A diagnosis can change your life, but it does not have to decide what comes next.
My guest Paul Bugeja has built a life shaped by curiosity, career change, travel, creativity, and a determination to keep moving forward. Paul lives with facioscapulohumeral muscular dystrophy, or FSHD, a condition he calls his “dark angel.” We talk about how disability has influenced his choices without defining them, why staying active matters to him, and how personal agency has helped him face uncertainty without becoming trapped by fear. Paul also shares his path from acting and writing into journalism and digital media, where he now works as a quizmaster. We explore disability advocacy, media accessibility, the role of AI in journalism, and the danger of losing critical thinking. Paul’s story reminds us that resilience is not about denying challenges. It is about understanding them while continuing to choose how we live.
Highlights:
01:10 – How moving often helped Paul learn to adapt.
12:15 – How a gym visit led to his FSHD diagnosis.
20:39 – Why disability gave Paul a stronger drive to live fully.
22:53 – How knowledge of his condition gave him more agency.
38:35 – Why accessible media still has room to improve.
45:57 – How staying present helps Paul manage worry and fear.
About the Guest:
Working as a quizmaster for a major media organisation isn’t somewhere I could have predicted I’d end up professionally, but, then again, life has taken so many twists and turns it doesn’t surprise me this is where I currently find myself.
Despite early aspirations to be an actor, I completed a double degree in Arts and Commerce at the University of Melbourne, with the final year spent on exchange at UC Berkeley, California.
On my return to Australia, not to be denied, the ever-persistent actor in me got me admission to the prestigious Victorian College of the Arts Drama School: the decade or so following saw me immersed in the challenging but exciting life of the struggling actor.
This period was also the launching pad into studies in writing, editing, journalism and screenwriting, which I did as I worked in book publishing and wrote half a dozen books, even as I edged into the rapidly evolving professional world of content, digital marketing and journalism.
Throughout this entire time, I’ve lived alongside and managed my “dark angel”—a diagnosis of facioscapulohumeral muscular dystrophy—which has only served to galvanise me further to live a life less ordinary along the road less travelled …
And that has made all the difference.
Ways to connect with Paul**:**
https://www.linkedin.com/in/peebee/
About the Host:
Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.
Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT\&T, Federal Express, Scripps College, Rutgers University, Children’s Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association’s 2012 Hero Dog Awards.
https://www.facebook.com/michael.hingson.author.speaker/
https://www.youtube.com/user/mhingson
https://www.linkedin.com/in/michaelhingson/
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