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Chloe grace Moretz and also Susannah Cahalan ~ above the red carpet at the Toronto movie Festival in 2016.REUTERS
INT. HOSPITAL / SUSANNAH’S ROOM — day (NEXT DAY)

STEPHENTalk to me Susannah…She speaks really low, as if shedding her voice.

You are watching: Brain on fire based on true story

SUSANNAHI just…I just…Stephen not breaking the gaze. She voice quivering.

SUSANNAH (CONT’D)I just. I just. Ns scared. I’m so scared. Ns so scared here. It’s prefer nobody is yes, really talking to me, me, Susannah. I feel therefore left out. Ns don’t understand what is walk on. I’m so lonely here.Eyes him so deep, wanting no hope to say—

SUSANNAH (CONT’D)I really love you. I don’t know. Ns love you. I need you. I really require you here.Stephen tenderly grasps her hand. Eyes she deep too—

STEPHENLook at meShe does—

STEPHEN (CONT’D)I love you, too. So much.

This no close to how it yes, really happened.

The true story of how my husband, Stephen, and I exchanged our an initial “I love you’s” — chronicled in mine 2012 memoir “Brain top top Fire” — occurred deep in a hallucinatory psychotic episode external a crowded Maplewood, NJ, restaurant. The was the perfect moment, I thought then, to express my feelings come the guy who was my new boyfriend in ~ the time.

So, it was truly bizarre to watch two actors play the end this intimate step in prior of the cameras in a completely different setting, as I watched on indigenous the following room.

It to be Aug. 4, 2015, my an initial day ~ above the set of “Brain ~ above Fire,” a movie premiering Friday top top Netflix based upon my memoir. The movie, like the book, chronicles mine life as a 24-year-old brand-new York article reporter the year of mine unraveling — when overnight i became another person, a hostile, psychotic, unhinged human being who was deeply ill.

Doctors to be flummoxed. In spite of the difficult symptoms, they can not discover a cause and attributed the adjust to a psychiatric break. That is until my very own “Dr. House,” Dr. Souhel Najjar, diagnosed me with the freshly discovered brain disease called autoimmune encephalitis, a treatable condition that can, in part cases, be cured through swift and aggressive treatment. I was the 217th human to have been diagnosed v the an illness that gained its name just two years before my diagnosis — and also after a year the immune-therapy therapies I had actually made a complete recovery.

I arrived on set around 10 a.m. With my brother James, who joined me to carry out moral support and also to best a wrong: James, mine rock once I was many sick, had actually been edited the end of the script and I was established to at the very least land that a cameo.

Producers inserted us in director’s chairs in “video village,” a room complete of monitors catching the activity in actual time.

When ns heard cutting board Mann, the actor play Stephen, utter: “Susannah” with such passion and also concern, mine stomach did somersaults. This was yes, really happening. James elevated his eyebrows and elbowed me together we both struggled to take it it in.

When my an illness nearly destroyed me in 2009, my medical professionals thought I’d be happy to reclaim 80 percent of my cognitive abilities. Once I to be at my sickest, i couldn’t read or write. I can barely to walk on my own or groom myself. The an illness felled me physically and also mentally — robbing me, briefly however intensely, of mine wits, mine sanity, my memory, my self.

Somehow versus all odds, the worst minute of mine life was now the subject of a feature film.

I still remember the call that collection this improbable chain of occasions into motion. In 2013, Charlize Theron’s production company signed ~ above to it is adapted the movie. However the film was in a holding pattern as various directors and also stars came to be attached and also then unattached.

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

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

The price in my case was Moretz, a superstar that was climate 19.

Theron, meanwhile, was a stalwart. She had currently secured a newbie Irishman to direct, though I had avoided city hall his buzzy award-winning debut film since I feared over there were just downsides: too good and I’d acquire my hopes up; terrible and also I’d it is in despondent.

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Susannah’s hospitalization (left) because that autoimmune encephalitis to be chronicled in her book “Brain ~ above Fire” and a movie adaptation (right).

Even with all this good news, ns was certain this would certainly be the finish of the road. Most potential book-to-movie adaptations don’t also make it past this stage.

Despite mine naysaying, the Hollywood maker started to hum.

The script came with each other over months. I gained to take peeks at miscellaneous stages that development, do the efforts (unsuccessfully) to organize my tongue and also tamp down my advice to cut and also rewrite. I available changes; few were taken. I worried around what my loved ones would think. (Stephen, because that one, would favor you to recognize he’s never played etc naked.) ns agonized over the director’s decision to remove my brothers from the script, and also I propelled (again, unsuccessfully) for the movie come add more about the lengthy recovery process. As the manufacturing wore on, I started to realize that i was nothing yet a bit player in my very own life story.

I did acquire to consult on the medical aspects, which was a tremendous relief. Dr. Najjar additionally consulted ~ above the script, rendering it scientifically sound.

Once the script got into functioning shape, names of other cast members started to trickle in — “Hobbit” dwarf king Richard Armitage would play my father and also Carrie-Anne Moss the “The Matrix” would play mine mother, which motivated rounds that jokes around how the Cahalans to be a family members of superheroes. I heard about some that the spreading from producer — Tyler Perry was evidenced last-minute to play my new York write-up editor through a heart of gold, Navid Negahban as the excellent Dr. Najjar, and Jenny Slate as my write-up colleague and best friend.

I tho didn’t believe that it would certainly actually occur — until the work they started filming.

Midway through the month-long manufacturing schedule, James and I boarded a trip to Vancouver. The set was ~ above an abandoned psychiatric hospital — a reminder for me of where I might have ended up had I not been therefore lucky.

The 3 days on collection went by in a fabulous blur. We watched Moretz change from a mature and funny teenager into a raving woman who ran shrieking under the halls, no hope to escape. Us watched her thrive rigid and stiff, illustrating the time I became catatonic. We observed her seize, a violent scene that was together unsettling together the actual thing.

I to be struck by Moretz’s bravery. She so occupied the role, giving me brand-new insight into how tough it is to really commit as an actress. Moretz cursed in spades.

“I’m so grateful you take it on this part,” I stated to her during a break.

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

I was numb v shock. Was that really my surname in a movie?

James and also I watched actors shoot and reshoot for hrs without ever before getting bored. The crew appeared tickled by ours visit — for them, ns was a reminder that ns was a living, breathing person. Us hung out through Moretz and also her family members in she trailer. We acquired to rummage through Erin Sinclair’s thoughtful collection designs — she had actually read my book and made a recreation of the hematite ring that i still wear.

Then came the cherry on top. The crew dropped in love v James and also conspired to get him a cameo alongside me. They sent us to hair and makeup, dressed us up in white rap coats and also situated us in the elevator of a scene the was unlikely to be cut.

James take it the component seriously, mouthing indigenous to do it appear like we were pointing out a case: “Her blood is flow at an abnormal rate!” together I struggled no to chaos up the shot v my laughter.

“This must be so tough for you,” one producer available as us watched an emotional scene between Moretz and Armitage.

But that wasn’t. As dramatic together it to be to watch these scenes open on camera, ns hardly psychic the actual thing.

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

I to be numb with shock. Was the really my name in a movie?

I feel Stephen’s body tense beside me throughout the an initial of plenty of seizure scenes. The didn’t have actually the luxury — favor I go — of forgetting what had happened. For me, it was much more edifying than upsetting. Ns remembered watching the scene at a distance thinking, “Oh, so that’s why anyone was so upset by mine seizures.”

I laughed as soon as I spotted my brother and also my cameo. And also I whooped once I recognized my actual hospital footage and brain MRI scan. It to be still fun — still the end of body. Until Dr. Najjar showed up on the screen. The day Dr. Najjar saw my hospital room after ~ weeks of misdiagnoses and mystery was a life-changer. He spent an hour in that room, took pages the handwritten notes and also then request me to attract a clock, a breakthrough minute in mine diagnosis — no one of which ns remember. Ns sketched a clock with all the numbers crowded on the right side and also none on the left. This suggested to Dr. Najjar the the best side that my brain was inflamed, prompting him to order a spinal tap the later provided me the diagnosis that would save my life. “Her brain,” Dr. Najjar told mine parents, “is on fire.”

But it to be the warmth and also pathos caught by actor Negahban that broke down mine defenses. Ns still can not remember that moment — this pivotal moment in my survival — yet now it to be on the huge screen, a possibility for me to suffer it because that the an initial time.

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

In the consequences of those opened up floodgates, I prospered territorial. I started to obsess end the transforms that the movie had made, the points I felt it obtained wrong. Brand-new fears started to chop up around how my household would manage it all.

I acquired trapped in a loop that many writers get caught up in as soon as their stories room turned into films. Girlfriend feel her baby has been bastardized, made into something no much longer your own, a emotion akin to looking in a mirror and suddenly recognize you’re lacking your nose.

When “Brain ~ above Fire” premiered in ~ the Toronto film Festival in 2016, ns fixated on inconsequential things choose what dress I would certainly wear and how lot weight I wanted to lose. I lost my perspective.

This year, the movie came out in theaters across the globe prior to its relax in the US, prompting a glut of e-mails from other survivors of every kinds the illnesses the knocked the sense ago into me.

“I to be a 35-year-old woman from Indonesia . . . Ns watch your story in ‘Brain on Fire’ a few days ago, heart warming and also amazing because that me. Your story has lugged my spirit and hope back. Perhaps I can additionally be like you, girlfriend know, to it is in heal and earlier in shape 100 percent. Possibly I can defeat this disease.”

“I come indigenous Greece. I watched the movie last night ‘Brain top top fire’ and also my mind obtained crazy . . . I have a sister who is 42 years old now. The story is so similar with her story, two years back she started her storage she even forgot whereby she lives.”

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

Yet, below I am.

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I establish then that none of my small problems about the movie mattered. The movie was not my story no longer — because it to be no longer simply “my story.”

So i lay under the sword I had no organization picking up in the very first place, having realized this movie is not about me.