Learn what it feels like to be conscious but unable to move, a condition known as locked-in syndrome.
When you are conscious but unable to move, you can understand what is going on around you but cannot easily express your thoughts to others. This can create a frustrating situation, mainly when, along with being conscious, you can see and hear clearly. With full cognitive function and the ability to understand conversations, you invariably have as many thoughts, ideas, and opinions as others. But you have no easy way to express them or even acknowledge that you are listening.
The most severe form of conscious paralysis is called locked-in syndrome. Caused by a brain stem injury, this condition results in total paralysis of all voluntary muscles in the body except those controlling eye movement, but it does not affect cognitive function, eyesight, hearing, or sleep/wake cycles. In this way, it differs from a vegetative state, in which a person can neither move nor form conscious thoughts.
How to Cope With Locked-In Syndrome
When non-disabled people hear the symptoms of locked-in syndrome, they often respond that it sounds like a living nightmare. Many people believe that being paralyzed entirely but with full cognitive function is worse than being in a vegetative state, as the knowledge of being unable to move adds another level of misery.
But researchers who have evaluated patients with locked-in syndrome and conducted quality of life studies have reported substantially higher-than-average results. Patients who learn communication methods that allow them to convey their thoughts and interact meaningfully with loved ones can live happy and meaningful lives despite their physical limitations.
Communication Is Key
Since locked-in syndrome robs a person of all voluntary muscle movement except the eyes, their only hope for communicating with others is expressing their thoughts via eye movement patterns. Over time, and often with the help of experts, patients and their loved ones can develop robust communication systems based on eye movement.
The process is time-consuming, difficult, and often frustrating — much like learning a second language as an adult. But if both the patient and their loved ones are committed to seeing it through, the patient can enjoy a markedly better quality of life and loved ones can have the joy of knowing the patient’s ideas, thoughts, fears, and hopes.
Recovery Is Rare
Very few people with locked-in syndrome make a full or even a significant partial recovery. For that reason, treatment tends to focus on adapting to the condition and learning how to enjoy a happy and meaningful life in spite of it.
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