March 17, 2021

'Like I wasn't there': What it's like to survive 'locked-in syndrome'

Daily Briefing

    Jake Haendel suffered for months from "locked-in syndrome," a rare phenomenon in which a patient is unable to move or communicate but remains fully conscious. But unlike most locked-in patients, Haendel recovered—and now he's sharing what the experience was like, Josh Wilbur writes for The Guardian.

    'Chasing the dragon syndrome'

    According to Wilbur, Haendel struggled with severe substance misuse for many years. By late 2016, Haendel said, he was "out of control, selling lots of heroin, using even more, spending a ridiculous amount of money on drugs and alcohol."

    On May 21, 2017, Haendel was stopped by a highway patrol officer on his way to work because he was speeding and swerving between lanes. It was then, for the first time, that he could tell something was off with his body, Wilbur writes: He wanted to conceal the heroin stashed at the center console of his car, but he couldn't move his arms.

    Haendel was arrested and made bail. Just a few days later, on May 24, 2017, his wife, Ellen, called an ambulance to their house out of concern for Haendel's deteriorating health. First responders took Haendel to the hospital, where brain scans showed "profound, bilateral damage to the white matter, the bundles of nerve fibers that facilitate communication between different regions of the brain," Wilbur writes.

    Doctors diagnosed Haendel with toxic progressive leukoencephalopathy, or "chasing the dragon syndrome," a disease typically caused by the inhalation of fumes from heroin when heated on aluminum foil. There wasn't a known cure or treatment for the disease, so Haendel was sent home with palliative medications.

    How Haendel's condition deteriorated

    Over the following months, Haendel's condition steadily worsened, Wilbur writes. His muscles became weak, his limbs contorted, he fell frequently, and he had trouble swallowing. Eventually, he was unable to eat solid foods, and his speech became harder to understand.

    In November 2017, Haendel was admitted to the neuroscience intensive care unit, where he was placed on a ventilator and fitted with a feeding tube. While hospitalized, he began experiencing autonomic storms: episodes that lasted up to 12 hours in which his nervous system would overact, causing his blood pressure to rise, his body to sweat, and his muscles to spasm.

    Eventually, the damage to his brain grew so extensive that Haendel lost all motor control. Yet even after Haendel had lost the ability to speak, move, or direct his eye movements, Wilbur writes, his condition "spared the areas that enable conscious processing, so he was fully alert to the horror of his situation."

    He found himself listening helplessly as doctors discussed his irreversible brain damage in front of him. "It put me into more pain just hearing [doctors] talk about me like that," Haendel said. "Like I wasn't there."

    'I could do nothing except listen'

    As Haendel's autonomic storms became less severe, he was transferred to a nursing home and then home for palliative care, with doctors telling his father that Haendel was likely to die within weeks.

    "I could do nothing except listen, and I could only see the direct area in front of me, based on how the staff would position me in bed," Haendel said. "I couldn't tell anyone if my mouth was dry, if I was hungry, or if I had an itch that needed to be scratched."

    And he had no physical reprieve from the illness, Wilbur writes. "I felt disgusting all the time," Haendel said, constantly drenched in sweat, his skin burning, hooked up to tubes for food and oxygen, and still helpless when the autonomic storms—less frequent, but still present—would hit.

    Haendel was also acutely aware of the hours passing by. He started using TV shows as a means of keeping track of the time, learning which shows were on at what times. "I always wanted to know what time it was, what day it was, how long it had been," Haendel said.

    During this time, Haendel said he was "thinking lots of depressing thoughts" and contemplating the past. "There were days when I would think about my funeral for hours," he said.

    After six months at home, Haendel was still alive—but no longer eligible for the state's palliative care. Since his vitals were stable, he was moved to Massachusetts General Hospital in May 2018 for further evaluation.

    'This is new'

    By late June 2018, Haendel noticed he was able to exert a small amount of control over his eye gaze. "I thought to myself: 'This is new,'" Haendel said.

    But Haendel's doctors dismissed the movement as involuntary. "It was incredibly discouraging to hear from the doctors, over and over, 'It's involuntary movement,'" Haendel said. "There were times when I felt like I was hysterically crying on the inside."

    However, on July 5, 2018, Haendel's primary care doctor noticed Haendel's wrist moved slightly. "Do that again if you can," the doctor told Haendel. "Move your wrist."

    This time, he didn't even need to think about it—he moved his wrist, a sign his body was finally starting to wake up. The experience, Wilbur writes, flooded Haendel with "indescribable" joy.

    Days later, Haendel was able to respond to questions with blinks, and after a week, he was moved to the brain injury unit at Spaulding Rehabilitation Hospital.

    In the following weeks, Haendel was able to move his neck and tongue, and he eventually learned to communicate non-verbally with the help of Michelle Braley, a speech therapist at Spaulding, while also undergoing physical and occupational therapy to regain use of his limbs.

    Once Haendel regained the ability to communicate, staff were able to start evaluating his progress. "I did a cognitive assessment to see if there was impairment as a result of the leukoencephalopathy," Braley said. "It was at that point that I realized that Jake knew exactly what was going on."

    The staff were stunned, Wilbur writes, because while they had assumed Haendel was at least partially aware during his illness, they were not expecting the level of detailed recall and accuracy Haendel displayed when reflecting on the previous year.

    Haendel's recovery only continued: By September 2018, Haendel was stronger, his autonomic storms had stopped, and he moved to Western Massachusetts Hospital to continue his rehabilitation.

    By the spring of 2019, Haendel was able to speak again, starting with simple phrases like "I love you" and "thank you" before developing full sentences.

    How did Haendel recover?

    Haendel's case has been described by doctors as "remarkable" and "unique," Wilbur writes. While brain scans still show his brain's white matter is damaged, Haendel has regained the ability to speak and hopes to walk again soon.

    How the brain heals "remains mysterious," Wilbur writes, but scientists have learned a lot about how the brain forms new neural circuits to recover lost function.

    Seth Herman, a brain injury specialist at Spaulding, said of Haendel's recovery, "The brain wants to heal, to change itself, and form new neural pathways. Repetition is key, and [Haendel] was willing to put in the work."

    For his part, Haendel believes he got better because of a shift in mindset after being locked in for months. "I reached a point where I was like … 'I'm going to recover,'" he said. "I thought about nothing else for weeks" (Wilbur, The Guardian, 11/26/2020).

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