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The worst moment of my life is now a feature film

By Susannah Cahalan

Chloe Grace Moretz and Susannah Cahalan on the red carpet at the Toronto Film Festival in 2016.

 

 

INT. HOSPITAL / SUSANNAH’S ROOM — DAY (NEXT DAY)

 

STEPHEN

Talk to me Susannah…

She speaks really low, as if losing her voice.

 

SUSANNAH

I just…I just…

Stephen not breaking the gaze. Her voice quivering.

 

SUSANNAH (CONT’D)

I just. I just. I’m scared. I’m so scared. I’m so scared here. It’s like nobody is really talking to me, me, Susannah. I feel so left out. I don’t know what is going on. I’m so lonely here.

Eyes him so deep, wanting desperately to say—

 

SUSANNAH (CONT’D)

I really love you. I don’t know. I love you. I need you. I really need you here.

Stephen tenderly grasps her hand. Eyes her deep too—

 

STEPHEN

Look at me

She does—

 

STEPHEN (CONT’D)

I love you, too. So much.

 

This isn’t close to how it really happened.

 

The true story of how my husband, Stephen, and I exchanged our first “I love you’s” — chronicled in my 2012 memoir “Brain on Fire” — occurred deep in a hallucinatory psychotic episode outside a crowded Maplewood, NJ, restaurant. That was the perfect moment, I thought then, to express my feelings to the man who was my new boyfriend at the time.

 

So, it was truly bizarre to watch two actors play out this intimate scene in front of the cameras in a totally different setting, as I watched on from the next room.

 

It was Aug. 4, 2015, my first day on the set of “Brain on Fire,” a movie premiering Friday on Netflix based on my memoir. The movie, like the book, chronicles my life as a 24-year-old New York Post reporter the year of my unraveling — when overnight I became another person, a hostile, psychotic, unhinged person who was deeply ill.

 

Doctors were flummoxed. Despite the troublesome symptoms, they could not find a cause and attributed the change to a psychiatric break. That is until my own “Dr. House,” Dr. Souhel Najjar, diagnosed me with the newly discovered brain disease called autoimmune encephalitis, a treatable condition that can, in some cases, be cured with swift and aggressive treatment. I was the 217th person to have been diagnosed with the disease that got its name only two years before my diagnosis — and after a year of immune-therapy treatments I had made a full recovery.

 

I arrived on set around 10 a.m. with my brother James, who joined me to provide moral support and to right a wrong: James, my rock when I was most sick, had been edited out of the script and I was determined to at least land him a cameo.

 

Producers placed us in director’s chairs in “video village,” a room full of monitors capturing the action in real time.

 

When I heard Thomas Mann, the actor playing Stephen, utter: “Susannah” with such passion and concern, my stomach did somersaults. This was really happening. James raised his eyebrows and elbowed me as we both struggled to take it in.

 

When my disease nearly destroyed me in 2009, my doctors thought I’d be lucky to regain 80 percent of my cognitive abilities. When I was at my sickest, I couldn’t read or write. I could barely walk on my own or groom myself. The disease felled me physically and mentally — robbing me, briefly but intensely, of my wits, my sanity, my memory, my self.

 

Somehow against all odds, the worst moment of my life was now the subject of a feature film.

 

I still remember the call that set this improbable chain of events into motion. In 2013, Charlize Theron’s production company signed on to adapt the movie. But the film was in a holding pattern as various directors and stars became attached and then unattached.

 

Then I got the call: The producers had secured actress Chloe Grace Moretz, who shot to fame as the superhero character “Hit-Girl” in “Kick-Ass.”

 

Suddenly I had a real answer to that cocktail party icebreaker: “Who would play you in a movie?”

 

The answer in my case was Moretz, a superstar who was then 19.

 

Theron, meanwhile, was a stalwart. She had already secured a newbie Irishman to direct, though I had avoided watching his buzzy award-winning debut film because I feared there were only downsides: too good and I’d get my hopes up; terrible and I’d be despondent.

 

 

I got trapped in a loop that many writers get caught up in when their stories are turned into films. You feel your baby has been bastardized, made into something no longer your own, a feeling akin to looking in a mirror and suddenly finding you’re missing your nose.

 

When “Brain on Fire” premiered at the Toronto Film Festival in 2016, I fixated on inconsequential things like what dress I would wear and how much weight I wanted to lose. I lost my perspective.

 

This year, the movie came out in theaters across the globe before its release in the US, prompting a glut of e-mails from fellow survivors of all kinds of illnesses that knocked the sense back into me.

 

“I am a 35-year-old woman from Indonesia . . . I watch[ed] your story in ‘Brain on Fire’ a few days ago, [it was] heart warming and amazing for me. Your story has brought my spirit and hope back. Maybe I can also be like you, you know, to be heal[ed] and back in shape 100 percent. Maybe I can defeat this disease.”

 

“I come from Greece. I watched the movie last night ‘Brain on fire’ and my mind got crazy . . . I have a sister who is 42 years old now. The story is so similar with your story, two years ago she started [losing] her memory she even forgot where she lives.”

 

These e-mails reminded me how improbably lucky I am. I shouldn’t have been diagnosed as swiftly as I had been; I shouldn’t have recovered as fully as I did; I shouldn’t have been able to write a book that did as well as it did; and that book should never have been made into a movie.

 

Yet, here I am.

 

I realized then that none of my petty problems about the film mattered. The movie was not my story anymore — because it was no longer just “my story.”

 

So I lay down the sword I had no business picking up in the first place, having realized this movie is not about me.

 

This movie has the potential to save lives.

 

And what’s more important than that?