Brain Surgery - It Just Got Real

by Placerville Newswire / Jul 09, 2018 / comments

[Cris Alarcon, Part 2 in a series. 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 during the testing she had reduced my medication in half, [back to a level I was at 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 so she had added a hard-core anti-seizure drug (a 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 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 “life or death” 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 rural store. She invited us to her and her husband’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, a 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 that 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 had her first major surgery without any family to wish her well going into surgery and to stand by her recover bedside.

I had to stop and think really hard. I cannot live with the idea that I am an abusive husband, even if it is caused by some health thing. That is simply abhorrent and reprehensible to me on a most fundamental level. Was I really the kind of man?  I decided to focus on that question for a couple of days to see if I was that bad. I was shocked and disgusted by what I saw.  My memory sucks and the drugs make me feel like I am moderately drunk, all of the time.  I was really completely clueless as these focal complex seizures almost always include a 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 personal 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. By the weekend we were at a party with friends, many I had not seen in years.  I watched Sherri dance happily and flutter about like the social butterfly she is. By Saturday, the idea of brain surgery was welcome.

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

Part 1 "Provoked Seizures and what I learned from a week in an EMU"
http://inedc.com/14/provoked-seizures-and-what-i-learned-week-emu

Part 2 "Brain Surgery - It Just Got Real"
http://inedc.com/14/brain-surgery-it-just-got-real

Part 3 "Major Illness is Life's Best Roller Coaster"
http://inedc.com/14/major-illness-lifes-best-roller-coaster

Part 4 "My tiny part in a far reaching medical breakthrough"
http://inedc.com/14/my-tiny-part-far-reaching-medical-breakthrough

Part 5 "Rounding Third and Headed Home with my Neurological Team"
http://inedc.com/14/rounding-third-and-headed-home-my-neurological-team

 

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[About the abuse I am talking about: "Gaslighting."  I really had no idea, but I have been Gaslighting my wife for years.  I used to think my memory was great because I could remember so many things in great detail.  I did not know that I lost bits of memory here and there, often.  So when others said something happened in a way I remembered differently, I simply scoffed at the idea, because I knew better.  I am strong willed and outspoken.  I don't know how many friends I have lost over the years due to this memory, and strong personality issues, but thankfully my wife has stood by me, even when I was Gaslighting her.  It was certainly unintentional, but the result is the same

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity.  https://www.psychologytoday.com/us/blog/here-there-and-everywhere/201701/11-warning-signs-gaslighting ]

CA