Susannah Cahalan

Susannah Cahalan

Movies

The worst moment of my life is now a feature film

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.

Susannah’s hospitalization (left) for autoimmune encephalitis was chronicled in her book “Brain on Fire” and a film adaptation (right).

Even with all this good news, I was sure this would be the end of the road. Most potential book-to-movie adaptations don’t even make it past this stage.

Despite my naysaying, the Hollywood machine started to hum.

The script came together over months. I got to take peeks at various stages of development, trying (unsuccessfully) to hold my tongue and tamp down my urge to cut and rewrite. I offered changes; few were taken. I worried about what my loved ones would think. (Stephen, for one, would like you to know he’s never played guitar naked.) I agonized over the director’s decision to remove my brother from the script, and I pushed (again, unsuccessfully) for the movie to add more about the long recovery process. As the production wore on, I began to realize that I was nothing but a bit player in my own life story.

I did get to consult on the medical aspects, which was a tremendous relief. Dr. Najjar also consulted on the script, rendering it scientifically sound.

Once the script got into working shape, names of other cast members started to trickle in — “Hobbit” dwarf king Richard Armitage would play my father and Carrie-Anne Moss of “The Matrix” would play my mother, which prompted rounds of jokes about how the Cahalans were a family of superheroes. I heard about some of the casting from producers — Tyler Perry was confirmed last-minute to play my New York Post editor with a heart of gold, Navid Negahban as the brilliant Dr. Najjar, and Jenny Slate as my Post colleague and best friend.

I still didn’t believe that it would actually happen — until the day they started filming.

Midway through the month-long production schedule, James and I boarded a flight to Vancouver. The set was on an abandoned psychiatric hospital — a reminder for me of where I could have ended up had I not been so lucky.

The three days on set went by in a fabulous blur. We watched Moretz transform from a mature and funny teenager into a raving woman who ran shrieking down the halls, desperate to escape. We watched her grow rigid and stiff, portraying the time I became catatonic. We saw her seize, a violent scene that was as unsettling as the real thing.

I was struck by Moretz’s bravery. She so inhabited the role, giving me new insight into how hard it is to really commit as an actress. Moretz committed in spades.

“I’m so grateful you took on this part,” I said to her during a break.

We hugged. “I’m going to cry,” she responded.

I was numb with shock. Was that really my name in a movie?

James and I watched actors shoot and reshoot for hours without ever getting bored. The crew seemed tickled by our visit — for them, I was a reminder that I was a living, breathing person. We hung out with Moretz and her family in her trailer. We got to rummage through Erin Sinclair’s thoughtful set designs — she had read my book and made a recreation of the hematite ring that I still wear.

Then came the cherry on top. The crew fell in love with James and conspired to get him a cameo alongside me. They sent us to hair and makeup, dressed us up in white lab coats and situated us in the background of a scene that was unlikely to be cut.

James took the part seriously, mouthing words to make it appear like we were discussing a case: “Her blood is flowing at an abnormal rate!” as I struggled not to mess up the shot with my laughter.

“This must be so hard for you,” one producer offered as we watched an emotional scene between Moretz and Armitage.

But it wasn’t. As dramatic as it was to watch these scenes unfold on camera, I hardly remembered the real thing.

One year later I watched the movie’s first finished cut. The producers screened it for me and Stephen, whom I’d married in 2015, in an empty theater in Bushwick, Brooklyn. My heart raced as Moretz’s voice opened the movie “My name is Susannah Cahalan . . .”

I was numb with shock. Was that really my name in a movie?

I felt Stephen’s body tense beside me during the first of many seizure scenes. He didn’t have the luxury — like I did — of forgetting what had happened. For me, it was more edifying than upsetting. I remembered watching that scene at a distance thinking, “Oh, so that’s why everyone was so upset by my seizures.”

I laughed when I spotted my brother and my cameo. And I whooped when I recognized my real hospital footage and brain MRI scan. It was still fun — still out of body. Until Dr. Najjar appeared on the screen. The day Dr. Najjar visited my hospital room after weeks of misdiagnoses and mystery was a life-changer. He spent an hour in that room, took pages of handwritten notes and then asked me to draw a clock, a breakthrough moment in my diagnosis — none of which I remember. I sketched a clock with all the numbers crowded on the right side and none on the left. This indicated to Dr. Najjar that the right side of my brain was inflamed, prompting him to order a spinal tap that later gave me the diagnosis that would save my life. “Her brain,” Dr. Najjar told my parents, “is on fire.”

But it was the warmth and pathos captured by actor Negahban that broke down my defenses. I still couldn’t remember that moment — this pivotal moment in my survival — but now it was on the big screen, a chance for me to experience it for the first time.

Stephen took my hand, and I fought the urge to shield my face. The floodgates opened. Hot tears started to stream down my face. I staggered out of the theater, a little upset, a little disoriented, still in shock.

In the aftermath of those opened floodgates, I grew territorial. I started to obsess over the changes that the movie had made, the things I felt it got wrong. New fears started to crop up about how my family would handle it all.

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?