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.

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

Evie

     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.