In 1978, a series of medical tests was initiated to uncover the source of strange symptoms, including déjà vu, phantom smells of perfume, and odd sensations triggered by reading aloud in class. The first test aimed to determine whether blinking or strobe lights could induce a seizure. This was a common diagnostic method for epilepsy during the era. Given the prominence of disco music and strobe lights in the culture, there was a concern that such triggers might complicate daily life. However, strobe lights had no effect, allowing life to continue as usual in that regard.

With strobe light sensitivity ruled out, the next step involved an electroencephalogram (EEG). This test measured the brain’s electrical activity to align reported symptoms with neurological patterns. During the procedure, a technician applied paste to coarse hair and affixed long, colorful wires to the scalp. Although the process was painless, it carried a mix of fascination and anticipation about what the results might reveal. The EEG showed abnormalities in brain waves, confirming suspicions of epilepsy and offering a scientific explanation for years of unexplained sensations.

Further investigation required a more invasive test involving a probe inserted through the nostril to measure brain activity. While the procedure lasted only about ten minutes and did not require anesthesia, it presented challenges. The left nostril allowed the probe to be guided successfully after relaxation. The right nostril, however, triggered persistent sneezing with each attempt to insert the probe. A doctor was called to assist, but repeated attempts led to significant discomfort as the probe was forced upward, causing tears to flow from the pain. Despite these difficulties, the results of this test, combined with the EEG findings, confirmed the presence of epilepsy, finally putting a name to the strange sensations and episodes described.

The diagnosis marked the beginning of a long medical journey. A series of neurologists over two years prescribed different medications and reassured that epilepsy was common in young people and often resolved with age. However, seizures continued, necessitating frequent adjustments to medications based on blood test results that monitored drug levels. This approach aimed to optimize treatment and minimize side effects.

Health insurance obtained through a part-time job at a local newspaper facilitated access to more advanced diagnostic tools, including Magnetic Resonance Imaging (MRI). During the MRI, complete stillness was required while inside a machine that resembled a tomb. The technician provided earplugs and maintained communication through a microphone as the machine emitted rhythmic banging noises, reminiscent of someone persistently knocking on a door. Over time, as seizures evolved, MRIs became a regular part of treatment, tracking changes in the brain and correlating them with medication adjustments.

During a hospital stay in Chicago, intracranial monitoring was performed. Thin probes were inserted directly into the brain under local anesthesia to pinpoint the origin of seizures. This critical procedure was especially important in evaluating surgical options, as it helped determine the precise area of the brain responsible for seizure activity. A specialized helmet was used during the surgery to stabilize the head and direct radiation, if needed, to a specific region.

Neuropsychological testing added another layer of understanding by assessing cognitive functions such as memory, concentration, and problem-solving. Simple exercises, like identifying and recalling words, quickly escalated into complex tasks designed to measure higher-order thinking. The tests revealed declines in cognitive functions, a heartbreaking revelation for someone who had excelled academically as a child. Neuropsychologists likened epilepsy to a sore on the brain that never heals, while others compared it to a storm raging in the mind—both analogies reflecting the ongoing challenges faced by those living with the condition.

One of the most unique tests conducted was the Wada test, designed to identify which side of the brain controlled language and memory. Mild sedation was used to put one hemisphere of the brain to sleep at a time. While one side rested, the medical team presented common words on cards to assess speech and memory function. After awakening that hemisphere, the process was repeated with the other side. This test provided crucial information about brain dominance, helping the medical team determine the safest and most effective surgical options.

Each test contributed valuable insights into the nature of epilepsy and the challenges it presents. Despite the physical and emotional toll of the procedures, they laid the groundwork for understanding the condition and exploring potential treatments to improve quality of life.