A Week in the Life

monday

Went to the lab to get blood work done. My bilirubin, the most important marker pertaining to the function of the liver was 3x higher than normal— higher than it’s ever been. My stomach dropped when I saw the numbers. Eventually heard back from my doctor and he said it’s probably due to the major bleed I had last month. I resumed breathing. Sort of.

I was also told these numbers are nothing to be alarmed about. We will continue to monitor them.

Tuesday

After taking my morning medications, I noticed the palm of my right hand was yellow. Jaundice! I thought, before realizing it was Turmeric powder that had leaked from a supplement capsule. 

Btw, I think Jaundice! could be a great title for a musical. Kind of like SpongeBob: The Musical but the main character is a liver that is in the process of regenerating. As it does so, the “yellow world” of the play gradually transforms into a healthy pink. (Naysayers need not comment, I think I’m onto something here.)

FYI: Turmeric WILL TURN YOUR SKIN A GOLDEN YELLOW.

wednesday

Woke up early this morning with terrible acid reflux and regurgitation which made me start coughing so hard I almost threw up several times. This made me worried that all of this hard coughing was going to put me at risk of another esophageal bleed. I messaged my doctor who basically told me: “yeah…it doesn’t really work that way.” I resumed breathing. Sort of. 

Thursday

Took my blood pressure using one of those wrist cuffs I bought at the pharmacy. My BP and heart rate were extremely high so I assumed I was dying. Then I noticed I had the cuff on backwards. Seriously thought about having myself committed.

Incorrect.

Correct.

Friday

Had my third “variceal banding.” The first two were very painful so was shocked when I regained consciousness and felt surprisingly alright. The best of all possible outcomes.

saturday

Woke up and felt like none of it ever happened. Spent the whole day celebrating in my own head. 

sunday

Another completely symptom-free day. Before I sat at my desk and launched back into my work, I stopped and reminded myself that this day did not have to be like this. It could have been a day of pain, and yet it’s not. All I could think of were the lyrics to Paul Simon’s Boy in the Bubble:
These are the days of miracle and wonder
This is the long distance call
The way the camera follows us in slo-mo
The way we look to us all
The way we look to a distant constellation
That's dying in a corner of the sky
These are the days of miracle and wonder
And don't cry, baby, don't cry
Don't cry.

My Matrix

A couple months ago, my partner Evan wanted to watch the new Matrix movie. I admit somewhat reluctantly that this is not my cup of tea. Generally, I don’t do sci-fi, action, horror or anything apocalyptic or dystopian. I just find it hard to emotionally connect with the plots, and since most of the movies in these genres are plot-based, they generally leave me cold. If I’m forced to watch zombies, I end up staring zombie-like at the TV. When we watched The Matrix Resurrections though, I was neither unmoved nor tuned out, but that’s not to say the movie was good, nor that I enjoyed myself. Not in the least.

To give you an overview of the Matrix franchise, it depicts a future in which all human beings are unknowingly stuck in a simulated reality created by the very machines they constructed. The protagonist, Neo, played by Keanu Reeves is a computer programmer who, upon discovering the synthetic parallel universe in which he’s trapped, launches an insurrection against The Machines, attempting to save humankind. In the simplest of terms, once Neo discovers that the life he’s always known is in fact a dream and that most of humanity is imprisoned in this dream, he makes the choice to fight for conscious reality, whether it’s possible to achieve or not. 

After turning to Evan twice in fifteen minutes to tell him The Matrix Resurrections was giving me anxiety, I stopped watching and shifted my attention onto my phone— yes, from one machine to another, (the irony is not lost on me)— where I opened my Notes app and began to investigate why this, of all stupid movies, was making me feel so speedy and disoriented. As I wrote, The Matrix littered the audio-visual landscape of our living room. Bullets mushroomed, helicopters detonated and bug-like devices swirled through the colored lights of exploding, imaginary cities. Goddamn action movies.

“Since birth, my life has felt like an action movie. Except instead of a band of machines, my chief adversary was something far more complex: my own body.”

It’s hard for me to follow films like this. I never know what’s going on and every ten minutes I have to press pause and ask to be filled-in. But this seemed even more complicated because I couldn’t tell which scenes were meant to be “reality” and which scenes were meant to be simulated reality. I wondered if this was the point: a clever directorial choice to pull the audience into the matrix as well? To this, I say: no thank you. Hurtling through space with no gravity or sense of direction is not my idea of entertainment. It’s all a bit too close to home. 

Since birth, my life has felt like an action movie. Except instead of a band of machines, my chief adversary was something far more complex: my own body. Throughout it all, I’ve been caught in an ambivalent tug-of-war between fighting to know what’s really going on inside of me and not wanting to know. But regardless of what side of the rope I’m on, I’m pulling for the same outcome as the protagonists in The Matrix. I want freedom. 

In my twenties, various mental disorders tried to steal my sanity. Making matters more complicated, my brain was so inundated with psychopharmacuticals I found it hard to distinguish where the real me began and ended. I was trapped in a dream state with nothing to hang onto, a simulated, chemically muddled world, and all I wanted was out. At the same time, hanging over me was this dissonant chord of dread, a musical black cloud. Because what if getting ‘out’ wasn’t the solution? What if I stopped all the meds and things felt even more out-of-control? Maybe I didn’t care what was ‘real’ as much as I wanted to feel in control. Maybe living in this dream state was the best it was going to get. 

I started having gastrointestinal symptoms when I was fifteen and by age seventeen, was diagnosed with two chronic, incurable digestive diseases— what I now think of as my neck-down drama, one that has continued to unfold and grow in complexity with each passing year. One of the most difficult things I’ve had to deal with is the uncertainty of it. So much of it is a mystery that’s impossible to solve.

I Want to Know

For one thing, there’s no satisfying explanation for it. There is some evidence suggesting a genetic component to Ulcerative Colitis and Primary Sclerosing Cholangitis, but presently, the causes are unknown. One of my theories is that I was under so much stress as a child that my nervous system essentially blasted a hole in my stomach from which I have yet to recover. Sometimes I think of undergoing guided ketamine and/or MDMA trauma therapy, spending a week in the Peruvian wilderness, throwing up Ayuasca, shitting my brains out, visiting Shamans. On the flight home I will know I am healed because my entire torso, sternum to pelvis, is radiating sunshine. I get an MRI the next week and there’s no trace of disease. All my organs are back in their original pre-2016 place.

Or maybe it’s current stress. Did the mental pressure of our recent move precipitate a sudden increase in pressure within my liver’s portal vein? If we had never moved to Philadelphia would I still be okay? Did the move shake the sleeping animal awake within me? Could I put it back to rest somehow by moving back?

Then there’s the unpredictability of my symptoms, many of which lack a clear explanation. Months will go by and I’ll feel nothing out of the ordinary. I’ll be living a completely normal life, working full time, walking four to six miles every other day, taking hot yoga twice a week, going out for dinner. In fact, sometimes I’ll forget I have any medical issues whatsoever. But then one day, with no warning, I will wake up to a cramping pain in my upper right quadrant. It feels like someone is squeezing my intestines the way an Italian grandma pinches a cheek. Fuck, I immediately think. Three hours later, the pain, now more of an ache than a cramp, has migrated over to my left side and seems to be penetrating into my back. And it occurs to me: With this broad scope of sensations…their haphazard visitations… how am I supposed to plan for anything? What’s the point of a vacation that turns out not to be a vacation? By mid-afternoon, it has shifted once again. Now the sensation is bouncing back-and-forth between my right and left sides and I’m nauseous. I drink water, but then feel suddenly bloated. I am a waterbed walking down the streets of Philadelphia. That’s it. I’m pulling the plug, I say to myself, resolving to call it a day at 5pm, and spend the rest of the evening rolling around like a giant jelly donut on the couch while pleading with Evan not to watch anything in the sci-fi genre. “Oh, pleeease Booboo?” He says. “But Star Trek!” I threaten to leave the room. Or rather, roll out of the room.

Why does the pain come and go and move around like this? When it comes, does it mean my liver is under attack? And when it goes, does that signify that the disease is retreating? What is the meaning of it? Is it liver pain? The colon? Scar tissue from surgery? 

This pain is not excruciating by any means, maybe a 3 on the pain scale. But it’s a consistently inconsistent presence in my day that’s impossible to ignore. Just as your phone may ping to remind you of an appointment, my abdomen will ping and in that moment I remember: oh right, I am atypical. It’s not normal in there. What does seem to be in working order is my body’s alarm system. It is sending pain signals to my brain so that I’ll look into it, and of course I always do. Scans and labs show that I have portal hypertension from my liver disease. But when I ask what might be causing this enigmatic pain, I always get the same answer: “We don’t really know. It could be any number of things.”

If only I could just accept that. If only it could shut off the alarm system in my brain that keeps me wondering, worrying, second-guessing, self-gaslighting and diagnosing:

Wait— do I feel sick? I’m pretty sure I do. But I’m looking at myself in the mirror right now and I don’t look sick. My face has color, my eyes and skin aren’t jaundiced. I can’t be that close to death.

What percentage is imagined because of anxiety and what percentage is real?

Maybe the pain is the beginning of something they can’t perceive yet. It’s not like we’re living in 3022, it’s 2022. There’s a lot that doctors don’t know. What if this is the beginning of the end of this liver and I get listed for a transplant in the next year?

I often fantasize about being able to track exactly what’s going on inside of me at all times and what it means. Of course it’s an absurd idea— no one can ever know what’s going on inside of them at all times. But I wonder what it would be like, as if the ability to track every physical change at the molecular level, 24 hours a day, 7 days a week would allow me to prevent the worst from happening. 

I was hospitalized about a month ago for an internal bleed, and while there wasn’t much about it I would call comforting, I can tell you that I knew exactly what was going on in my body while I was there. I had an entire medical team surveilling my blood levels, heart rate, oxygen, blood pressure, everything. The constant observation and attention meant I didn’t have to work so hard. After so much hyper-vigilance, I could take a breather, let the professionals carry some of the weight. Of course nothing is ever completely certain, but I had a hell of a lot more certainty about my health during that week between Christmas and New Years than I’d had for a long time. I admit that when I was released from the hospital, I missed it.

I used to say that not being able to decipher what’s real is enough to make me go crazy. But I’ve realized it’s not that. It’s my attempt, however feeble, to trick myself into believing I can control the future. Tessa Miller, author of What Doesn’t Kill You, A Life with Chronic Illness— Lessons from a Body in Revolt sums it up precisely:

“If we’re able to find something that caused an illness, that reinforces a sense of order in the world. It means there’s a definite cause and if there’s a cause there must be a cure. Blame leaves room for that possibility. But when illness happens for no other reason than genetics and environment, and there is no cure, the desired sense of order is thrown to the wind.”

Yes. What is crazy-making for me is running through that wind, grasping onto anything that will give me a sense of order, that will keep me from feeling like I’m tumbling through a random wheel of fortune and misfortune, a world where there isn’t always a reason for the bad shit that happens to people, where sometimes symptoms mean something and sometimes mean nothing, where the other shoe could drop at any moment and there’s nothing you can do about it except pick it up and put it on and keep walking forward.

I Don’t Want to Know

Have you ever stopped and thought about the extent to which we trust our medical practitioners? I’m not saying we shouldn’t, I’m merely acknowledging the phenomenon. When it comes to western allopathic medicine we choose to believe that what’s said is true and put our lives in the literal and figurative hands of our doctors. Every time I check in for a procedure and put on those ridiculous socks and backwards paper hospital gowns, let them stick me with another needle and inject me with propofol causing me to drift into unconsciousness, I am, in effect, saying to them: Here is my live, broken body. I trust you know what you’re doing and that you won’t accidentally kill me. It’s pretty remarkable.

It’s true that I was quite sick when I was first diagnosed. But after courses of steroids and anti-inflammatories, the symptoms went away for years. And when they did, it was easy for me to tell myself that there had clearly been some sort of mistake. Yeah, a doctor had said something about “chronic degenerative liver disease” but that must have been a misdiagnosis. After all, it had been fifteen years since I’d had any symptoms, since I’d even thought about it. 

But then, the wolf came calling in March 2016. My cell phone rang in my Hamptons apartment (I lived and hosted a radio show there at the time), and on the end of the line was Dr. David Carr-Locke with the news that I had a malignant tumor in my right hepatic bile duct. The only possible cure for this colangicarcinoma was a hepatectomy and cholecystectomy, or in English: I would have to get my gallbladder and entire right lobe of my liver removed. The moment I hung up the phone I began shaking, then melted into hysterical, terrified sobs while Nacho, my partner at the time, attempted to keep me from sliding onto the floor and down the nearest drain. How could this be? Yes, my liver function tests were elevated but I didn’t have any symptoms, nor had I for fifteen years. By moving forward, I would be choosing to trust that what the experts said was true. But oh, how I did not want it to be true.

Two months ago, feeling perfectly normal at the time, I had my annual colonoscopy. As the anesthesia wore off, I woke up to the shape of a doctor standing before me. She said my colitis was active. What she actually said, in her German accent was, “The disease is moderately active and you need to be on a course of treatment.” Her words felt like an admonishment, an accusation. Why did she have to call it a disease?! I mean I know it’s a disease but why did she have to call it that? To rub it in my face? Why can’t everyone just LEAVE. ME. ALONE!? I shouted into the echo chamber of my own mind. Once again, here I was in the hands of the medical establishment. I feel fine but… if you say so…

Of course a month after this, I did not feel fine and, as it turns out, I wasn’t. There’s nothing like a medical crisis to quickly bring you back to earth where it becomes abundantly clear what is real. But when I’m feeling okay, there’s a part of me that would rather not know what’s real. My windows of feeling okay are few and far between— just a few months of respite at a time when I can pretend I’m normal. When I’m reminded that I’m not, I get angry. I want to deny it, live in the fantasy. And take a look at this magic trick: when I’m feeling good, and a doctor swoops in and tells me there’s a problem, guess what happens? I wake up the next day with pain. It’s your fault I feel like this! I shout at the doctor in the movie playing out in my head. And then jumping from what could be a legitimate observation about the body-mind connection to completely irrational, superstitious nonsense: If you go looking for a problem, you will tempt fate and find one.

So. Do I want to know what’s really going on inside of me or not? I do and I don’t. Whatever is most comforting to me at the time.

“What is crazy-making for me is running through that wind, grasping onto anything that will give me a sense of order, that will keep me from feeling like I’m tumbling through a random wheel of fortune and misfortune, a world where there isn’t always a reason for the bad shit that happens to people... where the other shoe could drop at any moment and there’s nothing you can do about it except pick it up and put it on and keep walking forward.”

Whatever Gets Me Through The Day

The Matrix is full of complex themes—theological, mythological and philosophical. One of those themes is that what we consider to be reality is merely a construct of the mind and therefore an illusion, a concept prominent in the teachings of Buddhism and Christian Mysticism. One can easily see the parallel to our twenty-first century predicament in which technology has blurred the lines between what’s real and what’s virtual. 

But The Matrix quadrilogy suggests another mystical law: that everyone has free will, the ability to choose between the real world and fabricated world, while asking us to consider the following: do we really want to know the truth? Is ignorance heaven or hell? Or both? If we look closely at the challenges we face as individuals, it’s easy to see how hard we work to avoid knowing the truth of our feelings. For me, sometimes this means longing to know what’s real, because it gives me the illusion of control. Likewise, it means not wanting to know what’s real, because that also gives me the illusion of control. If I have the sense of autonomy when it comes to being sick, then I don’t have to focus on my feelings of sadness, helplessness and fear. I know these feelings are there, lurking beneath the surface, and whenever I come too close, I do what I have to do: fight for reality… fight for the dream… whatever will help me get through the day.

As you can see, my struggle is a whole lot more internal than it is for Neo in The Matrix. His conflict is about winning a war— one world against another. Mine is about oscillating between two worlds inside of me in attempt not to lose my mind while my body is under siege. I tried to explain all of this to Evan. 
“Do you see why The Matrix bothers me on so many levels?”
“But it’s just a movie,” he said, completely calm. I looked over at him, smiled, then looked away. How much do I love him, I thought. His logic. His matter-of-factness. When my thoughts begin spinning into a story or a theory, and I get worked up, he will not bite the hook. He will not let me reel him into my mind’s manufactured drama or the narcissism of my precious experience. He keeps it light while reminding me what’s real: it’s just a movie.

Is it possible to be free, or at least feel free, without feeling in control of everything? I don’t know. As Elaine Stritch said in her one-woman show At Liberty: “I’m workin’ on it.” But for now, I’ve settled on this, and I think of it as a compromise with myself:

I need truth cushioned by hope. Tell me what’s really going on and then tell me I’m going to be okay. 

Someone, somewhere once said it’s important to communicate one’s emotional needs, so here I am. It’s a message to friends, family, healthcare workers, but mostly the voices in my own head. 

I need truth cushioned by hope. 

I’m not talking about bedside manner per se, although I certainly welcome it. If I had a choice between two doctors, one more compassionate than exceptional, and the other vice versa, I’ll take the brilliant doctor and worship her like the goddess she is. Some people complain about how our culture lionizes doctors, but when I’m the one whose life is on the line; I want my doctors with egos so big and hot you can feel them coming, a yellow aura enveloping them as if they’re walking through flames. Let me tell you, I’ll be first in line to fan them. Whatever it takes. To live. To get through the day. 

However, what I do ask them for is hope. 

“If you ever have to give me bad news,” I said to a doctor a few weeks ago before getting wheeled in for surgery, “just frame it in a way so that there’s still hope. And I’m gonna need you to do this…” I paused for timing, “…until there is no more fucking hope!” I burst out laughing. She nodded her head once with a forced smile, but then the papery skin around her eyes softened and she lightly touched her hand to my arm. “Okay,” she said, and left the room.