A friend of mine’s sister-in-law got sick lately. They couldn’t quite articulate what was wrong with her. A series of testing and an induced coma later, revealed that she had a neurological autoimmune disease (anti-NMDA receptor encephalitis), where your antibodies are fighting your brain. The doctors who took up her case advised her husband to watch a movie titled—Brain on Fire, to properly understand what his wife was dealing with. Thankfully she is fine now, but I want to bring awareness to the movie, for shedding light on this rare disease, which can help more people.
Susannah Cahalan was a young writer working with the New York Post. She was great at what she did, and her boss (portrayed by Tyler Perry), often gave her tasks to carry out. She lived alone in New York City and occasionally spent the night with her boyfriend. One night while they were asleep, she had a seizure. Thankfully her boyfriend was with her and immediately rushed her to the hospital. They gave her some medication and sent her back home. She felt okay that refused for her parents to take her home with them and soon went back to work.
One day she had a massive outburst at work, and her boss decided to call for her family, to take her home. Her parents were distraught. They took her from doctor to doctor, with the doctors insinuating that she probably had too much to drink, or was bipolar. Then the doctors advised that she needed to be taken to a psychiatric hospital, because of her occasional outbursts; she often heard voices in her head and saw things that weren’t there. But her parents refused for her to be institutionalized because they believed that their daughter was suffering from something else and it had nothing to do with her mental health.
Her boyfriend visited her every day at the hospital; he often played the songs he had written for her. He fell asleep on the chair by her bedside, waiting for the latest updates from doctors. Her parents were also by her side. It got to the point that she could no longer speak. Her hands were always in a fist-like position, like that of a baby. After a difficult conversation with the doctors and her parents one day, one of the doctors on her team, decided to seek outside help.
She went to an old friend, who was now teaching classes, more than he was practicing. She convinced him to come on board because he was reluctant to take up the case. As soon as he came in contact with the patient, he had compassion on her. He studied her brain activity carefully and asked her to draw a clock for him. After she drew that clock, he concluded that she did not need to be in the psych ward, because no one with psychiatric issues, would draw the clock the way she did. So that canceled out schizophrenia and all the other mental diseases.
He kept on studying her case until he found out that she had a rare disease called anti-NMDA receptor encephalitis. He explained to her parents that her antibodies were attacking her brain, he simply put it as her brain was on fire. But they had a cure for it. Everyone was so emotional when he revealed what was wrong with her; they were all relieved that she was going to make it.
It took about twelve months for her to recover, and she went back to work. She had to get used to everyone asking if she was okay. Her boss then asked her to share her story, which she titled: Brain on Fire, in an article. Then she went ahead to write a best-selling memoir on her story, with the same title, which later became the basis of the movie —Brain on Fire.
Lessons Learned
Keep Fighting, also believe in your inner instinct: Her parents kept on fighting for her, to find the right diagnosis. Most of the doctors wrote her off as bipolar, schizophrenic, partying too much and so on. If they didn’t challenge the doctors, she would have died eventually, from a disease that had a cure. She was the 217th person to be diagnosed with that disease in the world. Thanks to the doctor, who decided to seek outside help, and the outside doctor (Dr. Najjar), agreeing to take up her case.
He said to her parents that he would do everything within his power to make their daughter better because if she were his child, he would do the same. It helps when doctors, connect with people, based on their humanity, rather than their profession. It gives the patient, and their families hope.
In sickness and in health: Her parents and her boyfriend were with her throughout the time she was sick. They never left her side. There are a lot of people in hospitals today that have no one visiting or caring for them. Sometimes their so-called family members come over and barely show any care or support. But Susannah’s family showed her that they loved her unconditionally. They wanted her to get better by all means. Even when she was no longer responding to them, they still spoke to her and sat by her side. She eventually married her boyfriend. I mean, who wouldn’t? He proved he had substance.
If you notice something off about your co-worker, say something: Sometimes, people go to work and don’t care about the person sitting right next to them. Everybody wants to do their job and get out. But people are going through life, and just a simple “how are you doing today?” can make a whole lot of difference. Susannah’s co-worker noticed something was off about her and asked her occasionally if she was okay. But after Susannah recovered, she took an even deeper interest in her well-being, because she wanted to make sure that if she noticed anything, it was going to be taken care of, sooner than later.
This movie has brought more awareness about the disease; I didn’t even know it existed until my friend told me about her sister-in-law’s experience and asked I should watch the movie. Since the release of Susannah’s story, more people have been properly diagnosed and treated around the world. Dr. Najjar continues to practice medicine and has since opened one of the first clinics in the world, dedicated to treating complex autoimmune brain diseases. Susannah continues to raise awareness about the disease as an author and journalist according to the synopsis at the end of the movie.
Thank you, Susannah, for sharing your story, because you didn’t have to. Thank you, Dr. Souhel Najjar, for taking a special interest in Susannah, and treating her accordingly. Thank you to the makers of this incredible film, for using it to create more awareness about this rare disease. The movie is available on Netflix, be sure to watch it and find out why it is a movie with a message — looking for more reasons to watch inspirational films? Click this link to access our Movie with a Message segment. Remember to like, share and subscribe, never to miss an update on Let’s Talk Nation.
About The Author: Evi Idoghor is a Christian, writer and content creator on Letstalknationblog.com. She is a chemical engineering graduate from the University of Louisiana at Lafayette. Consumed by her love for writing and desire to effect change, she launched her online platform––Let’s Talk Nation––to tap into her creativity and start meaningful conversations that would make a difference around the world.
Most of her writing has been influenced by her time spent in America, where she lived for about 11 years. Also, she lived in Nigeria and South Korea and currently loves traveling the world while learning about other fascinating cultures. You can find her on all social media platforms with @eviidoghor.