Eight Stories of Locked-In Syndrome

Imagine losing control over everything. You can't move on your own. You can't scratch an itch. And worse still, you can't tell anyone around you that you have an itch. You can feel pain, hunger, loneliness, and fear, but you can't react to those sensations. You are totally aware of your surroundings, but you can't communicate your feelings or desires, or even your basic needs. The term for this horror is locked-in syndrome. Someone with locked-in syndrome suffers from paralysis of all voluntary muscles except for those that move the eyes. This can be caused by neurological disease such as ALS, strokes, injuries to the brain stem, or drug overdose. The term locked-in syndrome has only been in use since the 1960s. Before that, people who suffered such traumatic injuries generally died from them, or else they were considered to be brain damaged. Here are the stories of eight people who have lived this nightmare.

Julia Tavalaro

One of the dangers of locked in syndrome is the possibility of misdiagnosis. No one knows how many people lived for years and died unable to tell anyone around them that they were conscious and aware. Julia Tavalaro was a 27-year-old housewife and mother in 1967 when she suffered multiple strokes that left her completely paralyzed. Doctors thought she was brain dead. Tavalaro was sent to a custodial institution where she lived for six years without anyone knowing she was aware of her surroundings. She was fed through a tube and cared for physically, but had no real interaction with her caretakers. In 1973, a speech therapist noticed Tavalaro's eyes moving in reaction to her words. Afterward, Tavalaro was given physical therapy and an opportunity to communicate, first by a letter board, then later by operating a computer by tapping a switch with her cheek. She also learned to control her wheelchair by head movements. Tavalaro wrote a book about her experiences, Look Up For Yes, and became a renowned poet. She died in 2003, at the age of 68.

Nick Chisholm

Words can't describe the situation I have been left in—but this is as close as I can get it: an extremely horrific experience that I wouldn't wish on my worst enemy. When you're like this (despite having 24 hour care) it's an incredibly lonely existence at times. It's amazing how much time I have to think about things now since the accident. There's heaps of thoughts that I don't bother even expressing.

Chisholm writes about contemplating suicide, although he didn't have the ability to carry it out. He has since regained some movement, and can pronounce some words. Chisholm is working toward a full recovery.

Bob Veilette

Bob Veilette was a Connecticut journalist and an accomplished jazz pianist in 2006 when a stroke left him with locked-in syndrome. After six months in a hospital, his family elected to care for him at home instead of putting him in a nursing home. That decision meant that Connecticut's Medicaid program would not cover the costs of his care, even though a nursing home would have been much more expensive. Veilette joined a movement to reform the system, although the changes they are working for will not benefit him personally for years. Private fundraisers support the family, but Veilette has had no speech or occupational therapy, and only limited physical therapy due to expenses. Veilette communicates with a letter board held by an assistant. He had no luck with a computer that tracks eye movements, because fluctuations in the size of his pupils upset the tracking.

Catherine O'Leary

Jean-Dominique Bauby

French journalist Jean-Dominique Bauby was 43 when he suffered a massive stroke in 1995. He was left with only the ability to blink his left eye. Bauby died less than two years later, but managed to write his memoir by waiting for an assistant to recite the French alphabet. He would blink when the right letter was pronounced. Using this method, he had to construct and edit each sentence and chapter in his head. The resulting book was The Diving Bell and The Butterfly (Le scaphandre et le papillon). Bauby died of pneumonia only ten days after the book was published. It was made into a film released in 2007.

Gary Griffin

Air Force veteran Gary Griffin is immobile due to ALS (Lou Gehrig's disease). He uses a device called the NeuroSwitch to control a computer and communicate with his family. Sensors are attached to the skin over a patient's muscles and signals are sent to an interface that translates the slightest muscle contractions into usable code. The company's website says even muscles that are considered non-functional may be used.

Johnnie Ray

"We simply make a hole in the skull right above the ear, near the back end of the motor cortex, secure our electrodes and other hardware to the bone so they don't migrate, and wait for a signal," Bakay says. The implant is an intriguing hybrid of electronics and biology - it physically melds with brain tissue.

After implantation, the research team calibrated the interface by asking ray to think about certain movements, and the software was programmed to respond to such signals. Ray used the cursor to spell words and even generate musical tones on a computer.

Erik Ramsey

Links to resources on locked-in syndrome.

This article was inspired by a post at Metafilter.