Fiona Cauley | This Past Weekend w/ Theo Von #634

Fiona Cauley has Friedreich's Ataxia, a rare, progressive neurological disease affecting about 5,000 people in the US. Both her parents were carriers. She was diagnosed at 18, after years of her symptoms (clumsy walking, slurred speech, falling) being misinterpreted by coaches, principals, and even her family as being drunk, high, or faking it. Her mother initially dismissed her concerns, believing Fiona was copying her older sister's health issues. This gaslighting led Fiona to believe she had a mental issue, delaying proper medical attention for years.

Guest's personal account of diagnosis and family reactions.

Fiona's comedy career was significantly boosted by her appearances on 'Kill Tony.' Before the show, she had around 30,000 social media followers; afterward, she amassed over half a million. She describes the show as a 'Roman coliseum' experience, stressful due to the massive audience and the panel's 'meanness,' but acknowledges its life-changing impact. She contrasts this with her appearance on 'The Tonight Show Starring Jimmy Fallon,' which impressed her grandparents but had less broad reach than 'Kill Tony's' online platform.

Direct comparison of follower counts and show experiences.

Fiona recounted a terrifying Uber ride where the female driver, who appeared to be on drugs, ranted about politics, swerved, and eventually pulled out a gun from the glove box, poking Fiona with it. Despite being drunk for a comedy show, Fiona was sobered by the fear and, upon arrival at the venue with no one to meet her, jumped out of the car and pulled her own wheelchair out, demonstrating a temporary ability to walk under extreme duress. This event highlights the unexpected dangers and her innate fight-or-flight response.

Detailed personal anecdote about the Uber driver.

Fiona discusses how people often assume physical disability implies mental disability due to her slower speech. She recounts an incident where she had to convince security guards she wasn't 'mentally disabled' while trying to protect a friend from an assailant. She also highlights the lack of accessibility in many public spaces, especially older venues like comedy clubs or New York City restaurants, often forcing her to wait outside. She notes that disabled people are the 'most inclusive minority' because anyone can become disabled, yet they still face significant progress barriers, largely due to the cost of accessibility.

Personal anecdotes, observations on societal assumptions, and comments on accessibility.

Despite being given a life expectancy of 40 and told she would lose the ability to walk, talk, see, and hear, Fiona now has hope for a cure. She is on a medication called Sky Claris, which pauses the progression of her disease, and believes a full cure, allowing her to relearn walking, could be 5-10 years away. This shift has forced her to re-evaluate her life choices, as she previously lived with a 'what's the point?' attitude, but now anticipates a longer, healthier future.

Discussion of medication, life expectancy, and future outlook.