The Most Unspeakable Terror

When a fit-as-a-fiddle marathoner collides with a near-fatal bout of pneumonia, he finds that getting back on his feet takes far longer than he had imagined. In fact, his recovery calls for more fortitude, emotionally and physically, than a grueling road race.

By Jonathan A. Stableford

They removed my breathing tube just one day after I woke up from an induced coma that had lasted two weeks. I understood vaguely what was about to happen. My room in the ICU suddenly swarmed with doctors and nurses. One of them asked my wife and daughter to leave for a few minutes, saying, "This might not work. If we have to reinsert the tube, it's not something you would want to watch."

I had emerged the previous morning from a fortnight of unconsciousness feeling utterly confused. I awoke to the sound of a nurse sweeping open the curtains at the door of my room. As I looked out through the doorway onto the ICU's central nursing station, I heard my nurse greeting the other patients in turn. I had no idea where I was. I felt like a child in some strange summer camp.

Some time later that day I awoke again. This time, I slowly gathered I was in a hospital, as the people leaning over my bed explained that I needed to undergo a breathing test. All I really understood was that they would leave me alone and monitor how I did from afar. A test? I wanted to perform well, of course. But how could I do that simply by breathing? I couldn't actually ask any of these questions, however, because the breathing tube prohibited me from talking.

So I lay alone for what seemed like a long time. In the distance, I could hear voices making plans for lunch, and these voices worked their way into a reverie. I became convinced there were several of us taking the test simultaneously and that we'd all been involved in a fire and inhaled smoke. If we passed the test, we'd be allowed to go out for lunch. My stomach felt empty, and a sandwich sounded wonderful. So I tried to inhale deeply, but each breath felt like I was drawing cold sand into my lungs. My gut churned. I had to go to the bathroom. Then there was a long silence. I was sure everyone else had left for lunch without me.

Disappointed and lonely, I slipped back into sleep and then awoke once more to see my wife, Cindy, and son, Jason, at my bedside. They explained that I had been asleep for two weeks while they anxiously watched and waited. As they talked, I began to dimly recall feeling very sick, coming to the hospital, and being told that I would be put to sleep so they could intubate me. Years seemed to have passed since then. But at that moment, what I wanted to do more than anything was to tell Cindy and Jason about the breathing test—about the injustice of being left behind when everyone else had left for lunch. But of course the breathing tube kept me from uttering even a single word.

Quickly, Cindy produced a piece of paper, wrote out the alphabet in blocky capitals, and asked me to point to the letters to spell what I was trying to say. I extended a shaking finger, but my coordination was so poor I couldn't even hit the right letters. Frustrated, I quit trying.

The next day, as the medical team prepared to remove my breathing tube, I was determined to succeed this time. Cindy and our daughter, Jen, stepped outside my room. In one easy motion, the tube popped out. I took one breath, then two. I could breathe on my own and immediately found my voice.

"Can I go home now?"

My question appeared to amuse the doctor leaning over me. "No, you cannot go home," he said.

"Why not?"

"You are a very sick man. You have a very serious pneumonia." He sounded irritated now rather than amused.

It would be two more weeks—a month in all—before I could go home. I spent a third week in the ICU, then one week on DHMC's medicine unit.

My illness had come as a total surprise, because all my life I had been unusually healthy. During my nearly 40 years as a teacher, I had taken only two sick days, many years before. And during the nearly 30 years that we'd summered on a Vermont hilltop, about 20 miles from Dartmouth, my only encounters with DHMC had been to go there twice for stitches. But my sister, Sarah, has been a nurse at Dartmouth-Hitchcock for 24 years; in fact, it was she who brought me in to the hospital on the day when it became clear I really was sick.

It was the summer of 2006, and I had been feeling just fine. In April of that year I had run my 25th consecutive Boston Marathon, and in June I had run the Mount Washington Road Race for the 14th time and finished second in the 60-to-64 age category. I'd been working hard all through July on a construction project at our Vermont house and got in good five-mile runs on July 23 and 24. On the 25th, a Tuesday, a scratchy throat made me decide to skip my daily run, but I still worked outside all day. By Wednesday, I figured I'd caught a summer cold, but even so I put in a full day. On Thursday, I was feeling weak enough to beg off working, but I urged Cindy to head as planned for a visit with Jen and her husband in New York. That night, July 27, my breathing became so labored I was unable to sleep. When Cindy phoned me on Friday morning, the 28th, I sounded so bad that she called Sarah and asked her to check on me. As soon as Sarah arrived, she whisked me off to the ER.

At the hospital, I was quickly intubated and given pressors, drugs to raise my blood pressure; paralytics, drugs to induce paralysis; and—when death seemed like a real possibility—Xigris, an intravenous anti-inflammatory reserved for cases of severe sepsis. I was suffering, I later learned, from pneumococcal pneumonia complicated by sepsis, which caused acute respiratory distress syndrome, or ARDS, as well as heart and kidney failure.

I had a dim memory of having been in the ER, in a cubicle teeming with doctors and nurses wearing masks and looking very worried, and of seeing behind one of the masks my Vermont neighbor Chris Lowrey. He is an oncologist and researcher at Dartmouth and rarely has cause to be in the ER. I recall him remaining in the background, almost a spectator, and his eyes were all I could see. But where I expected a nod of recognition from a friend, I saw, instead, deep concern.

When I emerged from the coma and gradually recalled all that had transpired, I believed I was the same fit though briefly ill man who had been admitted to the hospital on July 28. But to the doctors and nurses, I was a weak old man nearly felled by pneumonia. They saw stick-like arms instead of firm muscles. They saw a drawn face, wild hair, sunken and bewildered eyes, and the stubbled cheeks of the homeless.

In my mind, getting better meant going home, returning to my routines, and shaking off fatigue and disorientation by restoring the familiar. It meant powering through adversity with sure will.

But in the minds of my caregivers, getting better was much more complicated and driven by metrics. It had to do with white blood cell counts, oxygen saturation levels, muscle range, and independence from medication.

I wanted to go home, but I was anchored to my bed by lines bringing me medication, nutrition, and oxygen and by tubes taking away my body waste. I believed that I could simply rise and walk away, but I had no idea how long it would be before I would be able to even stand on my own. For a patient like me, sedatives and other medications, as well as the trauma of disease and lapsed time, can create a wavering line between what is real and imagined, between observed truth and hallucination.

In the end, it took me more than a year to come to the understanding I now have of what happened during my month at DHMC. If you have never emerged from a coma, you might naturally imagine the process being a little like waking from a dream during an afternoon nap—first, a fuzziness where ambient sounds are appropriated by your dissipating dream and then released, and next a progressive reclaiming of your senses as the stiffness leaves your body. There may be a little bit of lingering grogginess, but you are awake—ready, like Rip Van Winkle, to learn with wonder what you have missed.

But this was not my experience at all. After I awoke, I had some moments of vivid clarity—thoughts that were rational and shaded with perspective. But these moments were mixed with stretches of imagined comprehension—periods filled with fanciful and sometimes fearful thoughts, when I felt neglected and misunderstood. At the center of everything, both the lucid moments and the dreams, lay the real me—the man who never gets sick, who is an exercise freak, who holds a job with considerable responsibility during the academic year, who has a wife and two grown children. For nearly two weeks after I regained consciousness, I fluctuated between the real and the imagined, their proportions shifting toward the former as I gained strength.

Despite my lack of previous contact with the health-care system, I was a compliant patient. The breathing test after I awoke from the coma was the first hurdle I faced; I understand now that there was nothing I could have done to succeed or fail at that one. But soon there were tasks where I could do my part. From the start, I wanted to know the rules. My understanding was clearest in the final days of my hospital stay, particularly during my physical therapy sessions. The nature of physical therapy played well into my experience as an athlete. Most of my troubles as a conscious patient lay in between my emergence from the coma and my final few days as an inpatient.

Two days after I was extubated, I learned of two procedures I would undergo: they planned to extract some fluid from my lungs to test for the source of infection, and to give me a "swallow test" to qualify me to start eating solid food. As soon as I heard the plan, I was eager to begin. Of course, both tests needed to fit into a schedule that included other patients and other aspects of my own care. In my dreamy state, however, I imagined indifference on the part of the hospital. I knew my extubation had happened on a Saturday because that afternoon I enjoyed a visit with my whole family. But I lost track of time and thought nearly a week had passed while I waited for the two tests. I believed that the fluid extraction would provide a clear answer to what I needed to have to get better—a different antibiotic, perhaps—so when it seemed to be forgotten, I grew impatient. Then, when I learned that my swallow test had been cancelled because my ICU nurse thought I was too tired, I became furious. I was sure I was being neglected. I began to believe people were deliberately delaying my recovery.

Patients emerging from traumatic illness need help finding perspective, and for many people this comes through visits from family members. When Cindy or Jason or Jen appeared at my bedside, the experience was like a familiar spit of land becoming visible through the fog to a sailor out at sea. As they read aloud the get-well cards that had arrived during the two weeks I was comatose, and as I heard the murmurs of a Red Sox game on the television overhead, I gradually developed some context. But I learned that the perspective provided by family can be transient, that hellish fears can still lurk in the lonely hours between visits.

Patients also need help from caregivers to develop perspective and context—clear and repeated explanations of what is happening and why. When I think back now on my experience, I know everyone was trying to help me understand: "This shot will sting a little, sorry," or "You have been very sick, but you are making good progress," or "I am going to play the bongos on your back to loosen up the congestion." Yet even so, my first week of consciousness seemed disjointed and chaotic. I felt like I was sitting in front of a TV set while an invisible stranger clicked the remote control nonstop through the channels—it was all imagery and tone, without any sense.

I was probably luckier than most patients in having plenty of people around me who could help me understand what was happening medically. Cindy was persistent in asking my doctors penetrating questions. Jen and her husband are both physicians, and they spoke frequently with my doctors and interpreted their responses for me. And Sarah is not only a nurse at DHMC, but she works in the ICU.

On the day when I was fretting about the delayed tests and all the time that I imagined we had lost, Sarah drew a calendar on a piece of paper.

"Here is the day you entered the hospital," she said, pointing at one square. "Here is the day you woke up, here is your extubation," she went on, "and here we are today."

Suddenly I could see that what had felt to me like a languishing week was in reality just two days—and over a weekend. Still, I felt like I was the only one who really cared about what was happening to my body. When I was alone, I felt a haunting loneliness that approached paranoia.

The person who probably helped me most was a personal friend who happens to be a Dartmouth endocrinologist, Jack Turco. When he heard I had been admitted, he talked with Jen, doctor to doctor, about what to expect.

Then he appeared at my bedside a couple of days after I woke up, and he continued to visit every day until I was discharged. What he provided was the patience and concern of a friend together with the expertise and experience of a doctor. When he said, "You are lucky to be alive, Jon," he made me feel strong to have survived. When he told me my recovery would be longer and harder than I thought, he spoke with compassion.

Our connection had begun many years earlier through sports—we'd played on the same team in alumni hockey games—so I knew he understood how compromised I now felt. He told me about the knee replacement surgery he'd undergone a few years earlier, and how long and surprisingly hard his recovery had been. After just a few minutes' conversation, I had a clearer vision of what lay ahead and I was less uncertain, less afraid.

The drugs that had saved my life, but that had also been partly responsible for my confusion, gradually left my body. That fact, and daily visitors, helped me gain understanding about what was real and what was not.

Strange dreams, however, still troubled my sleep. The most persistent ones began with me in a hospital bed but then usually involved a journey of some sort away from the hospital—sometimes an escape and an effort to find my way home, only to be discovered and brought back by amused doctors and nurses. In several dreams, I had been transferred to a remote, rural hospital—just a house, really, equipped with hospital beds. My family had no idea where I had gone, and I thought I was being warehoused. One afternoon I awoke from a dream so vivid that I asked my nurse if I had heard correctly that I would be discharged later that afternoon. She laughed—not unkindly—and said there were no such plans. Even when I was fully awake, the remembrance of these dreams haunted me with their lurid details. I soon knew they weren't real, but they still seemed to mean something.

Yet even as I managed to push the bad dreams and hallucinations further and further back in my mind, I remained deluded about the damage inflicted upon my body by illness and by weeks of forced inactivity. In the middle of my third week in the hospital, my physical therapist announced that it was time to get me out of bed. The day before, the tubes to take away my body waste had been removed. Although I had not yet tried to get out of bed, I believed it would be no different from getting up after an enforced nap as a child—a joyful release back to activity. A day earlier I had argued with my wife about attending a wedding at the end of the week. "You can't even walk," she reasoned. My reaction was anger that she had so little confidence in my growing strength.

As it turned out, merely getting out of bed involved a great deal of help. When I finally stood, on trembling legs, it was possible only because my physical therapist and I were holding one another in a bear hug. On a count of three, we pivoted and I sank into a so-called "cardiac chair," where I spent the next few hours. To get back in bed, I needed the help of three people.

How could I have been so wrong about my condition? I'd thought my recovery would be like getting better after a bad cold—a little breathlessness and maybe achy legs during runs for a week or two as I got back into shape. I was stunned by a degree of weakness I could never have imagined.

A day later, I took my first steps. It was a round trip of 30 feet, and I required the support of three people, a walker, a portable canister of oxygen, a machine to measure my oxygen saturation, and a chair in case I collapsed en route. By the time I got back to my room, I felt as weary as if I'd run a marathon. The next day I was ready to try again, and this time I proudly doubled my distance.

By this point, I realized I wouldn't be able to return to school in time for the start of the academic year. But even as I made plans during my last week in the hospital to hand off my classes to colleagues, I continued to misjudge my strength and ability to rebound. It would take another month of slow recovery during September, at our Vermont summer home, before I truly understood what a long process it would be to regain control of my body.

I also began, during my final week and a half in the hospital, to understand the insult the illness and treatment had inflicted on my brain. Early on, when I still hoped to be back for the opening of school in Massachusetts, I decided to compose a letter to my colleagues in the English department, which I then chaired. Cindy tried to dissuade me, but when I insisted she brought my laptop from home. I booted it up, my head brimming with important ideas, but as the cursor blinked on the blank screen, my thoughts fled.

A few days later, as Cindy left my room to get some lunch, she handed me a newspaper opened to a puzzle she thought I would enjoy. I stared at it as helplessly as I had at my laptop screen. On the table near my bed lay a stack of books brought by thoughtful friends, but each time I opened one, I couldn't make my eyes focus on the page.

But finally, during my last week at DHMC, I was able to begin keeping a journal. At first all I could manage was writing a single sentence several times a day. I dated each entry with the hour as well as the day, and gradually the entries grew longer and more legible. My mind cleared further, and during my final days in the hospital I was at last able to read when I couldn't sleep at night.

After I was discharged, I continued to write in the journal every day for another month. Today, when I read the sequence of entries, I can see not only the gradual return of a mind but also the emergence of a man deeply affected by the experience. I began writing the journal on an intern's encouragement. He knew I was a teacher, and, he said, "People need to read about this." As he spoke, he swept his hand in a semicircle to encompass the whole hospital. "Write about this," he said.

So what is there to say? I felt frustrated by the occasional misunderstanding of—and, rarer, disregard of—the real me. But my doctors and nurses were focused on treating my illness. When they interacted with me, they aimed their words, understandably, somewhere between the delusional me and the rational me—never quite connecting with the real me.

But how could they? Even I couldn't see myself as I truly was. At one point, for example, I believed I would be discharged at the end of my third week in the hospital and would be able to run a few light miles that weekend. In fact, it was four months later, in December, before that was possible.

In the time that has passed since my illness, now years rather than months, I have come to understand that my essential self, the real me, began to emerge the minute I awoke from my coma. Beneath the delusions, the dreams, the infirmity, the stubble, was someone fighting to stand on his own, to help his caregivers bring him back to good health. I have come to believe that this real me is something like the soul. It is what remains when an illness suddenly strips away good health and personal history. But it's invisible to those treating the illness unless they look carefully, and it's often obscured even from the patient himself.

There were moments in the hospital when I recognized only a faint flicker of this soul, so how could I expect the doctors and nurses to see it? Nonetheless, no matter how wasted a patient is, there remains an essential self he desperately needs to hang onto. And if he is to recover in a timely and effective way, he needs to believe that others see that essential self, too.

I now think that looking for this is key to healing the very sick. It will never supplant medicine's therapeutic arsenal. I could not have survived without the brilliant, aggressive care I received. I know I was lucky to have so many important pieces in place when I fell ill. That cannot be the case for every patient.

At one point near the end of my third week in the hospital, internist Ed Merrens explained to me, "When you came to the hospital, we took control of your body. Now, we are going to give it back to you."

Only by relinquishing myself to the experts was I able to survive. But once I did survive, I needed to be seen and understood so I could begin to really recover.

My recovery has been nearly total. There was a little permanent damage to my lungs, so I have to be careful if I get a chest cold. But through running and weight-lifting, I have regained the body I lost during all those weeks in bed. In the fall of 2008, Dr. Walter O'Donnell, the Mass General pulmonologist who has monitored my return to health, looked up with a warm smile from the results of a breathing test I'd taken an hour earlier and said, "We just don't see results like this."

Even so, I don't run many races these days. But I did mark my recovery by doing the grueling Mount Washington Road Race again the next year, in June 2007. The 7.6-mile course has been called "sadistic" for its vertical rise of nearly 5,000 feet. I finished further back than I ever had. But it may have been the most satisfying race I've ever run.