I just returned home from a quick trip to Colorado and I had loads of time to kill while there as I was on bed rest for a day and a half. I started reading Next Stop by Glen Finland on the way out and finished it on the plane into Denver. My wife picked up Brain on Fire by Susannah Cahalan for me to read while I was on bed rest. I finished it before we left the hotel to come home. Days later back at home and inundated with playing catch up (and catch the little people) I am still thinking about both stories.
Strong parent advocacy for a child
Mental illness and the stigma associated with its diagnosis
Disease with shockingly many unknowns
Strong parental relationships (despite divorce, hardship, etc.)
Resilience and independence (the child’s)
Incremental growth or recovery in very small, sometimes painful baby steps
At the center of Brain on Fire is Susannah Cahalan, a successful, but young reporter for the New York Post whose normal daily functioning is quickly overtaken by some unknown ailment which causes her to deteriorate into a state of psychosis. Next Stop is one mother’s story of her son David who is born with Autism, but of course, it takes years of doctors’ visits, special schools and repeated testing in order to arrive at this diagnosis. In both stories the parental support is vital to the eventual diagnoses and treatments.
ISOLATION. There are many moments in Brain on FIre where the reader can feel the total isolation of Susannah and, at times, her father as he follows her every step of the way into the darkness of her disease – the outbursts, the paranoia, the escape attempts, the awkward uncontrollable limb movements and eventually the catatonic state into which she slides before meeting Dr. Najjar. It is so very clear that as the physical ailments slowly get ticked off the list of probable cause and the shift moves toward complete psychological diagnosis, doctors and nurses slowly turn away from her and her parents. “I can’t help you, I’m off the case,” they say. Glen Finland writes in Next Stop of feeling isolated in the grocery store even when she recognizes a father and his autistic son in the aisles. She wants desperately to pat him on the shoulder and say, “You’re doing a great job,” but she realizes that once you’ve met one autistic child, you’ve met one autistic child. Every single one is different. Even in physical therapy with her son David at very young age she looks around the room and sees so many other overwhelmed and tired faces (of parents) that she is reluctant to share her story or her feelings with the other parents. How isolating is that? You’re all going through similar things and yet you can’t share the burden. It’s already too much.
RESCUE. Susannah’s case is eventually turned over to Dr. Souhel Najjar who through a series of simple tests including one in which he asks her to draw a clock, he discovers that she has a disease only recently named in 2007 – Anti NMDA receptor encephalitis. Its progression of symptoms include (taken from Wikipedia):
- A prodromal phase of nonspecific viral-like symptoms (fever, headache etc).
- Psychiatric disturbances with schizophrenic-like manifestations (hallucinations, visions, suicidal ideation). This is usually the phase that patients are admitted to hospital.
- Memory impairment – in particular anterograde amnesia.
- Dyskinesias (especially orofacial) and seizures (often tonic clonic but not associated with epileptiform activity as assessed by electroencephalography).
- Loss of responsiveness, low Glasgow Coma Scale (GCS).
- Hypoventilation/central respiratory depression.
- Autonomic instability (e.g. variations in blood pressure and salivation rates). You can see how one might be considered a psychiatric patient headed for a for-life facility. And the shit kicker for poor Susannah is that even when she’s on the mend, she has to go back through each stage in order to reach full recovery (which no one was sure she’d actually reach).
David’s consistent support and rescue team includes his parents (mostly his mom), his brothers and, in a few cases, some of his brothers’ coaches. Public school, private school, back to public school, vocational school, and finally a program in Florida that is meant to be training for life on his own. All the way through, his mother is there, watching, taking notes, pushing and making sure David gets the care he needs. Eventually she sets him free on the metro – to explore, to learn, to become fully independent.
PROCESS and CLARITY. Susannah, a trained and skillful reporter, leans on her strengths in order to process the life changing experience, particularly since she cannot recall at least one month of her life. She looks for clarity through interviews with doctors, family members, nurses, co-workers, and neighbors; video of her time in the epilepsy ward at NYU; journals her father and mother kept while she was in the hospital; personal research on her disease. She slowly pieces together and writes her story. David runs. He runs so fast and so hard and so long that his high school track coach picks him up for the cross country team. He runs for his independence, for his sense of self, for the simple pleasure it gives him. He runs the Marine Corps Marathon – perhaps the most emotional point in the story for me (and there were MANY).
Certainly these are very different stories about very different people, but they’re so fresh in my mind, I just can’t help but see the similarities.
No parent will get through Next Stop without some serious emotional connections. Heartbreakingly beautiful. I dare you to get through Brain on Fire without being horrified at how simple it would be to disappear into a psychiatric ward in an unforgiving and inflexible health system where psychiatric disease still has so much stigma still attached to it. Also, it totally makes me rethink Linda Blair and Emily Rose. And all the other crap shows I’ve watched on demonic possession.