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I Wanted My Brain Back Sherri Dalphonse, Washingtonian Magazine (page 2 of 6) Page 2 of 6

Kathy Rabin, a friend from Yale, knew Anne was having problems—she had Anne call her every day to check in. But she didn’t realize the extent of the difficulties until Anne visited her in Boston. Kathy went out and left her dog in the yard, asking Anne to let the dog in. Hours later, when Kathy returned, the yellow Lab was outside the back door.

When Kathy visited Anne, who lived alone, she discovered notes stuck all over Anne’s apartment. One affixed to the front door said take keys, wallet, call kathy.

Anne couldn’t remember anything new unless she wrote it down. “That summer’s a bit of a blur,” she says.

Her short-term memory was so bad, she says, “I could hide my own Easter eggs.”

She slept a lot, sometimes 18 hours at a time. One activity a day—going to a doctor’s appointment or to a friend’s—was all she had energy for.

Prior to the accident, Anne was energetic, fun to be with, always making friends.

Lawrence Pratt, a former colleague at the Environmental Law Institute, recalls a time when Anne gave a cranky parking attendant a cake. “She told him, ‘You are always mean to me. I don’t know what I did, but I baked you a cake to see if I could fix whatever it is.’ The man gave her a hug and wept.”

Some friends began to wonder if Anne, who had lived and worked at a fast pace, was having a nervous breakdown. “Our thought was, ‘What can we do to get Anne to snap out of this?’ ” Pratt says.

Friends didn’t connect her behavior to the accident. “We did not have the cues that movies train us to look for,” he says. “No amnesia, no head bandage.

“It was terrifying to see a person with that much talent and potential suffer from something so invisible.”

Six Months Out: A Lot of Help From Her Friends

In brain injury, the frontal lobes sustain most of the damage, says the Brain Injury Association’s Gregory O’Shanick.

The frontal lobes help us plan and follow through, part of executive functioning. They control concentration and problem-solving.

O’Shanick explains the damage using a computer analogy. “With the injury, somebody changed her processor from a Pentium 4 to a Pentium 1, and somebody reduced her RAM,” he says. “It takes her longer to process than it used to.”

Anne’s mother had died, and her father and siblings lived far away, so she relied on friends like Michael and Kathy. They talked her through phone calls she had to make to doctors and insurers. They rescued her when she locked herself out of the house or took the wrong bus. After she left a stove burner on, Michael bought her a toaster oven and a rice cooker—things that shut themselves off.

Anne tried to work, putting in a few hours a week. Interns had to read her her mail. She couldn’t use a computer. Depression crept in. “I wanted my brain back,” she says.

For months, Anne had undergone tests, including magnetic resonance imaging (MRI), an electroencephalogram (EEG), and computed tomography (CT scan). Injury to the brain’s axons usually does not show up on CT scans or MRIs. Doctors told her the test results were fine.

“Mine is the best-studied brain in Washington,” she says. Still, she says, “I couldn’t do things, and no one could tell me why.”

Accurate diagnosis is one of the difficulties in mild brain injury. “Individuals have been misdiagnosed with having depression or as malingerers,” says O’Shanick.

“Mild-injury issues are so different,” Anne says. “A lot revolves around the fact that others cannot see the injury and around trying to get back to work and life when you cannot get appropriate care.” She eventually stopped using her disabled bus pass because drivers questioned why she had one.

During appointments, doctors didn’t always notice her deficits. She wasn’t selfaware enough to see them.

“I didn’t know enough to say, ‘I can’t do this and I can’t do that,’ ” says Anne. “Your brain’s not working, so you can’t process that your brain’s not working. You have a brain injury, you think the doctor can see it.”

Money became an issue. Short-term disability had run out, and Anne’s health insurer denied her long-term disability until it knew what was wrong. She went through more tests.

Even Anne began to wonder: Was it psychological? “It’s a period where you’re vulnerable because you’re not sure what’s wrong,” she says.

The results of neuropsychological tests done by her doctors were consistent with brain injury. Still, she’d received little treatment.

“A lot of people get lost in the system,” says Annandale neuropsychologist Alec Lebedun. “People can wander around for years until they find the right person.”

One problem is a lack of programs and therapists trained to work with mild head injuries, says Dr. Yehuda Ben-Yishay, founder of a brain-injury treatment program at New York University Medical Center. Another is that insurers sometimes won’t pay for cognitive rehabilitation or pay for a limited amount.

In recent decades, everything from air bags to advances in emergency medicine have meant that people in car accidents and other traumas are more likely to survive their injuries—and more likely to need long-term services.

Thirty years ago, says Susan Connors of the Brain Injury Association of America, half of those who sustained head injuries in a car crash died at the scene. Today, less than a quarter do.

The thing Anne needed to navigate the maze of medicine and insurance—her brain—was what was impaired.

On her own, Anne had been seeing a chiropractor for headaches and neck pain. The chiropractor, Philip Shambaugh, recommended she see a developmental optometrist, Amiel Francke, after Anne complained that she couldn’t read.

Twice a week, she attended small-group sessions to practice eye exercises such as following her thumb. The idea of vision therapy is to retrain the eyes to move correctly with the brain. The signals coming into Anne’s brain were so distorted, life was like watching a foreign movie in which the English dubbing is out of sync—but you don’t know it’s out of sync.

From the Washingtonian Magazine. Reprinted with permission. Third-party use restricted. www.washingtonian.com.

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