After weeks, perhaps months, of trying to decide whether or not to undergo the epilepsy monitoring, I elected to take the needed steps and proceed. Even after registering and meeting the doctor and team of techs I was still ready. Then, however, something shifted and I didn’t feel prepared (emotionally/psychologically) anymore — I even started to wonder if I ever was. Perhaps it was the hospital setting and the rising anxiety that these institutions produce. Or the clinical smell that permeates my unconscious mind, leaving me with a sick feeling in my gut. Or the veggie burger I ate that tasted exactly like the one I would consume at Mass General. Maybe it was the person in the next room who was moaning and crying while amid a seizure and/or experiencing post-seizure horror that caused a terrifying delirium, which is inexplicable. Maybe it was a combination of all these elements, but I decided to postpone the study… in fact, I was almost desperate to leave the hospital as fast as possible.
The process post-study didn’t sound as easy as I hoped. Afterward, Post data collection, I would undergo several neurological tests, i.e., language, cognitive function, etc., to ensure the safety of potential surgical resection. Then, a team of neurologists and neurosurgeons would get together and review ALL the information and decide if I was even a candidate for surgical intervention. This testing/deliberation could take 4-6 months. Though I knew it wouldn’t be so cut-and-dry (no pun intended), I certainly didn’t think it would take that long.
For the time being, I decided to take baby steps. I left the hospital with what’s called an ambulatory EEG. This allowed me to return home to continue resting and healing — both of which are desperately needed after years of treatment and the emotional, psychological, and physical stress this entire ordeal caused. Before leaving the hospital, a dozen diodes were glued to my scalp. These are then connected to a small box that gathers information 24/7. I was also given a camcorder meant to be left on while I’m sleeping, sitting reading, writing, playing guitar, cooking in the kitchen, etc. — basically any place I might be for several minutes. The intention is to capture any possible seizure-like activity via brain waves and on film.
Perhaps this monitoring will shed some light on certain elements and reveal potential seizure activity.
Baby steps. Slow and steady…
I’m trying to race through all these tests, not just those related to the seizures, but every single test (blood labs, CT scans, MRIs, etc.), desperately hoping to return… but to where I know not. There is some kernel of normalcy out there — there must be, right? Although I am trying to find it in the past, I know, beyond a shadow of a doubt, that this normalcy I seek, this peace of mind and, dare I say, acceptance, is found right here and now.
I just haven’t gotten there; I haven’t arrived. Acceptance of what is, that ability to live (more) presently, is just beyond my grasp. I know I could easily take hold it, maybe lean just a little farther out, bravely extending, trusting myself in doing so, but I’m held back. The bitterness and anger pull me the other way, back into the known. I am seeking normalcy in this place, in the past, but all that remains some visions and daydreams lead to the bitterness and anger felt presently. I often wonder, when in a moment of clarity, how much I polish those memories to better serve my current state of anger, sadness, etc. This is where the emotional and psychological exhaustion, or at least the majority, stems from; the continuous construction of a palatial past to which a return is impossible.
healing is a circular path 