I. Null set
The first time I saw fear on a doctor’s face was also the first time I met with the physician who would become my permanent PCP. I’d come into the office—a neighborhood health center affiliated with a public hospital near Boston, Massachusetts—complaining of widespread numbness and some muscle weakness lasting approximately three weeks.
During those three weeks I had been turned away from a local private hospital twice, with firm instructions from the attending E.R. physician “not to come back unless [I lost] control of [my] bladder or bowels.”
I had in fact now “lost control” of my bowels—although I didn’t see it that way because my problem was not incontinence. I have not shit my pants, I reasoned, and therefore I will not return to the hospital.
This primary care doctor was the only one available at the health center the day I went in, and because I was approaching a nuclear level of anger I told the receptionist: “I really do not fucking care. I am seeing a doctor today. I’m not leaving until I see a doctor.”
I remember thinking: It doesn’t matter anyway. Whoever this fucking doctor is, I am going to fucking hate her. I don’t care.
In the examination room I prepared myself psychologically for a giant, screaming fight. I will probably hate this doctor, but she is going to fucking listen to me, I decided. My body was wound up, muscular, tight as a cat’s. Everything bristled. One way or another, this doctor was getting punched in the face.
In she walked, introduced herself (Hi—I’m Dr. B.), shook my hand—and did something astonishing.
Not because I “made” her listen—as I’d imagined I’d have to—but because she is apparently the kind of doctor who listens.
I told her that I could not feel my left leg or my right foot. I told her that I had been manually disimpacting myself for over a week.
In case you don’t know what “manually disimpacting” means: I had been using a latex-gloved hand to manually remove shit from my own ass for over a week. Yeah—that happened, in real life. The problem, I explained, was that I could feel when I had to go to the bathroom, but the muscle—whatever muscle it was—that would usually push the shit out was not working. Like trying to clench a fist and nothing happening. Like when you sleep funny on your arm and cut off the circulation. I was smart enough to understand that you cannot just leave shit in your bowels for days on end (having an R.N. for a mother means that you passively absorb some basic medical knowledge as you grow up), so I’d been strapping on gloves and, in my best show of clinical detachment, methodically extracting the shit with my right hand. Every day.
“I didn’t go back to the E.R. because the Attending was pretty stern and I don’t think, technically speaking, that this counts as ‘losing control of [my] bowels’ since I am not, like, shitting my pants…”
Dr. B. furrowed her brow in what I read as a silent disapproval of the anonymous E.R. colleague—the most exquisitely fleeting micro-expression of Wow, what the fuck?—before resuming the Neutral Doctor Face.™
“OK,” she said, “I’m going to need to do a rectal exam.”
She explained how this would work and asked that I lie on my side in a fetal position on the exam table. I did.
“OK, I’d like you to squeeze like you’re trying to hold in a bowel movement.”
I squeezed, knowing that I was squeezing but unable to actually feel anything, since that region of my body was completely numb.
“OK, you can start squeezing now.”
“Oh. Um. I am squeezing. I mean I have been squeezing for, like, 5 minutes. Since the first time you asked.”
This concluded the exam. I sat up and got dressed while she stepped out of the room to clean up.
When she came back, her face was the color of a starched bed sheet. I studied it carefully, searching. Professional still, but with a glimmer of something else in her eyes. Fear? Fear.
“We need to get you to a neurologist,” she said. “Now.”
The referral sheet read: ∅ rectal tone.
The neurologist was named Dr. K.—an Irishman who went on become an epileptologist at MGH. He asked my permission to include an intern in the exam, and I gave it.
The intern and I were exactly the same age: 27. She was going to become a Psychiatrist and, if memory serves, was in the last week or so of her internship.
Much of this exam remains a blur, but a couple of moments in particular are unforgettable.
When the neurologist tested my reflexes with a hammer, something strange happened. My left leg kicked up so high that it startled me, extending in front of my body at a 90-degree angle.
“Woah,” I said, caught off guard.
The intern and neurologist exchanged glances. Neutral Doctor Faces™, but their eyes communicated something I couldn’t quite parse. I studied them.
“Is that….” the intern started.
The neurologist’s response was understated but clear. He raised his right hand—palm flat—at her while dipping his chin in the briefest of nods: Yes—that is what we both know it is, but don’t say anything out loud right now.
This was a conversation made up of silences, pauses, beats. My eyes met theirs, quiet. We all knew something that no one was verbalizing.
I gave permission for the intern to try her hand at a lumbar puncture. On me.
Again I found myself on an exam table in a fetal position. Knees tight to chest. The intern and the neurologist sat side by side. I don’t remember who prepared the needle or inserted it. I don’t remember any pain or fear. I remember repeating in my head: knees to chest, knees to chest, knees to chest, knees to chest….stay still, stay still, knees to chest, knees to chest, knees to chest….stay still….
The intern was struggling to get the needle positioned correctly, and in the process it was brushing lightly against a bundle of nearby nerves known as the cauda equina, or “horses’s tail”—so named for its equine appearance.
I felt my body sizzle, every limb hot oil. Stay still-stay still-stay still-stay still….
I screamed. Not some girly scream. Not a whimper. A deep-bellied, powerful scream that expanded, projecting outward for rooms and rooms.
I felt electricity—some kind of pain I’d never felt before. It wasn’t stabbing or deep, throbbing or ripping, hot or sharp. It felt electric, frayed, shocked. I hallucinated wires, motherboards, joysticks. The pain was somehow everywhere and nowhere; all-consuming and non-specific. Again, I screamed.
The neurologist was calm and mentioned something to the intern about asking me where I felt the pain.
“Can you tell me,” she asked, her voice trembling, “where the pain is?”
I tried to assess where the pain “was.” There was no “was.” There were wires, cords, power sockets. Finally I shouted: “IT’S EVERYWHERE!” because it was.
I sensed that the intern was shaken.
The neurologist took over, retrieved the spinal fluid. I would be admitted to the hospital, given an MRI, and diagnosed with MS. For two days post lumbar puncture I had a headache so bad it felt as though my skull had been split down the middle with a croquet mallet and had to use a bedpan to piss since sitting up made the headache worse and the headache made standing impossible.
But in that interstitial space between the lumbar puncture and my admittance to the hospital, there was an hour of perfect stillness. Alone in the exam room, I lay flat on the bed, covered in blankets. “Lie flat on your back and you won’t feel the headache,” a nurse advised.
Lying flat on my back, I heard the movement of wood across tile. It was the intern. Pushing a chair.
“Would it be OK if I sat with you?” she asked.
“Of course,” I replied.
The intern sat, her expression somber.
“Hey,” I said.
“Hey—you did a good job with the lumbar puncture. I know it was your first time and I could tell you were scared.”
“I’m sorry I couldn’t get the needle positioned. I know you were in pain.”
“It’s OK. I am glad you got to try. I actually think that was harder on you than it was on me.”
“Because I felt physical pain, sure, but you had to perform the procedure knowing that you were causing me pain. That’s more difficult.”
We talked some more about things other than lumbar punctures, and she stayed with me until I was admitted.
We were both 27 years old.
The neurological exam is like a dance. Elegant in its simplicity, artful in its expressiveness.
I met Dr. M. when she was still a resident at a hospital in Brookline. I made an appointment at the clinic where she worked because the neurologists there specialized in MS, and I was told that if anyone were qualified to vet a particular treatment, it was them. At the time I was interested in exploring a pioneering new treatment at Johns Hopkins, and I arrived in Brookline carrying stacks of printed articles, information, and extensive research stuffed into my NorthFace backpack.
During the appointment, I posed a question to which Dr. M. did not know the answer and was struck by the way she handled it: “It may seem a bit odd to hear this from a doctor, but I actually don’t know. Would you mind if I brought in one of my supervisors? I think she’ll be able to answer your question.”
I thought: This is definitely who I want to be my neurologist from now on.
Dr. M.—no longer a resident and now wrangling med students of her own—is still my neurologist.
What makes the neurological exam unique is that the primary “instruments” involved are human. They are bodies—that of the physician, and that of the patient.
The neurologist will ask the patient to shrug their shoulders and then say something like: “Don’t let me push down.” The doctor then attempts to push the patient’s shoulders down, while the patient actively resists. This type of assessment is used for varying muscle groups and nerves. In testing the XI cranial nerve, the physician places an open palm around the patient’s jawline and asks the patient to push against his or her hand. As always, the neurologist provides resistance, making it difficult for the patient to turn their head and in the process testing the patient’s nerve function and muscle strength.
In examining motor function, the doctor repeats similar procedures—attempting to push and pull various muscle groups in the arms and legs, always using the force and resistance of his or her own body as a counterweight. 
The exam is a kind of conversation: you push, I push back. You pull, I pull back.
“Palms down. Open your fingers. OK—don’t let me close them. Strong arms—OK, don’t let me pull them apart.”
There is, of course, another conversation that takes place, interwoven with the corporeal dialogue of the exam.
Years ago during a Romberg test I jokingly said something about Dr. M. “letting [me] fall.” It wasn’t so much that I thought she would let me fall (I didn’t) as that I don’t trust people in general. I never said that outright though. I just joshed that she was going to let me fall. And Dr. M., spotting me, kidded back: “Oh, you don’t trust anyone, do you? No, you don’t.”
She was right—but I hadn’t told her that. She had intuited it based on our interactions.
Over time, slowly, I did come to trust her.
The few true “tools” that are used in the neurological exam are both simple and quirky. My favorite is the tuning fork, which is used to test sensation, especially on the hands and feet. The neurologist will strike the fork, causing it to vibrate, and then place the base of the instrument against the skin of the patient’s big toe (or foot/hands/fingers).
“Tell me when you can’t feel it anymore.”
Here, too, this is primarily an interaction between two human bodies—for the only way the doctor knows if the fork has stopped vibrating or not is by placing the base of it against his or her own skin (typically also the top of the foot or hand) in order to determine the patient’s range of sensation.
“OK, now. I can’t feel it anymore.”
“Is it still going?”
“A little bit, but barely.”
“Am I secondary progressive yet? OK—I can still feel that.”
“No, you’re definitely not secondary progressive yet. That I know for sure. Tell me when it stops.”
“Good—that’s a relief. OK: it just stopped.”
This is how we dance, in layers of conversation. You push, I push back. You talk, I listen; I talk, you listen. Back and forth it goes: you read me, I read you.
We are beautifully, messily, perfectly human.
[***VERY ROUGH FIRST DRAFT: SATURDAY, JUNE 21st, 2014. 00:45H EDT***]
1 – If you’re interested in viewing some examples of neurological exams, a longer one can be seen here; a “quick” version of an exam here; and a series of descriptions and photographs here (scroll to bottom for subsequent parts of the exam in the same format). The precise tests performed and objects used (or not) will vary from physician to physician. This is partially a question of “style”: just as no two professors deliver a lecture in the same way, no two doctors perform a neurological exam identically, for there are a variety of different methods and tests that can be performed in order to obtain the same information. It also depends on which areas a neurologist may be focused during any given appointment. For instance, a neurologist may only test olfactory function if the patient has complained of diminished ability to smell, or may only do a Romberg’s test if the patient has a history of issues with proprioception.