The Mysteries of an Aware Mind in an Unresponsive Body

Locked-in syndrome (or psuedocoma) is a rare neurological condition in which a person is consciously aware and the mind is still working while the body is paralyzed, including the muscles required for speech and movement.

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In late June, Jake noticed that he could move his eyes up and down a little bit. What seems like such a simple task was huge for 28-year-old Jake Haendel: He had been bedridden and unable to move for months.

What was more, no one knew he was conscious and aware of what was going on around him. As a teenager, Jake started taking drugs to numb his psychological pain, anxiety, and feelings of emptiness. But it was the opioids he took in his 20s that progressively damaged the white matter in his brain in a rare condition known as toxic leukoencephalopathy (Filley & Kleinschmidt-DeMasters, 2001). He was hospitalized, put on a ventilator and a feeding tube, and lost all control over his body. His father described his state as “pretty much like a houseplant” (Wilbur, 2020). Unbeknownst to anyone, Jake was conscious and aware, understanding the conversations people had, feeling his body—including spasms of pain, hunger, and itches—and being able to see what was right in front of him.

After months of internal struggles and suffering, he had a mental breakthrough. In his own words, he reached a point where he said to himself, "F*** this, I’m going to recover" (Wilbur, 2020). Staff at the hospital noticed his eye movements but his control wasn’t good enough to properly communicate or answer questions. The day after Independence Day, his doctor noticed a minute movement in his wrist and immediately asked him to do this again if he could. He did. The outside world finally knew that he was still there.

Over the next few days, he learned to blink in response to questions and eventually learned to communicate using a device where he could pick out letters with his eye movements—similar to the one used by the late British physicist Stephen Hawking (although Hawking used his cheek muscles and had a voice synthesizer to speak; Godlewski, 2018).

Despite suffering from motor neurone disease, the late British physicist Stephen Hawking retained some mobility and the ability to communicate through various technology, including a speech device based on him choosing letters on a screen through minute cheek movements.

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What is unique about Jake is that he made an incredible recovery and is able to speak and move again by himself. He is one of the few people who can share their first-hand experience of what it means to be locked-in.

Locked-In Syndrome

Imagine waking up one day and being unable to move while your mind is perfectly normal. We experience a mild version of this every time we sleep—and sometimes when we first wake up: sleep paralysis, which is a temporary inability to move or speak during sleep. The purpose of sleep paralysis is not fully understood but it prevents us from acting out our dreams (Cheyne, 2003; Pappas, 2012). Thankfully, this is the closest most people ever get to experiencing locked-in syndrome (also known as pseudocoma or de-efferented state), which is a neurological disorder in which the mind is still working but control over the body is mostly lost, including over the muscles required for speech and movement (Laureys et al., 2005).

From the outside, there are few recognizable differences between being locked-in or being in a coma or vegetative state, where basic bodily functions still work but a person is not conscious or aware of anything (Harvard Health, 2020). This makes it difficult to identify cases of locked-in syndrome and it is often family members rather than doctors who recognise signs of consciousness (Laureys et al., 2005), which is why the average time to diagnose is 2.5 months and up to four to six years in some cases (Laureys et al., 2005). However, while some cases may not be diagnosed, researchers agree that it is a very rare condition with fewer than 1,000 people currently having this disorder in the U.S. (NIH, n.d.).

Finding Awareness

Knowing whether a seemingly comatose patient is aware is extremely difficult. One problem is that we still don’t fully understand consciousness (see "What Is Consciousness?" Pang, 2023a) and another is that conscious awareness is not binary but exists along a spectrum (see "The Many Dimensions of Consciousness," Pang, 2023b). Patients may gradually regain consciousness after being in a coma and they may drift in and out of sleep.

Another problem is that the brain can still be very active in vegetative patients in a way that hardly differs from those who regain consciousness (Laureys et al., 2002), which makes it difficult to diagnose even with the latest brain scanning techniques. However, researchers have used creative ways to find solutions, such as asking patients in a coma to imagine playing tennis or other imaginary tasks, which results in distinct brain activations in areas specialised in navigation and muscle control—even imagining swinging an arm with a tennis racket can trigger the corresponding brain areas to activate (Owen et al., 2006; Monti et al., 2010). These are ingenious ways to get information but are not always conclusive and such tests need to always be interpreted with caution.

A Life Worth Living

The thought of being locked in one’s own body may be terrifying but many individuals who end up in this state report a meaningful quality of life and requests for euthanasia are very infrequent (Laureys et al., 2005). Just like Jake Haendel, some have recovered. One example is Kate Allatt, who has become a stroke advocate as well as an author and speaker (Allatt, 2022).

Even without recovery, some who experienced locked-in syndrome had a profoundly meaningful life and impact. French journalist Jean-Dominique Bauby suffered a seizure at age 43 that left him without control over his body except for his left eyelid (Arnold, 2008), which he used to select letters on a board to communicate.

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He eventually dictated an entire memoir—working three hours a day, seven days a week, for two months (Day, 2008). His book The Diving Bell and the Butterfly received critical acclaim, won several awards, and became an international bestseller. It was translated into more than 20 languages and has been adapted into a major movie as well as an opera and a play.

While some—like Tony Nicklinson—describe being locked-in as a “living nightmare” (LeMarechal, 2012), many have been able to lead meaningful lives and a few have managed to recover. Just as the causes differ in every case, the experience and outlook of each affected person cannot be generalised. Bauby has been described as inspirational, and Jake says of himself “I am an improved Jake [...] and a happier Jake.” (Aviv, 2021). Many have found a life worth living despite this tragic condition.

Conclusion

Locked-in syndrome describes a rare but severe neurological disorder in which a patient loses control over the body—including movement and speech—while still being consciously aware. This condition is difficult to diagnose because externally, it seems strikingly similar to patients being in a coma or vegetative state. While some breakthroughs have been made in diagnosis using brain scans and imaginary tasks, there is still no clear diagnostic tool.

Many patients manage to regain forms of communication through simple movements—like moving a wrist or blinking an eyelid—and have reported living a meaningful life. A few have even recovered from this condition.

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