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.