watershed
TWO WEEKS LATER we are seated on the smooth, cool couch of Dr. L’s office while he offers us water and shuffles the papers in front of him and speaks in his calmest, most careful voice. He’s making sure we understand. Where Dr. M simply read his data on Richard’s cancer and surgery into his tape recorder and spoke a sharp, “Any questions?” at the end, Dr. L is all nurturance and tranquil authority.
“Your relationship is loving and mutually supportive,” he says. “That’s one of your strengths. Also, Richard is very bright and has a tremendous neuronal reserve. And he’s in good health and is psychologically stable. These are critical to his success.”
Richard and I hold hands across the couch. I sneak a look at my husband, whose face is, as usual, registering no emotion. I think these words are meant to soothe, but I can’t catch my breath. After the tender setup comes the thorny truth.
“Richard, you’ve made remarkable progress under the care of your speech therapist. You’ve been learning compensatory strategies. The people who have administered the tests have found you to be extremely cooperative, and, frankly, you are the kind of person who succeeds through incredible effort.”
I watch Richard blink back tears. His gentle vulnerability makes me warrior-like in my desire to protect him.
“Those strengths are going to serve you well. We do anticipate a positive outcome—however, the test results showed some areas of impairment.”
I breathe for the first time since he began to speak. The word impairment sounds like a gong ringing inside the dim room.
“Richard, you have severely impaired tactual recognition skills. These are related to speed.”
“What’s tactual recognition used for?” I ask.
“The ability to perceive tactile, auditory, and visual stimuli. He had no errors with his left hand, and on some tests he shows up with a high average on the left side, but his right hand is severely impaired.” I am not surprised, given the state of his right side following the brain injury. The doctor adds, “What’s unusual is that his tactual recognition seems to be due to diminished sensory ability in his fingers, which makes it difficult for him to recognize geometric shapes with his hands.”
I’m shocked to hear that Richard’s ability to process what is happening with his hands has been limited. As a physical therapist, he depends upon this ability; it is his lifeblood. Richard shows no sign of registering concern for his future.
“Richard, your phonemic fluency skills are borderline. Your social skills are excellent, and we didn’t find any significant deficits in word finding, verbal repetition, written spelling, or reading comprehension, but your semantic fluency is low. For example, you’re at the twenty-fifth percentile in sentence repetition.”
“Is it possible that the months he’s been doing speech therapy have brought him to this level?” I ask, wanting to find something positive.
“It’s possible. Though his visuoconstruction skills are at the severely impaired level. These are what we would call the executive skills.”
“How low?” I ask.
“The fourth percentile in one trial. Up to about the eighteenth in another.”
I wonder if I’m hearing accurately. This is a man who skipped a grade in elementary school, who nearly had a graduate degree, who, before the brain injury, was managing twenty physical therapy clinics and seeing ten patients a day. He was the fastest thinker I’d ever known. Richard squeezes my hand. I’m not sure if my husband is trying to reassure me, or is terrified by the doctor’s words.
“Just a few more things to note. Low average in the following categories: visual learning and memory skills, simple and complex visual fluency skills, nonverbal problem-solving skills. These are significant neuropsychological deficits, ones that weren’t present before the surgery. The best thing you have going for you, Richard, is that you were functioning at a high level for such a long period of time. Vocationally, you functioned at a high level. The brilliant mind you started out with is going to be of assistance in getting you back in the game. Like a lot of brain injury patients, you may find that is not the same game as it was before.”
“What’s his prognosis?”
“Postoperatively he has been unable to regain much in the way of his premorbid cognitive and behavioral capabilities. We would consider him to be permanently disabled.”
Permanently. Disabled. The words crush against us. Our bodies hang like skinned carcasses. Permanently, as in forever. Disabled, as in unable to find his way back. I look at Richard’s face, where I see confusion. He’s not able to register disability as a part of his identity. I see where he wants to be, who he wants to become, what he cannot speak.
“So how do we get him back to permanently able?”
Richard nods his head.
“We begin with neuropsychological counseling, once a week for twelve months.”
“I want to go back to work,” Richard says.
“The goal for work is part-time. Modified. When you’re ready to go back to work, you’ll need to be closely supervised and in a structured environment. And not before the end of the year. We want you to see an occupational therapist. To help you create compensatory strategies. This will facilitate independence at home and at work.”
Richard screws up his face as if he has eaten a sour lemon. He thinks occupational therapy is for the incapacitated, not for him. He considers occupational therapy, the practice of daily and work skills, to be facile bullshit. But he’ll bust his ass to complete the protocol if he thinks those skills will bring him closer to being functional at work.
“You get good at the strategies and then you don’t have to go to occupational therapy anymore, right, Dr. L?” I say.
“We’re going to do everything we can to help you be successful,” Dr. L answers, with the kind of confidence I want to crawl inside.
Compensatory strategies are used to help people with brain injuries recognize and make accommodation for their cognitive difficulties. On our next visit, I complain about Richard wanting to drive.
“Dr. L, he’s clueless about what he can’t do anymore.”
The doctor takes me into his office while Richard meets with the occupational therapist.
“Richard has a reduced awareness of his deficits, which is typical in someone with a brain injury. In the rehabilitation process, the mind must become aware of what’s missing, even when it doesn’t recognize that anything is absent.”
He’s describing the same kind of denial my brain had to eliminate when I got sober.
“The tests we took also measured Richard’s effort and motivation,” Dr. L says.
“He’s downright stubborn in his belief that he can get back to work,” I say.
“No kidding,” the doctor says. He tells me that Richard is remarkably motivated in comparison with other head-injured patients. I look out the window where the sunshine is glinting off the blacktop of the parking lot. I don’t want the doctor to see my tears.
“He’s so damned determined to relearn his career,” I say. “He spends four hours every day reading his anatomy and physiology textbooks. Falling asleep and then waking up and doing it all over again.”
Dr. L picks up the evaluation and reads a passage to me: “Qualitatively the patient worked hard throughout this evaluative effort. Responses to psychological measures did not suggest symptom exaggeration. If anything, the patient had a tendency to downplay his neurobehavioral complaints.”
“He stopped driving not because he noticed that his reaction time is poor, but because I told him that he’s placing other drivers at risk,” I say.
“He has to do a driving test to ensure everyone’s safety, but not until he’s ready,” Dr. L says.
“He wrote on his application to his disability company that he’ll be back to work in two months.”
The doctor and I smile at Richard’s innocence. On the tests Dr. L administers, Richard perceives little in the way of neurocognitive difficulties, saying that he feels himself to be within normal range in memory, attention, communication ability, mood, and motor skills. I score those areas as problematic across the board.
But I tell Dr. L I think we have a bigger problem. Richard can’t remember many events that happened before he went to the hospital, from childhood to a few months ago. And he’s still struggling to hold on to things learned in the present.
“Though most people with a brain injury have their short-term memory affected,” he tells me, “their long-term memory remains intact.”
A phantom limb is a persistent memory of a part of the body, the sensation of a limb’s presence for months or years after its loss. Richard has a phantom identity. His personality, history, self-image, orientation, gestures, expressions, and relationships have gone missing, and every day he wakes up without an intact sense of his former self. But there’s no indication that Richard feels that he is without himself, or that he cares who his former self was. Only I seem to care about that man.
“Richard wants you to tell him what to do so he can get back to work,” I tell the doctor.
“We’ll talk about all of your goals and see if we can outline what’s reasonable for him,” Dr. L says, and he shakes my hand like we’ve made a terrific deal.
A railroad worker in the mid-nineteenth century, Phineas Gage, had an iron rail plunged through his skull, and when it was removed, his temperament shifted dramatically, from balanced to angry. (Unlike Phineas Gage, Richard didn’t develop more aggressive tendencies, but rather became more passive. When I read stories of angry brain injury patients, I’m grateful that we haven’t had to endure such bedevilment.) Gage became the subject of medical lore and books, and his case helped doctors understand the relationship between brain and personality functions.
Not located in just one focal region of the brain, like a language center or a spatial area, the personality is layered with all the aspects of our history. The personality is the narrative that we develop through which we regard and understand our changing world. The railroad worker’s life was said to have been destroyed due to his uncharacteristically combative nature following the accident. His doctor, John Martyn Harlow, noted of Gage:
A child in his intellectual capacity and manifestations, he has the animal passions of a strong man. Previous to his injury, although untrained in the schools, he possessed a well-balanced mind, and was looked upon by those who knew him as a shrewd, smart businessman, very energetic and persistent in executing all his plans of operation. In this regard his mind was radically changed, so decidedly that his friends and acquaintances said he was “no longer Gage.”
After his injury, people were not interested in Gage, only his tale, a story he was quite uninterested in exploiting. He left for Chile, a place that did not know his past self, a place that could not keep him mired in relationship with what had been.
Richard, like Gage, has limited access to his past, and he’s unable to project on the future a sense of who he might become. No history, no story of a future.
We, his family, are the ones who grieve his memory loss, but Richard may also be devastated by grief in his own way, in fear of his unrecognizable self. In what ways was he, like Gage, “no longer Richard”?
Gage became, like Freud’s Anna O., one of the most famous patients in the history of medicine. Written into textbooks, fashioned into fiction, and referenced in cultural criticism, Gage was a figure of scientific and popular discourse, a kind of brain-rattled bogeyman. Over time, his narrative became so exaggerated that Gage was said to be a drunken, incompetent braggart who ran off to join Barnum’s American Museum. In just a few years, Gage became a liar, gambler, bully, and abuser of women and children, though few proffering stories of his behavior had ever met the man.
In the aftermath of Gage’s accident, a great neurological debate ensued between the scientists who believed that function could be located in specific areas of the brain, and those who resisted such notions. Dr. Harlow’s story of Gage became distorted as it was used to uphold competing theories of the brain. Information brought to light in 2008 by psychologist Malcolm Macmillan reveals that instead of disintegrating into a raving madman, Gage improved over time, relearning social and personal skills enough to reenter the workforce (as a stagecoach driver, which would suggest a need for significant multitasking skills). But that did not serve the narrative that scientists of the former century had to uphold, as not to have their theories dismissed.
When I come across this story of Gage, it’s instructive: I’m cautious about becoming the same kind of biased narrator of my husband’s story. I don’t want to make assumptions about what Richard has lost, or what he’s going to become. But still, the words permanent disability keep cycling through my mind.
By the next counseling session with Dr. L I have a list of questions. I want to know how brain injury works, and why Richard has lost his memories of some things—our marriage history, major events in the children’s lives—but not others: Hamlet’s soliloquy and the Superman monologue.
“In a pressure drop or traumatic incident, the internal capsule in the middle part of the brain goes down first. This creates a watershed area, like water that goes into a floodplain. In the case of spotty impairments, one of these roots will be fine but others may not be intact,” he says.
“Why does he seem to show such little emotion?”
“That’s called a ‘flat affect.’ Richard’s left internal capsule was affected, meaning the left lobe that moderates emotion.”
“His speech therapist said it might not ever come back. But a brain injury survivor said that his emotional expression will certainly come back. What’s the truth?”
“What you are hearing are people’s opinions. Their pessimism and optimism. You won’t know until about two years after the brain injury what’s going to come back.”
“We have to wait for the flood to recede.”
“Kind of.”
I think we’re living our hurricane, tsunami, and deluge all at once.
Dr. L patiently explains that while Richard has a relatively coherent semantic memory, also known as the memory of facts—like recognizing his family and remembering who the president is—he has a nearly absent episodic memory, which is the working narrative of one’s life, one’s autobiography. His working memory, the thing that allows us to store and remember information in the short term (think of dual tasks like remembering to schedule a meeting while we leave a colleague’s office and make our way to our desk), is quite impaired. Working memory measures our ability to acquire knowledge, rather than what we have already learned. In emerging research, it’s considered more important than IQ in determining academic or entrepreneurial success. The hippocampus, that great wielder of mental maps and spatial orientation, seems to be functioning in Richard’s ability to find his way around places and remember our faces, but flaws in his declarative memory (both semantic “facts” and episodic “experiences”) make learning new material slow and plodding.
Author Priscilla Long describes memory in this way:
Memory is reconstitutive. During memory, neurons from all over the brain, the ones that fired during the original experience, fire again. Neurons firing in the visual cortex re-create visions; neurons firing in the auditory cortex re-create thunder or opera. But these assemblies of neurons re-fire with less strength. And with fuzzy boundaries. Memory is an unreliable narrator. It’s less like a scanned photo, more like a Civil War re-enactment.
And in Richard’s situation, memory is more like a reenactment of something someone told him about in a crowded room one day, and expected him to visualize, hear, memorize, and understand days, weeks, months later.
In June, nine months after the anoxic insult, when it’s clear that Richard isn’t going back to work anytime soon, I write a letter to his CEO. Richard and I talk about what we want to say, then I compose it and he makes a few suggestions.
First, we would like to thank you for your kindness during this very difficult time in our lives. . . .
Following an evaluation with the doctor of the Neurobehavioral Clinic, it has become apparent that Richard is undergoing difficulties that compromise his ability to return to work. These include memory problems, impaired tactual recognition skills, expressive language difficulties, thought organization problems, and abstract reasoning difficulties. These areas range from severely to mildly impaired. Dr. L states that Richard is totally disabled, but that part of his disability might be temporary, and he is recommending occupational therapy and neuropsychological care on a group and individual basis for six to twelve months.
The focus of the new treatment includes the development of a set of compensatory strategies to get him back to work on a modified basis. Richard is hopeful that when he is able to return to work, it can be in a structured and supportive environment. He would like to begin to integrate back into a Physiotherapy Associates clinic environment when he has been released by his doctors to do so. He also has set a personal goal of returning to a Clinic Director position within the next two years, should his therapies begin to correct his impairments.
Of course you can imagine how difficult this is for Richard, who is almost completely motivated by healing others, devoting himself to his patients, and providing for his family. We pray for a complete return of his faculties, and will do everything within our power to get him the needed treatment to make that a reality. When it is appropriate, Richard would like to discuss the geographical areas that might be a good fit for his modified work needs, and to talk about integrating him into the environment. His work is perceived by him as a calling, and thus necessary to his life.
Shortly afterward, we received this letter from the CEO:
Thank you for updating me about Richard’s progress. I’m sorry to hear of his continuing struggle, and I join you in optimism about his eventual recovery. I know that Richard will continue to impress with his strength and courage; I know how frustrating his impairments must be today. Still, the future holds great promise for you, free of the cancer that threatened previously. You made the right choice, and Richard’s story is one of victory and inspiration for all of us who love him.
Of course, Physiotherapy Associates is diminished without his talent and presence, and I am confident that his return, when appropriate, will be as successful as he has always been on this team. I think he should focus on his personal recovery, and just say when he is ready.
We are being cut loose from every responsibility to which we have been tethered. We have two months left with our last child, and then she too will be gone. I take pictures of Dylan for the program of her senior voice recital. Beautiful images of her in our tiny backyard, her long straight hair and big eyes shining in the twilight. We design a handmade program and decide what refreshments to serve. Later, when Richard is sleeping, we sit in the hot tub under the canyon stars and talk about the changes that keep coming. It’s not just the wounded person who changes after an injury. The whole web of relationships is transformed by the injured one. “One brain injury causing another,” I say, and we smile, but we don’t really know the meaning of this. Not yet.