Thursday, March 31, 2016

Good Riddance

     My seizure tracker is telling the real story to me this morning; now I realize that I had a seizure on Day 2 of my incarceration, not Day 3 as I had remembered it. The truth is right there on film, my kind of film, a video of me seizing at 10:42 a.m. and describing what was happening to the attendant.
     "I'm having one now," I began, then sat and stared for 37 seconds before swallowing and blinking a couple of times. "Okay, now I'm getting sweaty, so I know it's in a different stage, the seizure." 
     I blinked my eyes several times and said, "I'm hearing the dialogue (on the T.V.) more now." Then, I sat up and tossed the blanket and sheet away, said, "I'm getting all hot." 
     "It's fading now," was my description as I fell back onto the pillow, looked around, tired. "See? Now, it feels like it's over." The last image is of my bare feet sticking out of the covers, red toenails in desperate need of a re-polishing.
      The event was a typical seizure for me, like hundreds before; it lasted one minute, 19 seconds. Now that I realize this happened on Day 2 rather than Day 3, I have a much better understanding of my growing bewilderment and anger at not being allowed to go home.
     My brain had finally done what it refused to do for 27 years, seize during an EEG, yet I still was not being released. For reasons beyond my comprehension, I had to endure another day/night in that wiggling bed with people watching me at all times, wires on my head, forbidden to cross the line that separated my room from the rest of the world.
     I don't remember much of that night or the next morning; it was more of the same. No meds, no therapy dog, just music on my cell phone and medical social workers and nurses to keep me company.
     It was sometime during that final 24 hours that I made friends with the pouting woman from my first night's stay. She could see my pain all around me, so I listened while she told me about hers, where it came from and how it happened. It was a therapeutic experience for both of us, I believe.
    The wires were taken off on Day 3 by the same sweet man who put them on that first day. That's when I was allowed to take a shower and try to transform myself into something that resembled a human being again.
     Unlike the meds to control seizures, the glue used to attach EEG wires has come a long way since 1989. The old-school glue was like yellow cement and left me with chunks of what looked like a severe case of dandruff for days after. 
     This glue resembled hair gel that has dried out and become too thick, so I didn't really mind that it was still scattered around my curls after the shower; it gave my hair more body. It was such a relief to smell like myself again and not the stinky woman trapped in a hospital bed.
     As I started to get dressed in the bathroom, I felt my aura, the early warning that protects me from what might follow during a seizure. The video begins with me back in the hospital bed, talking to my husband about it.
     "It's just mild," I said. "As soon as I was in the shower, I could feel that I was closer to having a seizure because I was by myself."
     "Yep," he said.
     "The water was running over me...I could feel them closer all of the sudden, than when I'm sitting here. Yeah, It's a seizure; now I'm getting sweaty. Something's going on in my ears," I said, twirling my index finger in circles by my left ear.
      "I can feel I'm getting sweaty all down here," I said, pointing to the lower half of my body. I stare at the camera, blink my eyes, smile and say, "That's it. That was a seizure." The last image is of my husband at the foot of my bed, dressed in his suit for his job at the Pentagon.
     Things probably would not have gotten so ugly with the psychiatrist if Ron had stayed, but neither would I feel so empowered right now, knowing I figured out how to get out of there by myself. My only regret is that my son, Tommy, was placed right in the middle of it.
     In that last video, I'm dressed in my real clothes, so it was before the shower that I decided it was time to put my big girl pants back on and say goodbye to the hospital gown that left me overexposed in all the wrong places.
     I was fully prepared to spit in the face of Walter Reed hospital policy for reasons I've already explained, in detail. Very little respect had been shown to me nor to my family, so why should I show any back?
     The neurologist approved my release. It wasn't my epileptologist, the doctor who admitted me, but still, this doctor was part of the team in charge of deciding whether it was okay for me to go home. Depakote sprinkles would be my new anticonvulsant medication, a different version of the same one that worked for 26 years.
      For some reason, I had assumed it was for babies or people who couldn't swallow pills. In reality, they are capsules that can be taken either way. I swallow them whole, like any other pill, but could also mix them with food or water.
     With one exception, my seizures stopped once the sprinkle version of my old standby was back in my system.
     Still, there I sat, waiting for my release, with a closed door separating me from freedom. I could hear doctors, nurses and other hospital staff coming and going, carrying on conversations...LIVING...while I was stuck in that room.
     I decided to open the door and sit right on the edge of my cage. Let the other patients and their family members wonder what was going on with that woman not being allowed to go into the hallway.
     It wasn't long before the psychiatric team showed up to explain it to me. Dr. P, the psychiatrist in charge of my care, had a different plan for me than my neurology team. However, he needed one little thing from me in order for his plan to begin:  my signature.
     Dr. P was recommending I not be released that day but rather transferred to another unit where he promised I would be much more comfortable. The beds wouldn't wiggle, and something tells me the drugs would be strong and plentiful in his unit...Interesting, mind-altering drugs to "control" my behavior.
     I told him"No," and then he got mad. Authority figures hate that word almost as much as I love saying it to them. It's fun watching them lose their composure, for a change, at that one little word.
     His anger was obvious, because he started closing in on me, raising his voice in a very "unprofessional" manner. This time, I pointed out his  behavior, asked if he could back away a bit from me as I sat in a hospital bed with at least four people standing around her, including my son, Tommy.
     "Why don't I call your husband and see what he has to say about this, if he thinks you are ready to be released?" was his comeback.
     "How does he know my state of mind at this moment?" I asked. "He's at work."
     What I wanted to say but didn't...held my tongue for once in my life...was, "Who are you going to suggest calling next, my Daddy?"
     That's when Dr. P sank to his all-time low in the management of my care. It's the reason my husband and I visited his office the following Monday and officially broke up with military behavioral health once and for all...Kissed it goodbye and said, Good Riddance.
     He dared to look over at my 20-year-old son and place the burden on him of deciding whether I was sane enough to be released from the hospital.  I will never, ever forget the look in Tommy's eyes as he looked from the doctor to me.
     At that point, I asked if Tommy could be excused from the room, that I did not think it was the proper conversation to be having in front of him. What I wanted to do was remove the useless I.V. needles still taped to my arm and jam them into Dr. P's neck.
     It wasn't an aggressive side-effect of Fycompa making me have those thoughts but the rage any mother in my situation would feel at seeing her own son placed in such an absurd position.
     "I have plenty of other options outside of this hospital, for behavioral care," I pointed out to him. He considered that for a moment, the fact that military dependents do not hafta go to military doctors for treatment, that Walter Reed Medical Center is not the only hospital on planet Earth.
     Still, Dr. P was desperate to remain in charge, for some reason. If I didn't want to be there any longer and preferred someone in private practice or another military hospital, he could choose the best facility for me, he said, and have me transferred there.
     "How would that speed up my recovery in any way?" I countered.
     He didn't have an answer for that one, but still I was not released.
     For me, it was only a matter of who to call first, once they left the room.
     My favorite lawyer would surely be interested in my predicament but it can take a while to reach him because he's the Big One, usually busy passing laws in Richmond.
     So instead, I called my college roommate, Christy, who lives about 10 miles away from me in Falls Church. I told her I didn't need her to do anything for me except listen. Then, I began to describe my predicament and how I had been cleared by the neurology team to go home but was being held hostage by one stubborn psychiatrist who for some reason wanted me to sign myself over to his care.
     As many times as possible, I used the phrase, "I feel like I'm being denied my healthcare choices." With every new story I told her, every humiliation and disappointment, I added that phrase, "I feel like I'm being denied my healthcare choices."
     She listened while the psychiatrist's assistant stood by eavesdropping and taking notes. As I said in my original post about that day, it wasn't long at all before Tommy and I were heading back home, down 495 South, in my Mustang.
     The funny part is, my release went through so quickly they almost forgot to remove those useless I.V. needles from my arm.

Wednesday, March 30, 2016

Betrayed, again

     On the other side of my hospital room door, there was someone my doctors took much more seriously than me, their patient. They took him so much more seriously that he already knew why I wasn't receiving any of my meds, not even the anti-inflammatory I've taken for decades.
     It's as if the doctors chose to treat me like a child and my husband like he was my daddy.
     Finally, someone explained to me that all meds had been discontinued out of concern over possible interactions that could be taking place between them and the wacko drug, Fycompa.
     "I told them it was a bad plan, that you're smart enough to figure out something isn't right, but they wouldn't listen," my husband said, once the cat was out of the bag.
     I felt even more betrayed by my doctors.
     After coming to them in a manic, delusional state and placing my complete trust in them, no one had bothered to explain my own treatment plan. Instead, they told my husband and then refused to listen when he warned them of the storm to come once I figured things out on my own.
     My respect for them was completely obliterated by this latest bit of info.
     Fycompa had killed my appetite weeks earlier, but I stopped trying eat after finding out the dirty trick my doctors had played on me. Pushing the tray away without a glance, I ordered a steady supply of  sugary, caffeinated soda.
      If my purse hadn't been in lock-up, I would've lit up a cigarette in the bathroom because I knew they weren't going to kick me out for it. I was their prisoner at that point, something to be studied, like a rat in a cage.
     My plan to use the forced hospital stay as a perfect opportunity to quit smoking went out the window because I realized nothing else would be relieving my pain any time soon.
     The drug was no longer compelling me to chat, so I spoke only when I had to. The "eager to please for early release" patient was permanently gone.
     Unfortunately, my mother called at my absolute lowest point, when my own doctors had come the closest anyone ever has to breaking my spirit. I was laying there, waiting for the seizure that would set me free from the room of torture and pain, when my cell phone rang and I saw her beautiful face on the screen.
       My voice was monotone when I answered.
      "How are you?" she asked. I could feel her worry through the phone and her desperate need to hear me say that everything was better.
      Instead, I told her the truth.
      It's the most horrible thing I've ever said to her. I described exactly how I felt at that moment in time. My voice was as dead as I felt inside when I delivered my message.
      "Mama, I'm so desperate to get out of this place, I would let every man on this hall come in here and take turns with me if it would mean I could walk out that door.
      Believe me when I say this, Mama, I wouldn't feel a thing while they did it."

Tuesday, March 29, 2016

Day Two in the VIP Room from Hell

     By the second day, I was much closer to being myself again, which was a big relief in terms of  my fear that the drug had taken me to places that would leave permanent scars on my personality.
     That doesn't mean I became the model patient, however, because the return to reality brought a lot of anger to the surface about my situation and how I got there. Every time my frustration began to show, I had to consciously tone it down or else the psychiatric team would have an excuse for extending my confinement period.
     I could express my anger but only in the ways a rational, sane person would while trapped in a room, semi-clothed, with wires attached to her head and someone watching her every move. My volume needed to remain low.
    It was essential that Pam stay in charge, the one who knows the right shoes to wear to interviews so she'll land the job. The Rebel needed to keep her mouth shut, or at least that was my attitude as I headed into Day 2.
     The rage I felt at realizing I had missed Election Day in Virginia wasn't worth mentioning because I doubt the medical staff could relate to my insistence on voting in every election, even if I don't like the choices on the ballot. There is always one candidate I believe will do less harm than the other, so I pick her or him in the privacy of the voting booth and hope for better choices next time.
     Fycompa robbed me of my opportunity to vote in the Virginia primary; but I held in my anger. Doing so is supposed to lower my seizure threshold, so becoming an internal raging inferno would be a good thing, I figured, as long as I didn't let the inner rage leak out where someone might notice.
     Remember, their goal was to "catch" a seizure on the EEG machine. Once that happened, I thought I would be free to go home.
     There was a really helpful nurse who deserves a mention here. A small woman, like me, she somehow blocked me, physically, at one point, when she thought I was going to make a run for it. Once I explained I was only going to the bathroom, she moved.
     I didn't event want to punch her when she calmly stood between me and the door, which shows how good she was at her job.
     She also talked me into eating vegetables that first night, when I still trusted the people taking care of me and was trying to be "a good patient" for early release. I'll give her extra points for that, especially because they were some version of  beans that were no shade I recognized...not green, not yellow, just blah.
     To test whether I was being delusional when I thought she resembled a certain actress, I asked her, "Do people ever say you look like someone famous...and who?"
     "Yeah. I get Emma Stone sometimes," she said.
     "Yes, you do! Oh God, take it as a compliment; she's gorgeous," I told her.
     I'm sure it made things a bit easier on my son, Tommy, to see a kind nurse who resembled his favorite actress taking care of his loony mom. When they finally released me the following day, he commented on the way home that he suddenly realized women in uniform are kinda sexy.
     My frustration mounted once I realized there was no set time or day for my release. Plus, if having a seizure during an EEG was my ticket out of there, it was less likely to happen with someone watching me all the time.
     As noted in earlier posts, I tend to "do my thing" alone, in the morning, as my dreaming thoughts and waking thoughts mesh into one exquisite world.
     The doctors knew that already but insisted on doing it their way, as usual.
     Even the bark of my dog helps bring me back to this world. So a constant babysitter, wiggling bed and machine hooked up to me, preventing my wandering ways, was NOT helping the neurologists in their goal of capturing the spikes and waves on film.
     Quite the opposite, it was keeping me here, in this world and preventing me from going there, to the place I love so much.
     At some point, I realized I wasn't getting any of my meds, not even the anti-inflammatory I've taken for decades to control arthritis. "Were the doctors trying to cause me pain and put me in such an extreme state that I would have a grand mal seizure?" I wondered.
     Were they trying to torture me into having a seizure? What exactly was going on?
     I told one of the nurses that I had almost taken my arthritis medicine, (I always keep a few in my purse.) but had decided not to because when you're in the hospital, they deliver all your meds. This confession, along with my admitting to having a knife in my bag, led to yet another degrading experience.
     They insisted I dump the entire contents of my pocketbook out on my hospital bed for "an inventory" while the staff and my husband stood over me. Out tumbled the mess that my life had become after nine months of actively seizing.
     It was one of the most humiliating moments of my life, and trust me when I say there have been plenty. No longer could I hide my diseased state of mind inside an over-sized Michael Kors purse. It was all there for them to see...the silly keepsakes that mean nothing to anyone but me, the junk mail I had yet to go through, my journals, etc.
     I let them know just what an absurd decision it was to put me through that and did so in a way that wasn't pretty at all. We dumped the mess back into my purse, and it was locked away until my release.
     Once I mentioned the knife, the psychiatric team began accusing me of being suicidal in addition to the earlier suggestions of being a bipolar victim of childhood sexual abuse. "No, I do not want to kill myself," I assured them, again and again; I just want to get out of this room and go home.
     It was absurd to think they could prevent me from hurting myself anyway, and I did something to prove it. Hanging from my wrist was a silver bracelet I've had for 17 years with charms from our three years in San Antonio.
     I took the Texas longhorn charm and scraped it down my left arm, just enough so a tiny bit of blood would show through from a long pink streak. It was my way of saying, "Don't mess with me; I'm a pro at this shit!"
    All around me were sharp objects and cords. If I had been suicidal at any point during my stay at Walter Reed, you wouldn't be reading this now.
     There's much more to come. It gets even better...or worse, depending on how you choose to look at it.

Saturday, March 26, 2016

Purple Day

     I don't care for this particular Eve as much as the one I wrote about yesterday. She wrote a book in 1993 about temporal lobe epilepsy, referring to it as "a medical, historical and artistic phenomenon." In typical journalistic fashion, she combined science and fiction to create something both fascinating and offensive to me.
     Rather than read the book, I consumed it, folding down pages, underlining and adding my own notes in the spaces outside her words. Even as I did this, I discovered that's a typical behavior of "people like me," not a unique trait of my own.
     Again, this kept me reading even though it made me want to find the author and tell her the real story, minus the extreme examples given in her book.  Pages 71-72 were the ones that really gave me the creeps. I wanted to toss the book across the room before my whole personality melted into some bizarre medical diagnosis only recognized by a couple of scientists who are probably dead by now.
      The pages were difficult to capture on film because they are back-to-back, but I hope you understand how I felt reading those words while in the midst of underlining and making notes in PURPLE ink.
     Suddenly, yet another little "personal quirk" of mine was nothing more than part of my epilepsy slipping out every time I pick up a pen...Never pencils; I can't stand using them.
      Is my own preference for purple ink similar to a former student of mine with autism who insisted on using mechanical pencils?
      At my job as a special ed teacher, I was able to adjust my preference while working on "official documents," such as IEPs.
     My first mentor, Marguerite, told me it was better to stick with black or blue pens during meetings with parents, where my purple signature looked "unprofessional." I took her seriously, just as I did when my mother told me as a little girl that red ink wasn't smart for signing checks or financial bookkeeping  because people associate that particular color with mistakes and debt.
     Both of them were spot-on with their advice, but I always choose purple first when I can.
Donna and baby sis, Melody 
     I'm not sure when my love affair with purple ink began, but until I read about it in Eve's book, I thought it was one of many habits I copied from my childhood friend, Donna, the one who always seemed cooler than me in the artsy ways I craved but didn't know how to express.
     Either way, it's a habit I don't intend to break, ever.
     Today is Purple Day, when people all over the world are wearing purple to raise awareness for epilepsy. I'll be wearing it, too, but you won't find many purple clothes in my closet.
      Instead, the color is all in the books I've read, my diaries and of course in the letters and poems I've written to people all over the world who have loved me in spite of my purple weirdness.

Friday, March 25, 2016


     I watched The Leftovers from the very beginning because I had already read the book; I'm a big fan of its author, Tom Perrotta. Then, in the first episode of Season 2, I became absolutely hooked because I saw myself in one of the characters, Evie.
     It became my favorite TV show that night, surpassing even my beloved Ray Donovan.
     Before she dropped the birthday cake in that episode, I knew Evie was having a seizure and not just any seizure, but MY kind, the type you never see in movies or television.
     Her mother's voice brought her back to reality, which made even more sense, like the writers of The Leftovers had actually done their research on what epilepsy CAN be...sometimes.
     Her nonchalant attitude about taking her meds also fit, because I always feel like I'm controlling something that isn't really hurting me anyway.
     When she hopped right into a car with her friends after having a seizure, it also made sense, as did her slipping away to  swim in a river at night. I could picture my own teenage friends, Angela and Donna, waiting for me to slip off to a forbidden rock quarry off some dirt road in my hometown.
     That's the kind of thing I did when having those very same type of seizures but not yet knowing what was happening inside my brain.
Jasmin Savoy Brown
     I don't care whether Evie's epilepsy is ever mentioned again in the show's third and final season.
     But it would also be fine with me if they gave her some sort of special powers, based upon stories found in literature that refer to this thing in my head as a "sacred disease."
     Her feisty attitude and defiant nature fit perfectly, as does the anger lingering just below the surface that comes out in what other fans of the show consider to be her "cold, blank stare."
    To me, it's something that took years to master, an ability to control inner rage at people who pay attention to all the wrong things while ignoring what seems so obvious to me.
     Or perhaps her meds have done that, pushed her emotions so far within that she can tolerate the extra things she sees, hears and feels around her, day and night.
     Most of all, I can relate to the intense love she has for her family and to her disgust with people who take advantage of others' desperation for their own gain.
     If Evie has the same kind of seizures as me, she doesn't have that desperation inside her because she knows there are things that don't need to be explained or believed; they just are.
     I'm eager to see what the writers will do with Evie now that she has joined forces with the show's ultimate badass, played by Liv Tyler. The pair should be unstoppable because they are lacking what so many of the other characters seem to be driven by:  fear.
     Thank you to whomever decided to do a bit of research and create this wonderful "character" I love so much and to the casting person who chose the perfect young actress to play the part, Jasmin Savoy Brown.
     My own seizures had been under control for so many years, I had almost forgotten I had epilepsy at all. Then, last June, everything changed.
     What a delightful surprise to find an even better version of myself, younger, stronger and so beautiful, seizing right in the middle of that first episode of Season 2 last fall, then continuing on with her life, as if nothing had happened.
     I call it HBO therapy.

Thursday, March 24, 2016

The First Night

     There was a regular videotape running the whole time, too, but it stayed on the big machine, pointed toward my bed. I don't think it recorded sounds, but that doesn't really matter. Nothing mattered at that point except somehow finding my way back to myself...and getting rest.
     I don't remember the first person brought in to keep an eye on the crazy lady I was, but the second one was not a good match for me that night. She was ready to sit down and chat, pulled her chair right up next to my bed, but I was having none of that.
     When the nurse asked her to keep an eye on me from further away, not so close to my bedside, it must've hurt  the woman's feelings because she pouted. I can spot a fellow pouter a mile away because I've been doing it myself forever...since those early days of stomping out to the apple orchard to release my anger.
     Later, when I was myself again, she came back for another turn and I discovered that she was in her own kind of pain, constantly. We even hugged before saying goodbye on my last day there, two survivors wishing each other well on our separate journeys.
     But that first night, I turned my back away and curled up into a ball, like my my dog and cat and snake do when they sleep. I wanted to shut everything out and find the deep sleep state that brings my dreams to me.
     It was nowhere to be found, not with Fycompa poisoning my brain and a bed that was designed to prevent bedsores...Every few minutes, it wiggled. The moving bed wasn't as sleep-disruptive as the noise I could hear beforehand, coming from inside it.
     At first, I thought the noise came from the EEG monitor and meant that one of my seizures was finally being captured, after years of doctors trying without success. I should probably point out that neurologists want patients to be sleep-deprived because then we are more likely to seize.
     My wiggling bed wasn't a major concern to anyone but me.
     Hearing that noise was one of many "letdowns" during my stay at Walter Reed Medical Center. I suddenly sat-up, excited at the idea that my seizures had registered on the type of machine that always misses them. But it was only my wiggly bed.
     The seizures were as evasive as ever. There would be no "early release for seizing on EEG."
     At some point, I realized there was a new person by my bed, further away, by the windows I really wanted to sneak out of at that point. It would've taken a ladder, so I knew that option was out. I fly in my dreams and have no desire to try it in real life, not that way.
      I first thought the new sitter was a young psychiatrist but he told me he was a medical social worker. To me, he quickly became an angel, the person who got me through that first horrible night when my mind kept going in the same dark places, scary thoughts circling my brain like buzzards over a dying calf.
     The medical social worker reminded me of my oldest nephew, Wayne, young and strong. However, he talked, and more importantly, listened, like someone wise beyond his years. Every time I started to ruminate on the same irrational, dark thoughts, he redirected me back to the here and now.
     Even a hospital room with a moving bed and no privacy was better than where Fycompa took me. The seizures take me beyond heaven; that drug was leading me into hell.
     Within a couple of hours, he built the kind of trust and communication it took months for me to have with my first autism students, the ones I followed into their classes as an instructional assistant to help them fit in more easily.
     For example, when my voice grew too loud, he made a motion with his hand and I lowered my volume, realizing I was acting like manic Pam again.
      By that point, he had heard some of my most painful stories, and I had to ask, "How do you do this day after day and not take it home with you, in your own head?"
     "I've seen much worse," was his quiet response.
     There was one more question I needed answered before his shift ended. "How did you end up stuck with me tonight?"
      "I volunteered," he said. My heart exploded with love and gratitude for him.
      That night felt like 30 years of therapy. I wanted to hug him and never let go but instead, I simply shook his hand and said, "Thank you."

Saturday, March 19, 2016

Fycompa Freakout

     By the time I got to Walter Reed, it was hard to sit still, but I knew the necessary steps to get past the guards to the doctors behind closed doors. So I sat there while my mind raced with thoughts that came from some other person the Fycompa was turning me into. A manic, paranoid lunatic would be the best description.
     When I first started taking it, I began feeling more alert and even smarter than before. "Maybe the doctors were right," I told myself. This could be the one that transforms me into "someone better."
     I was braver, too, in good ways. Less afraid to tell my sons and husband some of the worries I usually keep inside, where they gnaw away at my stomach and make it hurt so much I visit other specialists who prescribe different pills.
     Because Fycompa was so scary and came with a black box warning for things I'd rather not even think about, I was also constantly asking my family, "Am I acting crazy? Is the drug doing anything weird that I can't see?"
     By the second or third week, I was apologizing for talking too much, hiding myself away again to give my family a break from me and my sudden compulsion to "think aloud." The seizures didn't slow down one bit, and I was sleeping even less, beginning to wonder if maybe I was going to start remaining awake 24/7.
     Everything was a writing prompt, which is the only good thing I can say about Fycompa. I could look at a piece of discarded trash by the road and somehow connect it to one of my favorite themes, plus I had the energy to get the ideas out of my head and onto this blog, despite the lack of sleep.
     My appetite completely went away and hasn't returned yet. I'm not sure if this is a permanent side-effect or not, but I don't really care either way. It would almost be funny.
     In the days leading up to my voluntary incarceration, I began feeling too smart, but not in a "grandiose" way. There were simply too many things I wanted to learn and read about and research but not enough hours to do it in.
     By the final night, I was recognizing paranoid delusions in myself and walked down the street at midnight to my friend Courtney's house. I knew she wouldn't judge me, no matter how nuts I might sound, and I needed someone to listen.
     When she hugged me in my driveway after walking me back up the street, I promised her that I would have my husband drive me to Walter Reed first thing in the morning.
     I did not want anyone else to see me in that state or to know about the strange thoughts going through my mind, except doctors and nurses. She and I were both crying when we said goodbye. I didn't know when I would be back or what kind of shape I would be in.
     However, I was convinced the doctors at Walter Reed would know what to do and that somehow, things would be better the next time we saw each other. I craved relief from the emotional pain and growing fear of what would come next on the very, very bad drug trip called Fycompa.
     The last thing I did before leaving for the hospital the following morning was make a desperate telephone call to my family in North Carolina, asking for someone to please come help me get through whatever I was about to face.
     The doctor's office routine actually calmed me because it was familiar and the guy checking my vitals was so nice. He remembered me from before as the person who walked out when they tried to schedule a 4-day stay to measure my brain waves on an EEG.
     I was cool with it that day until the receptionist told me I wouldn't be allowed to leave the hospital room, that I couldn't roam the hallways and chat with the other inmates. Now, I was willing to go through that torture to stop whatever was happening in my brain.
     Within a few minutes, I was allowed into the inner chamber, describing my racing thoughts and irrational fears to a psychologist/trainee. She asked if I had ever been diagnosed with bipolar disorder. No, and that information is in my record, I informed her. A complete neuropsychological assessment was performed here last August, I added, naming the doctor who said I passed with flying colors, no labels necessary except epileptic.
     When I described my seizures and how they take me back to comforting childhood memories, she asked the same questions other shrinks ask....Do I see things that aren't really there? Do I hear voices and if so, do they tell me to do things? No and no, I answered, same as always.
     I have temporal lobe epilepsy, I explained, and my seizures happen in the part of my brain where my memories are stored. I might as well have been speaking a foreign language because it doesn't fit in the psych manual, what I describe. (I know because I've read every version since DSM-III.)
     To her, this was an opening to ask about past sexual abuse,experience, etc. I'm not sure if male epileptics get this same line of questioning, but I find it to be very offensive and ignorant.
      I was demonstrating the Black Box warning side-effects of a newly approved drug and being asked to once again describe my sex life. I became angry at the hidden accusations directed at the kind men who spent time with me when I was a little girl but never did anything to hurt me...uncles, teachers, neighbors, coaches, etc.
     But then, the familiar face of my epileptologist appeared, and he agreed the Fycompa was doing a number on me and it was in my best interest to be admitted. This would also allow them to hook me up to the EEG machine and maybe capture one of my "unique" seizures on the type of film that matters to neurologists.
     On his way out, he reminded me I hadn't followed proper procedure."You didn't have an appointment and should've gone to the ER," he said.
     That made me feel sooooooooo much better about myself, as my brain continued its out-of-control journey into darker and darker places. As usual, it was all my fault.
     My husband looked tired and scared when I saw him waiting in the lobby. If this is too much for you, I said, you can leave, get some rest, do whatever you need. I was flooded with guilt every time I looked into his eyes so I stopped doing it.
     "I'm in good hands," I told him, and believed it then.
     Ron stayed and Tommy was there, too, by the time we were taken to a different waiting area, one with better books and free snacks. I took Lady Chatterley's Lover, maybe because the head-shrinker put the idea of sex in my brain with her earlier line of questioning.
     There wasn't room in whatever part of the hospital I actually belonged, so I got a "VIP" room somewhere with old people wandering the halls and wounded warriors suffering in silence behind closed doors.
     It was tiny and didn't feel very VIP, but I had a nice view of the park where I had smoked what I thought was my last cigarette.
     I changed into the inevitably ill-fitting hospital gown and resigned myself to the fact that I wouldn't be showering for a day or two. It was the same way in 2011 when I had a mobile EEG machine attached to me here at home.
     The guy who glued the wires to my head was the same one from the epilepsy clinic, the nice one who took my vitals. It was relaxing to have him "play with my hair," and I suggested we come up with some form of therapy involving his techniques, minus the wires and glue.
     By the time he was finished with me, I looked like David Spade at the end of Joe Dirt, minus the dreads. He even gave me a chin strap and little "purse" to help carry around the metal box that stayed close to me.
     Every time I went to the bathroom or got up for any reason, I had to adjust the gown and bring my little box. The wires from my head were connected to the EEG machine by my bed. When I went to the bathroom, the door couldn't close all the way and sometimes the wires forced me to stop short, like a dog who has reached the end of his rope.
     It was both pathetic and funny at the same time.
     Despite my mania/anxiety, I remained upbeat because everything was happening as I expected it would. After multiple sticks in my rolling veins and bruises on my arms and the back of my left hand, blood was drawn and those plastic tubes were in my arm that I thought would bring relief.
     Surely, the nurses were about to put something inside me to calm down my brain and make it stop going in the same dark circles. I was a caged animal waiting for the tranquilizer gun to save me from clawing my own eyes out.
     But it never came. The plastic tubes were there just in case something worse happened or maybe as a little placebo to make me think help was on the way, like the therapy dog who never showed up.
     By the time I realized they were putting me through a "cold-turkey" Fycompa detox, I was already attached to a machine, forbidden to leave my room, with someone constantly by my bedside...watching.