...We'll be lucky if we ever see the sun."
"Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of cases, but the true frequency depends upon the definition of uncontrolled."
The above quote is just a snippet of a much longer article and much larger conversation about what 1/3 of patients diagnosed with epilepsy experience called "Refractory Epilepsy" (see below for the link to the article). According to the medical discourse surrounding epilepsy, it is certainly the worst form of epilepsy (aside from the pseudo diagnosed/waiting in limbo kind that I'm currently experiencing); the type the article labels a "heavy burden."
Essentially, Refractory Epilepsy is diagnosed when an individual's seizures are not controlled by medications. The bad news: only 5% of those diagnosed with Refractory Epilepsy will get better (through either finding a medication that works, or alternative therapies). This form of epilepsy is also called "drug-resistant" epilepsy, even though a diagnosis can be made as early as after only two failed medication therapies. I myself would call it, "drug-avoidant" or "I can't get in to see my doctor until freaking March."
Not to bore you with rhetorical analysis, or betray my growing need to be defensive, but the article then makes an interesting tonal shift. Moving from a predominantly expository/informational article (with an argumentative undertone that posits that only the discovery of better medications and a cure will truly help those with any form of epilepsy), the piece grows investigative (and dare I say, interrogative) in its tone and content. In my opinion, the article becomes a somewhat aggressive critical examination of any epilepsy diagnosis. In my experience examining this discourse community, this shift usually indicates a lack of understanding of the illness, using the argument that you're just incorrectly diagnosed so doctors don't have to admit that they don't know what's going on. The article even goes so far as to use this sinister anecdote,
"Imagine coming home at night after too much partying, and finding yourself unable to unlock your front door. One possibility is that you are at the wrong house. Another is that you are using the wrong key. Or you really may be locked out. Perhaps someone inside has engaged the deadbolt. Refractory epilepsy displays three similar categories."
Okay, in fairness, seizure activity does not necessarily mean an individual has epilepsy, that much I will admit. And yes, as the author suggests, other conditions can mimic epilepsy and cause repeated seizures. Citing that 13% of patients in England are incorrectly diagnosed with epilepsy, Dr. Fisher (the article's lead author) makes a valid point - a doctor's understanding of a patient's condition, and the choices made by the treating physician in treatment therapies, are penultimately important in that patient's recovery.
Hence the quotation that starts this post - the definition of "uncontrolled". It's an interesting and thankless riddle to ponder, especially in the wake of a seizure disorder. Having even one seizure replaces bodily control with some horrible other thing - a devastating intellectual and physical loss of the self you've become. Hence why so many individuals with seizures experience psychological disorders, like depression and anxiety. In a world in which we have to take on so many roles each day and perform such a complex juggling act of professional, mother, student, wife, etc. - the loss felt by an individual with seizures is amplified by the fear of what is necessary to get through each day.
For the last three days straight, I have experienced UGLY seizures - the ones where I lose control, lose consciousness, and lose chunks of time (hence why I haven't been able to post a new post in some time). It seems as though my condition is indeed not responding to the medications, placing me in a perpetual state of fear, and forcing me to investigate Refractory Epilepsy. The migraines and back pain persists even with the "excedrin on crack" (and since my seizures and migraines are interwoven, with uncontrolled pain comes uncontrolled seizures). I am trying to limit the use of narcotics, since I don't have many Percocet left, am fighting for health coverage for this month, and am not sure that my doctor will give me a refill, since I had to follow up with her nurse twice since my ER visit, and have still not heard back.
It's past 5 a.m. I've been awake writing this post for over an hour because I wake up in pain at 4 a.m. every day now. I sit in my old man recliner, sometimes forcing myself to wrestle with the pain and try to sleep, sometimes just staring at the clock as it draws me closer to the start of my day. But today, I choose to ponder this idea of "uncontrolled". If control is an illusion, if that idiom bodes true for those of us not dealing with "uncontrolled" seizures, then perhaps "uncontrol" is just as much of an illusion. Perhaps we are all just waiting for the right thing to miraculously appear when we lose control, so that we can convince ourselves of the fantasy, in a world that demands rigidity and self-control. As zen as it may sound to abandon the fantasy of control and reject its power, perhaps I am only able to be so zen because I've run out of energy to feel anything else. Perhaps I am only able to accept "uncontrol" because this form of epilepsy, refractory or not, is forcing my hand.
Time is inching me closer to the start of a day at work, where I will be expected to perform pretty complicated invoicing, while planning an event and developing a social media schedule for a client (along with sundry other tasks). This does not include making phone calls necessary for the wedding, which is less than a month away. And teaching, grading, communicating with students, all while heavily medicated and exhausted. This is a daunting list on "normal" days, which in themselves are something of a chimera. But today, after a seizure last night, followed by 5ish hours of sleep - I'm going to make it work, because that's my job. But my chilly walk to the train will inevitably feel like a great accomplishment. Until then!!
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