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.