By Katy Horan
“Clearly, I am Super-mom and Super-doc,” I snorted, as I hustled into the hospital on a gorgeous July weekend. I had left laundry spinning in the washer and my husband minding our snoring toddler while I raced into work on my day off. “I’ll be quick,” I promised myself, “I’ll be sliding into the driveway before he wakes up from his nap.” Maybe I’ll even carve out some time for me—a quick restorative run in the sun after a week of long work days and longer mommy nights.
In my haste to be Super-mom and Super-doc the day before, I had overlooked my patients in the hospital. By overlooked, I mean “completely forgot they existed and did nothing to help them or visit them all day.” Not entirely super, eh? I could blame a half dozen causes for my forgetfulness: my schedule derailed by a five minute early morning meeting that started fifteen minutes late, the relentless phone messages, the walk-in patient who swung by the front desk to see if I might have a moment to discuss the end of his life. But, those events were typical of my workday. Mostly, I blamed myself for being late and forgetful. My scolding mantra carried me through the day, “If only I could do things better and faster and smarter.” Then, as I growled at my staff, I sighed, “if only I could do it all with a smile and a touch of kindness.”
I left work an hour later than planned, and I was only three blocks from home when I realized I had forgotten my patients in the hospital. “I suck,” I groaned. But, I did not turn the car around. Too much was waiting for me at home.
So here I was making my amends for my multitude of failures, jogging up 12 flights of stairs to save the ten minute elevator wait. Panting, I stopped outside the door of the first patient and gathered myself before knocking. He was a man with an unfortunate collection of chronic progressive ailments for which the treatment of one failing organ seemed to insult the other suffering organs. My organ, the lungs, had microscopic bands of scar tissue ratcheting down his lungs, robbing him of oxygen and breath for the last six months.
Pulmonary fibrosis, his scarring lung disease, is as deadly as any cancer, but anonymous in its treachery. Half the suffering the patients and their families face is this perfidious anonymity. Strangers frown at my fibrosis patients in the streets, taking in their their oxygen, their coughing, and their panting steps. Strangers see their nasal cannulas and assume that they are smokers with burned out emphysematous lungs. Whereas cancer patients with survivable tumors are inundated by others’ compassion in the form of meal trains, shaved heads and colorful, hopeful 5Ks, our patients with pulmonary fibrosis encounter blank “Huhs?” and “Scars, that’s cool, man.” Only patients and their families understand the insidious enemy that suffocates them.
Although my patient had entered the hospital due to his liver disease, his fibrotic lungs had tethered him to his bed. I counted the days on the calendar. He had been home less than thirty days in the last six months with four hospital stays. After his last discharge, he returned to the evergreen embrace of the Olympic Peninsula and his home for four short days before he returned to the antiseptic confines of our hospital.
Once in his room, I discovered that he was much worse than our visit earlier in the week. He was wearing high flow oxygen – think of it as the nasal cannula oxygen you see on television but delivered with a fire hose. When you are sitting on your couch, watching The Voice, you breath 5 liters per minute of 21% oxygen (Earth’s sea level air is about 1/5 oxygen). Most people in the hospital are on 2 liters per minute of 100% oxygen. The device he was wearing delivered 40 liters per minute of 100% oxygen. I sighed. My organ. My organ was failing.
Respiratory failure is a cruel blow. Part of my attraction to lung medicine is the magic of breath—our wailing first breath defines us as an individual—our cry of independence from the womb. Breath gives us speech and song. Deep breaths slow our beating hearts and relieve anxiety. Imagine diving to the bottom of a dark lake. Now feel the intense hunger for air that drives you back to the water’s surface. Lack of breath is the most anxiety provoking state our bodies can achieve—far worse than pain. Breath defines life. People put a lot of stake in a beating heart, but that’s just electricity coursing through a muscle. With the right concoction of minerals, a frog’s heart will beat long after its dead, as can a human’s. But breathing, our magic breath, is imperative to our being from start to finish.
My patient’s face brightened when I came in. His skin had the metallic bronze-olive color of chronic liver and kidney disease and it draped over his bones like a tired leather coat. He scooted up in his hospital bed and his wife sat up a bit taller. I could tell they still held hope that I had some sorcery to reverse his pulmonary fibrosis. I did not.
His shaky hand reached out for his water and he brought the straw to his parched lips and took a long, draining gulp. I unfolded a folding black chair from the closet. He lay in his hospital bed, piled with blankets to my left and his wife reclined in an armchair with a paperback to my right. My chair creaked as I sat down. I sat for both my comfort and his. We could look each other eye to eye without him craning his neck. The Grim Reaper stands; doctors should sit. Hovering puts people on edge; it reminds people that there is a clock on the wall with a second hand sweeping.
I cleared my throat, and a torrent came out of my mouth. I was very concerned. We had tried everything. I was going to recommend one more course of antibiotics in case we had missed an infection as a cause for his worsening. I confessed that I didn’t believe it would help.
In a seeming non-sequitur, he handed me his driver’s license. I worried that he hadn’t been following the conversation. My eyes fell on the license. A jolly fat man in a flannel shirt smiled back at me. It resembled the wasted man before me, but only barely. It took my breath away and tears stabbed at my eyes.
I looked over my shoulder, the intense, yet waning sun of the solstice reflecting off cranes building lonely elevator towers awaiting their jackets of steel and glass lace. Lake Union twinkled and beyond the lake peeked a sliver of the kelly green grass of Gas Works Park. Soon, glass, steel, and concrete would obscure the slate of the lake and the green and rust of the urban park.
My patient, a retired logger who lived and worked in America’s temperate rainforest, knew only trees as his constant companions. From his bed, there were no trees to be seen.
“I tried to walk today,” he croaked, bringing my focus back to his slack face, his dry mouth, and the hiss of the high flow oxygen. “I couldn’t even stand without my oxygen going too low.”
When I arrived at the hospital that morning, I hadn’t planned to talk to him about what we do when we can do no more. Not really because it wasn’t time-he severe enough lung disease. I just had assumed that one of his other organs would get him before his lungs did. Something more dramatic like vomiting blood from his cirrhosis or perhaps something reticent like a middle of the night heart attack. But, he would not be relieved of his burden of disease by the pierce of an arrow. It would be by torture—by the squeeze of his lungs. To the same man who had celebrated walking ten feet just three days prior, the unfathomable would occur. He was going to die of his lung disease, not with it.
“My job is to relieve suffering. There are different ways to do that.” I took a deep breath, and leaned forward, “Until now, we’ve been trying to balance your liver disease, kidney disease and heart disease while we quiet down the inflammation that might be triggering the fibrosis in your lungs. But, that hasn’t worked, and it hasn’t kept you out of the hospital. It hasn’t made you better.” I swallowed, my mouth as dry as his.
“Your breathing is causing a good deal of your discomfort, and we have other options for treating that breathlessness.” I heard his wife sniff, but didn’t dare look at her.
“If I told you that I had nothing left to offer you, to improve your breathing, would you want to stay here with us, or would you prefer to be at home?”
He looked to his wife. They shared a gaze, a forty years of marriage gaze. “I’m happy to stay if you all can make me better, but if is really just sitting here and getting oxygen, I’d rather be home.”
I took his hand. He had a warm grip and the asterixis of his liver disease. Due to this, his grip would relax, and then grasp, then relax, then grasp. We sat like this for awhile. It was unclear when I should let go or whether he could let go.
On a recent book tour, Terry Tempest Williams suggested that that compassion is an action, but if it were an emotion, it would be discomfort. Holding a not yet dying man’s hand while he looks to his future death is not comfortable. For the first ten seconds, there is that lovely oxytocin surge, the fireflies of connection. Then, there’s a period of grace – a realization that this moment has happened before in this very hospital room, and in this ten dollar black folding chair, and it will happen again as buildings grow higher and higher blocking the natural light from the windows.
Then, as tears begin to roll down my patient’s thinning face, the discomfort dawned. The tension in my shoulders tightened as I leaned forward to reach his grasping hand. The desire to hand his wife a tissue twitched in my free hand, the box just out of reach. Having opened this conversation, I could not imagine leaving them alone in this tired room with only a sliver of green.
After five minutes, the discomfort became personal. My inner clock ticked off the time until my son would wake up; it groaned as it crossed my sunny run off my to do list. Time for myself would be postponed one more day. I thought of the next two patients and wondered what they would need and if I would have anything left to give.
I exhaled. My mind went back to the man in front of me. I wondered if there was more that I could have done to ease his fears and the anxiety of hardened breath over the last several months. I thought about compassion and how little of it I seemed to have for myself and others. I thought about the discomfort of sitting with him and how it was not pleasant, but not painful.
I challenged myself to sit a bit longer, to see if he broke the hold first. I thought about how little I could do for him and reminded myself that this, this holding of hands, this tension in my shoulders, this reaching for him, this discomfort. This compassion, I could give and endure when I couldn’t do anything more. I shifted in my folding black chair in order to hand the tissues to his wife.
Katy Horan is a physician writer in Seattle, WA. She writes narrative non-fiction at www.flawedoracle.com and is working on a mystery of lost identity in the intensive care unit.
Sami Holden earned an MFA in Screenwriting from UC-Riverside at Palm Desert and is the founder of The Tiny Tim Literary Review. Previously she was a dating advice columnist for The Good Men Project’s column - Dating in the Digital Age with Sami Holden as well as the press and social media editor for The Coachella Review. She wrote a blog for a number of years called Chronicles of Cheerful Clotter for HemAware Magazine, where she detailed her life with chronic health conditions. Sami is also an associate producer and press manager for the documentary Invisible: The Film, which focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a Senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, National Pain Report, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.