If it was hard to recognize the cognitive changes wrought by a horrific car wreck, how much harder would it be to accept that brain damage could result from a mere fender bender?
Chapter 5
Through the Cracks
Anne Forrest was starting to get scared. It had been weeks since she felt normal. She’d been plagued by excruciating headaches. She couldn’t concentrate at work. She’d lose track of what friends were saying in the middle of a conversation. Though the thirty-nine-year-old economist had always been calm and measured, she found herself losing her temper and screaming at people for the most minor of infractions. Then, on the drive home one day, she lost feeling on her right side for several minutes. Somehow she managed to get the car pulled over onto the shoulder to wait and see if the numbness would pass. It did, but she was terrified that something was going horribly wrong with her brain.
The episode in the car prompted Forrest to make an appointment with a neurologist. Because hers wasn’t an emergency, she would have to wait several weeks before seeing him. Worried, she pushed for an earlier date, but the neurologist’s receptionist was firm. The weekend before her appointment, Forrest planned to watch the Fourth of July fireworks display with her boyfriend on the lawn near the Washington National Cathedral. Shortly after they arrived, she noticed a man making his way toward her. He came up and introduced himself, and though Forrest soon realized he was someone she worked with, she couldn’t remember who he was. She was shaken.
Now, as she lay on her back in the grass looking up at the bursts of light, she couldn’t get her brain to make sense of the night sky. Stars that should have been a stationary backdrop for the fireworks were whirling furiously. She tried to get the stars to stay still, but they just spun all the more crazily. Forrest started to cry, and her boyfriend suggested they walk around inside the cathedral instead of watching the fireworks. When they got there, she sat down for a few minutes and prayed that she would be OK.
When Forrest finally got to see the neurologist, he ran her through a series of neurological tests and asked her if anything out of the ordinary had happened over the past few weeks. She told him about the day she’d lost feeling on her right side, about the terrifying swirling sensation during the fireworks—and about the fender bender she’d been in a few weeks earlier. She suspected that the accident, though minor, was somehow connected to her odd symptoms.
It had happened down by the Lincoln Memorial. Forrest had been waiting to merge onto a major road, craning her neck to the left to assess when it would be safe to hit the gas. While she was waiting, an SUV banged into her Acura from behind. The hit wasn’t that hard—it barely made a dent in the back of Forrest’s car. She and the driver of the SUV got out of their vehicles and exchanged information. Then Forrest got back in her car and drove the rest of the way home. It had been such a minor accident that she hadn’t thought anything of it, and she certainly didn’t think she needed to see a doctor. Besides, since it was a Saturday, the emergency room would have been her only option.
The following Monday, Forrest woke up with chills, nausea, and a pounding headache. When she went to see her primary care physician, she told him about the car accident and he suggested that her symptoms might be due to whiplash. He told her to check in with him every few days over the next couple of weeks just to make sure she was OK. He suggested she go back to work but skip anything physically strenuous. She’d been disappointed when he told her to avoid physical activity. Volleyball season was about to start and she’d been eagerly anticipating the matches on the National Mall. Playing in the shadow of the Washington Monument and the Lincoln and Jefferson Memorials gave her the feeling that she was really a part of Washington. The prospect of missing the season altogether was disheartening. Nevertheless, she resolved to try to get her life back to normal—until the day she lost feeling on her right side. She went back to her primary care physician and asked what could possibly be wrong. He couldn’t find anything even with a CAT scan, but he referred her to a neurologist, just in case.
The neurologist told Forrest that it was possible she had developed epilepsy or multiple sclerosis based on her symptoms. The most likely explanation, however, was that the car accident had left her with a mild traumatic brain injury. In most people, he said, symptoms resolve in three to six months. But a small percentage of people who suffer a mild TBI don’t seem to improve, he cautioned. “If you’re not better in two years,” he added, “you’ll never get better.” Though the idea of a brain injury was scary, Forrest hung on to the word “mild.” She told herself, “I’ll just have to be one of the people who gets better in six months.”
Forrest left the doctor’s office assuming that she just needed to wait out the brain injury. In three to six months, she’d be fine. She returned to work at the Environmental Law Institute, figuring that was the best way to get her life back. When she went to fill out her timesheet two weeks later, Forrest, an internationally recognized economist with a Ph.D. from Duke University, couldn’t make any sense of the blank columns and rows. The institute’s CEO told her to go on disability leave. “If you can’t fill out your timesheet, you certainly can’t work,” the CEO said.
Things didn’t improve in the months that followed. Forrest couldn’t balance her checkbook anymore—the math was too hard. She would wear the same clothes for days on end because changing them would mean she’d have to figure out how to match the colors. Besides, she was just too tired to make the effort. Forrest had always been energetic and sociable; now she was spending much of her time in bed, sometimes sleeping as many as eighteen hours a day. During dinners with friends, she’d just listen quietly, unable to follow the conversation well enough to participate. When an old college friend came to visit, she found reminder notes plastered all over Forrest’s apartment. One on the door reminded Forrest to take her keys and wallet with her when she went out.
Friends could see something was wrong with Forrest, but they never connected her problems with the car accident. And she was in too much of a fog to explain anything to them. Forrest’s own insight was limited as she spiraled downward. She was aware she was having memory problems, but didn’t connect them with the concussion. She just adapted by writing herself notes and to-do lists. As skills disappeared, she found ways to compensate, never really having the wherewithal to put it all together.
Even though they didn’t understand what was happening to her, Forrest’s friends knew she needed help—paying bills, balancing her checkbook, making doctors’ appointments, dealing with her insurance company. When she’d lock herself out of the apartment or get lost after taking the wrong bus, someone was always ready to come to her rescue. After she forgot to turn off a burner on her stove, her boyfriend bought her a toaster oven.
Forrest’s short-term disability ran out after six months, and her regular health insurer denied her application for long-term disability because she lacked proof that she couldn’t work. Forrest was forced to live off her savings while her lawyer tried to get the disability insurance company to reinstate her benefits. She went back to the neurologist who had diagnosed the brain injury a year earlier, hoping he could help her prove to her insurance company just how disabled she was. He referred Forrest to a neuropsychologist who told her that she was indeed struggling with TBI symptoms and suggested she get rehab. Worn out by the grind of daily living, she couldn’t imagine summoning the energy to search for a rehab doctor and to negotiate with her recalcitrant insurance company. She was just too exhausted to deal with any of it.
In the meantime, Forrest’s lawyer was trying to get her auto insurance company to pay for her care and expenses. Because Forrest had been hit by a driver with minimal insurance, her lawyer worried that it wouldn’t be enough to cover her medical bills, let alone her living expenses, especially if it turned out that she would never be able to work again. He determined that her car insurance policy had a provision designed to help cover damage caused by underinsured drivers. But her insurance company ref
used to pay, arguing that she couldn’t possibly have such serious damage to her brain when her car had only a tiny dent as a result of the accident. Forrest sued, but lost her case. Part of the problem, her attorney said, was that because she looked and sounded so normal most of the time, only people who knew her well could see something was wrong. Even he hadn’t noticed her deficits initially. They only became clear to him when he asked her to help prepare for the case and she had trouble doing the simplest things, like gathering up her medical bills.
After nine months with no income, Forrest started receiving disability benefits again. But the disability insurance company insisted she go see two of its own handpicked experts, a psychologist and a psychiatrist. They concluded that she had mental problems and was a “narcissistic histrionic malingerer.” She was relieved that their diagnosis qualified her for two years of disability payments, the company’s maximum for mental health problems, but she was disappointed that that meant she wouldn’t get a referral for TBI rehab.
On the recommendation of a friend, Forrest traveled up to New Jersey to meet with a TBI expert. After evaluating Forrest, the specialist told her she needed cognitive therapy to help her understand her deficits and to learn how to compensate for them. Back home, Forrest again made an appointment with a neuropsychologist in hopes of getting a referral to rehab. But the neuropsychologist told her she was “doing too well” for rehab to make much difference and suggested that the only reason she wasn’t progressing was that she didn’t really want to get better. Although Forrest knew that couldn’t be true since she was still unable to work or drive a car, her brain was processing too slowly to come up with the correct response until she was on her way home from the doctor’s office. The neuropsychologist did tell her that she needed more rest, so Forrest started taking naps in the middle of the day and stopped trying to push through the fatigue. That helped some. She found she had a little more energy to deal with the daily necessities of life—like making sure she got enough to eat. Still, the battles with the insurance companies and the fight to get some sort of rehab were taking a toll.
Making matters worse, Forrest was on her own most of the time because her boyfriend, Michael Crider, had moved to Texas for a job a few months after her accident. Crider did his best to help her on his visits back to Washington, but he could see that that wasn’t enough. He began to press her to move down to Austin. Forrest was nervous about leaving the familiar surroundings of her Washington home. If she was getting lost on short excursions away from her apartment now, how was she going to manage in an unfamiliar neighborhood in a new city? Eventually Forrest overcame her fears and moved to Austin. She’d lost so much of her life already; she didn’t want to lose Crider, too.
The move came with an unexpected benefit. Forrest finally found a rehab facility that was able to help her—three and a half years after her accident. After running Forrest through a battery of tests, therapist Liz Joiner broke the bad news: the former economist couldn’t even do second grade math. Division was impossible for Forrest to grasp. She thought, “Who am I if I can’t even do second grade math?”
For Forrest, rehab was like going back to elementary school. She had to relearn basic math. Her lack of organizational skills was affecting every part of her life. Writing was almost impossible because she couldn’t form her thoughts into a logical progression; she had to once again learn how to start paragraphs with topic sentences.
Joiner helped Forrest work on multitasking issues and attention problems. Forrest’s brain had gotten so distractible that she couldn’t even make her way through a basic recipe. But the more Forrest cooked at the rehab center, the better she got. Joiner explained that sometimes you could get the brain to rewire broken connections if you did something over and over again.
While Forrest worked at getting her brain to rewire, Joiner gave her tools that would help her get through her daily life. She taught Forrest to keep a detailed day planner. The benefits of that would be twofold: helping Forrest to remember things better by writing them down and, more than that, serving as a replacement for her imperfect memory.
As part of her therapy, Forrest was encouraged to write and deliver a speech about her experience with brain injury. In doing so, she’d be using one of the few skills that had survived from her old job untouched by the TBI. There would be another benefit: by writing about her life after the brain injury, she would have to become more conscious of its impact. The exercise was painful. Though she had been working on improving her deficits, it was the first time she had thought about all of them together, the first time she’d pondered the totality of the impact of the injury on her life.
When Crider got a job offer in Washington, the couple, now married, decided to move back. Although she’d lived in the city for years, Forrest had trouble readjusting because so much was unfamiliar. At least her old neurologist could now point her in the right direction, referring her to a rehab facility that recognized her deficits. There, she started to work on balance problems that no one else had addressed. Dizziness had precluded her from using a treadmill since the accident. Her new therapist gradually got her to work up to the point where she could walk without holding on to the sides.
Even with therapy, Forrest was still too disabled to return to work. She finally recognized that some of the fallout from the fender bender was permanent, and she had learned to adjust her life to her brain’s limitations. She had accepted that she would never be able to return to economics. But she found something else to fill the void. She honed the speech she had written in Texas and started giving it at TBI conferences. That caught the attention of advocates at the Brain Injury Association of America, and Forrest was added to its list of speakers. Soon she was giving regular talks about concussions and how devastating the damage could be even if the initial brain injury seemed mild.
She had learned to make adjustments to her everyday routine that compensated for her deficits. Trips to the store became strategic missions. She would decide what she wanted in advance, think about where she would find each object, and then stick with her mapped-out mission at the store. She and Crider eventually adopted a baby boy, and she decided she could be a stay-at-home mom. With to-do lists and a scrupulously filled-out day planner, she was getting by.
Though she had accepted that she would never be the same person she was before the accident, Forrest sometimes wondered wistfully how different things might have been if she’d managed to find good rehab right away. That point was brought painfully home one day in 2003—six years after her life-changing fender bender—when she attended a book reading by TBI survivor Trisha Meili, who had written a memoir titled I Am the Central Park Jogger: A Story of Hope and Possibility. Meili had experienced a much more severe brain injury, but she had managed to come back from it and was even able to return to her job in finance. After the reading, Forrest’s hand shot up. She asked how Meili had managed such a full recovery. Meili answered that she’d gotten therapy at a top rehab center right away. What’s more, she’d gotten job-skill training early on. Forrest couldn’t help thinking, “What she went through was so much worse than anything I went through. Where would I be now if I’d had that kind of rehab?”
• • •
Unfortunately, stories like Anne Forrest’s are all too common. People with brain injuries seem to just slip through the cracks, especially those with concussions. The ones who get correctly diagnosed by a doctor are often sent on their way without any referral for follow-up or rehab. Others, assuming that they simply had an innocuous bump on the head, never see a doctor and just go on with their lives without ever linking the injury to the plethora of disparate symptoms that develop afterward. Experts estimate that 20 to 40 percent of people who experience a mild traumatic brain injury never seek medical attention. Even people with more severe injuries can end up floundering when doctors focus on damage to the body and forget about the brain.
For some, the injury is the beginning of a slow downward spiral. Alterations in c
ognitive function, coupled with personality changes caused by the brain injury, can lead to lost jobs and crumbling marriages. The problem is often compounded by lack of insight; people with a brain injury are often oblivious to the changes that seem so obvious to others. A man who experiences a loss of inhibition because of a brain injury may frighten women he’s dating because he no longer can rein in his conversation and behavior; unrestrained enthusiasm can be misinterpreted as stalking. On the job, errors due to damaged math skills can be misinterpreted as fraudulent behavior.
Those were the kind of stories that originally caught the attention of Wayne Gordon, a psychologist at the Mount Sinai School of Medicine who specializes in neuropsychology and rehabilitation. Over the years, Gordon became convinced that “hidden” TBIs were at the root of many of society’s ills. Back in the late 1980s, he noticed while asking his standard intake questions that a surprisingly large number of patients had suffered jolts to the head that weren’t documented anywhere in their medical records. They had come to him because they could see their lives unraveling and they were having a harder and harder time coping with relationships and job responsibilities. Some of them could trace their downhill slide to a particular event, such as a car accident or a fall, but they didn’t understand what it was about the incident that had thrown their lives so out of whack.
The Concussion Crisis Page 13
