Imagine: you wake up in an unfamiliar room filled with an array of medical equipment that seems to be attached to you. You strain to lift your head to discover more, but find that your muscles wont cooperate. When someone enters the room, you try to ask questions. But even your mouth wont work. A devastating truth strikes your consciousness as forcefully as a semi colliding into a wall: youre locked inside your body and can do nothing to change the situation.

 

Locked-in syndrome, also known as coma vigilante, is a rare neurological disorder. The victim of locked-in syndrome, though fully awake and aware, is unable to move or speak due to the paralysis of the bodys voluntary muscles with the exception of those that control the eyes. Patients of this syndrome, although unable to control their bodies, retain the ability to feel pain and other sensations.

 

Locked-in syndrome should not be confused with a persistent vegetative state. Although at first glance the two conditions bear similarities, their causes and the effects upon their victims are vastly different. A patient in a persistent vegetative state has suffered damage to the upper portions of the brain that affect cognitive processes and self-awareness. The victim has progressed through various stages of a coma to the point of being awake; the eyes may be open and the patient may even smile or make noises, though not in response to external prompts. This wakefulness, however, never grows to a state of self-awareness. It is possible for such a person to move, but not to think, experience emotions, or intelligently respond to their environment.

 

In contrast, locked-in syndrome is caused by damage to the lower portions of the brain. While damage to these sections of the brain affects muscle control, it does not affect patients ability to think and reason. They remain aware and conscious of their surroundings and their cognitive ability is unaffected. Additionally, certain functions such as hearing and vision may actually be enhanced or intensified in locked-in patients. Such people also experience emotions. Some have also learned to communicate through the use of a device called a spell board.

 

Various conditions may result in locked-in syndrome, including stroke, traumatic brain injury, circulatory diseases, drug overdose, and diseases that attack the myelin sheath that surrounds nerve cells.

 

Jean-Dominique Bauby, then editor-in-chief of Elle magazine in Paris, suffered a massive stroke at age forty-two that left him locked-in. He brought attention to the syndrome through his book, The Diving Bell and the Butterfly, which he dictated through the use of a spell board by blinking one eye. Nick Chisholm, as a student, also became a victim of the condition after a rugby injury. His story and struggles can be read online.

 

Most locked-in patients never recover significant control of their muscles. At present, there is no known cure for this disorder.