Hanging by a Thread

About seizures…

In December 2017, at the end of a turbulent fall semester full of testing, doctors’ visits, and insurance fights, Sarah had her fifth Gamma knife surgery. This was a difficult time. Imagine trying to focus on her important dissertation and proposal, all while contending with all these tests, test results, doctors’ visits, college, and insurance uncertainties.

There was a holiday break, thankfully, then back to school trying to regroup and continue work on her dissertation proposal. The spring semester was going well, and she was making progress. Based on this progress, it appeared that the summer and fall of 2018 would be a busy time, proposing and applying for Internship.

She had a summer semester class on Internship application, and planned to propose and apply for an Internship during Fall Semester of 2018. After that, she must complete and defend her dissertation in the first half of 2019, and start the Internship in fall of the same year. All of this was planned out.

In June 2018, at the beginning of the summer semester, Sarah started having strange episodes of what appeared to be atypical seizures. The episodes start with cognitive difficulties, dizziness, and body shakes, followed by fogginess, then exhaustion. The seizures Sarah had in previous years were typical seizures. You drop on the ground in convulsion and wake up exhausted, not knowing what had happened.

These episodes were very different and new to us. For one thing, Sarah was relatively aware of what was happening. When she felt an episode coming on, she only had enough time to sit down. This was good in a way, as she was aware and able to log the symptoms and frequency of these episodes afterwards. At first, we called them dizzy spells, then later understood them to be atypical seizures. Then, those episodes started to increase in frequency, sometimes hourly. The symptoms were changing too, for example, certain light conditions, sounds and smells, could trigger an episode.

Sarah and her husband were paying a premium rent in the Bay area while she finished her PhD. Earlier, her husband had to return to Ohio to attend to his terminally ill parent, and I was attending to my wife as she recovered from a hip replacement surgery. Sarah was stuck suffering through this alone. She could no longer drive, or even get groceries. Thankfully, she had a great network of friends around. Some stopped by to bring groceries. Others spent the night when they were able.

When these episodes started, Sarah was not quite sure what was going on. But toward the end of the summer, as these episodes were reaching their peak, she was getting answers from test results and neurologists. The brain was cooked by the last Gamma radiation session, and the episodes were the result of the consequential chemical and biological changes in the brain. At this time, she came forward to let her husband and I know of the severity of her situation, and we made arrangements for each of us to make the trip to go see her and help her.