Mercies in Disguise Page 2
Bill’s memory seemed to slip around this time as well. Tim had first noticed it ten years earlier, in 1988, at Sunday dinner at his parents’ house. He had been looking for something in the basement when he came upon an object from his childhood. Bill had fought in the Pacific—but one of his friends, who had fought in Europe, had given him a compass that he had snagged from a German general. It had a steel case that opened to reveal the compass; on the other side, there was a little mirror with the initials of its owner etched on it.
Tim would often bring this to his father and ask him to talk about the war, to tell the story of his friend and how he came to get his hands on that compass. That night, Tim cradled the little compass in his hand, carrying it upstairs to the kitchen. He proudly showed it to his father. Like a small child, he wanted to hear his dad tell the story one more time. It had been years since he had asked him about it.
But when Bill looked down at what his son was holding, he seemed baffled and muttered that he had no idea what Tim was talking about. Tim reminded Bill that they’d looked at that compass many times over the years. No, Bill shot back, he didn’t remember any of that. “I’ve been through several cases of burnout at work since that time,” he offered as feeble defense.
Tim sadly trudged back downstairs clutching the compass and replaced it on the shelf—it may still be there to this day. He was devastated and tried to find a logical reason for his father’s puzzling memory loss. Maybe it was depression, he thought. But what did his father mean when he offered that odd excuse? What was he telling Tim when he said “since that time”?
* * *
There would soon be more worrying signs of trouble.
The time Bill had been in a meeting at work and suddenly realized he had no idea what was going on. It was as if he had blacked out, yet he was fully conscious. This was the first signal that something was wrong, which he predictably kept to himself for a while. He didn’t want to worry anyone. He didn’t want to admit weakness. Eventually he told Merle, who kept it quiet for many years. Maybe it was nothing, she reasoned. It could happen to anyone with too much on his mind.
* * *
The day when Bill and Merle were out walking, a doctor who lived next door noticed that Bill was lagging behind, dragging his feet and walking unsteadily; he finally asked Merle if Bill was okay. He suggested that he do a physical exam. But when Merle brought Bill in, the doctor was confounded. Maybe a neurologist could figure it out?
* * *
The time Tim’s older brother, Mike, drove Bill and Merle to a neighboring town. They were picking up windows for a sunroom Bill was building onto the house. They’d emptied out the station wagon, leaving the trunk clear to transport the unwieldy sheets of glass. Mike carried them from the store to the car and then waited for Bill, who had always taken charge in these kinds of situations. But instead Bill just frowned at the stack of glass, unable to figure out what to do. He had the frustrated look of someone asked to solve a puzzle beyond his abilities. Mike cringed, trying to seem unconcerned as he loaded the windows into the trunk. “Something is wrong with Dad.” Mike was the first to say it out loud, to Merle, finally speaking the words everyone had been thinking.
* * *
Bill grappling in vain with a little package of crackers at a Sunday family dinner, fighting his mounting frustration. That crinkling sound seemed never to end as Bill tried fruitlessly to tear open the plastic with his trembling hands, his weak fingers, never saying a word to his family as he furtively worked away at the wrapper. The rest of the family—the four sons, the three grandchildren—silent, staring at their plates, not wanting to embarrass him, knowing he would not accept help. Finally Mike reached over and, without asking, quietly opened the package.
The family watched with sorrow as Bill lost coordination in his hands. His speech blurred. As one scary symptom followed another, it was impossible to avoid the unthinkable. Something terrible was happening. Bill became desperate for a diagnosis, started begging for help. Could no one figure out what was causing this? His son Buddy was a doctor. Maybe he could assist. Tim remembered those Sunday dinners when Buddy arrived with his family. Bill would usher him into the back bedroom, saying he wanted Buddy’s advice on what to do, how to get a diagnosis at least. But Buddy was at a loss.
* * *
And so, that same year—1988—when Bill’s symptoms had become so distressing, Tim and his brothers began ferrying their father from doctor to doctor. This went on for years as his disease worsened and they sought help in an ever-widening area: Hartsville, then nearby towns, then the Medical University of South Carolina a couple of hours away. But the answer was always the same—some glorified version of “I don’t know”—a strange illness with a relentless progression that made Bill Baxley stagger, grab chairs, tables, anything he could reach in the early stages when he could still walk. Eventually, it took away his ability to talk and to eat without choking. It humbled the proud man who never countenanced weakness. It was a disease like Alzheimer’s—but not. He may not have remembered the compass, but he still remembered who his sons were, what his wife meant to him, how it felt when he could walk and talk and eat. It was a disease unique to Bill Baxley, the doctors said.
There must be an answer out there somewhere, Tim thought. Though the local doctors had been empathetic, it was obvious they were not going to be able to help. But what about a place where doctors specialize in rare diseases, a major medical center where researchers study mysterious illnesses? The closest place like that was Duke University, 150 miles away. The brothers conferred: they were aware of just how grave a situation their father was in. The symptoms had remained subtle for quite some time, but now—nearly eleven years after that episode when Bill did not recognize the compass from World War II—he was no longer able to stand without assistance. Buddy was a family doctor; Tim was starting a residency in neurology. But so far, their combined medical training was not helping.
When Tim and Buddy explained to their brother Mike that they were hitting a wall, he offered to take their father to Duke. Mike knew it was not going to be easy to get his father there, given his condition, but he felt he had to try.
When Mike picked Bill up at his house on Tuesday afternoon, January 21, 1997, they set off in a cold, driving rain. Bill slumped down in his seat, his face ashen, and dozed off. As it turned out, Bill had sleep apnea so every few minutes or so, he would stop breathing in the midst of rattling snores. The seconds-long silence, following a loud snore, was terrifying. Mike kept swerving as he sped down the slick highway, accidentally pulling the steering wheel every time he’d reach over to give his father a shove, checking if he was still alive.
Every little mundane thing became an ordeal. Bill had to use a bathroom. Getting him in and out of the car and to a restroom along the highway was agonizing. When they finally arrived at their hotel, Mike exhausted himself just getting his father from the car to the lobby to the room. Still, as he later told his brother Tim, he harbored a hope that it would all be worthwhile.
The next morning, Mike dressed his father in an oxblood flannel shirt, khaki pants, and a fedora, put bright white socks and black slip-on shoes on his feet. He and Bill arrived on time for their appointment at the neurological disorders clinic. When they were called to go in for Bill’s exam, Mike helped his father rise from a chair and gently held him up as he walked into the exam room with tiny steps. He sat his father down in a chair, facing the neurologist. Bill sat rigid, his hands on his knees, his face stiff and expressionless except for his bulging, searching eyes.
The neurologist began to question Bill, who replied with effort, sometimes with just a single word in an almost inaudible voice as he laboriously struggled to speak. Bill tried to explain that in the last week he had become pretty much unable to walk unassisted, falling after a few unsteady steps. Then the neurologist asked Bill to try to cross his arms over his chest and stand.
He cannot possibly do that, Mike thought. He will tip over. He watched as his
father attempted to comply, arms crossed over his chest, bending over and struggling to rise. Bill moved only a few inches from his seat before he collapsed back onto the chair, listing to the side, his masklike face giving no sign of the panic he must have felt.
The neurologist sat impassive in his chair, doing nothing to help. Mike stepped in, hoisting his father up just before he fell to the floor.
When the neurologist asked Bill to walk back and forth in front of the wall, Mike jumped up, helping his father stand, supporting him as he tried to walk with mincing steps. The doctor continued to sit calmly in his chair—no look of sympathy to Mike, or effort to comfort Bill.
“He seemed to be so distant from the human tragedy in front of him,” Mike later explained to Tim. “He didn’t have that personal empathy or sympathy. He would have let him fall.”
Bill was stoic, never criticizing the doctor, never complaining. But Tim, who had followed Buddy by going to medical school and was now himself a doctor, was furious at what he saw as a major failing among those in his profession. Some doctors, he said to Mike, retreated behind a wall of dispassion when confronted with difficult-to-diagnose patients like their dad; he’d seen this happen before with his professors in medical school and occasionally among colleagues. As a student and then a doctor, he’d found it disturbing; as the son of a patient, he found it unacceptable. On top of it, Mike had made that long and difficult trip and to no avail. The expert at Duke was no more able to help than the local doctors. He even resorted to the by now all-too-familiar diagnosis: Parkinson’s mixed with Alzheimer’s. Their medical odyssey had come to a standstill.
* * *
The Baxley brothers—realizing they were likely not going to find a medical authority to guide them—felt compelled to do something, to find an answer. It was devastating to watch their father helplessly deteriorate with no authority figure in sight, no expert to guide them through these mystifying circumstances. The doctors who examined their father had only made his suffering worse with their breezy dismissal of his terrifying symptoms, with their clearly inaccurate diagnoses and lack of compassion.
* * *
Tim and Buddy—both medically trained themselves—decided they would have to take matters into their own hands.
The brothers conferred privately one day after Sunday dinner at their parents’ house, devising a plan. They would get some of Bill’s tissue and have it analyzed—or at the very least store it in case it could help someday to solve the mystery.
But what tissue? Bill had a neurological disorder, that was clear, so perhaps the first thing to examine would be the fluid that bathed their father’s brain. There was a remote chance that Bill had a condition called normal pressure hydrocephalus; they knew about it from their medical studies, but the neurologists they’d consulted had seemed uninterested—it took too much time to test for it and the chance that Bill had it really was remote. But Buddy and Tim had time for the test—Bill was their father, after all. They could make time. And the test would easily check for the condition, even rid Bill of his symptoms if he had it. The characteristic feature of that condition is what is called a magnetic gait, which means walking like your feet are sticking to the floor so powerfully you cannot lift them, as if there are magnets in your shoes and the floor is made of metal. In this instance, if a doctor removes about a third of the fluid from a person’s spinal column, the person is temporarily able to walk normally again, instantly. It was certainly worth a try, they agreed.
The two brothers explained their plan to Bill, who nodded with a blank expression, unable to talk, unable to question his sons but trusting them implicitly. Tim and Buddy drove their father to Buddy’s office, propping him up as he tottered up a ramp to the back door. Slowly, they made their way to an exam room, where they helped him onto a table. It felt strange—doctors do not treat their family members, doctors do not insert needles into their own fathers. But now it had become essential, they decided, that they be doctors first, sons second.
They dressed their father in a hospital gown then bent him over, baring his rounded back. Tim stared at the rail-like ribs protruding from his father’s sagging pale skin. His muscles were wasted; he looked like such an old man. He pushed these thoughts to the side, trying to be impartial, professional, trying to pretend the patient in front of him was not his father. He gave his father an extra dose of lidocaine, a numbing medication. Tim spoke to his father softly. “Dad, you are going to feel a little pressure in your back and maybe a tingle in your leg.” Then, gently he slid a long needle into his father’s spinal column. The fluid dripped out slowly, reminding Tim of what it must be like to tap a maple tree. Buddy left the room to care for other patients, and Bill, soothed by Tim’s gentle touch, fell asleep.
After nearly an hour, it was done. Tim had collected all he safely could—40 milliliters of spinal fluid—filling four long tubes. “Dad, it’s time to wake up,” Tim murmured, lightly nudging his father. “Let’s see how you are doing.”
He and Buddy turned Bill on his side chatting with him while they waited the requisite half hour before sitting him up. The concern is that patients can get a headache if they sit up too soon after losing so much spinal fluid. Then they helped their father off the table. They were hoping for an instantaneous change when Bill woke up, a sudden ability to walk, the troubling symptoms vanished. Unlikely, yes, but possible.
As soon as they got their father off the table and onto his feet, however, Buddy and Tim knew they had failed. No change.
They did not let on their disappointment. “Let’s go home and get some lunch and we’ll see how you do,” Tim said to Bill.
Now, at least, the brothers had a sample of their father’s spinal fluid. Tim had held the tubes up to the light, looking for any discoloration, which could be a sign of rampant infection or inflammation or bleeding. Nothing. The liquid was as clear as pure spring water. But perhaps something in that fluid, some protein or chemical imbalance, might hold a clue to the disease.
They were flummoxed about what the next step should be. They didn’t even know what test to request if they were to send it to a lab for analysis. They would store the fluid until they had a better idea of how to use it. They carefully placed the tubes in a freezer in Buddy’s office.
Some time later they had a new idea. Maybe, the brothers thought, Bill had a storage disease, a type of rare disorder caused when cells cannot rid themselves of certain substances—each disease involves a different substance. Like normal pressure hydrocephalus, storage diseases were part of their medical school curriculum. But the diseases were so rare that neither Buddy nor Tim had seen any patients with one. They knew it was extremely unlikely that Bill had such a condition, and they knew testing for it was a real shot in the dark, but they felt they had to try. So they decided to take a little plug of skin from Bill’s forearm and send it to the Medical University of South Carolina where it could be analyzed. The result would tell them if their hunch—their hope—was correct. Once again, Bill nodded his mute assent.
By that time Bill was near death, in the hospital with pneumonia. They worried they wouldn’t be able to get some skin before it was too late—so they lingered in their father’s room until 1:00 a.m., when all was quiet and no one else was around. Buddy dispatched Tim to stand at the door to be sure no nurses were lurking. He couldn’t bear to think how awkward it would be for a nurse to catch sight of Bill’s son—even a son who was a doctor—taking a piece of skin from his father.
As Tim stood watch, Buddy numbed a small area of skin on his father’s right forearm and removed a tiny slice, about a quarter-inch square. He covered the wound with a Band-Aid, and then he and Tim snuck out, Buddy holding a small sterile vial containing his father’s skin, floating in a chemical fixative that would prevent it from deteriorating. They sent it to the pathology department at MUSC. And they waited.
Weeks went by. Tim asked the pathologists if they had any results. They did not. Then Buddy called to ask. “We don’t know wher
e the biopsy is,” the pathologists finally admitted to the brothers. “We don’t know what happened to the skin.”
Nine years later, the university sent Tim a letter saying it had been found behind a storage cabinet and asking what he wanted them to do with it. By then, it was too late. Even if they had wanted to analyze the skin it would have deteriorated beyond repair.
* * *
“I remember his daddy walking through the plant. He had to hang on to the machines.” The woman’s words from the funeral haunted Tim. He thought of his own father—lurching through rooms, grabbing onto his sons for balance—before he died. He had to consider the possibility that whatever had killed his father wasn’t unique. His dad had lasted to the respectable age of seventy-three, but his grandfather had only been forty-nine when he died. Could it have been the same disease? It certainly sounded like it.
He thought of his three brothers, Buddy, Billy, and Mike. Were they all destined to die like their father? And what about their children? If it could pass from father to son—the way other traits like the famous Baxley nose and the mouth with that Cupid’s bow had been replicated from generation to generation—what might that mean, exactly? Was this written into his genes too?
2
“No Goddamn Bastard on Earth Has Ever Seen a Disease like This Thing”
The brain arrived in the mail one day, along with twenty vials of human serum. It was sent by Dr. Vincent Zigas, employed by the Australian public health service and stationed in the New Guinea highlands, to a lab in Melbourne, Australia. People were dying there, out in the remote rain forest, past the cloud-shrouded mountains, where few Europeans had ever been. The cause of death was a strange disease, the likes of which the doctor had never seen. The natives called it kuru. Probably caused by a virus, Zigas speculated. But he had no lab. Would the Melbourne scientists test the brain and vials of serum for viruses?