Columnist Petra Mayer dies at 46 from rare ALD

Written by CNN Staff Petra Mayer, NPR’s senior editor for books, and the assistant editor for book reviews at NPR’s website, died on Tuesday at the age of 46, NPR announced. The death is…

Columnist Petra Mayer dies at 46 from rare ALD

Written by CNN Staff

Petra Mayer, NPR’s senior editor for books, and the assistant editor for book reviews at NPR’s website, died on Tuesday at the age of 46, NPR announced.

The death is from a rare cancer known as adrenoleukodystrophy, or ALD.

For those of you who have enjoyed her book reviews at NPR or KCRW, you know that she was always razor-sharp and jovial. We feel honored to have worked with her and watch the world learn more about our wonderful world of books.

Mayer is survived by her parents, Michael and Julia Mayer, a brother, Benny Schwartz, and her husband, Jonathan Fish.

Petra’s story is an intimate one. A reporter at The Washington Post, she was diagnosed with ALD when she was 30, years before most patients are diagnosed. Through it all, she remained upbeat and even learned to play the violin, though she said that a guitar might have been more her interest.

As NPR’s senior editor for books, she wrote reviews of books from the bestselling memoir “Shiver” by Renee Fleming to this year’s bestsellers “Life Under Sail” by Christina Baker Kline and “Lost Girls: Three Women at War in the Congo” by Carrie Tarafee.

Below is a special reflection by Mayer for ALD — and memory of her — as she said it made her think:

Dear friends,

I recently wrote that what gets lost in the shuffle in this age of “transparency” is the number of adults in our community dying from ALD. In fact, there are only a handful of doctors in our area – one in Dallas and one in Boston – with full-time expertise in the disease. But, we don’t know the best way to talk about it. Nobody knows what it is; no one knows how it manifests; no one knows anything about what to do when it strikes.

I left work one day and called the one doctor in Dallas. He listened, he made some recommendations, and then he said, “It’s really bad, and I don’t know if you’ll be around to see them.”

I left that conversation feeling horrified. But I didn’t feel helpless. Maybe this is why I’m surprised that my community has yet to open up about ALD in a serious way, and why I feel comforted by knowing that doctors are very worried and very worried for the people I met.

I understand that talking about ALD is hard. By now, most of my friends understand that talking about ALD is wrong, and they do it anyway.

I hope that you will also speak about ALD openly, and that if you suffer from ALD, you feel informed.

I really hope that you will have those conversations with your families and your friends, and it will be painful, and those tears will be heavy, and then you’ll know that you’re not alone.

(To be added to my ALD support group, email [email protected])

We’re going to miss you, and I’ll ask that you tell your friends to find ALD coverage where they can.

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