A Letter to Juke from a Texas Writer
"You don't want my life," Anthony Head writes. "I have been within death’s doorway at least four times in the past few years."
Publisher’s note: I received this letter/essay via email earlier this week, after Damon Falke and Tabby Ivy’s “Words Left Behind” posted on the main page. Obviously, I don’t publish most of the mail I get. This email was different. For one thing, it had footnotes (don’t get very many of those.) Anthony had read Damon and Tabby’s piece and taken to heart its questions about the lives we’ll never get to lead and the successes we may never realize. His words are honest. You’ll see what I mean.
Thanks for reading.
I’m 54 and I live in Rural Texas.
You don’t want my life.
I was robbed of my place in line when cancer came for me a while back. It took me out of my time and space for a long period. Maybe I didn’t stop working during those years, but to paraphrase Christopher Hitchens who was riffing on someone else, I was not as I once was.
After the second bout of the same cancer, leukemia, in 2016, a bone-marrow stem-cell transplant saved my life but led to a complication, a condition—a syndrome, really—called Graft Versus Host Disease. Leukemia is a real blast compared to this disease, although I’ll grant you that it is an odd duck of a name. Here, it refers to my body (the host) not making a love connection with the imported stem cells (which are, like, “grafted” into me); thus, the continuous and aggressive disagreementsamongst the vital organs, soft tissues, and numerous systems residing within my boney framework, including my boney framework.
My GVHD (for you civilians) was diagnosed as “chronic” in 2017, and since then, its constellation of symptoms has remained closer to me than my underwear. Although GVHD is not uncommon for all transplant patients, and while the chronic variety might be a bit rarer than the acute, no two patients experience the same set of symptoms. Duration, extremity, response to treatment: everything’s dependent on individual circumstances. Me? Without warning, yet on a continuous basis, my body and my mind devolved into a dismal neighborhood where no taxis would ever visit after dark. I do not believe that I am fully alive—not the me of me—during these dark periods of symptom flair-ups. And my new immune system—specifically re-built with those donated stem cells—just lopes along with no plan and hardly any effectiveness to celebrate. So you can imagine how these last couple of years with COVID in the air have been a thrill-ride for me.
This isn’t really meant to be a wellness essay; despite this odd competition I’ve noticed of one-upping everybody else’s medical condition through online essays. It’s in vogue, but I don’t really care to play that game. (Although, you did read that list of symptoms, right? That’s some rough shit, there.)
One day a pill was approved for treating GVHD, the first of its kind. It took two years but my physical energy improved and my mental output increased as many of my symptoms declined or at least ebbed. I’ll go so far to praise that pill for bringing me back from an oblivion, but then again I’m no shill for Big Pharma, so don’t ask that obvious question.
There was a time of rebuilding. Soon, there was momentum. After that came action. Yes, this was good—there had begun a time when I started to feel good.
That whole thing about losing my place in line? I don’t know if the two loops of my life are connected, medical trauma and existential questions, but they overlapped for a long time. I started reconsidering how I have framed my approach to work and life.
Now I have to stop taking that pill. My doctors explained that it’s time to wean it out of my daily rhythms and patterns. It was compromising my already compromised immune system. Hopefully (their word, not mine) the pill has stimulated my innards (that sounds more like me) to work together, rather than quarrel.
With the training wheels coming off, my immune system must deal with GVHD, COVID, MONKEYPOX—and every other viral and bacterial and maybe alien threat to my life!—all on its own. Naturally, some wobbling is taking place. I have nearly thrown myself over the handlebars already, yet I resist shouting, “Don’t let go!” I’m being told I must do this.
I’ll quickly mention the constant and uncomfortable slitherings of withdrawal from that pill, up and down my spine, throughout my squishy brain material, and deep within my joints, which also happened when my other medicationswere slowly dosed down to zero. Is it irony that I’m hurting because I’m abandoning the one thing that has resuscitated my body and spirit and yet is on a trajectory that would destroy both someday? Is it bad luck? Is this real life?
I cried when I heard that Antje’s father died. Antje is the formerly anonymous donor who saved my life. She lives in another country, so we’ve not looked each other in the eyes yet. But when those first few drops of her donated bone-marrow-stem-cell fluid were pushed through a tube and into my veins, I mumbled, “Hello.” The nurses (who are several rungs above angels by my accounting) cheered “Happy Birthday” because so much of me would soon be very very new. Antje and I are good friends online now. She has a lovely family and I feel close to her in many ways that are hard to explain. I had her blood in me now, and her father’s blood, and her father’s father’s blood. Ain’t that a kick? Romanian blood flowing through a guy born in Evansville, Indiana.
Real quick: Do you remember Craig Sager, the sportscaster with the dandy jackets? He had leukemia. He underwent three bone marrow stem cell transplants over a couple years. When he died in 2016, I started thinking, but not about death. I suddenly thought that the odds are high that I’m going to face leukemia again someday. Much more recently, like after Antje’s father passed away, I realized that when I get another transplant I’ll lose Antje: It will wipe out all physical traces of her within me. I think about that a lot. It’s not so comforting. It’s a gloomy static crackling in the background.
My original point—that I felt like I had lost my place in line—remains relevant, though under-developed at this point, because until more recently, such philosophy still pertained to my way of thinking. As the workload I intended to tackle grew larger and unapproachable because I was spending weeks at a time in a dark quiet room, trying not to move, that “line” theory suffered a vote of no-confidence from a rather large number of my working neurons (We’d reached a quorum that afternoon).
I don’t believe much in those lines. Yes, there are lines, and yes we are all standing in them—as history and chance sorts us—and it sucks for most people much more than it does for the few who’ve been clogging up the front for millennia. But dig this: There are no lines. Just watch the series Angelyne (on Peacock, and I’m not being paid to say that) and you’ll understand me when I say that there are no lines.
OK, let me try to pull all this together, and be forewarned, it doesn’t lead to any happy ending.
Before I really started to erase the lines I’d been standing in, lines which didn’t exist, but were there, I used the shield of the pill to push through. I went without sleep, I worked harder than ever. Some would say I overextended myself. But I began to feel like I was coming back, maybe even to a prideful degree. And so what if I knew that all this prideful expended energy was simply speeding up my demise? Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!’” The great Hunter S. Thompson wrote that, and I like to pretend that I follow such an example. I used to be much better at it.
But unlike Hunter, for a time I figured our country would keep redeeming itself, keep moving forward through time in a positive direction, which points through the horizon to no political nor tribal destination. That’s how I grew up thinking anyway.
And this is why I’m writing: I’ve become so preoccupied with how shitty things are all over the world that I cannot see much of the goodness that I feel might still be out there. Sometimes I think: What we need now is a good big huge trauma of global proportions—something so dangerous and apocalyptic and alien that it would pull the entire world together as human beings in order to sustain ourselves.
And then I remember we already have those traumas within. We don’t need any existential or physical threat from out there. I mean, UFOs? Get in line. Water. My word, where will we get water in the future? And sand! Have you heard about the troubles with sand? And this fucking heat is killing me! Are we doing anything about any of this? Would an alien probe landing on the White House lawn really change our way of treating one another and the planet we live on?
Medically speakingI have been within death’s doorway at least four times in the past few years. Too many people are dying now, who don’t have to be dying, and they are the ones being truly ripped off because priorities are focused on intangible objects, which have more support for their existence than the very lives that build or even use those objects. Perhaps we can no longer trust ourselves to do this job of living with one another. Maybe we never could in the first place.
I blame history. After all, I wake up being told by people I don’t know that I’m stained with the sins, the crimes, the immoralities, and the debts of previous generations of people, whom I never met. Even though I have enough problems of my own, I feel like there’s pressure to somehow talk to those people now, despite them being dust in their graves, and tell them what so many people are saying about them here in the future.
Would they care?
Would that at least absolve me from being born?
I can’t go back in time, not one day, not 160 years, not 2000 years. I can’t go back to when time and history and chance began sorting us out. Nobody can. I don’t even care about those people, if I’m being honest. Fuck ‘em for fuckin’ everything up.
I care about my daughter having kids because I don’t know if we’ve left future generations enough time to fix things—because we’re still arguing over the past. And the past has proven to be a moving target.
So, let’s call it a day and just have Artificial Intelligence write our history textbooks and abide by the findings and move forward. What’s the worst that could happen? I guess the answer is that AI would likely tell us the truth about ourselves. That’s not always going to be a pretty portrait.
I’m trying to live in service to the future, so those lines I was fighting so hard to get back into at one point in my life? I’ve got other places to go now. I am a firm believer in the words of Terry Crews: “Everybody says they’re trying to get their piece of the pie. They don’t realize that the world is a kitchen—you can make your own pie.”
I still see those lines, and I see so many other people queueing up within them. I want to shout: GET OUT OF THE LINE! But that would imply the line exists—and they don’t, even if they do. Lessons are meant to be learned first-hand.
This was an experiment. This piece basically took one hour to write after reading Damon Falke’s Words Left Behind. I simply allowed myself to talk to myself, and I let my fingers be in the room during the conversation. In the end, I failed to pull together all my points. If I’m not mistaken, I may have already peaked in life.
You see? You don’t want my life.
I can only speak for myself, so these are symptoms of Chronic Graft Versus Host Disease that I have experienced to a rather annoying degree (in one text to my transplant doctor I described them as “horrible, debilitating symptoms” that would “last up to ten days.”):
Severe dehydration: leading to the need for close to 100 saline-solution infusions
excessive, painful urination
extreme abdominal pain
sores in my nostrils
sores in my throat
loss of appetite/medical-condition weight-loss
excessive dry eyes
easily bruised muscles/skin
easily torn skin, which led to consistent bleeding issues that needed immediate attention
extreme light and sound sensitivity
restricted airway (or something weird going on with my esophagus)
There are currently two indentations in my body, where it appears as though the top layer of dermis and perhaps a little of whatever’s underneath has collapsed. They are newly cratered dimples. One is near my left temple; the other just above my left ankle.
anemia: to the tune of at least four-dozen blood transfusions
You don’t really want to see that list.
I am not a doctor.
For those who have stuck around to this point, thank you.