But My Brain Had Other Ideas

This story is filled with both triumph and tragedy. Which part of the story affected you the most? Why?

Is there a person or character in this story who resonates more strongly with you than others? If so, what part of their story or character stands out?

The author tells part of the story chronologically, but other parts are organized around particular topics. Why do you think she organized the story this way? How did the book’s structure affect your understanding (or enjoyment) of the story? How does the opening (the prologue and first chapter) make you feel? For example, is it confusing? disorienting? compelling? dramatic?
exciting? intriguing? something else?

Modern medical technology can diagnose some problems faster but may be more expensive than older methods. MRIs, for example, can reveal brain bleeds, including those caused by cavernous angiomas, but MRIs are more expensive than CT scans. Typical emergency room procedures for suspected brain injury include the less expensive CT scan, but CT scans can only identify active bleeds. Do you think ER protocol should routinely include an MRI when brain injury is suspected? Why or why not? What are your thoughts or ideas about how to decide if a more expensive treatment for an illness or injury is warranted?

The author is a university professor with an advanced degree, with ready access to the internet. How do you think this affected her medical care and recovery?

The author mentions her children, including the difficulty of preparing them for the possibility that she might die or be seriously impaired as a result of brain surgery, but she doesn’t include much about their day to day lives or their interactions with her. Why do you think the author keeps her children out of the reader’s view most of the time?

The author describes a “short EEG” (20-minute brain wave test) in the emergency room. According to the emergency room neurologist, the results indicated abnormal brain activity; he was certain the hospital’s on-call neurologist would prescribe antiseizure medication. The EEG results were later discounted by the on-call neurologist, who recommended psychotherapy. Later still, the author’s regular neurologist told her that a 20-minute EEG could easily miss abnormalities, and he prescribed a much longer EEG. When the longer EEG indicated the possibility of abnormal brain activity but didn’t confirm it, he prescribed antiseizure medication. Why do you think these doctors (all trained neurologists) came to such different conclusions?

News stories about brain injury frequently focus on professional sports such as football or on celebrities (Jackie Chan, Gary Busey). How did it change your appreciation or engagement with the story to read about one individual’s experience with an injury that resulted from malformed blood vessels, not a car accident or sports injury?

The author frequently expresses the fear that she is malingering, that she isn’t as ill or as disabled as she thinks she is. This fear is reinforced by others, sometimes intentionally, sometimes accidentally. Why do you think she has this fear? How does this fear affect the author (for better or for worse)? How do other characters reinforce or alleviate the fear? What are some examples from your own experience where fear, anxiety, or uncertainty caused you to act in a particular way?

Neurological research has led to greater understanding of the brain’s “plasticity”—the ability of the brain to continue to learn, including building new neural pathways and using uninjured parts of the brain to compensate for injured areas. How did neuroplasticity affect the author? How does neuroplasticity affect you or someone you know?

The author resists “accepting” her injury. Why do you think she resists? What does “acceptance” mean to the author? What does “acceptance” mean to you?

What “invisible disabilities” are you aware of? How do they affect you in your daily life?