If you’ve already taken a moment to look at my resume you have a partial image of my adult life. Add to that my daughter who’s nearly 23 and a son who turned 20 a couple of months ago and my image is a bit more fleshed out. Imagine back to 1998 when I called my neurologist to tell him that I needed to stop driving because of too many complex partial seizures and a new dimension of my life begins to unfold. Listen to that phone call and you’ll hear the secretary tell me that she’d been trying to reach me a good share of the day. My neurologist had decided to pull my driving privileges because of my message. But, I had called not knowing about his decision. My voicing the decision to surrender my priviledge to drive prompted him to leave the license in my wallet with a clear understanding that if I violated the agreement things would happen.
Now, shift your attention a little over a year further down the road from my surrendering those driving privileges. You’re now walking around a park with a guy who’d been shoved on to disability by his last employer. A week or so before this my supervisor had pulled me into a conference room with a stack of files. Each file in that stack had multiple tags hanging out. I knew why those tags were there. What I hadn’t, yet been made aware of was that each of those tags were pointing at my gross mistakes in documenting. None of the tagged mistakes were about signatures. Rather, those tagged entries would be confusing unless you knew what complex partial seizures do to your thinking.
Now let’s get back to walking around the park. I was then unsteady in gait and occasionally not fully conscious yet I’d been labelled with conversion disorder by a neurologist. All that meant was that he thought that I was disabled because of deep psychological needs to hide something from myself. Oh, how painful that proved to be. You see, because of my being a clinical social worker who had daily dealt with extreme cases I could actually fit into that picture. Walking around the park everyday provided me with a place to quietly cry through so much confusion.
Leap on forward a few months and listen to my phone conversation with my second neurologist who took a deeply different position. Knowing snippets of my history he told me that until he’d done further and different testing he’d assume that I was telling the truth about the seizures. His decision provided relief. He’d learned from patients he’d labeled, like I’d been, to not stick to the standard encephalogram.
This neurologist knew that I’d already spent two 5 day periods locked away in a hospital room with about two dozen electrodes glued to my scalp. Because both of those stays showed no seizure activity the neurologist labeled me with “conversion disorder.” This neurologist, however, placed two additional electrodes “in” me. I know that it isn’t easy, but realize how important this is to me. This neurologist injected electrodes toward my nose on each side placing those things just below each cheekbone. As we came to the end of my third 5 day hospital stay I was told that I’d clearly had multiple low level seizures that would not have been visible without those two additional electrodes.
Move on ahead by a few months into the fall of that year. Try imaging looking forward, with me, at undergoing a left temporal lobectomy. Joy and definite fear are good descriptions of what you’d be experiencing. By January things had taken a turn. Because my EEG’s didn’t make clear that the seizures were truly one sided the team had decided that I needed to undergo a further step. In January of that year two holes were drilled into my skull just ahead of my ears. Through those holes thirty-six electrodes were spread out across my brain. Twenty one days latter the team discovered how subtle my seizures could be. Behaviors faintly suggesting a complex partial seizure were matched up with consistent odd reading on the EEG. On the twenty third day I was back in surgery to remove those electrodes. The next day I was released from the hospital.
Meeting with my neurosurgeon, I voiced the need to wait till my kids were out of school for the summer. So then, on June 1st of 2001 my left temporal lobe was removed. Appreciation is too modest a word to describe what I feel about the work of that entire team. My gratefulness is natural even though that surgery didn’t resolve my not being able to work. Because of my short-term memory now functioning too far into what a 70 to 80 year old has to deal with even Vocational Rehabilitation has signed me off.
Now you know a piece of my recent history.