Locked-in syndrome and the misplaced presumption of misery

Enlarge (credit: Amy DiLorenzo | Getty Images)

In 1993, Julio Lopes was sipping a coffee at a bar when he had a stroke. He fell into a coma, and two months later, when he regained consciousness, his body was fully paralyzed.

Doctors said the young man’s future was bleak: Save for his eyes, he would never be able to move again. Lopes would have to live with locked-in syndrome, a rare condition characterized by near-total paralysis of the body and a totally lucid mind. LIS is predominantly caused by strokes in specific brain regions; it can also be caused by traumatic brain injury, tumors, and progressive diseases like amyotrophic lateral sclerosis, or ALS.

Yet almost 30 years later, Lopes now lives in a small Paris apartment near the Seine. He goes to the theater, watches movies at the cinema, and roams the local park in his wheelchair, accompanied by a caregiver. A small piece of black, red, and green fabric with the word “Portugal” dangles from his wheelchair. On a warm afternoon this past June, his birth country was slated to play against Spain in a soccer match, and he was excited.