Wednesday, December 9, 2015

Drug Holiday

     I'm on a drug holiday.
     It started yesterday, the same day I finally began Christmas shopping.
     I'm going to stay on this holiday as long as I can. Forever would be nice, but that probably won't happen.
     A drug holiday is when someone like me stops taking her meds. 
     Funny, isn't it? I laughed the first time a doctor said it to me, and quickly added it to my vocabulary.
     My doctor didn't laugh when I told him about my upcoming vacation. He was surprised and not quite sure how to react, so I made a quick escape.
     My chemical seat-belt was too tight, and it was trapping me inside.
     I hadn't slept well in four months, so I unbuckled to rest.

Friday, December 4, 2015

Sleepless in Springfield

     I woke up at 4 a.m. again. That's been happening since mid-August. Sleep is something I work for, like a nighttime job.
     Two or three Benadryl tabs do the trick for falling asleep but then I wake up a few hours later when they wear off. Sometimes, I take another one or two around  3 a.m., but they only work until around six or seven at the latest.
      Insomnia has been my nighttime companion for as long as I can remember, but my new seizure meds have made it worse. My mind wakes up "too busy" to go back to sleep, hours before the new day begins.
      Even as a little girl, I woke up at least once or twice during the night. I was the last one asleep at pajama parties, the one tip-toeing down the hall to use the dorm bathroom in college.
     Everyone tells me to nap. I can't.
     Over the years, I have made friends with other insomniacs and nighttime animals like foxes and possums and fruit bats; it's lonely being awake when everyone else is asleep.
     The Internet makes it better and worse at the same time.
     Facebook and Instagram wake up my mind too much because I start to think about people I miss, but Pinterest helps.
     Stephen King keeps me company in bed sometimes. His stories don't give me bad dreams, maybe even the opposite because I really get into his ideas on the mind and religion.
     I try to stay in bed when I can't sleep but sometimes get up and creep around in the dark like a ghost lady until I feel sleepy again.
     I don't turn on the lights because that makes it worse.
     Prescription sleeping pills are too strong. I tried them about 15 years ago when my sons were little, but it was a disaster. The pills knocked me out while I was still on the couch, and I had to wake myself back up to get the boys into bed.
     Ambien gave me nightmares and I flushed the pills down the toilet, like a spooky potion I didn't want in my house.
    Neurologists say it isn't healthy to interrupt my normal sleep patterns with strong pills like that anyway. I had a sleeping test done a few years ago where they glued wires on my head and had me sleep in a pretend bedroom.
     It was the best night's sleep I had in years. The attendant had to bang on the door the next morning to wake me up so he could go home. I think I was taking Trazodone for sleep at the time, which made me feel kinda hungover every morning.
    Trazodone is an "old school" antidepressant doctors prescribe for insomnia because it makes people sleepy right after taking it. My sons called it my "loopy pill" because I sometimes said goofy stuff after taking it at night..funny things we still laugh about.
     My doctor prescribed Elavil for the same reason at the end of October, but I've already stopped taking it because I felt slow during the day and wasn't getting anything done except laundry and dishes. It made my stomach hurt, too, and I had to go to another doctor for that.
     I wish doctors considered sleep to be more important than controlling seizures.
     Then I could be free to just be me, and maybe sleep past 4 a.m. again.

     I took my label off, by the way.
     Nobody wants to talk about epilepsy.
     Nobody wants to see or think about it.
     I would rather keep a dangerous secret than see the look in other people's eyes when they judge me as being defective.

Thursday, December 3, 2015

50 Shades of Epilepsy

     Nobody "gets" my art even though the message is pathetically obvious. It's weird, like most things I come up with on my own, so I keep my finished works upstairs in a room where no one can see and make fun of them.
     I'm fascinated with words, the way they look and sound and combine to start wars and love affairs and political scandals.
     They are beautiful and powerful, even the small ones, and I like to play with them all. I rhyme by accident sometimes and could probably talk in rhymes, like Dr. Seuss, if I really tried, especially if I made up my own words.
      That's something else I like to do, so much in fact that my sons now do it, too. Yesterday, Tommy created the word "trafficky" while driving me to the grocery store.
      Springfield is a very trafficky place to call home;-)
 Rebel Speducator is a nickname I gave myself in 2011, when I wanted to write about education without getting canned as a special education teacher.
     The Speducator part was easy. Then, I added Rebel as an inside joke. I'm from North Carolina and wanted to toy with the Confederate Rebel image, the idea that people from southern states are racist. Part of my rebellion is against institutional racism, so there's the punchline.
    The first mannequin I decorated is in a neurologist's office in D.C. He treated me during the time I created my pen name and definitely "got" what I was trying to say.
     I will write more about him later because he deserves an entire blog post, maybe two.  Dr. B gave me a new label that made me feel strong, almost invincible.
50 Shades of Cat
     He called me a survivor.
    The mannequin I gave Dr. B is covered with print-outs of prescription drug information. I copied the idea from an art studio with painted mannequins in the window.
     I looked at all the stacks of paper describing things drugs could be doing to my body and decided to strip them of their power.
     Liver damage, hair loss, weight gain, indigestion, insomnia, loss of appetite, severe rash that makes your skin fall off, diarrhea, drowsiness, nausea, constipation, sensitivity to sunlight, dizziness, ulcers, double vision...All of it ripped up and redistributed on new, perfect bodies, the way I say.
     It matters how I tear the words and where I place them. Some words/phrases belong near the heart; others belong on the bottom. I rip up books and notes, too.
     There are plenty of the latter to choose from because I write all the time. (It's a trait that goes well with being a reporter but not so well with teaching. More to come on that subject, too.)
     50 Shades of Cat was the easiest project because I didn't need to look at the words very much. They were sex words and phrases that look comical out of context. Not paying attention to the words allowed me to relax more and feel the paste and paper on my fingers.
     Could my desire to rip up words and glue them to dolls be connected to my damaged brain?
     Maybe. There's no way to know for sure but, yes, I think it is.

Wednesday, December 2, 2015

Haunted

     I had a seizure a few minutes ago when I began writing. Yesterday, I started having one immediately after typing the words "Henry Siler." Before I could write the next word, there I was, in first grade again.
     And no, nothing awful ever happened to me at that school or at my middle and high schools. I never had a "bad" teacher, and I wasn't bullied by mean kids. These unplanned trips in time don't take me back to hidden, dark places.
     If they did, I wouldn't  be writing about it here.
     The moments I revisit are -- like my seizures -- scary, confusing and sometimes embarrassing. However, they are also very familiar and almost comforting -- like my seizures.
     I don't do any of it on purpose. If I could, I would do it in a much different way.


     One of most confusing days of first grade was when we had  Show-and-Tell right after Christmas Break.
     Something didn't make sense to me about the other kids' toys. A really, really poor girl brought in her new doll, a cheap, hollow version of Barbie.
     I couldn't understand why Santa brought her a fake Barbie instead of the real one from T.V.
     She was quiet and never got into trouble in class the way I did, so why did I get better toys? Why did a naughty little chatterbox like me get dolls with soft skin and hair when she had to play with cheap plastic?
     Where was that magical, generous person who made everything okay, at least one morning out of the year?
     I learned the answer during first grade by simply looking around me at the way some of my classmates were dressed, how they smelled and the tangles in their hair...
     And it bothered me, a lot. 

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.
   

2009

     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 crazy..in 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

Wrecked

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 flat..like 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.


Saturday, October 31, 2015

The Devil Made Me Do It

     I majored in journalism at UNC and took all the requirements for psychology, too. Journalism was easy because I had been writing for my hometown newspaper since my junior year of high school.
     Feature stories are my favorite, but I have a knack for being where the action is, so I report news, too. Until a few years ago, I never focused on one particular issue.
     After recording page after page of messy notes, I go home and write as soon possible while everything is still fresh on my mind. If I wait too long, it isn't the same and my writing suffers. I'll get back to that later.
    Throughout college, I continued to have "spells," maybe four or five or three or six each month, in no predictable pattern but usually clustered together. There was no change in how long they lasted or the weirdness of the entire experience. It was just something that happened to me. I didn't sit around in my dorm room trying to figure myself out because it didn't stopping me from doing anything. I was too busy out there living!
     My roommates knew because sometimes it happened when I was driving. My instincts told me to slow down or even try pull over, but that wasn't usually possible. By the time I changed lanes or whatever, it had passed and I was completely, mentally back in my car in Chapel Hill again.
     When I'm driving, I try incredibly hard to NOT think about some things, like what I dreamed about the night before or where a song on the radio is taking me in my memory. If I suddenly get a deja vu feeling about ANYTHING, I force myself to snap out of it right away before I get lost in there. (That was a hint.) Letting my mind wander can be dangerous when I'm behind the wheel because I can't always get it back again. 
     Psychology classes were much more interesting than journalism, by the way, especially abnormal psych and childhood development. I was fascinated with Freud and appalled by Skinner.
     My older sister, Grace, gave me a DSM-III for Christmas one year. (It's the book used to diagnose mental illnesses.) I had memorized most of it by the time I graduated but still couldn't find an explanation for what was going on in my head.
     I wasn't even sure if I wanted it to stop happening, but I needed to solve the mystery of what it was to ease my worries that someday one of my trips could take me away to a place I couldn't come back from.
     In my searching for self-diagnosis, I determined that my "spells" were not panic attacks. There's a sense of impending doom in the beginning, sometimes, but then I enjoy the trip...or at least I think I do, from what I can remember.
     When I come back, my body is in worse shape but my mood is elevated. I don't care that I'm sweaty and tired because somewhere deep inside me, I know it was worth it.
     I studied everything I could about schizophrenia and ruled it out, too. At the time, I believed it to be an illness one could  "come down with" in their twenties, like a bad cold that never goes away. It's more complicated than that.
     If what I have described so far isn't mental illness, what's left?

     Halloween Hint:   For centuries, people like me were thought to be possessed by The Devil. Exorcists have tried to force Him out of us, but it doesn't work.
     The only way to get it out of us is to go deep inside our brains and cut it out.
     Do you know what I am yet?
     I'll tell you tomorrow.

Friday, October 30, 2015

Stop and Smell the...

   


     Today I am Charlie Gordon. I tried to write about college this afternoon but couldn't quite find a way to describe how different Chapel Hill is from my hometown. They're less than 30 miles apart, but it was and still is a different world...in a good way.
     I'm not going there tonight because, like I said, Charlie has taken over and is experiencing the regression phase of the experiment. 
     My November 1 deadline is going to pass, but there is no editor breathing down my neck. I wanted to Come Out that day because people like me will be in the spotlight next month even though most of us are ashamed to tell anyone. (Tonight's hint.)
    I'm still peeking out from behind the closet door, but at least it's open now.
    Daniel Keys had some interesting ideas about inclusion, according to Wikipedia. I'm too much like Charlie tonight to properly research and delve further into them, but you might want to check it out for yourself sometime. 
    

Thursday, October 29, 2015

Spells


  
     I was 16 the first time it happened, coming back from my daily run, almost to my driveway. I stopped running and walked the rest of the way. Then I told my mother.
     She listened with that "worried" look on her face while I tried to put the experience into words. It's extremely difficult to do that, even today, and is for most people like me.
     My mother said I looked pale and sweatier than I usually did after running two miles.
     Neither one of us took it very seriously until it happened again and again and again and..Well, you get the idea.
     Only my family and my best friends knew about these weird little (less than a minute long, usually) episodes. I didn't tell anyone else because they didn't slow me down at all and because I was afraid people would think I was making it up to get attention. 
     Now, I don't tell people because I don't want them to feel sorry for me. There is no reason to do that. The only thing my label has taken away from me is my driver's license. (That's a huge clue and the only one today.) 
     Back to high school...My mother and I tried to solve the mystery together, keeping track of when it happened and what I was doing at the time. There was no pattern, but every three or four weeks, it happened again in clusters. We started calling them "dizzy spells" and later shortened the name to "spells."
      My diaries from those years have notes in them like this:
                                                     Monday,  2 spells
                                                     Tuesday,  1 spell
                                                     Friday,     3 spells

     Skipping ahead a few pages to the next month, there are similar notes. "Spells" every three or four weeks, or sometimes five or six. If there were several in one day, I felt tired and confused until bedtime but not so much that I couldn't finish my homework or go running. I kept getting straight A's on my report cards.
      Sometimes I was in the middle of a dream or sitting in class and WHAM, it would appear and take me somewhere else in my mind, a familiar place that was frightening at first but then wonderful..beyond wonderful. I didn't always want to let go and come back.
     Most of the time, no one noticed my little breaks from reality; I was really good at hiding them and still am even though it's harder now. People around me talk and talk and talk while I pretend to listen. In reality, I don't understanding a word they are saying. 
     I became an expert at pretending to be normal. That's a basic survival skill in high school.
     My mother made an appointment with our family doctor. He couldn't figure out what was going on and no one else could for six years. I'm glad; I wasn't ready to know what I am.
     Coming up...Hello Chapel Hill, it's time for college!

Wednesday, October 28, 2015

I'm Coming Out

     My label is visible now, but only if you know where to look.



     That's me in first grade. I probably had it then but didn't know, thank God.
     Sometimes I relive those first few days of school, away from my mother, surrounded by children who were so different from me. We were all scared but not for very long because our teacher was so nice.
     You're probably thinking, "Oh, I think about those days, too, sometimes. Big deal."
     That's what I want you to think.
     I also want you to stop and remember the way it felt when your mind suddenly drifted back to first grade. Was it a nice little trip? (That's a BIG clue, but I only have a few days to tell this part of the story.)
     Elementary school was fun most of the time. I'll get back to that later.
     Middle school was complicated, especially when the "gifted program" arrived in seventh grade. Being in that class sometimes brought out the devil in me. (Another clue)
     My teacher caught me doing something one day -- I can't remember what -- and called me an "instigator." When I looked the word up in a dictionary, it didn't sound so bad.
     I AM an instigator..but that's not my label.
     It means "troublemaker," by the way. It's fun and I'm very good at it, so consider yourself warned. You can stop reading at any time, but then you would miss out on the high school days...