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“The Spirit Catches You and You Fall Down”: The Making of a Silver Lining in Epilepsy

Imagine an active neuron in the temporal lobe of the brain. This neuron receives a message through its dendrites and passes it to other neurons via its axons. This is the basic process of cell signaling. It shows the role of neurons and, more importantly, how neuronal disorders develop. Now imagine the neuron becomes overwhelmed by repetitive high priority messages. By the nature of cell signaling, it relays these messages to its many connected neurons. With continued activation and time, the system of receiving and sending messages becomes overwhelmed and falls into disarray. This loss of control produces the basic pathophysiology of the onset of a partial seizure, and a state of repetitive seizures defines chronic epilepsy.

Non-epileptic brains have many checkpoints in place to prevent this loss of control. Consequently, epilepsy is often predicated by pathological changes that facilitate progression of the disease, including sodium channelopathies and loss of hippocampal modulation (i.e. entorhinal cortex). In addition to these changes, the NIH reports that 60-70% of patients experience recurrent seizures due to an unidentifiable cause, which is known as cryptogenic epilepsy. Cryptogenic epilepsy often leads to treatment-resistant epilepsy, and it profoundly affects the lives of its patients.

The Spirit Catches You and You Fall Down” by Anne Fadiman provides an illuminating experience of one patient’s experience with treatment-resistant epilepsy. It documents the life of Lia Lee, a young Hmong refugee who moved to California with her family in the 1980s, and describes her medical and cultural struggles with chronic epilepsy from infancy. Fadiman’s book offers not only a first-hand account of the development of epilepsy, but also the opportunity to find empathy with the family’s struggle and to understand the perspectives of the doctors treating her.

Much of “The Spirit Catches You” details the social and cultural problems of being a Hmong refugee in California receiving health care. From a lack of Hmong translators to a misinterpretation of non-Western remedies, a circle of distrust developed between Lia’s family and the doctors who treated her at Merced hospital. The struggles of both sides caused inconsistencies in Lia’s care, and they often spiraled into a lack of care. Fadiman presents these issues upfront, and beckons the reader to ask, “What would I do in this situation?”

By attempting to solve one issue, a cohort of other problems arises. As developing physicians, we trace a “silver lining” to balance treatment and patient care on a daily basis. This lining defines the approach that each doctor uses to treat patients, and encompasses the benefits and risks of every decision. It is the product of our clinical knowledge and our personal experience. Lia’s story elucidates this concept by showing how Merced helped and harmed her. Her story allowed me to reflect on how my past experiences had already shaped my progression as a developing physician. By combining these two, we come closer to understanding and treating these diseases, avoiding cross cultural disease, and helping to treat patients.

As an undergraduate at the University of Virginia, I worked in epilepsy research, investigating novel etiologies of the disease. One of my roles was to create epileptic rats by over-stimulating the dentate gyrus, which made the rats epileptic within three months. During this development, the rats would become irate and stop grooming themselves. Additionally, the loss of control in preventing seizures would result in more seizures and greater effects on health and personality. This demonstrates the debilitating lifestyle challenges of epileptic patients.

Through my research, I observed the emotional and physical toll that epilepsy levies on patients. Part of the struggle of being an effective doctor is becoming aware of how these changes affect a patient. Part of the silver lining, in this case, is taking into consideration the changes in personality that occur with epilepsy. The Merced nurses described Lia as “jovial” and “very interactive” when not having a seizure, but short bursts of calm were the best medicine could provide in the tumultuous condition that Lia lived. Yet even these transient moments of happiness comprise incredible feats that medicine has been able to achieve. But just as much as physicians can learn to help, we also have the ability to do harm, especially in patients with chronic conditions.

After the “big” grand mal seizure that sent Lia from Merced Community Medical Center to Fresno, I began to see the other side of medicine’s silver lining: the potential of medicine to do more harm than good. As a result of the seizure, Lia lost higher brain function and lived in a persistently vegetative state for 26 years until the age of 30. Peggy, one of Lia’s doctors, said, “that’s the quandary of Western medicine, that you can’t let people die.” In this frank statement Peggy alludes to one of the most controversial aspects of medicine: How far is too far?

As a former EMT, I found myself one night in the care of a postictal patient that had been prescribed multiple medications for the seizures he had been experiencing for 16 years. The course of his epilepsy had left him disheveled and delusional. Although medicine had helped his seizures, nothing much could be done about their long-lasting effects. This is the gamble that we health care professionals play in balancing beneficence and side effects. For better or worse, the pressure to treat and the yearning to help have left medicine in a state of contention. Lia’s story reminded me of how easily doctors get lost in trying to achieve these goals, delving away from a patient-centered approach to a symptom-centered one. To solve this we must keep the idea of patient beneficence in mind.

A patient-centered approach requires more than a discussion of patient-physician relations. In Lia’s case, the Merced doctors struggled working with the Lees’ cultural interventions and their mistrust of Western medicine. The Lees distrusted Lia’s anti-epileptic medication, but trusted animal sacrifice to help Lia. Although I am hesitant towards such extreme traditional interventions, I believe accommodating a patient’s culture and beliefs yields positive influences on his or her overall welfare and care, granted it does not interfere with medical treatment. As the son of a doctor and an Indian immigrant, I entertained the power of culture in medicine growing up. I grew up in a household where surgeries and splints were important for broken bones and torn ACLs, but cumin was effective for the common cold. Adding a bit of cultural understanding proves the power of community to aid in the healing process and create a more patient-centered approach.

“The Spirit Catches You and You Fall Down” challenges the reader to appreciate Lia’s story in the context of the trials of the Hmong and the state of medicine in the 80s. By reading stories like this and using one’s own experiences, we learn about the successes and mistakes health care has made over the years. A developing physician can string together these stories and his or her own experiences to promote a patient-centered approach to medicine and to learn better treatment. Our current health care system is the culmination of this. Fadiman describes the benefit of this: “The world is full of things that may not seem to be connected but actually are; that no event occurs in isolation; that you can miss a lot by sticking to the point.” When we don’t have a cure — when our hand fails — we should not forget the things that support and keep our patients happy.

Aradhya Nigam Aradhya Nigam (1 Posts)

Contributing Writer Emeritus

Eastern Virginia Medical School