July 4, 2022

Living with locked-in syndrome

An extraordinary account of life with locked-in syndrome by a young New Zealand rugby player has been published in the British Medical Journal.

An extraordinary account of life with locked-in syndrome by a young New Zealand rugby player has been published in the British Medical Journal. Nick Chisholm collapsed during a game in 2000. Ever since he has been fully conscious and aware but almost unable to respond. It took his doctors a while to realise that he was not in a vegetative state. “All my senses are normal, if not enhanced (sight and hearing). I’m just left trapped inside this body. All my muscles wouldn’t work. Basically I couldn’t talk, which went first; then I couldn’t walk, eat or excrete.” Now he “talks” by spelling out words a letter at a time by staring at letters on a large board.

Despite his incredible disability, Mr Chisholm still wants to live, although he often feels frustrated and angry and has occasionally entertained thoughts of suicide. He has good carers and has made new friends after the accident. He attends his club’s rugby matches. And by dint of great effort he has recovered some movement in one of his hands — enough to give the finger to a doctor who had told him that his condition could never improve.

“Some people say how determined and stubborn I am,” he writes. “But to cope with this and to have hope of full recovery you have to be. I could just moan constantly and deteriorate by staying in bed, but I want the old Nick back again, really badly.

“It is definitely a crazy, mixed-up world. I’m just glad to still be alive-most of the time anyway. I accepted the fact that the accident happened, long ago. Shit definitely happens; I just have to make the most of each day in my journey towards recovery.”

Michael Cook
Creative commons
locked-in syndrome
New Zealand