Brandon, 28, USA
Thanksgiving morning, 2009. My sister was returning to Kentucky from Utah, where she had gone off to college. She is Mormon, so that is the natural pilgrimage. I am Catholic, and so I used the chance that morning to go to an early morning old pre-Vatican II Tridentine Mass (Mass in Latin). I attended Mass and made confession. I drove over to the Starbucks by Churchill Downs since it is near the airport. I wrote a poem, I think, then picked my sister up. That evening we went to Thanksgiving dinner at family’s. Before dinner, drinking a glass of wine and talking with family in the kitchen, I felt a strange feeling I had felt at times for the last few months or so.
I remember when I first felt the feeling cooking dinner one night I thought that I was dying. I thought my soul was leaving my body. But the strange feeling, a partial seizure as I know it now, kept coming here and there, so I started to think less of it, despite the unpleasantness. So when I felt it that night, I leaned on the counter. My dad asked me if I was feeling alright. Knowing the feeling, I thought it would pass again, but it did not.
The next thing I remember was a white light and a voice from a distance saying, “Brandon, you’ve had a seizure. It’s Thanksgiving.” Well, with the white light, which was likely the lights from the ceiling or something, the rather distant voice, and the hazy, confused sort of feeling, I thought I was dying. I had never felt something so strange and frightening, so I called out, “Call a priest! Call a priest.” I thought I was dying and wanted to make my last confession and receive the Last Rites. But rather quickly actually, I came back to full consciousness and was told what had happened. I was diagnosed with epilepsy and told to see a neurologist. I was put on medication, and kept having grand mal seizures every once in a while; but more often they were partials. They seemed to get better for a while until around May of 2012 when I had my first episode of status epilepticus. I woke up in my bed convulsing, and I knew something was wrong. I called for my dad, and he came into the room. The last time I was at the neurologist he had said that I did not need to go to the emergency room for a seizure, since I have had them before. So when my dad called my mom, she told him to let it pass. But I knew something was wrong, and my dad called 911. I was in the hospital for two or three days. A couple months later, I walked out of my rather tedious call center job. It was a hot walk home—two miles—and the heat may have been a factor, along with the stress of walking out of the job, in the seizure I had the next morning. It was an even worse episode of status epilepticus. The records obtained from the hospital said I convulsed multiple times. For the next three days I was semi-comatose, and I did not leave the hospital until the fifth day. My neurologist changed my medication, told me I should not stay alone for the next few days, etc.
After this, the seizures got worse. There were no more episodes of status epilepticus but the partial seizures became more frequent. I returned to the call center job I walked out of that day, but had to cut down my hours. Eventually I had to quit because the partial episodes, happening multiple times a day, made it impossible to work. I applied for disability and am in the final process of the judge making a decision.
Though not working, and being a sort of invalid has been difficult, it has been a blessing in disguise as the saying goes. I have been able to get top quality care at the University of Kentucky Neuroscience Institute, with epitologists (neurologists specializing in treating epilepsy). The Medicare, plus the Affordable Care Act, has made is possible for me to get all of this for free due to my being unemployed, something I could never had afforded before, even with insurance. Because my epilepsy is intractable, medications are not likely to treat it. The neurologists at the University of Kentucky, where I began going in 2013, have been much more dedicated than any of my other neurologists since that is what they do—study epilepsy in depth. They have had me to multiple nights in the Epilepsy Monitoring Unit, which has helped diagnose the nature of my seizures more specifically. They have done tests to see about my candidacy for surgery—EEG, MRI, fMRI, CT, PET, MEG, and neuropsychological examination. Brain surgery was a no-go because my seizures seem to be localized more in the rear of my brain—temporal and parietal lobes. And the recent results from the MEG test show the seizures are localized deep within the brain, far too deep to operate. This area of the brain is a much more risky. But I was a candidate for the VNS device, which I received just a month ago. I now have a VNS device in my chest.
My epilepsy, because of the worsening of it in 2012, has made life more difficult. Not being able to drive and do certain things, even work, is hard. But because of it, and not being able to work, I have been able to receive better treatment via Medicare, and of course the dedicated staff at the University of Kentucky. Though my neurologist before the University of Kentucky was dedicated, he did not have the recourses of a university hospital. The two episodes of status epilepticus have also opened my eyes to how fragile life is. Also it has given me a special understanding of Dostoyevsky, one of the most famous epileptics of all time. His epilepsy is a subject all through his writing. I am currently reading The Idiot, and feel a strong relationship to Prince Myshkin. Also my interest in religion, particularly Eastern Orthodoxy (Dostoyevsky’s religion), gives me a particular interest in religion because his interest in religion and social justice is believed by some to be related to his epilepsy. This may be able to help me with my own writing, and I am now working on something that is a mix of his The Idiot and his Crime and Punishment, about an epileptic man whose ecstatic epileptic episodes are mixed with his increasing psychosis. I feel it requires an understanding of epilepsy to write of an epileptic character with depth, as in the case of Dostoyevsky. Also the link between epilepsy and genius is interesting. The philosophers call the poets “prophets”, not in a religious sense, but in that they understand higher things, like love, the passion that drives murder and love in one single heart, as in the case of the protagonist of Crime and Punishment. There may be something mystical created by epilepsy, a sort of particular understanding of human and divine nature that the average man does not see. Dostoyevsky clearly saw this, and many other great artists, were epileptics. Though this relationship is not absolute, nor even scientifically proven, it is commonly written about in academic papers and articles. I feel that my epilepsy, despite its negative effects, has allowed me to have a better understanding of human nature. What neurological or neuropsychological reasons are the cause of this I cannot be sure. Perhaps it is how the brain of the epileptic functions, its misfires causing it to fire in superior manner in the parts of the brain that deal with creativity and religion/philosophy, or in others the analytical, scientific part of the brain, such as in Julius Caesar. My previous neurologist thought this was possible, and we talked often about Dostoyevsky’s epilepsy and its relation to his religion, politics, and writing. Whatever the cause is, God has allowed one thing to be taken from me, to give a great thing in return perhaps. There are plenty of everyday people in the world, but there are not enough artists. Artists have to be unique, and every person with epilepsy, artist or not, is unique in that they are singled out from the average person. But they should not see it is a bad thing. We know that epilepsy is not a form of madness or demonic possession today, and taboo has been mostly removed. The negatives are there, but they need not completely destroy the person’s life.
- February 14th, 2015
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