By: Jonathan Shipman
“Trick or Treat” is the question asked by so many, at the end of every October. Being an “all or nothing” sort of chap, I managed to have both. The trick, I suppose, ended up being a sort of time warp, if you will. The treat was not dying. I’ll take it.
I stayed in for Halloween night. The most I had done that day was dress up as a ninja for my shift at Starbucks. Most didn’t even realize I was dressed differently. The gi top was, for the most part, obscured by my apron. I wore tabi boots, though most didn’t notice and customers could not see them from the other side of the counter. I considered my outfit going unnoticed to be rather appropriate, in the end.
That evening, I was lying next to my fiance, Emily. Whatever we’d been talking about, the conversation stopped when I clutched my chest.
“What is it?” she asked
“My chest hurts,” I answered
“Is it bad?”
“I’m not sure.”
I stayed still and turned my focus inward. Where was the pain located? What kind was it? Could I move? Emily sat next to me in silence, waiting for me to surface with some answers.
“It’s getting worse,” I said after a few minutes. “I can’t inhale or exhale completely.”
“What kind of pain is it?” she asked, not taking her eyes off me.
“It feels like I am being crushed if I breathe in too much.” I indicated to the middle of my left lung “mostly here.”
My fiance activated her iphone and searched for “chest pain” – causes, types and solutions.
I knew I wasn’t having a heart attack. The pain was not in the right place, nor had it spread to my extremities. The pain intensified, however, and after about twenty minutes, I couldn’t move without making it worse. When my condition showed no sign of improvement after half an hour, we headed to the emergency room.
We pulled up to the ER of UMASS Memorial University Campus. Carefully, I walked inside as my fiance gave the keys to the valet. I approached the receptionist’s desk and greeted the staff with a friendly hello.
“Can I help you?” she asked, with a smile.
“I certainly hope so. My name is Jonathan Shipman. I come to this hospital regularly to be treated for Cystic Fibrosis, but I am currently experiencing considerable chest pain, of a sort not typical of my illness.”
For those who do not know anything about Cystic Fibrosis, it is a protein mutation that causes a number of symptoms, mostly in the respiratory and digestive systems. In short, the lungs are unable to rid themselves of bacteria as efficiently as normal lungs. This leads to frequent infections and subsequent scarring. In turn, lung function, over time, is lost. The digestive system faces similar difficulties. Unable to break down complex nutrients on its own, most folks with CF require supplemental enzymes to digest their meals. Without these, one would eventually fall to malnutrition. CF involves other complications as well, but the two mentioned above tend to be the most significant and pervasive.
The staff acknowledged my statement by asking standard medical questions. They presented me with a few papers to sign – simple treatment permission forms. I was taken into the ER proper by wheelchair and given a room. My attendant assured me that a nurse would be with me shortly. True to her word, a nurse arrived and asked me to remove my coat and shirt. I did so and was given a hospital gown to wear. I was allowed to keep my pants.
The ER, like everything else, is more dramatic on television. Scrubs alone featured patients that hear musicals, turn orange and (with extreme, tongue-in-cheek misogyny) smack a female doctor’s behind. The real ER is not like this. It is, hopefully, quiet. It is methodical. There is a lot of waiting. Multiple members of the medical staff ask the same questions. These patterns begin to create a temporal anomaly. I had a quick ultrasound and x-ray of my chest. These two things alone took hours to happen, though the procedures themselves took no more than several minutes. The rest of my time was spent trying to stay warm and breathe as normally as I could. At this point, the constant pain had begun to tire me. I was placed on supplemental oxygen when my blood levels fell to 87%.
I was given intravenous Levofloxacin once the x-ray revealed a considerable mass of pneumonia in my right lung. Unfortunately, my blood vessels began to redden through my skin and swell, a symptom I knew would force the nurse to stop the medication. Emily rushed into the hall toward the nurse’s station and informed them of my reaction. The nurse stopped the med and administered intravenous Benadryl. Never before had I received such a high dose of it so quickly. Almost immediately, I felt the disorienting effect of the drug.
“You okay?” Emily asked.
“Yeah,” I said.
I wasn’t lying. I was sure I’d be fine, but my head felt like a bowling ball. It took effort to sit up straight. It felt like my brain was sloshing around in my skull if I turned my head too quickly. I laid down, hoping the drug would knock me out and allow me to sleep through the discomfort. This is the part of my visit I remember least clearly.
I slept, I think, and I believe my fiance did too. In the morning, a doctor came into my room to ask me questions. I did not wake up, or couldn’t, so Emily spoke to him in my stead. She had a bad feeling about the encounter. The doctor knew very little about Cystic Fibrosis and did not ask many questions about it, which suggested to her that he thought it unimportant.
After about twelve hours in the E.R. I was moved to an in-patient room on the third floor. As the medical team pushed my bed into the room, my senses realized something was wrong and I became, for a moment, alert. There was another patient in the room. I told the nurses I could not be in the room and that I had to get out. They placed me in the hallway. I could hardly speak due to exhaustion. I knew I had to stay awake, however. The third floor staff member we dealt with shot a look of incredulity at Emily, as if to say “could you please calm him down or talk some sense into him? He’s being ridiculous.” Emily was incensed, but maintained her composure. She reminded the staff that I had Cystic Fibrosis and that hospital policy dictates that I be kept in a private room, away from other patients.
Emily called my mother, who works on one the hospital’s committees and has phone numbers for important physicians. She continued to argue with the floor staff as I drifted in and out of consciousness. I could not be placed in the room, nor could I go back to the E.R. To keep me in the hallway, though, was even worse. Any bacteria from any room could be floating in the hallway. I was at least provided with a surgical mask upon request.
Eventually, the staff asked me if I would be placed into the room upon removal of the other patient. They told me he would soon be moved for dialysis and that it was safe for me to be in the room. My fiance and I doubted this, but it was preferable to remaining in the hallway. I was moved into the room. A short time later, the other man was taken away.
Though barely awake, I remember Emily asking the staff if they would post a “contact precautions” notice on my door, in accordance with CF patient protocol, as well as tell the medical staff to wear masks, gowns and gloves when entering my room. The nurse said no – something about “not being how they do it on the third floor.” Emily was furious, but contained herself. I fell asleep again.
I was next awoken by a pulmonologist- a Dr. Mullen, if memory serves. She was the first hospital staff member that day to speak to me in an accommodating and apologetic fashion. I immediately assumed that my mother must have finally reached a CF specialist in the hospital and that one or more of the persons responsible for my care was now in trouble. Dr. Mullen, I sensed, was the first step in damage control and reparation. She assured me that I would be alright and that everything was under control and so on and so forth. Dr. Mullen left and I went back to sleep.
I awoke again when the staff came to transport me to a private room on the fourth floor. I remember the relief I felt as I was taken into the ward. There were familiar faces, nurses that had taken care of me during previous visits.
“Hi, Jonathan,” said once nurse.
“We hear you’ve had a pretty rough time,” said another, smiling.
For the first time since I’d arrived, I felt my mind relax. My bed was moved into the room. The staff left. Emily bent over my bed. She brushed my hair back with her fingers.
“You doing okay?” she asked.
“Just tired,” I whispered, weakly.
“Go back to sleep, then,” she said, kissing my forehead.
I awoke that evening, still unable to breathe well, but the drowsiness and fatigue caused by the Benadryl had faded. Emily told me that a few people had come in to check on me. Normally, I would be awoken, so that the staff could speak to me, but in consideration of my circumstances I was allowed to sleep. Other than a visit from my mother, the rest of the evening was quiet.
I awoke Sunday morning to the usual hustle and bustle of an extended hospital stay. On the one hand it was nice to awaken to anything I could consider “usual.” On the other hand, it was still the hustle and bustle of an extended hospital stay.
Weekends at hospitals are slow. Most of the physicians go home and the hospital is lightly staffed. I was thankful, then, for the visit my CF physician paid that afternoon. He is friendly and easy to talk to, two qualities in a doctor that go a very long way. I knew he was livid about how I had been treated for the first two days of my stay, but he didn’t show it. He simply apologized and told me to let him know about anything I might need. I was prescribed Levafloxacin and Tobramycin for intravenous delivery. I would be scheduled to receive a PICC line tomorrow morning.
For those who do not know, a PICC (peripherally inserted central catheter) is an IV line placed in the upper arm. The cephalic vein, basilic vein and brachial vein are common choices. The line itself can be 25 to 60 centimeters in length.
Late Monday morning I was given a PICC. Typically, I am taken to Intervention Radiology and placed in one of the surgical rooms. This time, I was told, the procedure would be done in my room. The two people sent to place my line were quite nice. One of them, I discovered, was leaving for BlizzCon, a semi-annual game convention, in a few days. He told me the story of how he met his wife playing World of Warcraft. I told him about the games my fiance and I play together, such as Diablo III and Civilization V. After about twenty minutes, the line had been placed. I bade both my surgeons farewell.
PICC line placement often signals the “end of the beginning” when it comes to CF hospitalization. The first few days are filled with hospital staff deciding how one shall be treated. Questions are asked. In my case, many of them pertain to how I ought to be fed. As a CF patient, I am placed on a high-fat, high-protein, high-sodium, high-calorie diet – a dream diet, according to most. A nutritionist asks me what sort of snacks I will eat and if I would pair them with any of the high-calorie drinks on offer, such as Ensure.
The food at UMASS Memorial University Campus is terrible. It is demoralizing. It is repelling – and this is true of the healthy and unhealthy options. One would think that fried chicken tenders can only be so bad…but the hospital made me miss McDonald’s. I have imbibed some terrible concoctions in the name of health and research, but the hospital food wears on you. It beats you down – starts to sicken you at the sight of it. Vegetables drained of color and nutrients, meat made so soft that it falls apart at the touch – not in the sense that it “falls off the bone.” That would be lovely. Rather, it was as if the molecular integrity of the food had been blasted by the heating domes it sits under – a turkey breast transformed into cat food, as if by magic.
With the PICC line placed and my diet taken care of, the routine begins. I’ll start with the morning. Mornings ought to feel like beginnings, though they lose this attribute in the hospital. I seldom awaken of my own accord, usually due to a poor night’s sleep. In the early days of my stay, I was often woken before 6:00am to give blood. Beginning the day with a needle in one’s arm does little to foster a sunny disposition. On the other hand, it builds pain tolerance and patience – taking our heavens with our hells and all that. By 8:00am, I have seen the cleaning staff at least once, the food staff and at least one medical student or intern. All of these visits are unwelcome when one is exhausted. The interns and students are particularly frustrating because I know their visits and my answers to their questions do little to change my care. They visit me so that they can practice being doctors. I do my best to view it as an opportunity to help. On the more trying days, I do not always succeed. I have never shouted or lost my temper with the students, but when my patience wears thin, I have asked them, somewhat tersely, to leave or return later.
My next visitor, around 9:00 or 10:00 in the morning, will be someone from the Respiratory Department. They are the folks I least enjoy, though not because they are unpleasant or mean-spirited. Their job is to make me do a number of treatments and therapies a few times a day. The most uncomfortable of these treatments is the forced inhalation of nebulizer saline. A nebulizer is a medical device that turns a liquid medication into a mist that be inhaled directly into the lungs. It does this using compressed air, oxygen and ultrasonic power. It is a fascinating technology, but I do not enjoy inhaling salt water through it. Its sole purpose is to agitate my lungs and force me to cough.
Once a day, I receive a visit from my attending Cystic Fibrosis specialist. The time varies, but it is rare that I do not see him. His visits tend to be the most affirming or discouraging part of the day, depending on my progress.
With this routine established, the challenges begin – enduring the regiment. Few of the procedures I undergo in the hospital are terrible on their own. It is the repetition that gives them teeth. Having my blood drawn at four in the morning is fine, but four or five days of this becomes aggravating. Worse, it can run in opposition to the stated goals for my stay, one of which is plenty of sleep and rest. The annoyances and disruptions are small and frequent – troublesome trifles. In this way, extended hospital stays feel rather like a condensed version of life outside it. Feelings such as cabin fever, restlessness, boredom, a lack of privacy and so on, set in quickly. The same alarms sound all day and everyday, signaling that a medication is complete or that another patient is in distress. One can only do so much about loud neighbors in a hospital. Most of us have, no doubt, felt all these things at some point. Our jobs may be repetitious and tie us to a particular location. Haven’t we all tired of seeing the same walls, reading the same memos, opening the same bills and doing the same drudgery, day after day?
These struggles are magnified in a hospital. On the other hand, this intensifies the lessons for dealing with these struggles as well. I study martial arts in my evenings and I am fortunate to be under the guidance of an excellent teacher. In the dojo, there is an emphasis on the importance of being alert and mindful from moment to moment. It is easy to take time for granted, perhaps because of how we measure it. Practicing in the dojo and being exposed to techniques that – in the hands of someone with foul intent – can seriously injure or kill, changes one’s view. Many of these techniques, if one is skilled, can be done in mere seconds. That window is all that is needed for a life to end or change forever. Safety, whether real or imagined, can lull us into forgetting this.
So much of what goes on in the hospital feels like nearly perfect repetition. Upon closer inspection however, we realize that nothing is truly repeatable. The first time only happens once and the same applies for the second and third. Every attempt is different. It must be, else we could not learn. Something is changing, even if we cannot see it. Consider even your own body. Its cells die constantly and new cells replace the old. In one sense, the you that existed eight years ago is gone. On a molecular level, you have been almost completely replaced by a new you.
This is the sort of thinking and attentiveness that helps an extended hospital stay. Every day begins to feel the same. When hour after hour passes by in the same room. The whine of old machines, the alarms, the nurse’s intercom – all of it grows more irksome, if you let it. The interruptions throughout the night disrupt sleep, shortens\ing one’s patience. I try to be courteous, but one nurse pushed me to speak up. She was my night nurse for several evenings in a row. When checking on me in the middle of the night, she would turn on all the lights in the room and make far more noise about it than seemed necessary. She is not required to do this.
Better nurses use small flashlights to check equipment or my vitals, leaving the lights off. The best of them are almost silent. Not this nurse. Once again, all the lights turned on at once. I awoke abruptly
“Turn the lights off, please,” I said, frustrated.
“Oh, you don’t want them on?” she asked.
“What? Were they on before you came in here? Of course I don’t want them on. I’m trying to sleep.” This did not happen again, thankfully.
These visits are excellent opportunities to toughen oneself. I once opted to have my PICC line inserted without any numbing agent. I could feel the scalpel’s cut and the harsh press of the the needle as it punched through the muscle, clearing the way for the catheter. On another occasion, I watched my own biopsy. Of course, the medical staff thought me strange for making such choices. No one truly worries, though. I have an excellent reputation as a patient.
Naturally, a stay in the hospital is not entirely unpleasant; I do not wish to mislead. Most of the staff do their best to make sure I am comfortable. Some even go beyond what is required of them. One nurse did her best to make virgin versions of mixed alcoholic beverages for Emily and me. She even put little umbrellas in the Styrofoam cups. I don’t know where she got them, but it was adorable nonetheless.
Emily spends as much time with at the hospital as she can, often leaving only to work or buy groceries. She gladly does anything she can to help. Even after several years together I am still, occasionally, made uncomfortable by how much she will do to make my stays easier.
“Do you need anything?” she might ask.
“No. I’m just getting myself a drink,” I say (there are mini refrigerators in some rooms).
“I’m right next to the fridge. I can get whatever you want.”
“No, that’s okay, I can do it myself.”
“I know you can, but you’re hooked up [to the medicine pump]. Just stay there, I got it.”
I usually let Emily help, though I tend to reach a point at which I can’t allow her to do anything else for me. I know she doesn’t agree, but I cannot help but see the situation as somewhat absurd after a time. She is my fiance, not my maid. I worry that I am taking advantage of her or asking too much. She tells me such thoughts are silly and that I am over-thinking. Overthinking is a weakness of mine, so she is likely right.
Writing and reading help pass the time as well. I often catch up on books I meant to read, or pieces that I meant to polish. The laptop I have can play older games on it, a few of which I can play with a friend through the hospital’s wireless network. I can talk to friends with programs like Teamspeak, which makes the whole affair a bit less lonesome.
Many folks are familiar with short hospital stays – anything from one to three days. Two or more weeks is different, or it feels different, but I have spoken of time already. Perhaps it is the hospital’s disruption of outside life that makes one more sensitive to time’s flow. The way we speak of short, unusual experiences shows this. Time seems to stretch out before us during times of test and trial, but is it not passing normally or even “quickly” for someone else just one mile away from you? For most of us, this kind of perspective is difficult, because most of us sense only what is immediately around us. Out of sight, out of mind. By practicing focus and paying keen attention to what occurs at the edge of one’s perception, I believe people can extend those boundaries, for if they exist at all, they are amoebic, not rigid. They are organic and natural, not mechanical. A computer cannot be made more powerful by running programs that tax it, but the body and mind can be strengthened in this fashion. Believing this can radically alter how one sees trial and tribulation.
The greatest minds in our history have often encouraged us to see challenges as opportunities. Even Edison – a scummy, unscrupulous man – understood that his failures were not failures. He learned many ways not to do something, which led him to understanding how to do it. Failure is only failure if one gives up; otherwise, it is refinement. Nobody arrives at their intended destination instantly. Literal steps must be taken to get there and nobody views these steps as failures. It would absurd if they did. The only way to fail is to stop walking and looking.
Consider Phil Connors in Groundhog Day. Phil literally lives the same day over and over again. Judging by the skills Phil possesses by the film’s end, this likely went on for decades. The one thing that can change is Phil himself. He remembers the days and what he did on them. Even being imprisoned in the same day for years on end, he manages to earn a medical degree and master the piano. This is why the wisest minds have always told us to be ready to learn at every moment. Every moment contains the potential to be a step toward enlightenment, redemption or triumph and only by taking the steps do we ever arrive.
Even in a hospital, with unchanging walls, surrounded by illness and even death, I can keep going. I can learn and grow stronger and help others. I can wallow in misery or improve the day of the medical staff by being as pleasant with them as I can be. Even if I am forced to, seemingly, live the same day over and over, I can endure. Only apathy is true death.