well, had been very moderate, and didn’t do anything else that would have jeopardized my health in such a severe manner. Worried, we called my best friend Ben, who is a gastroenterologist and liver specialist in Los Angeles. He immediately got in contact with the clinic doctor, helped order the right tests, told us to get on a plane to San Diego or Los Angeles right away, and even prescribed a high dose of prednisone to save my life and get me safely home. We landed and went straight to the ER, where I was admitted to the hospital. 

It was only the first step on a path that would lead me to a deep, dark place inside myself.

At the hospital, after a few days of observation and a seemingly endless regimen of testing that left me bruised, bleeding, and depleted of spirit, a few doctors had some hope that my liver could recover and regenerate. The core of my physical and psychological being, however, was filled with a stark sense of impending doom. I knew I was dying when everyone else was full of happy talk and empty words. I don’t know why this was the case, but my gut feeling and intuition turned out the be true. 

The reality of the situation was this: my liver was too damaged to be salvaged. It came to a point where the extent of the cirrhosis (or in layman’s terms, scarring, which in my case was NOT alcohol related but a result of an autoimmune disorder) was beyond repair. 

I was a hopeless case.  

This brutal and near instantaneous occurrence of an existential health crisis forced my family and me to live in terror, groping for something to hold onto, every second of every day. Indeed, my case was so bad that I was fast-tracked for an emergency liver transplant at UCSD.  During this time, where I had less than 24 hours to live, it was only the forceful intervention of the liver transplant team overriding an attending physician who wanted to move me out of the ICU to another floor so my liver would have time to “recover.” If he had succeeded, as the young folks say, I would have been “toast,” burnt toast in fact. 

As I awaited my fate, I went through a kind of doorway into another world. In a San Diego Union-Tribune piece I wrote shortly after my surgery, I reflected on this moment:

• What did this teach me? A number of things. The great James Baldwin’s title character in “Sonny’s Blues” says that sometimes you need to “smell your own stink.” I did. I was incredibly humbled, made aware of the lack of control I had over things we delude ourselves we can control. I watched my body and my mind’s decline — I had lost my ability to read deeply, to write and even to think clearly by the time I reached the operation table. My idea of “me” withered, and I was not at all confident I would be there after the surgery. I had to tell the ones I love the most, my son, my wife, my family, my closest friends, that I might not make it out of the operation room, the kinds of conversations I would wish on no one, friend or foe. 

The acuteness of the illness was utterly devastating—I experienced a total loss of myself. At junctures during the endless, sleepless dark nights of the soul, I was unable to concentrate enough to read or write. And I couldn’t remember anything; my body was failing me. 

I somehow knew I was dying even before my liver blew up in Hawaii. The medications during the spring did not control the GERD, I had no energy, food was difficult to choke down, I even had trouble going on a hike with my son. In Hawaii, swimming was uncomfortable, and I found myself worrying about how bad people are about exposing others to their kids’ germs. It was a period of self-effacement and self-protection.

I felt my life slipping away. My body was bloated and jaundiced. As my friend Ben said, this was a slow burn that finally caught fire.

Later, after the six-hour transplant surgery, I suffered through several pharmaceutically induced side effects: neurotoxicity; a hellish night in the Hillcrest UCSD ER with a largely understaffed, burned-out night crew barking orders at the desperate parade of suffering poor and homeless people, screaming and moaning, begging for help to be freed from the voices in their head; a grand mal seizure followed by some smaller ones which led to another ER visit with different staff in the Jacobs Medical Center hospital where for a 48-hour EEG I was adorned with a what amounted to a crown of electrode thorns, trapped in a hospital bed with the sides pushed up to create my own little prison, and hooked to several monitors and IV’s in both arms as my head was tethered to a giant computer.  

I was like a cyborg held captive for an indefinite period of the kind of rest cure that drives the protagonist insane in Charlotte Perkins Gilman’s “The Yellow Wallpaper.”  This was followed at home by delirium, moments of fainting, total erasure of self, psychotic breaks, mania, and brain splitting headaches the likes of which surpassed 10 on a 1 out of ten scale.  I was laid down so low that the bottom looked like up to me.  

After this whole experience, I was hit by a massive wave of nasty symptoms of withdrawal from high doses of steroids. Another medication prescribed to help my brain heal, continues to make me groggy for much of the first part of every day, like wading through concrete at worst or oatmeal when things are less bad. But this too should pass as I slowly get used to and/or am taken off this batch of pills in a few months.  

By July 22^nd of 2024, I will be off everything but a handful of essential drugs that prevent organ rejection.  Surely the perilous, at times stormy seas will continue to bring new obstacles along with moments of triumph and transcendence.  

So it goes.  

This entire year, beginning with a positive colon cancer screening test and the endless wait for a colonoscopy, unexpected hernia surgery, our beloved family cat dying in a devastating fashion, the deep grief that came with the absence of our son being away at college for the first time combined with the death of a close mentor from my youth and more petty travails made the whole year (which included two disturbing bouts with Covid-19 inside my family circle) a kind of psychological “season in hell,” to quote Rimbaud loosely.  

Perhaps the best way to capture precisely how I felt is to invoke the image of one homeless neighbor lying face down on a busy corner in Hillcrest, his hospital walker abandoned at his side, or another homeless man in a wheelchair outside yet another hospital ER with a sign simply saying “Help.” 

Nobody did.

Nonetheless, I persevere. It beats the alternative. I’ll take it with gratitude.

Indeed, I’m grateful for the work and care of the transplant surgical and liver teams, the compassion and human tenderness of the excellent, CNA-affiliated union nurses at the Jacobs Medical Center, my best friend Ben’s life-saving advice, and the solidity that my family gave me as well as my extended family of friends and brothers and sisters in labor and in the San Diego Community College District and City College, where I work.  It’s not over yet, but I have come to appreciate the extraordinary beauty of the ordinary.  

It is a good thing to be alive, despite everything.