Leigh McGowan’s illness has a Two-to-Three Year Life Expectancy — She Was Diagnosed in 2008

According to Leigh McGowan, the scene has the quality of a moment that completely changes everything that comes before and after it. Three medical professionals. a space. Quiet. Six months prior, she had given birth to her son Lochlan. During that summer, she experienced increasing dyspnea, was unable to dance the way she had always danced, and felt her body slow in ways that were incomprehensible for her age.

After diagnosing pulmonary arterial hypertension, a rare condition in which the arteries that carry blood from the heart to the lungs gradually narrow and raise pressure to dangerous levels, the three doctors fell silent. McGowan questioned whether it would kill her. More quiet. She inquired once more. Eventually, one physician said, “Well, everybody dies,” with a certain kind of medical precision that hits like a punch. They meant that a typical life expectancy of two to three years was associated with the condition.

Leigh McGowan — PoliticsGirl, Commentator & PAH Patient

It was in 2008. She is still present. She continues to record videos from her Los Angeles kitchen, making gestures for the camera, squinting, and modulating her voice—all skills she developed over years of acting—to make her point. She has 240,000 followers on Twitter under the handle @IAmPoliticsGirl and more than 400,000 on TikTok and Instagram under the handle @BreakfastRant. She makes a stronger case for the Democrats than the Democrats themselves, according to an on-air statement made by MSNBC’s Brian Williams. After that video went viral, her fan base doubled overnight. This was not the plan at all. In a way, the plan was simply to survive.

Because it is invisible, pulmonary arterial hypertension, or PAH, is one of those conditions that is hard to explain to those who do not have it. McGowan has stated that she appears to be in perfect health, with the clarity that comes from years of explaining the same thing. She can conduct a dialogue, produce a podcast, and offer a biting political critique of the condition of American democracy. She is unable to carry groceries on her own. Her phone sounds an alarm every three hours, signaling the time for her medication and, in her words, a reminder that she is ill. She uses oxygen while she sleeps. Her body’s needs do not stop for travel arrangements, so every trip away from home necessitates a full suitcase of medical supplies rather than a carry-on.

The discrepancy between what the illness demands and what the outside world perceives is almost dissonant. McGowan’s ability to communicate effectively may stem from this gap. Due to sheer necessity, she has learned to manage two realities simultaneously: the public reality of someone who regularly and loudly shows up to talk about important issues, and the private reality of a degenerating condition managed hour by hour. Regarding her diagnosis, she has stated, “It really does crystallize what’s important and what is not.” “It changed the course of my life, and in many ways it changed who I am.”

Soon after the diagnosis, she started a blog called “In Case I’m Gone,” where she wrote letters to Lochlan for a future she wasn’t sure she would be there for. His age was six months. The median survival for the illness she was dealing with was measured in years rather than decades. The blog has persisted long after the initial prognosis. Every time a new entry is made, it is a subtle act of defiance. McGowan began her career in political commentary with a similar impulse: after the Democrats lost the 2014 midterm elections, she began outlining the workings of the system in the cool, collected manner of someone who had grown up surrounded by civic engagement, with her father being a lawyer and Conservative Party mainstay in Toronto. The political atmosphere increased the urgency of the commentary. She claimed that by 2016, she was both heartbroken and enraged.

There is something genuinely remarkable about the math involved in someone managing a condition that doctors once recommended would take two to three years to develop into a powerful public figure. She has lived longer than the 2008 prognosis predicted, thanks to new drugs. However, PAH is still incurable. At any time, her condition might worsen. She is aware of this. In the same straightforward tone that she employs to describe voting rights or the workings of Congressional procedure, she has stated this without feeling sorry for herself.

It’s difficult to ignore the unique sense of urgency that permeates everything McGowan does, which is why the videos from the kitchen have significance, and the commentary feels distinct from conventional political commentary. She’s not acting with urgency. Her condition is treated in three-hour increments and is literally measured in pressure units. The alarm sounds. She takes the drug. She then returns to the camera because she still has something to say.