Wednesday, November 25, 2015

Hearing Things

     As I said before, neurologists ask some very unique questions and do bizarre things during exams, such as flashing lights and waving bottles of spices through the air. None of this magic prompts a seizure for me, but it does make it easier to share possible connections that would otherwise seem too weird.
    I'm not sure how to begin this story, so here goes...
    When my mother took me shopping for clothes as a little girl, something pretty strange always happened in a certain part of Belk department store...only the store in our hometown, not the one in Asheboro or Greensboro.
     It only occurred in one area of the store near the stairs, but it happened so often that my mother mentioned it to one of the employees. I didn't do anything weird; I felt it and then told my mother.
     What happened? Well, that's the weird part. It was hard to describe. I felt extremely uncomfortable but not in pain whenever I walked around that part of the store. There was a high-pitched noise inside my ears/head.
     When my mother mentioned it to the sales clerk, she said a few other people had the same complaint, and I was so relieved. That discovery gave me the same feeling as finally having a diagnosis for my "spells." I was relieved that it wasn't all in my head and no one else's.
Superpowers anyone?
     After we talked to her more about it, my mother and I guessed that it might be something electrical, a high-pitched noise being made by the alarm system. Perhaps I was hearing something at a frequency most people couldn't detect?
     I liked that answer because it made me feel like the Bionic Woman.
     No neurologist has ever commented one way or another when I tell my Bionic ear story, so I don't know if they see any connection to my disease or listen to be polite.
     However, I do remember it as the first time I tried to explain something in my head that no one else seemed to understand, something that was only happening to me.


     I'm an instructional assistant at my sons' elementary school here in Springfield. Every weekday, I try to make sixth grade a more positive experience for three boys with autism, and for their classmates, so they can all learn.
     Most days are successful, almost all of them, because it's a really good school.
     Part of my job is to figure out what events "set off" behaviors in my students.
     For example, one of my students gets nervous on windy days, so I keep a close eye on him and the trees outside the classroom windows when it storms. The other students are kind about it and do wonderful little things to help him stay calm.
     When I watch him so carefully on those days, how agitated he is, I wonder what it is about the wind that scares him so much. Does he feel it more somehow or in a different way?
     Does it hurt him the way that one part of that one store hurt me, in a way that is very, very real but no one else can feel but him?
     Is it scary, like the beginning of my seizures, or is it wonderful, like the middle part? Does he run to the window in fear or fascination?
     Most of all, I wonder how he stays calm and sits still in class, usually, when obviously he is feeling something else the rest of us aren't...Something he can't explain to us in words.
     Suddenly, I don't feel so alone any more.

Monday, November 23, 2015

The Syndrome

     Soon after I found out about my flat seahorse, I went to Bethesda to meet with a neuropsychologist at Walter Reed Hospital. His job was to figure out if epilepsy makes me less smart or more ways that need to be helped.
     That's something I have tried to keep a close eye on since my diagnosis in 1989. The word epilepsy kept me out of the DSM-III, but I wasn't taking any chances. The rules in that book have changed a lot since then.
     The best information then and now came from books by a neurologist my big sis told me about, Oliver Sacks.
     I started with The Man Who Mistook His Wife for a Hat, then Awakenings and kept going from there. His books make me feel like I have a gift rather than a problem, a chance to experience life in a way no one else can.
Dr. Oliver Sacks (1933-2015)
     I even wrote Dr. Sacks a letter when we lived in Okinawa and my disease was suddenly such a big deal. He took the time to write me back, which elevated him to hero status in my mind. From then on, I imagined myself to be a member of his club of misfits.
     There was another neurologist whose book I didn't find so appealing because it was spooky and less scientific. I read a similar book last summer.
     Both authors use such historical figures as Vincent Van Gogh and Fyodor Dostoevsky to explore the connection between epilepsy, creativity and madness.
     They are particularly fascinated with a syndrome that may or may not exist, depending on whom you ask. Even Wikipedia admits the syndrome isn't fact-based, but still, it's interesting reading. Stories of deviant behavior sell, and there is a lot of wiggle room for writing about famous dead people. (Example: Elvis Presley)
    More doctors and fewer storytellers should explore the topic before the syndrome takes on a life of its own and becomes a new demon to be exorcised/conditioned out of us.
     I spent the weeks leading up to my evaluation wondering how similar I might be to the people described in those less-than-scientific publications. Would my doctor send me across the street to the National Institutes of Health for extensive study to find out just how much of a freak I really am?

Saturday, November 21, 2015

Zombie Mom

July 25, 2015

     That's an entry from the seizure tracker app on my phone. Thanks to the new app, I was able to see what my seizures look like from the outside. My first reaction was surprise at how physical the changes are, how different I look.
     How did I manage to fake my way through hundreds of seizures without letting others around me realize I was in the Twilight Zone?
     I must be a fantastic actress, huh?
    The first one I captured was a doozie. I passed out on my front porch swing, and the phone landed face up. So, it shows me fading away, regaining consciousness and then walking into the house.
     I was shocked by how "out of it" I looked, even during the conscious part..Not so much afterward but at the beginning.
     Maybe I will download it and share if I'm ever brave enough and think it will help someone. There are people like me with videos on YouTube, but I'm not there yet and might never be.
     I'm taking baby steps. Last night, I was honest enough to tell a friend, who had never seen me have a seizure before, just as it started. I could've easily faked it, but I didn't.
     It was the same old routine. First I was scared, then I felt wonderful..somewhere else.
     And then, for some reason, I had the strong urge to apologize.
     But why?
     All I did was lie down and zone out for several seconds, but still, I felt that because I had lost control of myself, I had done something wrong and needed to say I was sorry.
     My epilepsy had leaked out for a new person to see.
     What would happen next?

Sunday, November 15, 2015


June 30th, 2015
     Twenty years after my wreck on Okinawa, it happened again. I had another seizure while driving, lost consciousness and drove into a guardrail  on I-95. I was on my way to Richmond to see Jimi.
     I stopped for gas in Stafford, which is about half an hour from here, depending on traffic. We lived in Stafford twice before because it's close to Quantico, where Marines go to school.
     I thought I was being careful enough, changing the music if my mind started to wander during a song, drinking water on the way so I wouldn't get dehydrated. It wasn't enough, obviously.
     It was the same feeling as always, the aura that gives me a few precious seconds to do whatever I need to do to prepare, depending on the situation. There really isn't time to panic. Once the aura comes, I'm in a different place, trying to think clearly while my mind is slipping away.
     "Pull over!!!!!" the remaining part of my conscious brain ordered. I looked for an exit; I was in the middle lane, surrounded by traffic and trying NOT to have a seizure.
    I was trying soooo hard not to let it happen. That sounds like something a child would say, I know.
    My vision started to go. When I looked at the road, everything began coming apart and "spread away from the center," like in the movie, "Inception." That's the last thing I remember before waking up with a brown arm resting on mine.
     "Are you okay?" asked a woman.
     "Did anyone get hurt?" I asked.
     She said no, that all the cars around me had managed to swerve out of my way and keep going.
     An off-duty state trooper stopped, too. He leaned into my car from the passenger's side, and I told him I had a seizure. At first, he couldn't hear me because of all the traffic going by. That's the first time I ever considered wearing a label.
     An ambulance arrived, but I didn't have to ride in it this time. I called my husband to tell him I screwed up again. And yes, that's how I feel every single time my epilepsy gets in the way. It's a part of me, and makes me do stupid things, such as staring into space until I crash into things.
     The kind woman who stopped to make sure I was okay stayed with me until the tow truck arrived. I got her phone number and noticed the same area code, 919, as my parents. Someone from home had taken care of me:-)))
     The patrolman was nice to me, too. He didn't give me a ticket, but I knew my license would be gone for a while. It didn't matter at that point because I was still feeling so much relief from NOT hurting anyone else and from how little damage there was to my car
     Riding with the tow truck driver was an interesting experience. I was still feeling loopy from the seizure, but he was in a chatty mood.
     First, he brought up the subject of gay people in the military. I listened, staring out the window. He was testing me out, feeling the waters to see how I would respond. When he told me there were gay Marines walking around Quantico holding hands, I said, "Oh really," as if he were discussing the weather.
     He lost interest in the subject. Homophobes make me angry, but I wasn't in the mood for a fight.
     He moved on to the subject of parents not being "allowed" to spank their kids anymore.
     Of all the subjects on earth, why did he choose that one?
     I had been in a better place, where bullies don't exist, but now I was back in the real world.
     People who know me well are going to realize how "out of it" I was that day after reading the next sentence... I didn't argue with the homophobic, child-beating tow truck driver, just listened to his opinion and thanked him for the ride when it was over.
     Then, when I finally got home, I gave my glass top a spin, like "Inception," to make sure it wasn't all a dream.
     The top stopped spinning.
     I had survived.

Saturday, November 14, 2015

Look Closer

     My miracle drug worked for 26 years.
     After the wreck in 1995, I realized medication was more than a convenience to keep me from zoning out. It was a necessity if I wanted to drive again.
     The only time I stopped taking it after that was in 1998, before Ronnie was born. I didn't drive until it was safe to go on the meds again with fewer risks to him. The seizures came back again, but I didn't pass out.
     Ronnie was born as healthy as his older brothers. You cannot tell by their brains, beauty or brawn which was the no Depakote baby vs. the some Depakote baby vs. the more Depakote baby.
     The neurologists and my older sister were right when they told me in 1989 that I could still have children if I followed The Rules for women like me.
     After Ronnie was born, there were not so many rules because I stayed on Depakote and it continued to be my ticket to freedom.
     Sometimes, seizures go away on their own, but the only way to find out for sure is to go off your meds and wait. No neurologist encouraged me to do that.
     I knew my seizures would return, sooner or later. I just knew, but I expected it to be later and somehow, on my own terms. (Some ideas look really lame when you finally see them in writing, don't they?)
     "If we lived in a city where people don't drive, like New York, I might try it," is a typical comment I made in recent years. I'm not sure what fantasy world that vision came from.
     If I do stop my meds someday, it will probably be out of boredom when I'm too old to drive but still want to take trips on my own.
     There have been a lot of tests...MRIs, CAT scans, sleep studies, EEGs, sleep-deprived EEGs, three-day-long EEGs, etc., at places like Duke, George Washington University, Hershey Medical Center, D.C. and Bethesda. Pictures of my brain are scattered all over the place. There could even be a few in Japan.
     All the results were "normal," as far as I know, except for a tiny glitch in the left part of my hippocampus, detected in a 2011 MRI. My neurologist at the time said I was born that way, and I had no problem with that. Finally, I could point to a reason, as specific part of my brain that wasn't quite normal...a teeny-tiny spot.
Hippocampal Sclerosis 
     Big sis, however, said that didn't quite explain it. Of course, she was right.
     Four months ago, my new neurologist looked at the same MRI and gave me a clearer picture of what's going on in my head. He pointed to specific areas and showed me the difference between my healthy brain and my damaged brain.
     Damaged brain? WHAT? Please repeat, Doc. I didn't quite get that.
     Look closer, he said. "Do you see this part of your brain? In most people, it's spongy, but yours is a pancake."

     Hippocampus -  looks like a seahorse, affects memories, emotions, learning.

      My seahorse is as flat as a pancake on one side:-((((((((((((

     When did it happen? Did all the seizures do it? Was it the Depakote?
     He said I was probably born this way.
     I was born with a slightly damaged seahorse and never realized it? But that's impossible.
     If it was possible, what could it mean?
     Almost everything neurologists have told me about this disease has proven to be true, even when I didn't want it to be. However, this is an extremely difficult pill to swallow.
      It's much easier to believe something happened gradually over time than to consider it was there all along and I just didn't realize it.
     I told you this is a trippy disease.
     Every time I turn a corner, there's a new door waiting on the other side.

Monday, November 9, 2015

The First Crash

     I almost wasn't allowed to go with Ron to Okinawa. That was a scary day. We met with someone here in Virginia  before our planned departure date in the summer of 1993. She said I couldn't go because I was pregnant and have epilepsy.
    We had to wait until the next day to work it out because the doctors in Okinawa were asleep during our meeting. Our days and nights are the opposite of Japan's, which makes it seem even further away than it is.
     The following day, doctors at the Navy hospital on Okinawa told the woman saying no that it was okay for me to accompany Ron; they could take care of me. If they had refused, he would have spent a year there without us. Families stay for three years.
     So, I was given medical clearance and we lucked out by getting housing a few blocks away from the hospital on Camp Lester. We were surrounded by doctors and nurses and their families, and I didn't need to go to the hospital if a typhoon headed our way during my last trimester. That's what women who lived further away had to do, but I was already practically there.
    I didn't take Depakote again until after Jimi was born in late November, just before Thanksgiving. He was perfect. I couldn't sleep that first night in the hospital because I kept peeking at Jimi to make sure he was real and not just a dream.
This was taken two days before the crash. 
  My seizures came back when I stopped taking the medicine, but they were no worse than before. Only my close friends knew about it, but they understood that it didn't stop me from doing anything. I still faked my way through seizures in public because it was too much trouble to explain them.
     I still do that; it's a basic survival skill.
     My "Epilepsy Lite" story remained unedited.
     That changed when I was four months pregnant with my son, Tommy.
     It was a really, really scary day because I completely lost consciousness, and I was driving when it happened.
    There were no subtle warnings before that day, no signs that my seizures would be any different than before.
     I was driving home after leaving balloons in my husband's car for our anniversary.
     Jimi, almost two, was along for the ride, sitting in his car seat in the back.
    I felt an aura, that brief deja vu feeling before a seizure, and searched for a gate so I could drive onto the nearest military base. There was a housing area on the left side of the road, convenient because then I didn't need to cross three lanes of oncoming traffic. (We were in Japan, remember?) The last thing I recall is driving through the gate and being surprised there was no guard.
     I'm not sure if I woke up immediately after the accident, but I think I did. My first clear memory after the crash is being in the ambulance with Jimi somewhere beside me. A huge wave of relief flooded through me when I realized he wasn't hurt. Then I worried about Tommy, but not in a hysterical way. Usually, I'm calm after a seizure, almost dreamy, depending on the circumstances.
     It felt like he was okay, but I still needed the doctors to tell me.
     They did just that after examining me at the Navy hospital. Jimi passed inspection, too.
     I felt bad when Ron told me he didn't know if we were even alive until he arrived at the hospital. I felt even worse when I thought about the Happy Anniversary balloons waiting in his car.
I had a scary black eye for Halloween that year!
     My neurologist, who was also a neighbor and friend, insisted I restart Depakote that day.
     I resisted.
     He persisted.
     I continued to resist, worried about the side effects on Tommy.
     There had always been an aura, I argued, giving me time to sit down. Driving was out of the question; I knew that. So what was the danger if I had never fallen down before?
     I can be very stubborn sometimes.
     My neurologist thought I was making a poor decision and ordered a psych consult.
     There were two psychiatrists at that hospital, and I was best friends with the wife of one. (We were all neighbors and like family to each other because our own families were so far away.)
     The other psychiatrist determined I was sane enough to decide for myself whether to take the medicine.
     I was mad at my neurologist that day, as a doctor but not a person. That anger subsided the following month when I fell in the kitchen.
     There was no aura that time, or else it was so brief I didn't have time to think. I was standing by the refrigerator and then suddenly I wasn't. Instead, I was on the floor, looking up at Jimi who was saying, "Wake up, Mama. Get up."
     That might have been Ambulance Ride #2, I can't remember. We lived so close to the hospital, one of my friends could have taken me that day.
     My disease didn't knock me down like that -- on the floor -- for another 18 years when, once again, Jimi stood over me. Remember? I described it in an earlier post...The day his wisdom teeth came out when I woke up surprised to see "grown-up Jimi" standing over me instead of the toddler pictured above...
     Now, can you see what a trippy disease this is? Are you starting to understand?

Saturday, November 7, 2015

Epilepsy Lite

     Being diagnosed with epilepsy the summer after I graduated from UNC didn't stop me from doing something I never planned to do. That autumn, I moved seven hours away from my hometown to be closer to my boyfriend, Ron, in Pennsylvania.
     When I was a little girl, I gazed out over my back yard, past the pastures and woods to another hill, far away but close enough to see it was open, no house on it. That's where I was planning to live, where I could wave at my parents from my front yard after tucking my children in their beds at night.
     Sometimes, I still think about that other life and almost fall asleep from boredom.
     The Depakote continued to work and my secret was safe. Ron stood by me when I was diagnosed, and my health wasn't an issue when we married in 1990. I followed the plan outlined by my neurologist when we decided it was time to have kids.
     Depakote can cause serious birth defects, and the worst damage occurs in the first three months. That means women like me can't have accidental pregnancies without risking harm to our children. We must be extremely careful, using reliable birth control when on meds.
     So, I had to tell my coworkers, just a few of them, when I stopped taking Depakote in 1992 so I could plan a pregnancy without hurting my baby. Some women with epilepsy don't have a choice; I'm lucky.
This is Ron with my crashed car. That expression on his face!
   That was the first time I had to explain myself, just in case.
    When I say the word, "seizure," there is a moment of panic on the other person's face. I know what they are thinking; it's the natural reaction:  What would I do if this person had a seizure, here, in front of me?
    That's how my "Epilepsy Lite" story came to be. I don't use the "E" word, not ever! I simply explain that my seizures are so mild that most people don't even notice. What should they do if it is noticeable? If I'm staring into space for a long time? Nothing, really.
     When I told this story to my coworkers in 1992,there was no reason to explain further. I could still drive  because I had never passed out; I wasn't that out of it during a seizure.
     There was no reason to think I would get worse because I had the good kind of epilepsy. There was nothing to worry about, in my mind, but plenty of reasons to be careful.
     That changed on October 27, 1995, when I drove my car into a house on Okinawa.

Thursday, November 5, 2015

Total Weirdness

     Charlie is back today. It's time to pick up where I left off after my diagnosis at the age of 22, I know that, but I woke up this morning feeling weird again. Yes, that kind of weird.
     I couldn't tell for sure if it was a seizure or not, because the mental state between sleeping and waking up is so similar to them. I forced myself to get up, as a sort of test. Then, I walked into the bathroom and crouched down on the floor for a few seconds.
     Weird, huh?
     I have no idea why I did that, or maybe I do.
     A behaviorist must look at the evidence. What did my actions say? What purpose did they serve?Why did I crouch down on the same little carpet where one of my worst seizures took place in July, the one that scared me so much at the beginning that I wanted my mother.
     Me, a grown woman, wanting my mother!
     Is it because one of my earliest and best childhood memories involves me sunbathing on a little pink rug similar to the one in my bathroom. Do I crouch down on the rug seeking comfort, remembering how close my mother was that day I watched my fat, red crayon get all "bendy" in the sun?
     Because getting out of bed, heading into the bathroom and snuggling on a bath mat isn't my normal routine, yes, I'd say it was a seizure, probably one that started in my sleep. So it counts.
     Now my driving date resets:  May 5, 2015. That was my 71st seizure this year.
     I might have forgotten my meds yesterday morning, so it could be my fault. Well, it's always my fault because my brain is doing it, right? I'm responsible for my own behavior and yesterday, I might have forgotten my medicine.
     My current method of making sure I don't forget is turning the bottles upside down at night when I take my meds and then right-side up in the morning when I do the same. Last night, when I took them, the bottles were still in the "bedtime position," so I had to ask myself:
     a) Did I forget to take them in the morning?
     b) Did I already take them earlier in the evening and forget to flip the bottles?
     c) Did I take them in the morning and forget to flip the bottles?
     Either way, it was a gamble. I decided to take my meds and risk doubling up.
     So, I'm not sure if my goofy behavior this morning was due to low drug levels in my blood from forgetting to take my meds yesterday or not...It might have been.
     These are the murky waters I'm navigating.
     Judging (and that's what it is) from my behavior, it appears I might have a mental disorder.
     A neurologist diagnosed epilepsy.
     Inside, all I can see is me.
     What do you see?

Wednesday, November 4, 2015

The Longest Seizure

 December, 2013

     That morning was even crazier than usual at my house. I drove my oldest son, Jimi, to get his wisdom teeth removed, hung out in the waiting room during the surgery and drove him home through a really nasty rainstorm.
     I felt a little feverish, but it was cold/flu season, and everyone seemed to have something. I wasn't concerned about it. We made it home, and I started playing nurse to Jimi, who was still out-of-it from the meds.
      There was a man installing a new front door for us that morning, and we put on quite a show for him.
     Jimi's mouth was packed with bloody gauze; I tried not to look at it. I'm not prissy about most things, but my first reaction when I see lots of blood is to look away and regain my composure, so that's what I did.
      The oral surgeon had suggested tea bags to soothe Jimi's gums when the meds started to wear off. I went into the kitchen and bent over to look for tea on the bottom shelf of the lazy Susan when suddenly, I felt faint....a little bit more than faint.
     But THAT hadn't happened in 15 years. It couldn't be. It only happened when I wasn't taking medicine, so what was going on?
     I had tunnel vision. Damn!
     Trying to reach the couch about 10 steps away, I headed for the living room but only made it halfway there. I woke up on the floor with ambulance lights shining through the window.
     It took a moment for me to recognize the man standing over me.
     I was too busy looking around for my children. Were they okay? Who was watching them while I was zoned out on the floor? Where were they?
In my mind, they were still little boys.

     I looked at the tall, young man who was trying to calm me down, the one calling me, "Mama." It was Jimi, of course, and when I realized who he was, a sense of pure bliss spread throughout me.
     That grown-up man was my son, my little Jimi! The feeling was incredible; he looked beautiful to me, perfect. I wanted to congratulate myself on a job well done.
     Panic set in again when I remembered the flashing red lights outside.
     Why was an ambulance here? It was only a seizure, right? How did the ambulance get to our house so fast? It didn't make sense.
     I kept asking the same questions over and over again, not remembering the answers, confused about why there was an ambulance in my driveway and people coming inside. Grown-up Jimi explained that I was out for longer than a few seconds this time.
     Evidently, I hit the floor with a loud thud and stayed there on my side, staring into space while Jimi and the guy installing our door discussed whether to call an ambulance. I was probably seizing for 10 minutes or so. It's hard to say. The longer you seize, the more it fries your brain.
    It felt to me like only a few seconds had passed between the time I was looking for those tea bags in the cabinet and waking up on the floor.
    Jimi's mouth was still packed with bloody cotton, so it wasn't easy to understand what he was saying. The guy working on our door probably thought we were both crazy, with me lying on the floor staring into space and Jimi calmly saying, "Oh, it's only a seizure. She does this sometimes."
    My brain tripped from past to present on Ambulance Ride #2. When someone asked a question, I had to "bring myself back" to answer. The seizure was over, but my mind was trying to find it's way back to now. That's the best way I can explain it. This state of mind is postictal confusion.
     I had not completely returned from there.
     This ambulance ride wasn't scary like the first one. There was no car accident this time. I didn't worry about why it happened or what it could mean; my body was tired, but my brain was in a happy place.
     The ambulance took me to one of those emergency places that isn't really a hospital and doctors did the usual blood tests. They covered me in a warm blanket, which made me want to curl up and sleep.
     People began calling and texting me, and I felt even better. My husband showed up, and I was released. They gave me a pregnancy test. I guess they have to do that, but still, it was funny.
     My neurologist said it was probably a fluke, a breakthrough seizure (when you are on meds but have a seizure anyway) caused by the fever and too many things stressing me out at once. I didn't need to increase my Depakote or contact the DMV. Another seizure, however, would mean no driving for six months.
     It didn't happen, and I didn't worry about it. Really, I didn't.
     My rose-tinted glasses stayed firmly in place.
     The ambulance had come in the middle of the day when most of my neighbors were at work, so my secret was safe.

Monday, November 2, 2015

The Rude Awakening

     I was diagnosed with epilepsy in the summer of 1989, just after college graduation. My sister, Grace, put the pieces together while she was still in medical school. She sent me to a neurologist and he knew what I had without even doing a test: temporal lobe epilepsy.
     My "spells" were actually a type of seizure deep within the part of my brain where dreams and memories are stored. It made sense to me because that's where my "spells" took me.
     The possibility that my lapses in consciousness were seizures had never occurred to me, ever. I wasn't scared because Grace said it was no big deal. She's usually right.
     This time, I had to believe her. 
     It was the only way for me.
     I made myself believe that it probably wouldn't worsen, that my seizures might never spread to the rest of my brain, causing me to fall to the floor with convulsions. I forced that possibility to a dark, dusty corner of my mind, where it lingers.
     In other words, I convinced myself that I have Epilepsy Lite and have made up my own rules on how to live with it. So far, it has worked, except for a few minor bumps along the way.

     So, 1989 was the year doctors started taking pictures of my brain, gluing wires to my scalp and flashing lights in my face, trying to "catch me having a seizure" or find an explanation for the storms in my head.
     Everything was normal, but still I had epilepsy. That's how it is diagnosed sometimes. (If it walks like a duck and talks like a duck...) All my tests were normal until 2011, when technology finally caught up with my brain. 
     It was obvious to me that I was in good company with neurologists because they were fascinated rather than bored when I  described the extraordinary feelings I had during my seizures. They were even more interested in those symptoms, in trying to get a very specific description of every sensation.
    Some of the questions they asked were pretty entertaining, too. I'm used to it by now, but at the time they seemed bizarre.
     "Do you ever smell anything odd before a seizure, something like this?" That's a typical question, then a bottle of clove oil is held under my nose. Neurologists are also likely to have patients take off their shoes so they can touch the bottom of their feet and check for a specific reflex.
     I wasn't expecting brain doctors to play with my feet.
     So, yes, I trust neurologists because they seem to be as weird as I am. Why wouldn't they understand me?
     Even the 2011 MRI can't explain why I'm this way. My mother wasn't sick when she was pregnant; no one dropped me on my head. It's just there, and probably has been as long as I have been me.
    That's one of the reasons I don't want it taken out of me.
    There was no discussion about whether to go on medication; it's what you do when doctors find out there are electrical storms in your brain. Storms cause damage, and damage leads to more storms and more damage...In other words, my "spells" were more powerful than I thought they were.
     My doctor didn't tell me any particular rules to follow. I could do anything I wanted except become a pilot, which I never wanted to do anyway. 
     The medicine didn't sound too awful, either. There were better drugs with fewer side effects that wouldn't make me feel dopey all the time like the "old drugs" of last resort.
     My seizures stopped when I started taking Tegretol, but then I broke out in a rash. Still, I gave it another try when the rash went away.
     It made me really sick the second time, and I had to go to the emergency room, but not in an ambulance. I tried the next drug, Depakote, and it worked for 26 years.

June 23, 2015

     I woke up and did what I usually do in the morning..feeding the cat, boiling water for coffee, etc. It was a nice day, so I walked out to my back yard and sat on the warm sidewalk, listening to music.
    My mind started wandering back to first grade, like it often does, when I hear Stevie Wonder's "You Are the Sunshine of My Life." That's what was playing.
     I remembered sitting at my desk in Mrs. Tyson's class with a smile on my face while the little boy next to me sang that song. He was the cutest, sweetest boy in class, and he was singing to me! I was so happy at that moment, I wanted to fly out the classroom window and dance in the sunshine.............I could feel the smile on my face.................................................I was there again and then........somewhere else.....I remembered this place, too, but where was I? ...........
     That morning was no different than any other day when I sit outside, listen to music and let my mind wander. For some reason, I wish I knew why, it went too far that day and didn't come back until I woke up with my face on the sidewalk.