“You’ll feel a pinch, then a burn.”
Thick black frames slipping down his nose, James Berry, MD, brandishes a syringe before his pale blue eyes and flicks it with a beefy finger; a drop of anesthesia flits into the examining room’s cold brightness, but James’ eyes don’t follow it. He pauses, nods to his assistant, Olivia, then to his patient, Lewis—a stubbly man in his 40s sprawled belly-up on the bed’s tight plastic—and leans in, plunging the needle into a yellow splotch of iodine smeared on Lewis’ bicep. After wriggling the needle to administer the drug, James slips it out, hands it gingerly to Olivia, and waits for a circular blade in return: the key instrument for his 11:00 a.m. skin biopsy.
Nothing is wrong with Lewis’ arm, though—or at least not yet. What has brought this California native across the country to Massachusetts General Hospital (MGH) is something different, something that started as a twitch in his tongue, progressed to dysarthria, a motor speech disorder, and ultimately revealed a graver diagnosis: Amyotrophic Lateral Sclerosis—Lou Gehrig’s Disease, or just ALS for short. The most common of the five motor neuron diseases, ALS spurs rapidly progressive physical weakness. That can mean muscle atrophy, muscle spasticity, trouble swallowing, or, for Lewis (subject 58 of this particular clinical study), difficulty speaking. Lewis, James maintains, is a “slow progressor,” but his garbled speech reveals the harbingers of a condition that ends in respiratory failure and death for almost 90% of patients. That’s six, seven years for Lewis, tops, and there’s no telling to which region his dysarthria—a sign of neurological injury, James explains—will extend next.
But today, adjusting his brawny frame over a low stool and flashing a toothy grin that showcases two perfect dimples, James insists that Lewis’ prospects aren’t grim. The biopsy will yield fibroblast skin samples for scientists to analyze across the Charles River, at Harvard, where research teams are reconstructing motor neurons to investigate ALS but have yet to find a cure. Next week, right on schedule, James will meet with his team to discuss findings from tissue specimens, but for now, he’s tuned into Lewis. As Olivia hands James his circular scalpel—a glorified hole-puncher—Lewis’ wife, silent in the room’s far corner, flinches and closes her eyes. James, however, beams at his patient.
“The hard part really is over, so you won’t feel a thing,” he whispers, smiling.
James grinds the curved blade, attached to a beige peg, into the man’s arm, cocking his clean-shaven chin to indicate where Olivia must extract skin samples; she complies, hesitantly. It’s over in an instant, and with a father’s touch, James squeezes a wad of gauze thick as a diaper against Lewis’ arm, striking up a conversation to distract his patient from the blood seeping out from the padding and onto the floor.
“What do you do, Lew?” he asks, running his free hand through dark brown locks.
The man’s answer is unintelligible—Olivia, hearing him speak a sentence for the first time, blushes—but James knows what’s going on. He leans in, nodding.
“Water technology, huh?”
“Yeaa,” Lewis croaks.
“His start-up’s called Electropure,” offers Lewis’ wife from the background. “It’s in Orange County. So, when you read about it one day, you’ll remember us,” she adds, smiling, though her grin fades from her cracked lips seconds later.
“Orange County, huh?” James booms. “You know, my wife’s from right outside there, but ask her what growing up in the OC was like, and she’ll tell you—”
A knock interrupts him. Esther, a nurse, pokes her head in: they need James on a muscle exam. He straightens up and turns back, stool creaking under his weight.
“Of course—give me a second,” he says, refocusing on Lewis as Esther speeds off. “Well, you can stop hearing me blather on now. We’re almost there, and you didn’t even pass out,” he chortles. “Olivia will take over.”
As James strides out, waving to Lewis and his wife—who smile back—Olivia adjusts her hand over the bloody padding; her dainty fingers hardly fill the groove James’ hand has left behind.
Outside, scratching at a brown eyebrow as he winds down the dark hallway of MGH’s Neurological Clinical Research Institute (NCRI), James reasons to himself in a hushed voice: “Lew and his wife, they’re pretty used to this, so I can use a little humor in a visit. I have to tailor the way I deal with patients based on their attitudes, right?” James pushes open a heavy door with his palm. “And it mostly works. With Lew, it’s silly to mention that he didn’t pass out—he wouldn’t with such a noninvasive procedure—but any reason to smile’s a good one, I guess. There’s a lot of hope beyond the diagnosis, and people’s reactions to the disease are shaped in part by how I present it all to them.”
When James says people, he’s not just talking patients, either. As Unit Chief of the hospital’s ALS Multidisciplinary Clinic, appointed just last summer, James deals with not only those suffering from the disease—and their families—but also the doctors, nurses, and residents treating it, the researchers designing trials, and the legal bigwigs and pharmaceutical representatives from whom he must seek grants to fund studies. Though his clinic’s small, with only five doctors, three nurses, and ten research coordinators, James alone treats about 100 patients annually—and that takes a toll.
“All in all, ALS is tough,” he admits. “Even when it progresses slowly, treating it and organizing studies is complicated, and meanwhile, for patients, little things in life—picking up a jug of milk, or a child—are slipping way. It ends up affecting so many more than just the patient. I’m definitely balancing a lot right now with work—and my family.”
He pauses in the hall and pulls at each of his left hand’s digits, around one of which a silver band twinkles—a reminder of his wife, Ann, a clinical psychiatrist at Belmont’s McLean Hospital and, James adds, “the love of his life.”
“It’s funny, I guess: a neurologist married to a psychiatrist. We talk a lot about the science to both of our jobs.” James coughs and pauses to make one thing clear. “But we don’t really talk about individual patients or any of that. I don’t need to.” He stops again. “Yeah, it’s just about science, mainly, when we’re not busy with Brandon and Hannah.”
James’ eyes light up: Hannah Berry is two, and Ann gave birth to Brandon Berry just three months ago. Smiling goofily, he pulls out his iPhone to display their pictures.
“I wake up at 5:30, usually, to tend to them, and I try to be home by 6:00 every evening.” James pauses again, corrects himself: “I actually have to be home by then—Ann works later.” And there, at home in Charlestown, changing gauze after a skin biopsy gives way to changing diapers—hard to imagine, perhaps, for a man of James’ build.
Towering above six feet, James must duck to pass through some of MGH’s older doorways. His hair, scattered in brown ringlets that glisten as if wet with sweat, protrudes from behind his ears and curls over the collar of a blood-red shirt hugging his burly figure. Black corduroys swish as he walks, and his black clogs squeak with every step.
“Esther,” James shouts down the hallway after the petite brunette, who stops and turns around. “Will the next guy be ready for PT with Pat?”
“Yes,” she chirps. “I can get going on blood now, and then EMG can come after.”
“Okay,” James throws back. “Can we pull binders for patients I’m seeing today?” “Done: the next one’s ready in Room 1202 with Mr. Mallory and his CSF stuff.”
In MGH’s NCRI, acronyms rule for James and his staff. PT? Physical therapy, standard for many patients on clinical trials. EMG? Electromyography, a technique for recording electrical activity produced by skeletal muscles. CSF? A colorless fluid produced by the brain and monitored by neurologists for patients on drug studies.
“James is in total control of all,” Esther says. “How he juggles so much, with work that’s devastating, it’s crazy. He’s sensitive enough, but it seems not to eat him up.”
“There is a lot going on,” James adds, and the stress does show. He’s young, just 38, with less than a decade of formal medical experience, but gray strands peek through his curls and tickle the wrinkles etched around his features from when he’s smiled and frowned, laughed and sighed.
Indeed, James says that while he loves his job, it has always proven challenging—due in part to what he still describes, even after medical school, residency, and fellowship, as the “mysterious, complex, and slowly unfolding” field of neurology. James’ work today reaches the frontier of modern medical research, but having grown up in Illinois, he says neither college nor a serious career ever seemed too important. Even on his last day of classes as a Tufts undergrad, his path remained undecided until the Dean of Studies called him into the office with strange news: James hadn’t declared a major.
“I ended up having enough of the right credits to major in biology and minor in Chinese,” he says and shrugs, “but medicine wasn’t on my mind. When I finally looked into med school while teaching eighth-grade science in Oakland, California—fun but for the group discipline thing—I called a place in Berkeley with one spot left for an MCAT review class starting the next week, and I signed up. But that’s all I knew. I didn’t know any doctors, didn’t know how one chose a specialty, just thought, ‘Let’s give this a try.’”
Nine years later, equipped with an MD from the Washington University School of Medicine in St. Louis, James swerves through the NCRI’s hallway toward his second visit of the day—“used to everything.” He doesn’t let his work faze him, he says.
“And I love it,” he adds, exhaling before repeating, quietly, to himself: “Yeah, I love it. I mean, I decided to go into ALS pretty late in med school—after caring for some patients—but I do love it. At the same time, it’s hard.” He nods, seeming to convince himself. “They wouldn’t call it work if it wasn’t. So, you know, nobody, no matter what they do, goes to work every day feeling like they’re playing. That’s called play. You wanna do a good job, you have to work hard. Actually, it’s a fairly simple recipe.”
But a simple recipe, as James puts it, doesn’t translate to simple cases: no one, for instance, can quite nail down what’s wrong with Mr. Mallory, James’ next patient.
“You know, doc, down at Yale, they were ready to cut me open,” mutters the squat old man, perched on an examining bed that barely clears James’ knees in height. “And in New York, the doc just looked at me and said, ‘We’ll be seeing you again.’”
James’ guess at this point is chronic inflammatory demyelinating polyneuropathy—“Call it CIDP,” he laughs. The condition is less serious than ALS, but the old man still needs checkups to learn exactly what’s up. After the two exchange updates since last month’s visit, James positions Mr. Mallory for a routine muscle exam.
Routine is right: years of experience have perfected James’ craft—behind his furrowed brows, he notes meticulously and mentally every movement, twitch, irregularity he perceives while inspecting Mr. Mallory’s thin muscles and blotchy skin. It’s a strange sight: James, half his patient’s age and twice his size, squats across Mr. Mallory on a stool too small for his frame and demonstrates physical instructions in the chilly air.
“Put up your arms”—he mimes—“but don’t let me push down. What happened there?” James asks, squinting at a purple bruise under Mr. Mallory’s thumb. James frowns for a second, eyebrows buckled together.
“Squeezed it between loppers,” Mr. Mallory responds, surly. “I was gardening.”
James laughs, apparently relieved. “Me, too,” he offers, a smile breaking his concentration. “I was picking strawberries the other day. We have wild ones in my yard.”
Wrinkles in Mr. Mallory’s face soften; he, too, smiles. “You don’t say?”
“You bet,” James moves on. “I’m gonna move your thumb for you—just relax. Now put out your hands so I can check out your fingers.”
Pale and puffy, Mr. Mallory’s fingers flutter occasionally despite his efforts to keep them still. “They’re trembling,” he admits, unsteady, staring down at them.
“Yes, a little,” James says, also squinting at them. “Put them out, like this, and close your eyes for me. Take that finger and try to touch your nose.”
Mr. Mallory draws his digit back toward his face, pokes his cheek, and hurries to correct himself. James’ concern shows momentarily in his light blue eyes and the lines etched across his forehead but fades as he continues the exam.
Time for the rest of it: knees together, legs apart, shoes off, socks down, feet up (light purple and cracked, “they feel like dead limbs,” Mr. Mallory mouths, but haven’t deteriorated much since the last visit). With two fingers, James pulls the man’s right foot into his lap, reaching his other hand into a pocket to procure a shiny tuning fork.
“Tell me when you feel a sensation,” James commands, banging the instrument against the examining bed’s leg and holding the vibrating, twanging metal against Mr. Mallory’s toe. Ten seconds pass; the man doesn’t respond, so James retracts the fork, whacks it, a bit harder, against his own stool’s leg, and pushes it back against the big toe.
“Doc, I can’t feel anything. I’ve sorta been losing feeling there. That bad?”
Red in the face, James pulls back the fork, reaches his long arm to the floor, slaps the instrument there, and presses it back against Mr. Mallory’s flesh—to no avail.
“Doc, I said I still can’t—”
“Let’s move on,” James interrupts, dropping the man’s foot and pausing to readjust the examining bed: an accommodation for James’ height, he says. After a breath, he finishes up some final tests—puff out your cheeks and then stick out your tongue, he commands, demonstrating—and then instructs Mr. Mallory to follow him into the hall.
When Mr. Mallory tries to follow James’ instruction to walk on his toes, though, he totters and regains composure only by grabbing James’ thick thumb, extended for aid.
“Whoa, there, William,” James laughs, loosening up again and patting Mr. Mallory on the back. “Well, you might get a breathalyzer test for that one.”
Mr. Mallory laughs for the first time, doubling over. “For sure, doc.”
Supporting him back into the room, James sighs before explaining his conclusion: “Your symptoms are…a little worse. We’ll want to run another MRI before your next visit, but we’ll put you back on the same drug for now. If things progress, let us know.”
Mr. Mallory is quiet again, eyes glassy: “Thank you, Dr. Berry. Really, I appreciate it.” James smiles, walks him out; Mr. Mallory disappears in the hall.
“I hate to say it, but we’re still not totally sure what he has,” James whispers, watching the man totter away. “Symptoms are worsening but mixed. I do think it’s CIDP, not ALS, but we’ll wait, run every test to be sure. Some people say it’s a waste of dollars, but certainty is what I’d want if it was me. You have to look out for patients, have to keep trying, because you really don’t want it to be the worst. It’s awful, so awful, when it is.”
Several days later, before James’ last appointment of the afternoon and week, Olivia hustles to straighten out a trial binder for subject 669—beginning a study today.
“FUCK!” she pants, pushing strands of dirty blonde hair behind her ears. “I’d totally forgotten about this visit when James called saying there was a patient here. I’m an asshole.” She shakes her head and rubs her right temple with a pinkie. “And, like, James is too nice to ever yell at anyone, so his disappointment weighs so much more in my heart. That’s the mark of a good parent—or doctor, I guess—when they can make you feel guilty without laying a hand on you because you respect them so much.”
Having properly arranged the materials, she takes a breath, heaves the binder—heftier than an encyclopedia—under her arm, and heads out of her office to find James.
“With this job, I don’t how he keeps such a calm face,” she says, biting a nail on her free hand. “Like, last month, he was giving a lumbar puncture to this one patient, the CFO of a huge bank—a very powerful woman totally paralyzed—and she couldn’t stop sobbing. She died, like, days after she came in, and that got to all of us, but James? He’s professional. It’s a fine line between becoming desensitized to it all so you don’t carry it home and being sensitive enough to engage with patients without getting worked up.”
She adds, whispering, “I’m headed to med school next year, but I’m not coming back here after—I can’t do it, can’t take it, even if James can.” Noticing him outside the examining room’s door down the hall, Olivia goes silent, rushes to hand him the binder, nods apologetically, and scurries off. He nods back to her but says nothing.
James checks his watch, frowns, and clears his throat before seizing and torquing the handle of Examining Room 1222; the door flies open. From the far window, pleated rays of light seep over a bleak interior—a grey examining bed, an empty black gym bench reserved for physical therapy, a red biohazard vat propped in the far left corner and diffusing an acrid odor into the sun’s glare. Hunched in a chair among the equipment, a scruffy man cocks his head toward the doorway and reaches out a hand in James’ direction, fingers crumpled and gloppy like melting wax.
“Good afternoon,” James projects with a strained smile, grabbing the man’s hand as he would an old friend’s but letting go a second after. “How are things, Rob? You were in last week, I believe, or before?”
“Before,” Rob corrects James. “Last week, I was at the top of a mountain.”
“Right, you were going on vacation,” James remembers, distracted, fumbling through the man’s binder for Rob’s latest file entry. “Was it…was it great?”
Rob smiles. “I did some snowboarding, you know, didn’t break any bones—”
“Any falls, though?” James cuts in, still leafing through the binder, ready to mark down any physical injuries, circumstances, crises that the trial’s report form necessitates.
Rob shakes his head. James flashes a smile, forces a laugh: “Well, we wouldn’t mark those falls, anyway, on the trial form. There’s a section for cause of falling, and we would've had to mark ‘other.’ Snowboarding’s not an option,” he adds with a fading grin.
Rob doesn’t respond and fakes a smile; James coughs and gets down to business.
“Any questions about the study?” he asks, visibly less comfortable in the silence.
“I read all the stuff over.” Rob yawns. James repositions himself in his chair.
“Okay, well, what we’re gonna do then is see how you do on the study drug for the next week. Some people experience dizziness—usually, it’s mild—but we’ve had other people who after the first week say, ‘Look, I feel pretty crummy,’ and we tell them they might want to switch studies. We’ll see how it goes.”
Clearing his throat, Rob pipes up: “I’m still getting a lot of spasms, here and there, you know, in my hands.” He gulps. “Is the drug gonna target stuff there, or—”
“Not specifically,” James cuts him off. “Tough thing is, we can’t anticipate that the drug’s going to go one way or another. We’ll see how the week goes, and hopefully it’ll go great, and then next week we’ll get you started officially. Any other questions?”
“Nope. So, I’ll just hang around for the blood work?”
“That’s it. Good to see you,” James adds, getting up and reaching for the door. He turns the handle the wrong way on his first try but strides out after trying again.
Rushing back to his office to update Rob’s electronic files, James says to himself, “It’s awful for those who still can’t come to terms with it, even after years.” James shuts his eyes for a second. “And Rob’s a slow progressor—don’t get me wrong—but you have to distinguish slow progression from no progression. Can you believe it? He was a businessman, you know, with kids—who are grown, I think, but still kids. And soon…”
James shakes his head, trails off, sighs, and heaves open his office door at the end of the hall, right beside the elevators and an adjacent Emergency Unit. “Ignore the pigsty,” he apologizes, blushing and gesturing vaguely at his surroundings within: crusty Dunkin’ Donuts cups, scattered patient files, crumpled notes, ratty mouse pads, dusty empty photo frames. It’s a small room; James makes it to the lone window in two strides.
“The way I look at it all, though, is that I’m not giving anyone the diagnosis,” he reasons. “That’s like giving them the disease. I’m just letting them know, transferring the news so they can get a hold on it, start what little treatment there is, right? With so much uncertainty, it’s a lot to handle. But I’m out of here—every day, before 6:00, no question, for the kids—but still, it’s awful. Sometimes, I think I never really knew what I got into.”
He yanks at the blinds, which part to fill the small space with gray light. Across the window, a hulking skyscraper blocks what’s left of the day’s sun, its expansive panels reflecting the steely buildings of MGH’s campus back into the room’s darkness. From his office, James can’t see much beyond the building and into Boston, but he can examine the hospital’s boxy reflection in the fading day, trace its bulk from behind thick glass.
It’s 5:53 p.m. James stares out the window, runs a finger along it, and sighs.