Seeing Epilepsy From the Patient’s Point of View
By PAULINE W. CHEN, M.D.
Johnny Quirin/Spectrum HealthDr. Brien Smith discusses next steps with patient Douglas Davis at Spectrum Health Butterworth Hospital in Grand Rapids, Mich.
One day during medical school, my classmates and I learned that one of the most well-liked doctors-in-training in the hospital had had a seizure while leading morning work rounds.
The sight of him writhing had caused the other doctors and nurses on the ward to panic. Some stood mute, frozen with fear. An intern, believing that the seizure arose from low blood sugar levels, took his half-eaten jelly donut and held it against the mouth of his seizing colleague. Others yelled to the ward secretary to “call a code,” and continued to do so even after another dozen doctors and nurses had already arrived on the floor.
The young doctor eventually recovered. But for many of the medical students and doctors who heard about the incident or were on the wards that day, the dread of that morning would linger long beyond our years of training. Epilepsy was, and remains, a frightening and mysterious malady.
For the last 20 years, Dr. Brien J. Smith has tried to change how doctors and patients view epilepsy. Earlier this year, Dr. Smith, chief of neurology at Spectrum Health in Michigan, became chair of the Epilepsy Foundation. Being elected head of a national organization does not seem unusual for a doctor who is a well-recognized authority and advocate in his or her field. What is extraordinary is that Dr. Smith knows first-hand about the disease and what his patients experience: he was diagnosed with epilepsy while in high school. “Every day I see how off-base health care workers are with seizures and epilepsy,” Dr. Smith said recently. “There’s a lot of stigma attached, a lot of stereotypes regarding cognitive abilities and how seizures should look.”
I spoke to Dr. Smith and asked him about his advocacy work, his diagnosis and how being a patient has affected his interactions with patients and colleagues.
Q.When were you diagnosed with epilepsy?
A.My epilepsy probably started at a young age. I remember waking up as a young child with weird dreams — a kaleidoscope view of the world. In my midteens I had these feelings of kind of a brain warp that would pass. Finally as a junior in high school, I had a seizure getting out of the car in the high school parking lot.
Q.How did you decide to become an epilepsy specialist in medical school?
A.I liked surgery and I liked emergency medicine. But I realized I needed to find something that didn’t require procedural work or spur-of-the-moment cataclysmic decisions where the pressure is on and even if you have a little short-circuit, that could mean life or death to someone.
I also was interested in neurology and figured it was my calling in life.
Q.How did your epilepsy affect your interaction with colleagues?
A.I never hid the diagnosis. But a few years later after my training, I was asked to write a forward for a book that was a collection of personal accounts of seizures. That was not an easy decision. I worried that by being so transparent, people might see me as handicapped, that they might view me differently.
The decision to write that forward made me realize that I should be more of an advocate. I had noticed that among my colleagues, there were a lot of stereotypes of those with the disease, like “Oh wow, look at that crazy person.” None of them were learning a lot about seizures in medical school and training, and they didn’t really understand how seizures could affect people.
Q.What has happened with your epilepsy?
A.I was seizure-free for many years but had a major seizure on my way to my first major epilepsy meeting in 1992. On an M.R.I. afterward, the neuroradiologists found a slow-growing brain tumor that probably caused the seizures all along but was never seen, or missed on early CAT scans.
I ended up getting the left temporal lobe of my brain removed, which leaves people with difficulty naming things for the first six to 12 months until the brain figures out how to get around the problem.
So there I was for a while, a neurologist who couldn’t name things.
Q.How have your own experiences affected your interactions with colleagues?
A.It’s really helped me see that doctors need to be taught to understand seizures. It’s a disorder with over 40 different types or syndromes that can affect anyone. There are Supreme Court justices who have had a couple of seizures and function normally. There are adults who have had significant head trauma, strokes or brain tumors. And there are individuals for whom epilepsy is catastrophic — children who all of a sudden find themselves going down a path where there is a strong likelihood they will never have a normal life.
Q.Did the experience change how you interact with patients?
A.After my surgery, I was a very different person, with very little motivation and energy. We had just rearranged the furniture upstairs and I needed time to re-equilibrate. But one rarely hears doctors talking about the transition after surgery and how it can go in many different directions because most physicians have no clue of the implications of the diseases or their treatments.
One problem I face is whether I should share my own story with patients. I don’t want patients to assume that just because Dr. Smith is doing great, everyone who has epilepsy surgery will as well. My job is to be as realistic as possible about outcomes and risks. With brain surgery, the possibility of a major complication can’t be excluded. This is the brain we’re talking about. Once you take a part of it out, you can’t bring it back.