Last week I finally finished a book I was reading for leisure—The Spirit Catches You, and You Fall Down by Anne Fadiman. Two people independently had recommended this book to me. And in fact, I thought it was a wonderful combination of history and cross-cultural perspectives as a Hmong family tries to understand the Western medical approach to their daughter’s epilepsy. I found this book at a perfect time since I am fascinated about cultural sensitivity and ethics in medicine, and I am currently studying neurology. However, the story struck me personally as well because I, like the main character Lia, had epilepsy.
This week I have lectures and reading about epilepsy, and I cannot deny that it is unique to be studying something as a medical student, which I once knew mainly as a patient. I’m not sure if I should share this with my classmates or not. Obviously, it isn’t something visible to most people, and the culture of medical school does not encourage sharing about personal hospital stays, surgeries or diseases. Little do my classmates and I acknowledge that we who become doctors, must at some point be patients also. After reading many essays written by doctors, I conclude that the experience of being a patient usually has profound impact on medical professionals. Instead, as medical students we learn that studies show it is important not to mention our own medical experiences with patients, and it seems that this extends to become a vow of silence about any health challenges we face ourselves.
As I have had the chance, I have been trying to break this silence, and let people know that I had epilepsy for two big reasons. Foremost is epilepsy carries stigma which needs to be challenged. Most people have a narrow view of the disease that likely includes somebody shaking violently, mental retardation or psychological problems. And second, I want people to know because I spent so many years of my life trying to erase epilepsy from my past. As soon as I outgrew my seizures, I removed my medical alert bracelet, did not mention it to my friends, and became furious when my parents brought it up. Now, I feel guilty about my shame, and I want to be able to embrace it as part of who I am.
Over the past few years I’ve learned that NO human has perfect health all the time. I should be glad that one of my health defects came as a relatively mild seizure disorder. I am in good company with others who allegedly had epilepsy (such as Isaac Newton, Vincent Van Gogh, Agatha Christie, Napoleon, Charles Dickens, Michelangelo, Leonardo da Vinci to name a few). Despite this, I still remember the day that my neurologist told my mom that “people with epilepsy do not become doctors” (yeah right, doc). Obviously, despite being a neurologist, he had never personally gotten to know anybody with epilepsy.
If my neurology readings are accurate, then many people with epilepsy do suffer from comorbidities like developmental delays. However, please do not forget that the majority of people are normal and happen to have seizures. As far as I know, my partial-complex temporal-lobe seizures, which started at age 9 and disappeared by age 16, are not rare. A Newsweek article earlier this year said epilepsy is more common than breast cancer, and that 50% of children outgrow it in a few years.
Now that I am learning about the cortex, my memories of seizures start to make physiological sense to me. My seizures were accompanied by an aura (a strange smell) a couple times. Yet mostly they started with the sound diminishing around me (like a volume dial was turned down) and other auditory stimuli that sounded like voices. Sometimes I also saw colorful “blobs.” As soon as this started, I was usually frozen until I lost consciousness. At that point, I don’t remember anything except waking up (1-2 minutes later) and being scared and confused about who and where I was, and who the people were around me. Yesterday I learned that this phenomenon is called “jamais vu” and occurs because the temporal lobe is close to the emotion and memory processing centers of the brain.
I can never forget what it was like to have my brain take over my mind. Additionally, I cannot forget the challenge of EEG’s and getting an accurate diagnosis, or the powerful side effects from the medications that included projectile vomiting, severe sedation and cataplexy (loss of muscle tone while laughing). Our lecture materials make the diagnosis sound easy… epilepsy is diagnosed by 2 or more seizures and an abnormal EEG. Yet, seizures aren’t always obvious, and EEG’s are scheduled into short time slots (seizures inconveniently cannot be scheduled). Thus, many patients may be unsure if they are having seizures and they may not have abnormal EEGs.
If I feel this way about epilepsy, then every disease I am learning about must have a depth of complexities and contradictions. The strange things that the brain can do and its delicate balance of neurotransmitters are fascinating, but simultaneously surprising and confusing. Today, for example, I saw videos of people who seemed normal, but had specific deficits such as the inability to recognize faces or read. Most surprising, however, is watching the brain rationalize behaviors—to make sense of what’s happening or how one is behaving, even when it doesn’t make sense.
So whether it’s a seizure or idea, the brain is self-programmed to control us, rather than vice versa. Epilepsy forced me to admit powerlessness over my brain long ago; this lack of control or individuality will ultimately allows me to feel more spiritually connected. These lessons from my disease- epilepsy- remind me that medicine is less simple than what I must learn, and gives me reverence for all my brain lets me do.
Posted by Liz 
