Reading · Rare Disease Girl

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Cheers to my RDG Readers -

It’s sometimes hard for me to grasp the wild journey that is my life. I was reflecting this week on how volunteering with patients at Cedars each week keeps me honest. It reminds me every Tuesday how far I’ve come from those scary days in a hospital bed, not knowing if I’d ever leave alive.

And then I find myself in moments that feel so far away from those scary days, but they come along with me like a strange old friend who is always proud of me but also doesn’t let me forget.

One moment last month, an Emmy For Your Consideration event for HBO’s The Pitt felt especially nuanced.

They hold these events in hopes of snagging Emmy nominations for the show and the cast and they invite voters to attend screenings, talk-backs, and parties. This one took place at the Academy Museum - just down the street from Cedars, a place I attended a few times pregnant with July in preparation for The Academy podcast I worked on before her birth.

I was there as a time bomb… and I returned healed from the blast.

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But first, Zach’s new album is here and it’s MAGIC- featuring Ed Helms, Ivan Neville, and Theo Katzman(Vulfpeck). Please give it a listen. You’ll probably hear our journey a lot in these melodies. Some of these were written in the depths of challenge and I so grateful to be here to hear them. Give it a listen, add these songs to your playlists, and a share if you like it. It helps support our family!

One of my favorite shows of late is HBO’s The Pitt. I’ve written previously about the series - and despite having my own high stakes resuscitation and how they throw words around constantly that were on my own chart - I still manage to enjoy the show. I went into a deep dive about previously on the show and emergency medicine.

Also, I was born outside of Pittsburgh so there’s an added connection. As a tiny kid, when we’d head downtown my mother would say, “We’re going to the Pitt!”

Which tracked because to go there, we’d drive through a series of long tunnels and down the mountain.

So when I watch the show, I think, “I’m going to the Pitt!”

I appreciate the show on a different level than maybe most others. Season 2 has me thinking more about how this kind of media is changemaking.

They hold a mirror up to the health system - for better and for worse - championing its heroes while shining a stark light at its challenges.

But one episode in particular was a haunting watch this season.

And I had the opportunity to watch it again on the big screen at the Emmy’s For Your Consideration Event at the Academy Museum.

A pregnant mother having a high stakes birth - I won’t reveal the outcome for spoilers - but many of the symptoms were too familiar to me from the inside. They resembled my own.

The character had HELLP Syndrome - a life threatening condition that thankfully resolves upon birth. It’s something that my team thought I had. It can often get confused with atypical Hemolytic Uremic Syndrome because they present similarly. And it’s more common, so doctors often assume HELLP before aHUS.

This mother character was portraying a free birther - a movement of people giving birth without medical involvement. It’s a movement that has always made my heart hurt. The online medical system fearmongering has such a powerful, deadly influence.

Sometimes this fear from the public is founded in the cracks of the broken system - where patients feel unheard. And that erosion of trust has consequences. And I do think the problems with the system (and a large subset of the physician mentality) have inflamed communities like this and I’m not sure they’ve done enough to take responsibility at all for it.

Dismissing patients and their concerns helped us get to this breaking point. And I believe the path forward is Shared Decision-making - a place where doctors and patients are more collaborative. It’s a trust-building approach.

However there are times where you’re unconscious and can’t collaborate - so trust earned does come in handy at the bleakest times.

We are at a point in time where people have swung too far from science. And the cost can be deadly.

Seeing this fight to save the baby and mother on the big screen hit me harder. I couldn’t hide on the second screen that is my phone or play a round of Wordle or snuggle my dog. It was large, intense, and viscerally replaying before me… with a party after!

And to know once, I was the woman on the table - swollen, bloody, dying, and making my doctors sweat with stress - is a hard pill to swallow.

Then I found myself in a room buzzy with free drinks, loud live-band karaoke, and famous people.

Emmy Winner Katherine LaNasa, Dana in The Pitt.

Life will take you from the depths of fear in an ICU to waiting in line for a drink called the “Dr. Robby Sabbatical” made with blanco tequila, watermelon juice, lime juice, basil, and simple syrup.

I am so grateful for my weird and wild life. And I hope I can make something that is beloved and yet a truthful mirror to the world - helping it be a better place.

And yet despite the show’s stark similarities to some of the scariest moments of my life, I still really love the show. It’s a place to see truth play out in fiction. It’s a place where courage is modeled, especially in the doctors and nurses and often by patients.

(I’d love to see more from the patients, but that’s for another post).

This week on A Fighting Chance pod (one of the shows I produce) Jane Fonda talked about how modeling courage on screen is important. We so rarely get to see courage in real life, but when we see it playing out through our favorite actors it can show us how to show up for the important things in real life.

I hope this is true for others who see my writing, videos, and speeches. By showing people how I was courageous in the face of challenge and how I speak truth to power, others can see how that is possible in themselves.

Art reflects life and life reflects upon art. It’s a relationship as old as the Ice Age. Cave paintings primarily served symbolic, spiritual, and educational purposes. And art still does that today. The Pitt does this. Art is a mirror and it’s not always a perfect picture, but maybe that reflection can help teach us something valuable about ourselves.

It’s a mutual relationship that can help us make better art and make a better world.

Your supportive comments help fuel this work too. Do you all watch The Pitt? Thank you all so much!

Going to The Pitt

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