The film chronicles the life of author Thorvald Steen, who has facioscapulohumeral muscular dystrophy; a rare waste disorder that gradually and irreversibly paralyzes his body. The disease, however, has never stopped Thorvald. He is still an active public debater, freedom of speech advocate, author, and cultural communicator, although his ski jumping days are over. Through Thorvald's wonderful sense of humor and storytelling abilities, the film paints an intimate and poetic picture of an extraordinary life and the man who's still very much enjoying it. The well-known Norwegian photographer Per Maning has followed Thorvald with his camera for 25 years and documented Thorvald's development. The result is a unique and rare portrait of the meaning of life