Happy weekend, friends. Here is a long but significant piece. Thank you for reading!
So I had quite the experience last Friday. I met Kurt Eichenwald, and we had a meaningful conversation together. I did not expect any of this to happen.
In one sense, many of the pieces that led to this meeting have been underway for a while, swirling about throughout my year. Yet at the same time, the actual opportunity to meet with Kurt Eichenwald came very quickly and in ways I never anticipated. After all, only nine days before, I had just finished reading his book.
I will talk with you about that book and our meeting, but first, let me give you a brief introduction to Kurt Eichenwald himself:
Kurt Eichenwald is an an investigative reporter. For many years, he worked for The New York Times, and he was nominated twice for the Pulitzer Prize in journalism. He’s written five books, including The Informant, which also became a movie with Matt Damon. He has a very large following on Twitter where he tweets regularly about politics. I’ve known him in this particular capacity for the last few years, and when he shared a very personal story on Twitter this summer during the testimony of Christine Blasey Ford (also in the book, see below) I sent him a friend request on Facebook in the off chance that he might accept it. (He did! More about that below too).
He recently released A Mind Unraveled, his new book. It’s a memoir, and this time, he turns his investigative reporting toward his own life, telling his story of living with intractable epilepsy.
The book is moving and so well written. Frankly, it’s hard to put down. The largest portion of A Mind Unraveled tells the story of how Kurt Eichenwald was kicked out of Swarthmore College in a horribly discriminatory way (you can read that story in a much shorter format here: I Was Kicked Out of School for Having Epilepsy) and how he fought his way back in. He is tenacious.
In A Mind Unraveled, Kurt Eichenwald also discusses abusive practices of his first neurologists, how he nearly died when his medications were prescribed at toxic levels over a very long stretch of time. And painfully, he also speaks openly for the first time about a sexual assault he endured after having a seizure in New York City, the details of which he cannot access fully because he was still incapacitated when it happened.
All of these things were horrific for him to endure. They’re also upsetting to read about. But above all, in A Mind Unraveled, Kurt Eichenwald seeks to share his journey of working through trauma and overcoming it. He shares how he moved toward his long hoped for family and career, and how he has integrated these these challenging experiences in ways that have positively formed his identity. Through the book, he is also becoming a public advocate for the epilepsy community.
It’s a phenomenal read. I recommend ordering it.
Now, here’s my experience engaging the book. . .
In November, I bought A Mind Unraveled at Literati, a local bookstore in Ann Arbor. When the staff member rang it up and handed the book back to me, I had an instant, split-second instinct to funnel the book away into my bag quickly and hide it.
“Oh wait,” I thought, “I don’t have to do that anymore.” I smiled.
I remembered times during my teenage years when I would sneak away secretly to the public library to read whatever I might be able to find about epilepsy, the condition I also had but did not fully understand. By that point, my epilepsy had faded fully into remission. I didn’t have it anymore. But what happened…?
From diagnosis to its natural fading in adolescence (I had a type where that often happens), I kept my epilepsy hidden from everyone. I felt a great deal of shame about what I didn’t fully understand, and I never spoke about any of this until my mid-20s. Now I realize that feelings of shame and secrecy are quite frequent among people with epilepsy, though that need not be the case.
This year, I made a decision to start speaking and writing much more publicly about my own epilepsy story. As I wrote here this summer, I found myself wanting to reclaim this experience. It’s been a long time since I’ve had active epilepsy, but I did have this for one-third of my life, which is no insignificant amount of time. And I had it during my earliest, formative years.
It’s been a long while since this experience was a secret, but I’ve also never gone so public with my own story. A number of significant relationships, conversations, and experiences began to move me in this direction this year. I’m glad they did.
I decided to start speaking publicly and broadly about this for two reasons:
1) First, I recognized that most people who know me still had no idea that I grew up with epilepsy. Even those closest to me who have known something of this experience still had no idea how deeply formative it was for me.
2) Second, I realized that I want to become a public advocate. All year long, this has become increasingly important to me. Epilepsy is very common — 1 in 100 people have it actively; 1 in 26 people will have this diagnosis in their lifetimes; 1 in 10 people will have a single seizure at some point in their lives; such big numbers! — but due to a long history of stigma, epilepsy is rarely discussed publicly, and research is underfunded.
Discrimination still happens too. Resonant with Kurt Eichenwald’s experience, a student with epilepsy had to leave Notre Dame in the last academic year because the university continually refused to accommodate his request for a private room, which he needed medically to ensure he got adequate sleep. Last week, a high school athlete with epilepsy was publicly mocked during a basketball game.
So in the midst of all of this, I have been asking myself… what do I do with my story? It’s been resonating within me. … what do I do with my story?
As you can imagine, it was quite meaningful to read what Kurt Eichenwald has done with his own story. After picking up the book, I devoured it, reading it from cover to cover quite quickly. I was deeply moved by his stories and his perseverance. I appreciated the ways he framed the book, and I’m inspired by how he is engaging community around it.
Then, in direct response to reading the book, I started writing some of my own storytelling too. In fact, I’ve written a piece that I will perform at a storytelling event in Ann Arbor in February. It felt wonderful to do this.
Then, quite unexpectedly, the two of us had an occasion to meet. . .
Just a couple days after finishing the book and writing my own piece, I saw that Kurt Eichenwald was coming to Ann Arbor to do a book signing. But… I had a final dress rehearsal for Handel’s Messiah at the very same time and was quite sad when I realized I would have to miss it.
So in the off chance that someone might be able to take my book to the book signing and pass along a note of appreciation to him, I wrote a Facebook post to see if anyone might be interested to go to the event. As I was typing his name in the post, Facebook emerged with an option to tag him, and without thinking about it, I just did it. I wasn’t sure if anyone was going to be available, but I thought it was a good idea to try.
Then, a person responded… Kurt Eichenwald!
Later that night, I received a personal Facebook message from him with a phone number, suggesting that I give him a call so we could find an alternative time to meet on Friday. This was so generous.
The next day, I admit, I was nervous to make that call. I even wrote out what I hoped to say and practiced it ahead of time. When I called, I expected to leave a voicemail, and perhaps he would call or text back. But Kurt actually answered. We were able to connect over the phone for a bit. I told him that his book meant a great deal to me and that I had done some of my own writing in response to his. Then, we decided to meet the next day at the office of the Epilepsy Foundation of Michigan in Southfield after he was finished meeting with their staff.
So the next day, I headed over. Again, I was a little nervous, but once I stepped into that office, everyone greeted me so kindly. And when I said that I was here to meet with Kurt, he exclaimed,
“Here’s Renee, the only person I’ve ever responded to on Facebook. You really are the only one!”
This was not solely because of what I had written, but mainly because Kurt never opens Facebook. He just happened to do so very briefly and my request about the book signing emerged at the top of his newsfeed. Then, because he reached out, I became the sole, lucky recipient of a personal Facebook message from Kurt Eichenwald.
We had a very meaningful conversation together with such lovely commonality between us. We talked about what it’s like to come forward with stories we had at various points kept hidden. We talked about the importance of speaking those stories now, because due to stigma and tangible forms of discrimination, too many people are still having to keep their experiences hidden.
And then, I had a chance to pass along to him what I had written personally in response to his book along with a letter of thanks for what he is doing.
In the midst of this, I just marvel… After engaging questions about how to share my own story, I found his masterful book, sharing his own. I read it quickly, told many people about it, and then… nine days later, I met him, shared commonality with him, and now he’s reading me.
What an amazing, unexpected gift!
If you’d like to talk more about any of this, feel free to leave a comment, send me an email at firstname.lastname@example.org, or send me a Facebook message. I respond to Facebook also! 🙂