The Killing of a Sacred Disease
In the popular imagination epilepsy has often been treated as a very special, exceptional condition. In the ancient and medieval periods it was associated with divine or demonic possession, and for the longest time people thought that seizures were actually triggered by some external cause, by perceiving something peculiar. People (and doctors) were in the dark about its actual causes and effective treatments. It was only after the discovery of the electric activity of the brain that we got a clue about how epileptic seizures originated in the brain: less than a century ago. Finally, thanks to measurements of electrical activity in the brain the myths about epilepsy being a form of possession or insanity could be laid to rest. This, however, has triggered a new wave of fantasies in the popular imagination.
Epilepsy is again linked to lack of (self)control. In most cases in modern media, epileptic seizures will be portrayed as a completely uncontrolled, wild convulsion of the entire body, often with foaming at the mouth and incoherent speech. However, in many cases this is not how an epileptic episode manifests. The disturbance in the electric activity of the brain can have many varied effects, from short loss of consciousness, to uncontrolled movements in one limb, to simply going limp. Sometimes entirely different causes might provoke a non-epileptic seizure.
Nevertheless, we now knew where to start looking for a treatment: inside the brain. In order to prevent the chaotic electrical activity to spread from one brain hemisphere to the next, one treatment included separating the two brain halves. Other attempts focused on removing the parts of the brain causing the disturbance. Unfortunately, the brain is incredibly complex and tampering with it might nor yield the expected results. By removing just a small slice of the temporal lobe, the entire mechanism for storing memories was disrupted for Henry Molaison: one of the most famous patients in neuroscience, known for decades only as “H.M.”. His clinical history inspired the movie “Memento”. Tragically, it is thought the collective histories of such errors and misjudgements that we slowly were groping our way out of the dark and towards a better attempt at a treatment or cure for epilepsy..
A new generation of brain implants seems to show a light at the end of the tunnel. By closely monitoring electrical activity in the brain, they can predict and prevent seizures from occurring, either by warning the patient to take precautions or by preventing them automatically. Given the long history of epilepsy as loss of control in the popular imagination, immediately the question of autonomy and identity is brought up. How does having a monitoring device in your brain affect you? How can you trust it? Will it change who you are? It is important to remember that for many epileptic patients (and other affect by brain diseases) these questions also come up with respect to their own brains.
Can one trust one’s own brain, if it produces random and unexpected seizures?
How does that affect your autonomy, agency, identity?
Invasive though they may be, the new generation of brain-computer interfaces are all geared towards restoring the autonomy of the patient, by preventing the disease to dominate their lives and curbing their freedom.
Can you drive? Can you swim? Can you be who you want to be?
Henry Molaison, desperate for help, was more than willing to let a surgeon carve away a piece of his brain to get peace of mind. Thankfully we do not have to go so far anymore to help epileptic patients recover a measure of normality. Still, it is hard to have to rely on an “external” device to recover some of your autonomy. It is hard to shake the feeling that such a device, helpful though it may be, als exercises some control over you. Being tied to a piece of equipment for the rest of your life, can be daunting. However, researchers and doctors keep building on and overcoming the limitations of current technologies and treatments. It may very well be that in the near future a new type of approach becomes possible that may be able to heal epilepsy, by restoring control to the brain. Then patients would no longer have to trade divine possession for possession by a device.