Proof of Heaven: A Neurosurgeon's Journey into the Afterlife

17. N of 1

It was Thursday when my doctors determined that my particular strain of E. coli didn’t match the ultraresistant strain that, unaccountably, had shown up in Israel just at the time I’d been there. But the fact that it didn’t match only made my case more confounding. While it was certainly good news that I was not harboring a strain of bacteria that could wipe out a third of the country, in terms of my own, individual recovery, it just underscored what my doctors were already suspecting all too clearly: that my case was essentially without precedent.

It was also quickly moving from desperate to hopeless. The doctors simply didn’t have an answer for how I could have contracted my illness, or how I could be brought back from my coma. They were sure of only one thing: they did not know of anyone making a full recovery from bacterial meningitis after being comatose for more than a few days. We were now into day four.

The stress took its toll on everyone. Phyllis and Betsy had decided on Tuesday that any talk of the possibility of my dying would be forbidden in my presence, under the assumption that some part of me might be aware of the discussion. Early Thursday morning, Jean asked one of the nurses in the ICU room about my chances of survival. Betsy, on the other side of my bed, heard her and said: “Please don’t have that conversation in this room.”

Jean and I had always been extremely close. We were part of the family just like our “homegrown” siblings, but the fact that we were “chosen” by mom and dad, as they put it, inevitably gave us a special bond. She had always watched out for me, and her frustration at her powerlessness over the current situation brought her close to a breaking point.

Tears came to Jean’s eyes. “I need to go home for a while,” she said.

After determining that there were plenty of people to continue my bedside vigil, all agreed that the nursing staff would probably be delighted to have one less person in my room.

Jean went back to our home, packed her bags, and drove home to Delaware that afternoon. By leaving, she gave the first real outward expression to an emotion the whole family was starting to feel: powerlessness. There are few experiences more frustrating than seeing a loved one in a comatose state. You want to help, but you can’t. You want the person to open his or her eyes, but they don’t. Families of coma patients often resort to opening the patient’s eyes themselves. It’s a way of forcing the issue—of ordering the patient to wake up. Of course it doesn’t work, and it can also further damage morale. Patients in deep coma lose the coordination of their eyes and pupils. Open the lids of a deep coma patient, and you’re likely to find one eye pointing in one direction, the other in the opposite. It’s an unnerving sight, and it added further to Holley’s pain several times that week when she pried my eyelids open and saw, in essence, the askew eyeballs of a corpse.

With Jean gone, things really started to fray. Phyllis now began to exhibit a behavior I’d also seen countless times among patients’ family members in my own practice. She started to become frustrated with my doctors.

“Why aren’t they giving us more information?” she asked Betsy, outraged. “I swear, if Eben were here, he would tell us what’s really going on.”

The fact was that my doctors were doing absolutely everything they could do for me. Phyllis, of course, knew this. But the pain and frustration of the situation were simply wearing away at my loved ones.

On Tuesday, Holley had called Dr. Jay Loeffler, my former partner in developing the stereotactic radiosurgery program at the Brigham & Women’s Hospital in Boston. Jay was then the chairman of radiation oncology at Massachusetts General Hospital, and Holley figured he’d be in as good a position as anyone to give her some answers.

As Holley described my situation, Jay assumed she must have been getting the details of my case wrong. What she was describing to him was, he knew, essentially impossible. But once Holley finally had him convinced that I really was in a coma caused by a rare case of E. coli bacterial meningitis that no one could explain the origins of, he got started calling infectious disease experts around the country. No one he spoke to had heard of a case like mine. Going over the medical literature back to 1991, he couldn’t find a single case of E. coli meningitis in an adult who hadn’t recently been through a neurosurgical procedure.

From Tuesday on, Jay called at least once a day to get an update from Phyllis or Holley and give them feedback on what his investigations had revealed. Steve Tatter, another good friend and neurosurgeon, likewise provided daily calls offering advice and comfort. But day after day, the only revelation was that my situation was the first of its kind in medical history. Spontaneous E. coli bacterial meningitis is rare in adults. Less than 1 in 10 million of the world’s population contracts it annually. And, like all varieties of gram-negative bacterial meningitis, it’s highly aggressive. So aggressive that of the people it does attack, more than 90 percent of those who initially suffer from a rapid neurologic decline, as I did, die. And that was the mortality rate when I first entered the ER. That dismal 90 percent crept toward 100 percent as the week wore on and my body failed to respond to the antibiotics. The few who survive a case as severe as mine generally require round-the-clock care for the rest of their lives. Officially, my status was “N of 1,” a term that refers to medical studies in which a single patient stands for the entire trial. There is simply no one else to whom the doctors could compare my case.

Beginning on Wednesday, Holley brought Bond in for a visit every afternoon after school. But by Friday she was starting to wonder if these visits were doing more harm than good. At times, early in the week, I would move. My body would thrash around wildly. A nurse would rub my head and give me more sedation, and eventually I’d become quiet again. This was confusing and painful for my ten-year-old son to watch. It was bad enough that he was looking at a body that no longer resembled his father, but also seeing that body make mechanical movements that he didn’t recognize as mine was particularly challenging. Day by day, I became less the person he’d known, and more an unrecognizable body in a bed: a cruel and alien twin of the father he once knew.

By the end of the week these occasional bursts of motor activity had all but ceased. I needed no more sedation, because movement—even the dead, automatic kind initiated by the most primitive reflex loops of my lower brainstem and spinal cord—had dwindled almost to nil.

More family members and friends were calling, asking if they should come. By Thursday, it had been decided that they shouldn’t. There was already too much commotion in my ICU room. The nurses suggested strongly that my brain needed rest—the quieter, the better.

There was also a noticeable change in the tone of these phone calls. They too were shifting subtly from the hopeful to the hopeless. At times, looking around, Holley felt like she had lost me already.

On Thursday afternoon, Michael Sullivan got a knock on his door. It was his secretary at St. John’s Episcopal Church.

“The hospital is on the line,” she said. “One of the nurses taking care of Eben needs to speak with you. She says it’s urgent.”

Michael picked up the phone.

“Michael,” the nurse told him, “you need to come right away. Eben is dying.”

As a pastor, Michael had been in this situation before. Pastors see death and the wreckage it leaves behind almost as often as doctors do. Still, Michael was shocked to hear the actual word “dying” said in reference to me. He called his wife, Page, and asked her to pray: both for me, and for the strength on his part to rise to the occasion. Then he drove through the cold steady rain to the hospital, struggling to see through the tears filling his eyes.

When he got to my room the scene was much the same as it had been the last time he had visited. Phyllis was sitting by my side, taking her shift in the vigil of holding my hand that had been going on without a break since her arrival on Monday night. My chest rose and fell twelve times a minute with the ventilator, and the ICU nurse went quietly about her routine, orbiting among the machines that surrounded my bed and noting their readouts.

Another nurse came in, and Michael asked if she’d been the one who called his assistant.

“No,” she replied. “I’ve been here all morning, and his condition has not changed much from last night. I don’t know who called you.”

By eleven, Holley, Mom, Phyllis, and Betsy were all in my room. Michael suggested a prayer. Everyone, including the two nurses, joined hands around the bed, and Michael made one more heartfelt plea for my return to health.

“Lord, bring Eben back to us. I know it’s in your power.”

Still, no one knew who had called Michael. But whoever it was, it’s a good thing they did. Because the prayers coming to me from the world below—the world I’d started out from—were finally starting to get through.