Jonathan Larson: A Diagnosis Too Late

If you’re a theatre nerd like me, you already know who Jonathan Larson is. He’s the man who gave us RENT, a rock opera that changed musical theatre and made way for hits like Hamilton today. And if you’re a fan of RENT, then you know that the reason we don’t have more from Larson is that he famously and tragically passed away the day before RENT opened off Broadway.

If you haven’t seen RENT, you really should. There is a movie version with much of the original cast, and productions are staged all the time all over the world. It’s a rock adaptation of the opera La Boheme, and it has become a timecapsule of a 80’s/90’s bohemian New York City that no longer exists.

But I’m not here to wax poetic on how great RENT is or how great Tick Tick Boom, an autobiographical one man show he did that has since been turned into another Broadway musical, is as well. I’m not here to talk about The Jonathan Larson Project, an album that just dropped yesterday and that I’m SUPER excited about. And I’m not just going to tell you that I have Jonathan on my mind because later this year I’ll be traveling to NYC and I’m so excited to see alphabet city and the places where he lived (but I will say I CAN’T WAIT!).

Let’s instead talk about Larson’s death, because it was entirely preventable, and one thing that his family and the stars of his hit musical have done with the popularity of RENT is try to educate people about Marfan Syndrome. While RENT focuses on the AIDS epidemic of the 80s, the story of the man behind it involves a different, but just as nefarious, disease.

Marfan Syndrome is a genetic disorder that affects connective tissues– the tissues that hold us together. It’s very treatable when properly diagnosed. Jonathan had many of the trademarks of Marfan: he was tall, thin, with long arms and legs. Looking at his medical reports in hindsight, many experts agreed it should have been caught. But Marfan was pretty unknown, even to some doctors. And as I’m sure many of you know from experience, a trip to the ER often ends without the correct diagnosis.

So what exactly happened?

Jonathan Larson had been working on RENT for seven years, and finally, it was about to open off Broadway. It was the final week of rehearsals. Larson was watching a rehearsal when he suddenly had severe chest pains. He told an actor to call 911, and said he thought he was having a heart attack.

The ambulance took Larson to Cabrini Medical Center, the hospital nearest the theater. He was pale, clammy, and struggling to breathe. An xray and an electrocardiogram came back normal (although in reexamination after the tragedy, experts noted red flags: the heart was too big, the aorta too long). The doctor diagnosed him with food poisoning and sent him home with a powerful painkiller.

The next day, Larson hadn’t improved. He called the hospital to ask if the tests actually showed food poisoning. They were unable to find the results but assured him if something was wrong, he’d be notified.

Every time I hear this story, I’m struck by how familiar it all sounds. Lack of communication, no answers, no urgency.

Larson stayed in bed, struggling to breathe, unable to eat anything except a little jello.

The next day, Larson’s chest pains were so intense he decided to return to the ER. His roommate called Cabrini and they said they wouldn’t have access to his records from his previous visit. So they instead went to St. Vincent’s, which was closer to their home than Cabrini (and ya know, since Cabrini had been sooo helpful).

St. Vincent’s: X-ray. EKG. Normal (except after his discharge, a dr noted lack of blood flow to the heart and a big difference between high and low blood pressure). The doctors sent him home saying he had a virus, and telling him to rest.

Larson attended the final dress rehearsal and even did an interview with the New York Times. He was described as “behaving gently,” his friends noting his low energy. Still, he was happy, and told the Times “I think I may have a life as a composer.”

Mere hours later, Larson was found unresponsive on his kitchen floor. A burner on the stove was still on, and a tea kettle was scorched black. He was home alone, making himself tea. That night, RENT would open for audiences, and rocket to mainstream popularity. His work and name would be famous in less than 24 hours.

Larson died of a tear in his aorta. It was over a foot long. He was 35 years old.

Both hospitals were investigated and fined by the Health Department, which is unusual. The Department investigates many cases, but rarely cites extreme deficiencies, and even more rarely issues fines. Cabrini and St. Vincent’s were each fined thousands of dollars.

This story highlights about a bazillion issues I could cover here: doctors not adequately addressing pain, a lack of education in both the public and the medical community about certain disorders, lack of access to medical records, lack of communication between practices, the question of if Larson would have received more attentive care one week later when he became a famous Broadway star rather than a very poor artist…

But it seems a little pointless, honestly, to go into the nuances of that, because I know the majority of you reading this have experienced some or even all of these problems. So many of our stories of chronic illness have long beginnings. Seeking care, getting misdiagnosed or not diagnosed at all, giving up for a while, trying again with another doctor, running out of money, self-treating…

The difference is that Jonathan Larson’s chronic illness story ended in the long beginning.

Things are slowly getting better. Larson’s family and friends have raised awareness of Marfan, and health activists like you and me are raising awareness of other things. Doctors are getting better. Hospitals are getting better. Technology is getting better. The system… well the system sucks, frankly. There’s still a lot of work to do.

Keep educating. Keep sharing articles like this. Keep calling your representatives and going to town halls. The world is worse off without Jonathan Larson. But while we’re all still here, we’ve got to do what we can. Whatever you do, do it. Make art. Help people. Because as much as the world is worse off, the world is also so much better for the time we had with Jonathan Larson. And it’s better off from the time it has with you, too.

It can be better. It is getting better.

Thank you, Jonathan Larson.

5 thoughts on “Jonathan Larson: A Diagnosis Too Late

  1. Again I am a Registered Nurse Researcher…joint hypermobility in the UK..
    I have 3rd time now seen a cardiologists who said oh it’s your Ashma back to see a POTs cardiologists this time I have found a man who looks for Marfan markers…I am going to research it for myself and set up a hypermobility support group. So sad we are all misdiagnosed!!

  2. I wanted to say that what happened to Jonathan Larson helped me. I don’t know if in some way this will help the fact that in my mind he did not live in vain not only for writing Rent but for helping to save my life. In February of 2015 when I could hardly breathe and hardly walk across the floor or parking lot I went to my doctor’s office and instead of admitting me like my insurance later told me, he sent me home for referrals! After two days of this I went to the hospital on my own; they then did angiograms and everything else and tried to claim that I had normal ejection fraction. My doctor actually came to the hospital and discharged me because he was on staff. I then decided to drive myself out of the service area to a different hospital where I was diagnosed with congestive heart failure and was down to 35% ejection that the other hospital missed. I did this because I actually truly remember the story about Jonathan. I don’t know who will see this or if this will help his family in some way but thank you! It’s six and a half years later and I’m still here and under the care of a good cardiologist for my different conditions. Needless to say I’m not with that primary care doctor anymore. Sincerely Elaine.

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