Tag Archives: Neurology

Love to Perseverate: Rare Diseases

This week at the spin cycle, we share something we love that everyone else seems to hate or something we hate that everyone seems to love. When it comes to interests and hobbies, my famiy is quite diverse. I, like my mother, am into crafting and reading. Like my father and possibly my husband, I like learning all kinds of new things from Wikipedia or the university library. I, however, am the only one who is interested in psychology and particularly psychiatry. It could be because I’m a nut case myself, though I also love learning about other fields of medicine.

It is not a terribly uncommon interest, but it just sounds weird saying you’re interested in rare diseases. Like, I can’t bring myself to like pages on Facebook on diseases that aren’t at least remotely related to my own conditions, just in case my family believes I’ve decided I have Zellweger Syndrome. For your information: this is a debilitating genetic syndrome from which affected children die early on.

Many people do read inspirational books by people who’ve overcome tragedies, including rare diseases. Brain on Fire by Susannah Cahalan, which I just finished, was a bestseller in the United States and possibly in the Netherlands too. I read the Dutch translation, because my BookShare account has still not been activated (still waiting on my doctor to write the proof of disability thing) and I didn’t want to buy the eBook when the Dutch audio book is available at the library for the blind for free. Anyway, while many people read the book, I’m sure most people didn’t remember every tiny detail on Cahalan’s condition, except for those who think they or their relative might have the same disease. And just so you know, Cahalan does link her condition, anti-NMDA receptor encephalitis, to some diagnoses of regressive autism, but I have no reason to believe I have this condition.

In Brain on Fire, Susannah Cahalan, a reporter at the New York Post, describes the process of her sliding down into madness. For a month during the spring of 2009, for which she herself has no memory, she has seizures and psychotic symptoms and finally becomes catatonic, hardly able to move or talk. Because her parents insist that she be hospitalized on a neurological unit, she is admitted to NYU Medical Center. There, neurologists and psychiatrists are completely baffled as to what is wrong with her. One diagnoses post-ictal psychosis (psychosis after an epileptic seizure), the next diagnoses schizoaffective disorder, and so on. Finally, Dr. Souhel Najjar joins Cahalan’s team after her previous neurologist gives up on her. Najjar thoroughly examines Cahalan and finds, when he asks her to draw a clock, that she places all the digits on the right side of the clock. This causes Najjar to realize that in fact Cahalan’s right brain hemisphere is seriously damaged. It isn’t saidhow he realizes that, in fact, her brain is on fire, being attacked by her own body. It also isn’t too clear what ultimately leads to the diagnosis, because Cahalan gets a brain biopsy but she later writes that only a small portion of people with anti-NMDA receptor encephalitis get brain biopsies.

The NMDA receptor, Wikipedia tells me, is a specific type of receptor for glutamate (a very important neurotransmitter). It is important in learning and memory. When antibodies attack this receptor, the disease Cahalan suffered occurs. Some people experience flu-like symptoms or headaches weeks or months prior to onset of the characteristic symptoms. Usually, the disease starts with behavior changes, which may vary depending on the patient’s age. Children may show violence and increased agitation, while adults may experience psychotic symptoms. As the disease progresses, symptoms may include paralysis of one side of the body, jerky movements (ataxia), autonomic dysfunction (problems with heart rate or blood pressure), or catatonia. These symptoms require urgent medical attention, because the patient may slip into a coma and die.

The book is much more intriguing than my boring summary of Cahalan’s disease. I just love perseverating on rare diseases, like I said, and this is the perfect opportunity.


Born Borderline?

Yesterday there was a discussion in a Facebook group about whether borderline personality disorder could be a brain condition you’re born with. The original poster started by saying she feels so broken and has her whole life that she wonders whether BPD is not just a mental disorder, but a brain dysfunction.

Now I want to say that a more severe disturbance has nothing to do with whether you were born with the condition. It’s not like, if you were born with it, that it’s necessarily any worse thn if you acquired BPD as a result of childhood trauma. Some commenters mentioned feeling their wacky childhood may’ve been due to their BPD rather than vice versa. Does it truly matter? I don’t think so. Like, people are usually born autistic, but this doesn’t mean all that happens to the autistic growing up is due to autism.

From what I understand, BPD is caused by a combination of temperament, which is largely genetic, and childhood circumstances. There was this debate in a Dutch women’s mag a few months ago about two parents of BPD adults saying they didn’t like the assumption that BPD is trauma-based because they didn’t abuse their children. Then someone with BPD responded that even the most ordinary parents make mistakes, and this can set off BPD in vulnerable people.

Let’s move away from black-or-white thinking in the nature/nurture debate. Let’s also move away from blaming ourselves when something is brain-based, or feeling more broken for it, and from blaming our parets when something cannot yet be shown to be brain-based. Therapy can change brain function. So can other environmental circumstances, like trauma. When we have a brain dysfunction, we may perceive experiences differently. The two basically interact.

I remember when the Dutch organization that oversees health insurance proposed to drop mental health coverage for people who’d gotten mentally ill as a result of life circumstances. Have we truly gone backwards that much, believing that the brain and mind are two entirely separate entities? Science shows that, with mild depression for example, it doesn’t matter whether it’s due to recent divorce or it comes out of the blue, a wait-and-see approach is always best. With severe depression, not so. And as for BPD, it’s usually severe enough to warrant treatment whether it’s brain-based or not.

People Aren’t Broken

After being told she’d be officially diagnosed as autistic, Autisticook wrote a post titled I’m Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn’t want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. “I’m not broken, I was traumatized,” one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn’t broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren’t broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors’ lives that is remotely “broken”, and I cringe.

I don’t care who or what made you the way you are. People aren’t intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don’t share this same attribute, look broken. Like, are people broken if their behavior can’t be directly linked to trauma or neurology? I’d say they arent’. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can’t use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn’t make you broken regarldless of your diagnosis or lack thereof.