Where should I start? The first time I experienced a seizure? The first time I was diagnosed with psychogenic seizures by that awful neurologist? What about beginning with my sojourn in the epilepsy monitoring unit, several years into my recovery?
There’s so much to this story, so many twists and turns. Whenever I think about the topic, my emotions dart all over the place—frustration, anger, and resentment, grief and sadness, and finally relief that for the most part, I’ve come to terms with the whole story.
No matter where I begin, the story is about… What is it about? I know that it about more than seizures. Is it about the ineptness of so many members of the medical community in communicating with patients? About the mental anguish they can cause? Is it about the limited knowledge neurologists have about the brain and the inability of some to admit to their ignorance? Perhaps it’s about another aspect of my journey towards acceptance.
I certainly started out merely wanting to write about the part of the bloody brain story that involves my seizures. Perhaps the clue is in where I want to begin. At first, I wanted to start with the epilepsy monitoring unit. but it didn’t feel quite right. When I finally sat down at my computer to get starting, my brain wanted to start with a letter I wrote more than a decade ago, approximately six years after the surgeries, to the “evil neurologist” who first diagnosed me with pseudo-seizures. That was the start of my difficulties addressing the issue. Since my encounter with her, whenever it came up, I went on the defensive.
I gulped and started, “Dear Dr. S.”
Wait! Dear?! There was nothing dear about her. I took a deep breath, then let it out. Here goes:
You probably don’t remember me, one of many patients who have crossed your path. I, however, remember you, one of many doctors I have encountered throughout my journey in the aftermath of the brain bleeds.
I remember you because you made a huge impact on me. To this day, I suffer mental anguish as a direct consequence of your ineptness, because you didn’t listen, because you only heard what you expected to hear, saw what you wanted to see.
With very few pieces of the puzzle at hand, you decided what the final picture looked like, and when you found new pieces that didn’t fit, you twisted them out of shape and forced them into place.
After I had spent more than a month living a nightmare, in and out of hospital, scared and alone, you came into my hospital room, and without even looking at my chart you judged me, you decided I was a headcase. Later, after you glanced briefly through my voluminous file, you took all the evidence and somehow twisted it around to justify your initial, erroneous diagnosis.
When you first walked in the door, with your nodding interns in tow, and saw me smiling and relaxed, your face went sour. When I told you that my angiomas had bled, you seemed skeptical. Then you left.
When you walked in the door the second time, you had clearly, finally, glanced at my chart. “You do indeed have angiomas, and they have indeed bled.” You were frowning. “Your EEG showed no seizure activity. What are these episodes like?”
After you witnessed me losing muscle tone for a moment, you told me that my seizures were not true seizures, that they were brought on by stress, and suggested that I seek a therapist.
You told me that I should not be stressed by the angiomas because they are harmless. Dumbfounded, I demonstrated my difficulties walking heel to toe in an attempt to convince you that they were not harmless. You mimicked my flailing arms and accused me, “You’re compensating, therefore you are faking it.”
I was at a loss. I thought that perhaps I had lost all reason. I asked my friends, my physiotherapist, and my neurologist. They were emphatic—you were the one who did not make sense. I was compensating because I had balance problems, not vice versa.
Your parting words were that I had problems and needed therapy.
During that entire period in my life I was fragile, walking a fine line, constantly on the verge of toppling into the abyss. And with those words tossed over your shoulder as you strode out of my hospital room, your smirking bobble head interns following behind, you shoved me into an emotional tailspin.
How could you be so thoughtless, so careless with your words? Even if the seizures had been psychogenic, due to psychological problems, if you had followed common practice, you would have broken your diagnosis to me cautiously, making sure that you caused no further psychological harm.
How could you have concluded that the seizures were psychogenic based on the evidence at hand? Twenty-minute EEGs often miss seizure activity. In addition, the symptoms I exhibited during my ‘seizure-like’ episodes, were consistent with symptoms of simple partial seizures. Also, since then, I learned that every single EEG I had undergone showed abnormal brain activity. At the very least, you must have known that I was at high risk for seizures, epileptic seizures, ‘true’ seizures.
Should I have put on a patient-in-distress look? Would that have changed your attitude? I was happy. For the first time since the nightmare began, I had someone with me who stayed by my side and accompanied me to all those scary tests.
Not only did you show a mind-boggling lack of sensitivity, but you also showed your ignorance. And you were judgmental and cruel with it.
I came away from our encounter broken, doubting myself. Could I have prevented the seizure-like episode? Was I being melodramatic? Was I delusional?
To this day, I doubt myself. Am I an attention seeker? Am I over-dramatizing my difficulties? Should I be pushing myself harder?
These thoughts are often detrimental to my health. I tend to push myself too hard. I tend to keep my difficulties to myself. And I have trouble asking for help. Several times I have failed to seek medical attention when I should have.
I don’t want to make a fuss. I don’t want to be a malingerer. Even as I am learning to better pace myself, I feel the need to justify myself. And I continue to question my motivations.
You and your actions were the cause of so much distress and despair. After our encounter, I became suicidal.
Did you walk away from my hospital room feeling self satisfied? Were you smirking like your interns were? Did you feel like you had caught me at my games and taught me a lesson?
I wanted to place a complaint about you with you superiors, but I was discouraged from following through, and I did not have the wherewithal to do so without support and encouragement. On several occasions over the last few years, I have thought to confront you face to face, but was not ready. This is the best I can do, six years after the fact. Maybe one day I will actually send you a letter similar to this one.
Though the pain you caused still lingers, I should forgive and forget, but I cannot, despite being a forgiving person and despite my poor memory, another consequence of the bloody brain.
P.S. I hope I was the only patient you treated in such an appalling manner.”
Yes—I’ll start with a letter to the evil neurologist. And the rest will follow.