The Foundation is honoured and grateful to Suzanne K., a survivor of anti-NMDA Receptor encephalitis, for providing us with her personal thoughts on the movie premiere of Brain on Fire. Suzanne’s own story is one of the very earliest and best recorded cases in the medical literature of anti-NMDA receptor encephalitis. Her story began in 1998, when the disease was still 9 years away from being identified. I remember, when she first shared her story on the Canadian FB Support group, https://www.facebook.com/groups/antinmdacda/#_=_ , with the opening phrase: “It has a name!”
You can read her story here: https://www.antinmdafoundation.org/patient-stories/stories/suzannes-story/
I attended the world premiere of, Brain on Fire on September 16, 2016. Here are my thoughts of that evening, as a survivor of Anti-NMDA Receptor Encephalitis:
Days leading up to the premiere I was mixed with emotions. At times, I felt unsettled because I knew I would be revisiting a very dark period in my life, but I was also thrilled that this movie would put another spotlight on this horrible disease, bringing more awareness to it and in turn, saving lives. I reflected on what that night would mean to the Anti-NMDA community – for me it was HOPE. On two nights, this disease would receive the attention it deserved and for some audience members they would be hearing the words ‘Anti-NMDA Receptor Encephalitis’ for the first time. Before watching the movie, I kept in mind that this was Susannah’s story and her experiences. This disease can present itself in so many ways and the degree of severity can vary from patient to patient but the message would be clear – others need to be informed on what this disease is and how someone can be affected.
Nothing could have prepared me for the emotions I would feel that night. There were scenes in the movie that echoed some of my own experiences and although I do not have memory of them all, they were validated by my mother, as I watched her from the corner of my eye nodding her head. Scenes where Susannah was tied to her hospital bed and her attempts to flee gave me chills, as I remember my family sharing those same events with me after I woke up from a coma. For me, seeing Susannah and her family’s struggle to get answers from doctors when they did not have them reminded me of my own frustrations and fear. During the movie, I began to switch my focus to my parents. My family advocated for me and fought this battle hard. Without memory of what my family had gone through during the first occurrence of this disease, it really hit home watching it on the big screen. I saw Susannah’s health decline and the struggles her parents faced. It brings me to tears when I think about the horror my family went through and the tough fight they had ahead of them, with few answers.
The night of the premiere was an emotional one for survivors, caregivers and even for those who did not have a connection to this disease. This important movie shed light on how a life can change so drastically, how devastating it can be, and how members of a family can be affected. It was a reminder that doctors from different specialties need to be aware of the symptoms and to communicate with each other. It has opened the door for more conversation and awareness as it has brought together all those affected.
Since the premiere, I have felt many emotions but mostly beautiful ones. My eyes tear up when I remember how magical that night was. I was touched to see the Director, Gerard Barrett and Dr. S. Najjar, the doctor who treated Susannah, speak so passionately about the importance of awareness and understanding of this disease and the emotions felt by lead actress, Chloe Grace Moretz and producer, Charlize Theron. Survivors and caregivers representing their loved ones shared a special moment with them on stage and backstage. A highlight for me was meeting Susannah Cahalan and thanking her personally for bringing her life story to so many. I had the pleasure of meeting other survivors and caregivers who shared their own personal journey and we can now call each other family. We shared the night in spreading awareness by distributing pamphlets and buttons and enjoyed a dinner together after the movie. Through laughter and tears we shared one unforgettable night.