[Cris Alarcon. Part 1: Provoked Seizures and what I learned from a week in an EMU ]
First, let me give a heartfelt shout-out to Raymond, Martin, Linda, and Misty. Without their thoughts, I don’t know how this week would have evolved, but I am sure it would have ended badly. Most especially for my wife and Partner in life for over 30 years. She has stood by me, supported me, comforted me, even when I have been such a hostile and abusive fool, more so than I can even believe I could be.
“The ---- just got real” said my friend Raymond. Yes it surely did! I had no idea of how hard this news would hit me. My wife Sherri did, as she understood where that prior testing was headed. That the exclusive hospital would not have called me to schedule a week long testing on short notice if they were going to send me home with a pat on the back and a “have a nice day.” But I was in denial and I was not prepared for the results.
As soon as seeing the intake paperwork for the follow-up visit I was alerted and had to make a conscious effort not to panic as I read the word, “Intractable.” In the Epilepsy world, “Intractable” means epilepsy that cannot be controlled by drugs, that often surgery was the only option. Brain surgery!
Minutes later I was taken to the exam room and soon after my Neurologist came in. She explained to me in a professional manner the results of the testing the previous week. She did it in a manner that exuded confidence and calmness. It made it hard for me to panic while she explained that she had reduced my medication in half, [back to a level I was prescribed just a year ago when I began seeing a psychologist to deal with my anger outburst and depression.] That resulted in my having had seven seizures in a couple of days and they were able to pinpoint the exact location of where every seizure had started. She then added that when they restarted my current level of medications, but I still had seizure activity. she had added a hard-core anti-seizure (controlled substance) and even then my seizure activity did not stop.
In a calm and professional manner she explained that the combination of these conditions made me an ideal candidate for surgery. That there would be a battery of further testing called “brain mapping” and protocols that would that I would mean that I would have surgery near the end of the year. That she had scheduled me for surgery. She gave me a list of dates and a handful of drugs to carry me over until the insurance had worked out the details of filling the prescription for this expensive drug. She answered every question Sherri and I had, then quickly exited the room so Sherri and I could talk adding that she would be back in a while to complete paperwork on the Script. [Yes, my doc is a pro in many ways].
Surgery… Brain Surgery… Well for some reason I did not see that coming. Raymond summed it up better than I could, “The ---- just got real,” indeed it did!
I would have to give the idea of surgery a serious consideration and I thought of it like this, it was an optional surgery, not a life-threatening thing. A “Quality of Life” versus a “Major Surgery” decision. But I would think about it. After all, we are talking about brain surgery so I would have to think real hard about it.
I posted the news on my personal blog with the note that this story would be a little late as I did not know how I felt yet about having brain surgery by the end of the year. Then a friend responded, a friend that had already had the same brain surgery and had already told me what a life-changer it was for him. He told me how lucky I was to get a surgical appointment so fast. Martin knew because he had been there, so anything he had to say carried great weight with me. I knew I was getting fast-tracked by many other signs. I have a talented neurologist with the willingness to go to bat for me in a real way, and the horsepower to force it through the system. I am not so much a believer in luck, but I do believe in providence.
Speaking of Providence, almost on the way home from my neurologist in Sacramento I saw a friend in the parking at a very local store. Linda invited us to her and Jim’s Summer (anniversary) party. I don’t even know how it came up, but somehow the conversation turned to her Ex, her Ex’s personality. What she had to say hit me like a ton of bricks. She was describing him as a real jerk, an moody and irrational jerk with a poor memory. What She described in her Ex is how I had been acting for a couple of years now! I was dumbfounded, God smacked! he was such a jerk that I could completely understand why she left him behind. But hat meant that my wife was getting that kind of abuse and she was standing by me in hope that with good medical treatment, that I could change…
Then Misty told me how lucky I was to have my family with me at this time as she he first major surgery, but without any family to stand by her recover bedside.
I had to stop and think about that. I cannot live with the idea that I am an abusive husband, even if it is caused by some health thing. That is simply unconscionable and reprehensible to me on a fundamental level. Was I really the man Linda described? My memory sucks and the drugs make me feel like I am moderately drunk, all of the time. I decided to watch for a couple of days to see if I was that bad. I was shocked and disgusted by what I saw. I was really completely clueless as these focal complex seizures almost always include a complex memory loss of the event and a period following. I was clueless to how epilepsy affects my moods, and how that cascaded down to all those around me.
This new medication has many side effects, but it has improved my memory, but that has been a burden. I now can remember some of my extreme mood swings. The irrational behaviors. The ugly outburst that I truly apologize for, after the act. But that ugliness does not disappear because I don’t remember it, no more than it disappears from Sherri’s soul, just because I am sorry. I discovered that she had been crying in private, and putting on a happy face for me, to keep me from panicking over my health issues.
On Monday I scoffed at the idea of brain surgery, even as I secretly knew that the cynicism was driven by my own fears. By the weekend we were at a party with friends. I saw many friends I had not seen in years. I remembered our life before I got sick. I watched Sherri dance happily and flutter about like the social butterfly she is. By Saturday, the idea of brain surgery was welcome and could not come soon enough.
Thank you Raymond, Martin, Linda, and Misty for helping me get real, overcome my fears, and remember my priorities. Most of all, thank you Sherilyn for being the most stalwart wife a man could ever wish to have. I am Blessed.
Cris Alarcon, 7/9/2018
