A stroke survivor’s story
Most people know Dr. Eric Zillmer as professor of neuropsychology at Drexel University, a licensed clinical psychologist, president of the Philadelphia Classical Guitar Society, former athletic director at Drexel University, and past President of the National Academy of Neuropsychology. As he explains in this personal essay, it is time people know him as something else, as well. Dr. Zillmer shared this essay with Managing Editor Matt Villano as the two were discussing a forthcoming feature on music and the brain. The publication of this essay marks the first time Dr. Zillmer is sharing the story publicly.
My name is Eric Zillmer, and I am a stroke survivor.
At the age of 19, I experienced a hemorrhagic stroke. It left me with some residual disabilities. But, because of the stigma of a stroke “victim,” I have kept this information to myself.
Until now and this is my story.
I grew up in Garmisch-Partenkirchen, Germany, as an “Army brat,” a term reserved for those who grew up in U.S. military families. We “brats” wear the name as a badge of honor because the moves, stressors, and various cultural experiences have made us more resilient. I was born in Tokyo, Japan, but my family later moved to Europe, where I was enrolled in German-speaking schools, first “Volksschule” (elementary school) and later Gymnasium (grade 5 through 13). During my senior year of Gymnasium and at the age of 19, I became dizzy during a high-school basketball championship game. After the contest, I started to feel sick, became disoriented and aphasic, but rather than going to the emergency room I walked home. I did not trust myself to drive, I knew something was wrong, but I thought I could sleep it off.
On the way home, I collapsed and had a series of grand mal seizures. I was unconscious, so I don’t remember being taken to the hospital, where I was in a coma for several days. Unbeknownst to everyone, I had experienced a major cardiovascular event. A relatively large structure in the brain, an arteriovenous malformation, ruptured. It was probably starting to bleed during the basketball game, where I first experienced symptoms, perhaps due to the cardiovascular stress associated with extreme physical activity.
I stayed in the hospital for a week, but this was one year before CT scans were widely available in Germany, and so I was not diagnosed correctly. I was subjected to unnecessary medical tests, including a liver biopsy, and ultimately it was thought that the diagnosis may have been related to metabolic irregularities. “Eat less ice cream,” I was told upon discharge. Subsequent EEG studies at the Max-Planck Institute in Munich, Germany, and additional medical studies in the United States later that year did not shed any additional light on my medical event. Because of my young age nobody suspected that I had suffered a stroke.
Since then, I have remained mildly aphasic, and I experience mild verbal problems. I have difficulty with spelling, the correct pronunciations of words, and to this day vowels completely confuse me. I am terrible at crossword puzzles and acronyms. Learning a foreign language seems beyond reach. I often invert words much to the delight of those around me. I certainly would have benefitted from a neuropsychological workup as well as occupational and speech therapy at the time of my stroke, but this occurred in the 1970s, before neuropsychology became a clinical specialty.
I did not know it at the time, but I was a teenage stroke survivor.
Instinctively, I was drawn to anything that required non-verbal problem solving. I was comfortable with music, sports, photography, and art, which came natural to me and did not require as much verbal-comprehension or verbal expression. When I had to engage in something complicated in the verbal modality, it took me a long time. I learned to write like an architect builds a house. I formed ideas of what the structure would look like and then I would try to find words to populate that structure. I would edit my drafts dozens of times. It was tedious but it worked. I always had someone proofread my verbal material and was consistently shocked by how much better it sounded after someone else’s edits. I read books very slowly. I absorb information best via learning by doing. I became an excellent cook, not by reading cookbooks but by watching YouTube. When I was listening to other people speak, I try to figure out the context, how people were saying it rather than what they were saying. If I would not understand, I made a note and would look it up later.
My father, a U.S. Military Academy West Point alum, also had earned a master’s degree in German language from the University of Heidelberg. He was a gifted expert in languages. When I attended college in the United States, I lived at home, and Dad would help me write and rewrite my reports. I was ambitious and I had persistence. I was functional in speech in everyday life, but I was not competitive in college. I would try my best in an English writing class, and even though I worked harder than any of my classmates, I could not do any better than a C. A passing grade but not good enough for graduate school, where my aspirations lie. Organic chemistry, forget it. The terminology was very confusing to me. Honestly, those classes felt like a nightmare. I received Fs and flunked out of college.
My mother insisted that I make an appointment with the dean of students to see if I was allowed back in, on probation. I did and I switched my major from biology to psychology and everything fell into place. Even though psychology is highly verbal, it is also highly conceptual and creative, areas I was good at.
I later became interested in clinical psychology and then in clinical neuropsychology, mostly related to my fascination with human behavior, mental illness, and the psychobiology of the brain. For that, however, I needed to go to grad school. But my verbal GRE was terrible – in the second percentile; 98 percent of other applicants scored higher than me. I blamed it on being bilingual, as my mother is Austrian. But I knew all languages were a challenge for me.
I personally knew that I was verbally disabled, but I would not tell anyone. As I learned later, this is a common misperception about individuals with stroke, their disability is most noticeable to themselves but not to others.
Personally, I just sucked it up, like I would do in the athletic arena when encountering adversity. I was very resilient, and the disability made me even more so. I was lucky to get into a graduate school where someone on the admissions committee saw my potential in other aspects of cognition than GRE scores, in areas where I showed high, even superior, intelligence. For example, as a young adult, I was a first responder in the Austrian alps as a member of the National Ski Patrol, leading medical evacuations at high altitudes and extreme conditions. I also was the captain of my tennis team at the University of Rutgers-Camden, and I was creative. Leadership and organizational skills came easy to me. And, what became an advantage for me, I was not dependent on linear problem solving. I figured out problems differently than others. Often better.
Music and especially rhythmic music, the timing, managing and synchronization of events, mostly by the brain’s right hemisphere, were easy for me, and I compensated for my verbal disabilities by relying on my emotional IQ and a preponderance for non-verbal problem solving. I played guitar and drums every day, and I loved sports, the angles of the ball, the creativity. I excelled at photography, I can frame a picture, a slice of the world, and my pics have been used in magazines and on an album cover. I love poetry. I am good at organizing things, even large complex systems, big data, that others are intimidated by. And I am competitive, ambitious yet collaborative, an effective team player but also a leader.
Even though I had a disability I worked around it. I managed and even excelled.
Decades later, I wrote the second edition of my textbook “Principles of Neuropsychology.” To avoid copyright issues, I was planning on using pictures of my own brain on the cover. I had friends in imaging among one of the local hospitals in Philadelphia, and they informed me that I could get a “free” MRI study in the early morning hours as part of a research study. Before I settled in for the exam, they gave me the standard warning about a brain imaging study, that is, “one never knows what one might find.” Sure thing, there was a “hole” in my brain 1.5 cm diameter in size located in the left posterior frontal lobe.
I could not believe it! I immediately made an appointment with the chief of neurosurgery.
Naturally, I was nervous. I brought my MRI images to the neurosurgeon, and it was comforting to know that he knew of my neuropsychology textbook and that one of my coauthors extended neuropsychological services to his son. The doctor was the nicest guy and took a lot of time to study my brain images.
Then he turned to me and asked me if I ever had been unconscious. I told him no; it seemed the furthest thing from my mind that what occurred to me as a 19-year-old was related to why I was sitting there as an adult. He asked me whether I have or had speech or language impairments. Then, things started to come into focus.
The doctor told me that he was 100 percent certain that this left-hemisphere lesion in my brain was the result of an old stroke, a ruptured Arteriovenous Malformation (AVM). Of course, I knew exactly what that was. I had an entire section written on it in my neuropsychology textbook:
“Arteriovenous malformations (AVMs) represent direct and essentially useless communications between arteries and veins without an intervening capillary network. AVMs are typically congenital collections of abnormal vessels that result in abnormal blood flow. Because they are inherently weak, AVMs may lead to stroke or to inadequate distribution of blood in the regions surrounding the vessels. Rupture of AVMs may produce intracerebral and subarachnoid bleeding.” (Zillmer et al., 2008)
AVMs occur in less than 1 percent of the population and are more common in males than in females. They are congenital, meaning that they are present from birth on. I also knew that most of the damage of a ruptured AVM came from the hemorrhagic stroke associated with it, that is the bleeding, literally the escape of blood from the vessels. When blood spills out of the artery and into brain plasma, many toxins in the blood can interfere with normal brain metabolism. In an intact vascular system, the blood–brain barrier protects the surrounding tissue from any toxic properties contained in blood, but exposed blood outside of the artery irritates brain tissue, hence the seizures. And the additional volume of the blood can create life-threatening increases in intracranial pressure, coma and even death.
After all these years of compensating I had the answer why. I was a left hemisphere stroke survivor. Ironically, I am now a neuropsychologist and I have published and presented many papers on the cognitive functioning of stroke survivors. As a neuropsychologist and as an athlete, perhaps it became second nature for me to adapt, because I knew how. Because of my clinical knowledge and my personality, I learned how to compensate and how to move forward. In many ways I saw the world musically. I use anything nonverbal like music, sports, politics, visuospatial processing, or creativity to compensate for my deficits. The invention of the word processor, as well as the computer spelling and grammar check, was an absolute blessing to me.
“Should I be worried,” I asked the neurosurgeon. He said, “no, you are obviously doing fine,” but noted that I should get an imaging procedure known as an angiogram that examines the integrity of the cerebral arterial network of vessels, just to make sure I didn’t have any more of these “time-bombs” in my brain. I did get an angiogram. Thankfully, it came out negative.
I donate money to the American Heart Association, a leader in stroke research, every year. But I can’t wrap my arms around the fact that I am a stroke survivor and almost died as the result of a stroke. I am worried about the stigma associated with a stroke survivor and have told literarily no one. I am 6’5” tall, successful, strong, and healthy. I fear others would look at me as impaired.
The literature on strokes confirms exactly that. That others treat stroke survivors either as victims (“Are you feeling better now?”) or as if nothing happened (“Gee, you don’t look like you had a stroke”). Also, there is a bias that strokes only happen to the elderly, even though 25 percent of all strokes occur under the age of 60. This stigma suggests that many younger survivors suffer a delayed diagnosis, like I did. As a result, appropriate stroke services and interventions are not implemented to deal with the challenges confronted by having a stroke at a young age.
As a clinical neuropsychologist I know that I have used compensatory tactics that we as a profession do research on and write about. It has absolutely worked for me and may have even given me an edge. The “advantage of disadvantage,” that Malcom Gladwell writes about so elegantly in his book “Outliers.”
That is right, it can be an advantage to be neurodiverse.
I am now sharing this fact about myself to perhaps inspire others to think of a path forward on how neuropsychology can assist. Perhaps to touch other stroke survivors to come forward and talk about themselves and about how others can support them.
A stroke is always a major health event. It is usually traumatic and life changing. I know first-hand that the invisible consequences of a stroke can be equally as devastating as the ones everybody can see. But most stroke survivors can do most of what they once did, with some form of management. I am living proof of this.
A deficit in one area can become a strength in another area. For example, in the classroom I teach the same way I process information personally, visually. By using PowerPoint, metaphors, analogies, humor, poetry, discussion, field trips, and music. For my final exams, I don’t ask my students to write 20-page papers, but to present 3-minute TED-style talks. I also focus on conceptual courses; I teach courses like Happiness, Sport Psychology, the Psychology of Music, and my favorite, General Psychology. My students seem to love it and I have received many teaching awards, the most recent one in 2019 for outstanding teaching from the Pennoni Honors College at Drexel University. I am very grateful to the science of neuropsychology and rehabilitation psychology.
I lived through all the fears of having a neurological event define me; but ultimately it did not.
