In the spring of 2012, after ten years of relative calm, I was hospitalized for a severe Crohn’s Disease flare-up. Who knows what brought it on, but the usual treatment of antibiotics, steroids and fasting was ineffective. The disease had gotten so bad, in fact, that parts of my colon sprung leaks, like a garden hose that’s been run over by a lawnmower. Bacteria had seeped out and formed an abscess inside my abdomen. Not the cute, pimple-sized abscess. This was an abomination, so big that it pressed against my stomach wall and leaked out through my belly button. One night I awoke to a shiny trail of pus running down my naval. “Nurse, is this normal?” I said, pulling back the sheet.
“Better it drains out of your body rather than inward,” she said, gently cleaning the area with a wet rag. “The last thing you need is blood poisoning.”
“Well, I can thank my lucky stars for that,” I said, watching the yellow syrup ooze down my stomach.
There was an inflamed ball of pus inside my belly, the size of a large grapefruit. And this wasn’t even the main problem.
“It’s complicated in there,” the doctor said, illustrating the mess on his notepad. “A large piece of your digestive tract has become tangled with the abscess, causing some obstructions.” This accounted for the excruciating pain, as well the nausea and the sickly green wax paper that passed for my skin. “See what I mean?” he said, holding up his sketch. It was illegible, just a circle with a bunch of angry slashes through it. My internal organs now resembled a kindergarten project drawn by a deeply disturbed child, one who spends her nights conversing with an unplugged television.
“At this point we’re looking at one option: removal of the entire area,” the doctor said, bracing himself for my emotional collapse.
He seemed surprised by my response. “How soon can we do it?” I said. At that point I would have let him cut off both legs and replace them with hockey sticks, if it meant I’d be any closer to a meal. I hadn’t digested solid food in two months. Every time I ate, the food got stuck in my colon and then burst through the intestinal wall, and then dripped down into the abscess. That flaming ball of pus, it turned out, was stealing all of my nutrients. The pain would soar, I’d spike a fever and then wind up back at the emergency room, where I’d gotten to know the entire staff on a first-name basis.
“Six weeks should be enough time for the area to calm down,” the doctor said. Operating before that, he explained, could pose a significant risk. In the meantime a line was inserted through my belly and into the abscess, puncturing it like a straw into a carton of milk. The abscess would siphon through the line and into a plastic bag that dangled freely by my side. The output was staggering: at first it was a half-gallon a day, this vile mixture of blood and bacterial tendrils. It looked like a side dish my mother made when I was a kid: stewed tomatoes thickened with chunks of Wonderbread. “I need a picture of this,” I said, searching for my phone. The nurse was a recent college graduate, trying to do things by the book, but she humored me and held the container of drained abscess next to her face, as though posing in a Woolite ad from the 1950s. I asked her to smile, then snapped a photo and sent it to my mom. “All we need are sliced hot dogs,” I texted.
Since eating was forbidden until after the surgery, a feeding tube was inserted into my chest. Two thousand calories a day pumped directly into a major artery. Add that to the drain in my stomach and the two IVs, one in each hand, and you have the torso of a human marionette. The doctors encouraged me to take walks around the hospital floor to regain stamina, but with all the wiring it was too complicated. Even reaching for the TV remote was an ordeal, so I happily considered that my daily exercise. “You need to get up and walk around,” my mom said, “or you’ll get bedsores.”
“Bedsores?” I said, shaking out my drain into the plastic container. “Please don’t bore me with your luxury problems.”
The doctors kept me for another two days, to monitor my temperature and make sure I responded to the IV nutrition. I spent that time sulking, imagining life without a colon. How would I cope with this? Surely no one else in history had dealt with such a thing, so I prepared myself by staging a make-believe press conference, broadcast live from my hospital bed. I acted out all the roles: me, Barbara Walters, old girlfriends who dabbed their eyes while regretting their lack of understanding. Even a few celebrities chimed in. “A true inspiration, a true American.” This from Denzel Washington, who, along with Axl Rose, presented me with an honorary Oscar for heroism. I graciously accepted the award and then dedicated it to the real hero: Matt Damon, for his fearless portrayal of me in the film.
To my surprise, life in the outside world carried on without me. I checked the news regularly, expecting to find my health updates on CNN. Instead I watched a different saga unfold. While I faced mortality from the luxury of a hospital bed, the real battle was happening in the streets of America. Thousands were united in defiance of insidious evil, an existential threat that crept into the fold of our great nation, sure to annihilate our way of life. It was called the Affordable Care Act.
The legislation had passed two years earlier, and the backlash was just then hitting a fever pitch. The news showed mobs of angry protesters intercut with politicians who publicly condemned the law as mortal sin. “This is real, folks, and the consequences will be felt for generations,” exclaimed one senator, his face trembling as he addressed the press corps. Judging from his delivery you would have thought an asteroid was hurtling toward earth. But he was talking about free mammograms, and that doesn’t quite pack the same punch.
I watched the coverage all day, taking breaks only to empty my assorted bedpans. As a courtesy to my roommate I kept the volume low and thus missed most of the talking points, but thankfully many of the protesters held signs, so I was able to piece together the overall message. It was simple: we don’t want government healthcare. This was not how the founders envisioned it when they drafted the Constitution, over two hundred years ago, a time when the entire population fit inside a barn and most illnesses were treated with leeches.
Among all the signs, the most common was “NOBAMACARE”. Some used the O from Obama’s logo; some used the classic circle with a line through it. Some used Obama’s face, but with big ears and brown fur drawn in to resemble a monkey. A step up from this was “OBAMACARE = OBAMA FASCISM”. It was stenciled onto a sandwich board propped beside a middle-aged gentleman who grilled steak tips on a hibachi. Remove the swastika from his t-shirt and he could have passed for any urban hot dog vendor. I admired him, not because of his political stance, but because he looked so well fed, what with his drooping stomach and barbecue sauce smeared on his lips. I wished I could have been there with him, fighting the fight, gnawing on an ear of buttery corn while pumping my fist in solidarity.
Elsewhere, an older gentleman held a sign that read “GRANDPA AIN’T PAYIN THE BILL”. I’m not sure what this meant, but I felt bad for his grandkids. Did they get this everywhere they went, even Pizza Hut? Next was a photo of a young woman with long braided hair. The camera slowly zoomed in on her sign, which read “UNINSURED BUT AT LEAST I’M FREE.” So that’s what this is about. Freedom, our God-given right. I swelled with emotion and imagined myself ripping the tubes from my body and marching into the street, in a hospital johnny and slippers, weighing 135 pounds, leaving behind a trail of slick pus. I wouldn’t last twenty minutes, but at least I’d be free.
I heard them loud and clear. Government healthcare was bad. Mandated healthcare was bad. Affordable healthcare was bad.
Two days later I was discharged. I sat in front of the hospital, in a wheelchair, waiting for my mom to pick me up. I hadn’t been outdoors in two weeks, so I closed my eyes, listened to the chirping birds and enjoyed the June sun against my pale face. This was what the protesters meant by freedom. The unbound, unencumbered vivacity of not having health insurance. Because the right to be uninsured is what makes this country great. Take it away, and then what? Gone is the rugged individualism. Gone is the desire to seek out new frontiers. With a healthcare mandate shackled around our necks we’re nothing but a flock of soulless factory workers, toiling under the government’s boot heel.
I spent the next six weeks at my mother’s house, resting up for the surgery, yet still the healthcare debate haunted me. Most of it came from Justin, who lived across the street and spent most of his life in the front yard, yelling at squirrels. Justin was unemployed and staunchly opposed to what he called “socialized medicine”, which, ironically, was healthcare designed specifically for him. “I’m not paying, and that’s final,” he said. “They can tax me, penalize me, whatever. The state cannot decide what’s best for me. Period, end of story.”
For Justin, it was a matter of principle. He would rather go to jail than have health insurance. I admired his passion, but wondered what he would do if he ever got sick. “I’d figure it out!” he said, now yelling. “If it was really bad, I’d go to the hospital, sure. But most things we can fix ourselves. That’s my point! We live in a nanny state, where we’re just these helpless little baby chicks that can’t do a goddamn thing without the government pampering us!”
Justin had been fired from his last four jobs. The most recent was a liquor store, where he stocked shelves. Before that he was let go from a telemarketing gig, selling vacation packages to strangers, a commission-based job that didn’t even pay an actual salary. Yet somehow he felt skilled enough to suture his own flesh wounds or reset a broken bone.
I told him I was conflicted on the issue. Part of me felt that universal healthcare was important, essential even, but the other part liked being free from tyranny.
“Well, for you, healthcare is probably a good idea,” he said, nodding at the catheter that dangled from my chest. “But when the government gets involved, that’s when things get scary. I mean, aren’t you the least bit worried?” He had just informed me of Obama’s newly commissioned death panels, which, according to him, were convening at that very moment, in a secret room hidden inside the earth’s core. Their job was to weed through files of sick and elderly people and decide who was worth keeping alive and who should be put out to pasture.
This seemed far-fetched. Even so, that evening I drafted a letter to the death panel, something to read in case I was called upon to defend my life. I gathered together documents: tax returns, a college transcript I found in the basement, and some little league clippings from the local paper that my mom had saved. Proof that I was a worthwhile American. I searched for anything else that could lend value to my existence. There was an 8x10 photograph of Telly Savales, pointing at the camera. The inscription, which was dated just after my birth, read: Who loves ya, Dannyboy! Best Wishes, Uncle Telly. I’m not sure how or why my father ended up with this picture, but he mentioned it at least once a month when I was growing up, as though it were a family heirloom I would one day inherit. I hesitated, then placed it in the folder, thinking an endorsement from Kojak certainly couldn’t hurt.
In the weeks that followed I made an effort to relax and watch less news, but when the day of my surgery arrived, I caved. On the drive to the hospital I listened to talk radio, where the topic—you guessed it—was Obamacare. The callers were enraged, like Steve-o from Quincy, who predicted that emergency rooms would soon become savage arenas, just like the movie Mad Max. “I’ll paint my face like an Indian and go in there with a baseball bat, you know, the kind with spikes on it, and be like ‘fix my friggin toe’. Right? That’s what it’s comin’ to.”
“That’s what it’s comin’ to,” the host echoed. “Let’s go to Barbie from Medford. Barbie, who’s gonna fix Steve-o’s toe? Not President Obama, not unless Steve-o’s on welfare.”
The next caller was a soft-spoken man who identified himself as Joseph from Andover. Immediately I placed him as a snob. No one goes by the proper “Joseph” anymore, at least not since the death of Christ. At first his argument made sense, with his insights on price control and Medicaid expansion, but he quickly veered into a theory that vaccinations were a form of mind control. This dovetailed into an apology for “something big that was going to happen”, and then the line went dead.
“God bless you, Joseph,” the host said, blithely. “Folks like you are what’s keeping this country honest.”
Given the hysteria, I expected the hospital to be abandoned when I arrived, the halls littered with dirty forceps while the doctors—those lucky enough to avoid capture—fled to Canada through an underground tunnel. But inside it was business as usual: polished floors, bustling professionals, the smell of stale Au Bon Pain coffee. In fact, it seemed more like a museum than a hospital. I’d never noticed the glass prisms high up on the ceilings. They shifted around almost imperceptibly, creating a subtle kaleidoscope reflection. In the center of the lobby was a twenty-foot granite sculpture, a bequest, according to the plaque, from the artist to the medical board of directors. The walls were decorated with text: short biographies of industry pioneers and their medical breakthroughs, things we take for granted today, like the stint, or the prosthetic limb. The entire building was a testament to science and knowledge, a pursuit so ingrained in our bedrock that no amount of political chatter could crack it.
In pre-op the nurse made small talk, as they often do to distract a patient when the needle enters a vein. “Yeah, the Sox definitely need a middle reliever,” I said, “but how about this whole healthcare thing? Seems like it’s all anyone talks about lately. I mean, how’s the surgeon feel about this? Is she bitter?” I thought of a story a friend recently told me about his house. He bought it on a short sale from the bank after they foreclosed on the original contractors, who ran out of money, two months before construction was complete. Rather than graciously handing over the keys, the contractors trashed the place, tore out electrical sockets, poured cement down the drains, and spray painted FUCK YOU and I BE BACK on the walls. How might a surgeon react if, moments before a procedure, he or she was told of a massive pay cut or an undermining new malpractice law?
“You have nothing to worry about,” the nurse said, assuring me that I was under the best care, in one of the best hospitals in the country, and that no one—not democrats, not republicans, not even Steve-o—could threaten the integrity of our healthcare system.
Immediately I felt relaxed. Nurses have that magic power, as did the twenty milligrams of Fentanyl and Valium that had just hit my nervous system.
I awoke from the surgery with a colostomy fixed to my abdomen. This would double as my anus for the next three months, after which time the surgeon would reattach the small intestine directly to my last few inches of viable colon. Outside of the medical world, this procedure is known crudely as “getting the bag”, which makes an already unpleasant situation sound trashy and even more humiliating, as if I had the choice to replace my broken intestine with a brand new model but instead went for the cheaper option. It also heightens the dread, referring to a complex apparatus by an everyday household name. Death row inmates take their last breath inside “the chair”. Medieval criminals were pulled apart in an intricate torture device known simply as “the rack.” Now I’d be wearing “the bag”, which, in spite of its medical ingenuity, sounds like a burlap sack worn over one’s head to publicly shame them.
A colostomy is actually more basic than it seems. While most organs have multi-faceted, interdependent functions, the colon is really just plumbing. And surgically it’s treated as such. My small intestine was diverted through my stomach like a runoff pipe—there it was, right out in the open, a curled tongue poking through my skin to catch some snowflakes. The bag itself was made of thin, durable plastic—nothing that couldn’t be purchased at any Home Depot. When empty it pressed flat against my waist, but as it filled—which it did four to six times a day—it bulged out like a bag of microwaved popcorn. At the bottom was a clasp. To unload the bag I’d simply undo the clasp and lean over some kind of receptacle. Ideally I’d use a toilet, but when that wasn’t available I disposed of my waste in any outdoor location. I tried to be discreet, but sometimes it’s hard when you’re on a busy commercial street, hugging a trashcan.
The bag was fixed to my abdomen with an adhesive gasket, no stronger than those felt pads that stick onto the bottoms of chair legs. Obviously it couldn’t be cemented onto my skin, but it was frightening how easily the thing peeled off. When the bag was empty, this wasn’t an issue, but the pressure mounted as the bag filled, and there was only so much the gasket could take. At least a dozen times my colostomy reached capacity and then ruptured and spilled down my leg. Usually this happened when my mind was elsewhere, those rare instances when I felt like a normal, healthy person, one without a bag of shit glued to his stomach. Fortunately the spills occurred beneath my clothes, and I learned to keep a stellar poker face, able to carry on any conversation without alluding to the fact that bile was trickling into my shoe.
Twice the bag burst while I slept. The waste was like corrosive acid, staining through the sheets and deep into the mattress of my mother’s guest bed. But even as I scrubbed the next morning, a bandana around my nose to curb the putrid smell, it was hard not to be grateful. Two months ago I couldn’t even stand up straight, and now I had the strength to clean a bile stain, and do so with vigor. Afterward I’d eat some scrambled eggs and toast without worrying if the food would get lodged in my gut. And then I’d take a walk, which was especially nice without that portable nutrition pump to lug around. After four months in and out of the hospital, chained to IVs, catheters and drains, I finally felt free. Just like the uninsured, I thought as I emptied my colostomy down a sewer grate on the side of the road.
In October of 2012 I had my follow-up operation, called the “reversal surgery”, where the colostomy is removed and the two ends of intestine are reattached. The first time I used my new, sleeker colon, I was nervous. It had been three months since I moved my bowels, and I didn’t know what to expect. I approached the toilet reluctantly, like a racecar driver getting back into his car for the first time since a near-fatal crash. The surgeon warned me that the sensation would be odd at first, and she was right. I felt an abrupt suction in my stomach, like those pneumatic tube systems that transport things throughout office buildings. Aside from that it was painless and satisfying, so much that when I finished, I leaned against the bathroom doorjamb and wept.
“I’m glad you made it through this, Danny,” Justin said in a dubious voice, implying that his happiness came with some conditions. “But imagine the care you would have received had you not been able to choose your own surgeon? What if you had to go with some kid fresh out of medical school because, I don’t know, he’s cheaper and in your network? You get my point now?”
Any doomsday scenario was possible, but I was tired of debating, so I shrugged and took a bite of my apple. Justin carried on about socialism while I slowly chewed, savoring the tartness, enjoying my newly functioning digestive system and quietly thanking the surgeon who repaired it. My theory on healthcare is simple: I need it. Beyond that, I don’t know how it works. I’m sure the system is flawed, but fixing it is beyond my comprehension. I can barely assemble a bed frame from Ikea.
I’m lucky that, for the last fifteen years, I’ve been covered through my employer. When I was hired, the HR rep gave me three choices, and I picked the most expensive without even reading the one-page summary of benefits. I’m not even sure how much my plan costs because it’s deducted directly from my paycheck. All I know is the bill for two colorectal surgeries and everything in between came to a hundred and sixty grand, of which I owed ninety bucks.
“You just wait,” Justin said. “Your premiums will go up, and your healthcare will be compromised. The only ones who benefit from Obamacare are the deadbeats.”
“Good,” I said, reminding him that I am one of those deadbeats, currently masquerading as successful, and that someday my charade will end. When that time comes I’ll be on my own, uninsured, or free, if you will. And who’s going to insure a loss leader like me? I can’t imagine many healthcare providers will be clamoring for my business. In free market terms, I’m a bad investment. But when you think about it, who isn’t? Nearly half of Americans have at least one chronic disease. One in three will get some type of cancer, and—here’s an alarming statistic—three out of every three will die at some point in their lifetime. In a perfect world we’d go like cats, or Yoda. Curl up on the bed, close our eyes and sail off peacefully to the hereafter. But we all know it doesn’t work like that. There are surgeries, and bedpans, and pacemakers, and counselors, and overpriced prescriptions. There are bronchial infections and fractured vertebrae and ruptured ovaries. You may think you’ll sidestep all that. You may say, “When it’s my time, I’ll go naturally.” Something tells me that when the end comes, though, we’ll all be grasping for that one extra breath.
* * *
In the fall of 2013, a year after my surgeries, I went back to the hospital for a follow-up colonoscopy. The procedure isn’t so bad if, like me, you enjoy sedation. Of course, since my colon is one-tenth the length of yours, it was over before I really started to enjoy the buzz. The results were good—no active Crohn’s Disease. Afterward I celebrated with a pizza and the nightly news. The lead story, once again, was the Affordable Care Act. Opponents of the law had tried to stall its funding with something called a filibuster. This sounds like a grooming device for dogs, one sold on television late at night, but it’s actually a key ingredient in today’s legislative process. In the standard filibuster, someone gets behind the podium and speaks for as long as possible. After six hours they drift into madness and recite anything that crosses their mind: song lyrics, grocery lists, what have you. That evening’s report showed a twenty-three hour filibuster. In the final hour the senator, still upright behind the podium, read Dr. Seuss’s “Green Eggs and Ham”, a last-ditch effort to sway the hearts and minds of the American people.
This is the damage that affordable healthcare has left in its wake. A grown man dressed in a suit and tie, reading children’s literature to an empty room.
One can only hope his insurance plan covers mental.
Daniel Pellegrini is a recovering drug addict with an aggressive form of chronic bowel disease. That means he can't take painkillers after undergoing rectal surgery. He's here to show you just how beautiful life is.
Best of the Fool: