Brain on Fire is the extraordinary story of an ordinary woman.
Susannah Cahalan was an ordinary woman who was in the midst of living her life as a New York journalist when she was stricken by a rare brain disease. The condition launched what was an odyssey into madness on her part, versus an odyssey into the challenges of rare disease diagnosis on her parents’ and physicians’ part.
What begins as symptoms of paranoia, schizophrenia, and seizures, finally culminates in the diagnosis of a rare autoimmune condition due to a dedicated (Dr. House-type) physician, persistent caregivers, awareness of a rare disease, and a simple neurologic test. Without any of these aspects, she might have ended up in a psychiatric hospital and possibly dead, a fact of which she is fully aware.
I saw Ms. Cahalan speak at Rare Disease Day at the NIH this year. I wish I had read this book prior to the event so that I could have asked more questions in person. But it remained on my list all summer and I was happy to set aside the traditional beach reads to hear her story.
As a parent to a child with a rare disease, I found this book emotionally challenging to read at several points.
As she deteriorates, there are moments of lucidity. She is aware of the growing limitations of her brain but is powerless to break free. It is a heartbreaking description and one that I wonder whether our MPS children experience. Self-awareness is gained at a certain cognitive level and it is difficult to know exactly where that line lies and whether it moves based on external stimuli.
The brain. She writes, “The brain is radically resilient; it can create new neurons and make new connections through cortical remapping, a process called neurogenesis. Our minds have the incredible capacity to both alter the strength of connections among neurons, essentially rewiring them, and create entirely new pathways.” (p.197). I can’t help but wonder about the neurogenesis that is going on in Case’s brain. As the GAG recedes, his neurons begin functioning again. How does that process work? How are his pathways solidified?
The guilt. Ms. Cahalan devotes an entire chapter to a challenge I currently struggle with and have written about before – survivor’s guilt. She asks why she was able to get diagnosed and come out the other side of such a terrible ordeal? Why, when others never full recover or pass away from the very same illness? She notes, “Survivor’s guilt as a kind of posttraumatic stress disorder (PTSD) is common – a study indicates that 20 to 30 percent of survivors develop it – and it has been documented in those with cancer and AIDS, as well as war veterans. I can sincerely relate to this feeling….” (p. 231-32). I get it, I totally get it. Having survivor’s guilt motivates you to work to create more “survivors” – not to lessen the guilt per se, but to bring order to a world that can’t possibly have so few who survive such a devastating condition.
The doctor. Another jewel in the writing was a quote from her Dr. House physician, Dr. Najjar: “Just because it seems like schizophrenia doesn’t mean that it is. … We have to keep humble and keep our eyes open.” (p. 226)
Oh, if only all physicians were so humble and curious! So many children with MPS begin with autism and other diagnoses. The average rare disease patient is mis-diagnosed many times over before an accurate diagnosis is received.
She also notes that the physicians who do not seek the ultimate diagnosis unfortunately are the rule, not the exception. “I’m the one who is the exception. I’m the one who is lucky. I did not slip through a system that is designed to miss cases just like my own – cases that require time and patience and individualized attention.” (p. 226-27)
I think many rare disease patients could relate, either by being fortunately diagnosed or by being ones who did slip through the cracks. Like Susannah, Case was an exception, being diagnosed before more severe symptoms had taken hold by virtue of his grandmother and a television show (Mystery Diagnosis). Lucky doesn’t even begin to describe it.
The effect. She describes a patient who was ultimately diagnosed and treated because of her article in the New York Times being shoved in the face of an unknowing ER doctor. Her joy in that child’s eventual recovery is matched by my own gratefulness to the family who participated in the Mystery Diagnosis episode that led to Case’s diagnosis. I can’t thank them enough.
She ends with the question by a friend of whether she would take it all back if she could.
You have to read her story to fully understand her answer.
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