Go Panthers

Today is a very big day for me.

I’ve been approved to be listed for a liver transplant at the University of Pittsburgh Medical Center, one of the top transplant centers in the world. In fact— it’s where the liver transplant was pioneered. Even though the surgery itself could be months away, the magnitude of this decision is one of the most impactful of my life. It is the news I’ve been waiting for, praying for, since June.

A transplant is my only option for a long term cure. There is no Plan B. Without a transplant, I would only have a couple years to live. But because I already had this kind of cancer, and because I already had most of my liver removed in 2016, my preternatural anatomy and the risks involved present a very complex case. Not just any center would agree to do this, and until I could find one that would, I hung in the balance.

Waiting for this news everyday felt like waiting to hear whether I would live or die. I dealt with this period sleepwalking through severe depression and desperation and terror, then fighting with rage and indignation against my instinct to curl up. I knew what I was made of, but I fought for my life with such ferocity that I barely recognized myself.

To put it crudely, the Summer of 2022 saw me go a bit crazy. Probably crazier than a season has seen me since 2004. Oh, the games the mind can play when your life is in someone else’s hands:

“What if I don’t hear what I want to hear? No, I will not go there. But I can’t help but go there. Do I email the transplant nurse to see if she has any news? I’ve written her an email but I can’t bring myself to send it. I’m sitting here staring at it. If it’s bad, there will forever be a before and after. And as much as I want to know the truth to eradicate the uncertainty, I’m holding onto the ‘before,’ the not knowing— which includes hope— for as long as I can.”

None of this has anything to do with reality. It’s magical thinking, bargaining.

About a month ago, I dreamt I had a bunch of animals that lived in a barn. This included several cats, and birds which lived in their own cage within the barn. They were beautiful, exotic, tropical birds— just gorgeous colors. But I entered the barn one day and the birds were close to death, could barely lift their heads off the ground. I realized this was because I hadn’t been feeding them. I lifted one of the birds into my hand, trying to nurse it back to health, but then one of the cats got a hold of it. It was this tug-of-war, back and forth, trying to get the birds back from the cats so I could save them. A conflicted dream. Parts of the self at war with one another. Exhausting.

The birds were parts of me that were on the decline: joyous, colorful, funny, free. They were not getting fed. The cats represented my basest animal instinct, my evolutionary brain. The cats in me have been so scared, so intent on survival that they’ve been attacking my ability to experience joy.

When in this kind of heightened state, where the only voice in your head is the one yelling: “LIVE GODDAMMIT. DO WHATEVER IT TAKES,” time drags and goes by without even knowing it. I cannot believe it’s almost September because I haven’t even been aware that it’s summer. When not at chemotherapy, I’m in my apartment mostly because I have two biliary drains hanging out of my stomach and they often leak bile. (I know, lovely right?) But my view has been even narrower than that in this tunnel of survival. I could only see so much.

I am surprised that I bore the unbearable? Yeah, there were moments when I thought the anguish and psychological torture would kill me before anything else. But also no, because I know my strength. And because, well, here I am.

I’m told that the Panthers play in Pittsburgh. Basketball? Football? Who the F knows but go Panthers . I know I will get through this. I can see myself clearly on the other side: standing on stage, singing in a club, on skis at the top of the Rocky Mountains, volunteering— so I can help others walk through the same dark woods from which I’ve just emerged the way that you have helped me. At some point, I’ll have some sort of gathering in NYC so I can say a face-to-face thank you for all of your love and support. For every message, card, gift basket, phone call. I’m telling you, I wouldn’t not have gotten through this without you. You know who you are, and if you’re reading this, it’s you.

The Beginning of the Next Story

The cancer is back again. On June 2, almost exactly six years after my first diagnosis, I found out it’s back in my liver, my worst fear. I was alone in the apartment when the pathology report was emailed to me. I saw the word cholangiocarcinoma. I held onto the kitchen counter. That’s all I remember.

Usually I don’t tell you about the hard things until I’ve arrived at some degree of optimistic assurance about my situation. For one, the social media algorithm isn’t kind to bad news, but more so, the vulnerability of uncertainty is too much for me, and so I assume it will be for you as well. I don’t want to worry you. I want to be able to tell you about hell from the standpoint of hell being over. That is not the case today. The truth is I’m grieving and breathing and planning and fighting. And I’m trusting you’ll be able to handle that.

That’s not to say there isn’t a great deal of hope, I just don’t have the details pinned down yet. The consensus is that I needed a liver transplant, the only potentially curative treatment. But Pennsylvania Hospital’s transplant team said they would not do the surgery because of the complexity of my case…because the risks were too great… and that I would have to find another transplant center.

People have asked me: who is your medical facilitator? Who is your “captain”? I stare at them confused. I’ve become CEO of my own liver and it’s a full time job. Everyday I sit at my desk from 8am till 7pm, contacting the most experienced, most aggressive and progressive transplant centers in the US, trying to convince their surgeons to save my life. I fill out forms, make spreadsheets, take notes on my dry erase board, check on the status of stupid insurance determinations. My phone rings every 10 minutes and I repeat my medical history over and over again. I parrot words I wish I never knew: bile duct, cholangiocarcinoma, hepatecomy, variceal banding, bilirubin, strictures, biliary drain. By the end of the day I have no voice and my head feels like it’s fallen into a bush fire. I’m mentally burnt.

I knew I needed a transplant anyway, regardless of the cancer. Rapid deterioration is a possible feature of chronic liver disease and can precipitate at any moment. But you’re never ready for it. Somewhere between December 26th, 2021 and April of 2022, as I got knocked down by one medical crisis after another, it began to look like my liver was on a landslide toward cirrhosis. (That’s actually not a bad title for my next one-man show. Landslide toward Cirrhosis.)

A strange consciousness takes over when you’re confronted with any relentless illness. You can’t quite believe it. You think back to your long stretch of asymptomatic health, “remission” as they call it, those years between age 22 and 36 when you forgot you even had this disease. Then you stop, pull yourself back to the present, and as if you’re about to get on a scary amusement park ride, say to yourself: Okay! I guess we’re careening down this hill… But you’re also doing everything in your power to break the fall.

I think that anytime you’re “going down,” it happens on two levels: the physical and the metaphysical. As you face the reality of being in a broken physical body, you are forced to face the fact that one day you will be non-physical. And you wonder how much time you have left. I’ve been a spiritual seeker since the age of ten. I don’t spend much time thinking about labels but if forced to identify, I’d say I’m agnostic: part-Buddhist, part-Contemplative Christian Mystic, part-Hermetic, part-Jungian Humanist. But the last few months have pushed me head first into a whole new depth of a dark night, the kind where you can’t see your hand in front of your face, cannot control what’s happening to you, and goddammit I’ve started praying my ass off. I’ve been in several foxholes in my lifetime and I’ve prayed, but not like this. I’m now talking to fucking angels. I mean seriously, who am I? It’s embarrassing. And yet, I don’t have to admit this. I tell you about the angels to prove that I’m on my knees, desperate to find an ounce of quietude in a massive noise-storm.

“Just the fact that you haven’t jumped out a window is amazing,” my dad said to me a couple weeks ago. “Because I might have by now. I wouldn’t blame you if you were like ‘fuck this.’” And it made me feel better because it felt like permission to react naturally to a shitty situation.

I do not wallow in self-pity all day and I am certainly not resigned to the diagnosis. I’ve always taken my work seriously, but until you’ve accepted the job of saving your life, you have no idea what the meaning of ‘serious’ is. So I’m far from languishing, but let me assure you that I believe this is unfair. I’m in the “this is some bullshit” stage of grief and won’t apologize for it. I will not be shamed by the self-help industry’s toxic positivity movement. Policing my thoughts is exhausting. My plan is to try and welcome all feelings no matter their temperature, and surrender the wheel to the best surgeons I can find. As soon as that’s locked down, I’ll let you know. This is just the beginning of the next story.

The Small Comforts

Not a terrible view from the hospital. I’m grateful for the small comforts.
• The sunshine.
• That I’m allowed to wear my own socks and underwear instead of a gown. Open-backed gowns? Who the F thought of such a thing?
• Tripping balls on Ketamine until the pain became manageable.
• That I’m lying in the most beautiful hospital room I’ve ever seen in my life..on the 9th floor of one of the Penn Hospital buildings in University City, and have the room to myself. I am so goddamn lucky.
• For the beds! Forget Sloan Kettering— these beds are amazing. They’re super wide and like sleep number beds where you can adjust the softness, firmness, bring your head up, bring your feet up, bring your head AND your feet up, fold yourself into a pretzel, shoot yourself out of it like a cannonball, use it as a raft.
• That maybe I’m still tripping on Ketamine?
• I ordered the lasagna for lunch and it was hot and good!
• Watching The Golden Girls on my iPhone.
• For all of your comments and messages that make me feel so special, and so lifted and loved up. (Not a small comfort, a big one.)
• Also a big comfort: Evan. Who is the sweetest, cutest, funniest, most steady and stable, loving partner I could ever hope for. Just sitting next to him relaxes my breathing and strengthens my heartbeat. I could be lying on the street, poisoned, and if a doctor passed by and offered me an antidote, Evan would probably say something like: “he’ll only take it if there’s an anal option and you’re willing to administer it.” Which would make me start laughing so hard, I’d eject the poison naturally and be healed.

Elephant Medicine

by Walker Vreeland

〰️

by Walker Vreeland 〰️

So far, 2022 hasn’t given me much rest. I got labs done this week and the results showed that my Bilirubin (major liver enzyme) has jumped way up. So my liver doctor has ordered an MRI— stat, for this afternoon. This could mean there’s a stricture in a bile duct, or…who knows. Honestly at this point, I’m so exhausted from being terrified all the time that I’m almost able to laugh at all of it. Almost, but not quite. What does help is to remember that whatever comes my way, I can handle it. I’ll cut anyone or anything who tries to kill me. This is not aggression as much as it’s remembering who I am. I have an incredibly strong life force, a red hot, sizzling will to live and a to-do list, not made up of obligation but work that stirs my spirit. I once dreamt that I was floundering alone in a lake in the pitch black of night until an elephant appeared beneath me in the water, arose to the surface, lifted me up on its back and swam me through this vast, still body of water as I held on, resting my head against its neck. If that’s not a sign of vitality and magic I don’t know what is. And this is how I have to think about my situation or else I’ll spiral into panic or wrap myself into a self-soothing, comforting cocoon of depression. I’m in awe of life, its mystery and miracles. I BELIEVE in the power of purpose and goodness and intentional love, and I am humbled by the kindness and support that has surrounded me so far this year. Life is hard for all of us but I believe in those three, simple prayers Anne Lamott uses to come through tough times: Help, Thanks, Wow.

You Didn't Fail

When Treatments Don’t Work, The Language We Use Matters 

I’m part of several online support groups for those who live with Ulcerative Colitis and liver disease and I’ve noticed this trend in the way we speak about, and relate to, different treatments when they are unsuccessful. Recently, I read the following post on one of the groups:

“I’ve failed Humira and my doctor just called to tell me I’ve failed Entyvio. My next option is Remicade. I’m sad and defeated. It seems like nothing is going to really work long term.”

I want to address the author of the post, and anyone else who’s ever felt this way after a treatment has turned out to be ineffective.

---

(*All names have been changed for confidentiality.)

Dear Jill,

First of all, I am so very sorry. This disease is a motherfucker. It is unfair and you don’t deserve it. Fuck Ulcerative Colitis. And I am so sorry that the treatment(s) you’ve tried, and endured, didn’t move the needle enough and now you’re back at square one with that original hope. Hope that something exists out there in the universe that will calm the storm raging inside your colon. Just so you can have a moment’s rest. So you can remember what it’s like to have a day without being tortured and strained and worried and utterly exhausted. 

Jill, there was something about your post that I recognized immediately— I hear it from Ulcerative Colitis patients all the time— and it punched me in the gut. It was the phrasing. 

I failed Humira. I failed Entyvio. 

As if you’re not measuring up, aren’t being a team player in the pursuit to send this merciless disease into remission. If only your body had worked harder, maybe you wouldn’t have failed two biologics in a row! But that’s what you get when your body sucks, so all is fair in the end, right?

I’m not sure who is responsible for this self-punishing syntax. I assume the medical establishment is to blame for creating this common parlance which patients then adapted and began using against themselves. But I can also see how easy it would be for a patient to have constructed this sentence, making themselves the subject in front of the failed because it’s so easy to think that way, to believe we are one-hundred percent responsible for our own illness and healing, just as we are one-hundred percent responsible for passing or failing a test. 

It’s hard enough going through this disease without subliminally feeling like we’re inadequate, failing the treatments, failing ourselves, failing life. 

It is not true. 

And I wish just making that statement was enough for us to truly know it, but our minds are complex. Language and the order in which it appears has implications. Can we agree to reverse the subject and object of the sentence? Can we take this one small step to begin reversing the subconscious messaging we’ve been violently inflicting on our psyches? Those of us who live with a chronic illness are both fiercely strong and fragile. Therefore the way that we speak, especially to ourselves, matters. A self-abasing sentence like I failed treatment x can easily turn into a self-loathing belief system which is probably the last thing we need. I tell you that from personal experience. I‘ve spent more time than I’d like to admit living in that defeated, hopeless hole in the ground. Just a few months ago in fact, unsure if I’d ever feel well again or whether my course of treatment was working, there were a few days when I woke up and thought to myself: I guess I will just lie here and be sick forever until I die. So I’m no enlightened being. 

I was thinking that this is just one small way we could begin redeeming our sense of self from the disease, take a little power back, feed ourselves some love, remember that…our doctors? They work for us. The drugs? They’re on our payroll. If they don’t deliver they get laid off. So you did not fail Humira and Entyvio. They failed you, and that is deeply disappointing. Onto the next. You decide. You Jill, are running the show.

Correspondence with Doctor I'm About to Fire

The only royalty free image I could find of a heartless-looking doctor

ME: (this morning, genuinely happy) Wow! My Calprotectin is 248. That’s half of what it was last summer. So maybe the Mesalamine is working…slowly. Let’s maybe find a time to talk. Thanks.

DR: Yes, improved but still high. Recheck in 2-3 months, if still elevated then should pursue next steps.

ME: Ok.

I just want you to know that I was preparing myself for a Calprotectin of 2000…3000…I didn’t know what to expect. So yes, I know it’s still high— I’m informed. But I’m gonna let myself enjoy this moment and not let anyone rain on my parade. Thanks.

[scene]

PS. A high Calprotectin test is indicative of inflammation in the colon. It’s one of the factor’s used to determine the severity of Ulcerative Colitis and the necessary treatment options.

PPS. Life is short. My physical health is dependent on my mental health. Not every doctor I see has to have a superb bedside manner— I am often starstruck by the scientific mind. But the above correspondence was not the first or second time I felt this doctor was insensitive.

PPPS. You may read this and think that I am oversensitive. You would be right. This is why I require everyone on my medical team to be human beings, even if they are medical geniuses. Those are my rules. Non-human beings need not apply. 

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.

The Animal in Me

I spent the last week at Pennsylvania Hospital where I was admitted the day after Christmas. I took myself to the ER because I had woken up at 3:30 in the morning unable to breathe right. And my heart was pounding so fast, I felt like I was taking one of those horrible CrossFit classes where they ramp up your pulse with interval training until you’re about to suffer a coronary. 

For a second I thought it was a panic attack, but I knew very well what that felt like in my body and this did not feel like anxiety. It did however, feel like I’d been shocked from the inside and my heart had become disembodied, as if it wasn’t mine anymore. Nevertheless, I tried to see if I could control it. I pulled out every meditation and breathing and relaxation technique I had in my arsenal, but it was making no difference. As I lay there, I imagined that there was an animal inside me, an alien wolf who had somehow slipped into me while I was unconscious and now, he was banging against my ribs trying to explode out of me.

I decided to take my pulse. Normally, my resting heart rate was between 65 and 70. I put my fingers to my throat and used the timer on my cell phone. Could it be? 96 beats per minute?

I sat up in bed and took a swig from my thermos of ice water. Then I stood up to go to the bathroom and in less than a second I lost my bearings. Was gravity working? Were my feet on the ground? It felt like my head had become detached and was floating off of my shoulders like a helium balloon. I didn’t know what to do next. I could only see a few feet in front of me so I decided that I would remain here, just deal with the space I was standing in. If I had to move my feet, I would figure that out later. 

Still standing, I leaned over onto my side of the bed and rested all my weight into my forearms. I must have disrupted Raisin, our hairless cat, from her sleep because I saw a scrambling of tiny limbs on the bed before she jumped into the darkness like a miniature flying reindeer. I stayed there for a while and just tried to breathe deep. 

Okay…seriously, what is this? I gently tapped my partner Evan on the shoulder, then lightly shook him. “Booboo? I think I have to go to the hospital.”

I hadn’t been feeling well. We both knew that. But at this point neither of us knew why and we had thought (hoped?) I was feeling better. A week before, I had had a colonoscopy— just one of the many procedures I have every year to monitor and manage various gastrointestinal diseases— and ever since then I had felt God awful: headache, joint pain, severe itching, extreme fatigue. Most concerning of all though, was that taking just one flight of stairs was leaving me winded, so much so, I was having to stop and lean against the wall to recover. Eventually just walking from one room to another was having the same effect. Clearly, I had COVID, I reasoned. But when I tested myself, I was negative. Maybe I was having an allergic reaction to the medication I had just started? Surely that was it. I would just stop the medication and maybe by Christmas Eve I would feel better. Could I please? I asked God.

When I was admitted to the ER at 5:30am, the situation had escalated. My pulse was 110 beats per minute. Within 20 minutes, they discovered that I was dangerously anemic. Anemia results from a lack of red blood cells and drastically reduces oxygen flow to the body. This was why my pulse was so fast. My heart was working so hard to pump blood into my extremities to make up for the lack of oxygen. 

“I think you’re bleeding,” the ER doctor said, and she was right. Within thirty minutes, I was receiving my first of four blood transfusions. 

Where the Hell Did This Come From?

I suppose I should give you a little background. I was born with a less-than-perfect digestive system. I have what’s known as Ulcerative Colitis, (which falls under the umbrella of Inflamatory Bowel Disease or IBD), and something even worse called Primary Sclerosing Cholangitis, a chronic degenerative liver disease which has wreaked all kinds of havoc on my body.

And yet… my doctors call me a “walking statistical miracle.” Five years ago, I went through something so big, so medically extreme I didn’t know if I would survive it. I was diagnosed with bile duct cancer— one of the scariest days of my life— and in order to treat it, I underwent a liver resection. They cut my abdomen wide open, 12-inches, in the shape of a hockey stick and then removed three-quarters of my liver. I could write ten blog posts about this surgery alone but suffice it to say, it changed my life. Aside from the badass scar I see everyday when I’m naked, I have a different body now than I did before August 1, 2016. 

Don’t get me wrong— this surgery saved me, (the liver regenerates, miraculously), and I’ve been lucky enough to resume a semi-normal, cancer-free life. But it has also created a bevy of complications. When my liver regenerated it grew back on the left side instead of the right, thereby creating a traffic jam of organs. Nothing is where it should be. This has caused all kinds of gastric discomfort that comes and goes and seems to pop up in different places with no rhyme or reason. I have masses of meaty scar tissue running deep in and around my abdominal wall, fluid is building up around my portal vein, and my spleen is almost twice the size that it should be. It’s a mess in there. A gastrointestinal fun house that isn’t much fun. 

Another Problem

Now, I am sitting here on the 27th of December and the doctor standing at the foot of my bed is telling me about another problem. I have Esophageal Varices which are bleeding blood vessels in the esophagus. 
“This was most likely caused by your surgery in 2016.” says the hotshot, twenty-something doctor. She’s wearing an N-95 mask, eye glasses and a shield. The badge on her white coat says Dr. Emma Cornwall. “But I want you to promise me you won’t Google this. Normally it’s caused by end stage liver disease or alcoholic cirrhosis. This is obviously not you since you don’t drink and haven’t for 15 years.”
So much for getting rewarded for good behavior. 

“The animal in me has been cultivated from a lifetime of feeling like my body has betrayed me, of unpredictable and at times extreme illness, of being ambushed by pain, and I am just so tired. ”

Covid Christmas Shitshow

I want to pause here and acknowledge the extraordinary circumstances we are living through as a country and planet. As the COVID-19 virus ebbs and flows, mutates and moves, we’re back in a phase of skyrocketing infections, and once again, it’s a scary time to be in need of any major medical intervention.

My immense respect and gratitude for the medical community, nurses most of all, cannot be measured. Having spent a lot of time in hospitals, I have always thought nurses were heroes— long before COVID. For one, they’re doing all the heavy lifting, and they have more face-to-face time with the patient than anyone else. I know first hand that their compassion and caring has the capacity to heal. 

But with the Omicron variant spreading, hospitals across the country are filling up fast, and doctors, nurses and first responders are doing their very best to keep up. A nurse at Pennsylvania Hospital told me that every single hospital in Philadelphia is overrun and understaffed because of COVID, that she’s never seen anything like it. “The system’s broken,” she said before throwing up her arms in frustration and walking out. It is unimaginable what they’re going through. 

The treatment for the Esophageal Varices was extremely painful. It’s called “banding.” They go in through the mouth with an endoscope, find the enlarged blood vessels and tie them off to (hopefully) stop the bleeding. As soon as I woke up in the recovery room I was overtaken by jagged, piercing pain from my chest to my head. It was that kind of spasmodic, acid reflux pain that was sneak-attacking me in different spots: one moment my chest then throat, then back, then jaw. And what they were giving me for pain wasn’t cutting it. I pressed the call button. Nothing. I pressed it again and again. Nothing. I called the nurse on the number she left on my dry erase board. No answer. I was in terrible pain and no one responded for 75 minutes. 

I became frantic. I started contorting my body into illogical positions, thinking that if I found the right one, I could find the key to less agony, even just 10% less. I got off my hospital bed and tried sitting in a chair. Then I knelt by the bed and, as if praying, pressed my elbows into the rubbery mattress, my chin extending down to my chest, exhaling through my mouth. I tried standing up straight and tilting my head up. I lay in a fetal position on the bed. I lay in a fetal position on the cold floor. The longer I felt pain without relief, the more my agitation propelled me from one position to the next. I called out weakly: “somebody please? Is there anyone there? Nurse?”

I am not a patient person, much less a patient patient. If I’m stressed and am faced with an obstacle, my anxiety causes me to get obsessive which, from the outside, can make me look like a slightly insane person. And when I’m in pain and desperate, I can turn animalistic. When I say that I turn animalistic, I’m sure a passive aggressive edge in my tone of voice can be detected at the very least, but it’s my inner life I’m referring to. What’s going on in my mind is usually far more dramatic than anything I express: I am Ophelia gone mad. I am a feral wolf. I am growling, incredulous, brimming with entitled, righteous indignation. How dare life spin this far out of control. 

I don’t want to admit any of this to you. I want you to think I am all love, all the time. Then again, all this fire doesn’t come out of no where. My friend and colleague, Psychoanalyst Dr. Claudia Luiz provides this explanation for those dealing with a chronic illness: 

I like to tell people I got into a knife fight.

“Any time your body betrays you, you’re going to be in a struggle with yourself. Because you don’t want to have this happening and yet, it’s outside your control. It’s easier when you’re dealing with an “evil force” that’s outside of yourself, but when that “evil force” is inside yourself, it’s agonizingly disturbing. It’s very difficult to know how disappointed you are, how angry you are. And what is worse than being mad at your own self, your own genetic disposition?”

The animal in me has been cultivated from a lifetime of feeling like my body has betrayed me, of unpredictable and at times extreme illness, of being ambushed by pain, and I am just so tired. 

By the time the nurse came in my room, I was beside myself. “I’ve been calling you! I’ve been in here writhing in pain and no one comes! No one cares!” I started to cry.“ Please. Just…anything. Something…anything.”
“You know what?” The nurse said, cutting me off. “I am the only nurse on this floor right now and I’m doing the best I can. I would never leave a patient unattended, never! That’s not who I am!”
They prescribed me a sedative. I was still in horrible pain, but I was able to settle down a little bit. As my nervous system switched into a lower gear, I wondered to myself: had it really been 75 minutes that no one came to my room? Or did it just seem that way because I was in so much pain? Where did that number come from? Did I just make it up? I am an entitled, privileged asshole.

“Chronic illness is my nemesis, my teacher, my obstacle and motivation. It is now a life experience on which I would like to report. I am learning how to work with it as I attempt to live for as long as I possibly can. ”

Home

For those who don’t know me, I tell stories about my life. It’s my way of processing difficult events or truths. By reframing my own real-life narratives, I’m able to reclaim them, make meaning of them, and in doing so, provide comfort to others who are facing similar challenges. My friend Bridget is a Nicheren Buddhist and she refers to this as “turning poison into medicine.” It’s why creativity and self-expression are my most deeply held values, crucial to my ability to survive and thrive.

Of course when I’m desperate or terrified or in pain, this is the last thing on my mind. When I’m stuck in the middle of the shit, I’m just trying to get through the shit. 

But now I am home and am feeling much better. It’s a new year and I’m already turning poison into medicine, I suppose, with this blog post. I have another procedure scheduled in a few weeks that I’m not looking forward to, but I’ll be okay. I’m just relieved there was a cause and a way to treat it. I will simply add this to my list of what I’ll have to manage for the rest of my life.

So What?

So why am I telling you all of this? I have no idea. I just know that I have to tell it to anyone who will listen. I know that when you begin writing something, what’s most important is trusting your impulse and getting it down. The “why” usually reveals itself in time. The difference here is that I’m sharing with you the first stages of whatever this will become, even if it becomes nothing but this. 

My hope is that, as I look back on my life and piece together my experience with illness, I’ll get to know this animal inside of me, this ferocious alien wolf who just a week ago was knocking on my chest, my stomach, my bowels, as it tried to get my attention. Our relationship has been pretty one-dimensional so far. I’m usually furious with it, holding a knife up its throat, telling it to back the fuck off. Some days, I’m able to forget it, although not for long. But what if I could thank this animal for shining a light on what needs tending? What if I could put the knife down?

Here’s what I know: I’ve been lucky enough to live many lives and many stories. This is one of them. It’s something I’ve been living with since I was a kid. Chronic illness is my nemesis, my teacher, my obstacle and motivation. It is now a life experience on which I would like to report. I am learning how to work with it as I attempt to live for as long as I possibly can. Because let’s get real here, that’s the essence of everything for me: how to live as best as I can, for as long as I can.

Today, it is January 1, 2022 and I’m writing you from my living room. It is rainy and blustery here in Philadelphia and I look forward to spending the day wearing the socks and sweatpants I’m wearing now, and making no decisions except what to eat and what to watch on television. I never liked New Years resolutions much. If you want to change your life, you can do it any day of the year. I have many plans for the future, so much I want to experience. But when it comes to my health, I’ve learned to set the bar pretty low. That way, when I get out of the year alive, it’s been a good one. 

So let’s do that. Let’s get out of 2022 alive. Let us find the lives we want to live and grab them, but without putting so much damn pressure on ourselves. 

Until next time, may our hope burn bright, this year and beyond.