Last week I finally finished a book I was reading for leisure—The Spirit Catches You, and You Fall Down by Anne Fadiman. 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, 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.
The experience of being a patient usually has profound impact on medical professionals. As medical students we learn why 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. Epilepsy carries stigma that should be challenged. Most people have a narrow view of the disease that likely includes somebody shaking violently, losing control of their bladder, mental retardation or psychological problems.
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.
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). Obviously, despite being a neurologist, he had never personally gotten to know anybody with epilepsy.
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 the visual or sound effects started, I felt 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. 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 cannot 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.
Our lecture materials make the diagnosis sound easy… epilepsy is diagnosed by 2 or more seizures and an abnormal EEG. Yet, seizures aren’t obvious, and EEG’s are scheduled into short time slots (seizures inconveniently cannot be scheduled). If I feel this way about epilepsy, then every disease must have a depth of complexities. These lessons from my disease remind me that medicine is so much more than the textbook describes.
Would you say that your experience with epilepsy as a patient has helped you to study it better, and if so how?
I was totally surprised to hear about your epilepsy. That was news to me. I think that our personal experiences make us better professionals. I think that growing up with ADD and the experiences involved with that, have made me a better teacher. And I know your experiences with epilepsy will help you become a better doctor.
The Spirit Catches you is an amazing book. I had to read it for grad school where we discussed the cultural issues surrounding the interactions between the family and the medical community. It is clear that everyone was trying to do what was best in their minds but they couldn’t communicate well enough. It is really eye opening to think about it but that probably happens everyday at every hospital.
Kudos to you for speaking out and for challenging the notions that people have. I think that most medical conditions are stigmatized unfairly.
Clearly you came to terms with your medical history when you were able to write a children’s book about it.
Thank you for doing that and I’m sure you will know what to say (in the future) if/when you deal with a family with epilepsy. Thanks for sharing.