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    Surviving Wonderland: Living with Temporal Lobe Epilepsy
    Surviving Wonderland: Living with Temporal Lobe Epilepsy
    Surviving Wonderland: Living with Temporal Lobe Epilepsy
    Ebook144 pages2 hours

    Surviving Wonderland: Living with Temporal Lobe Epilepsy

    By Sharon R. Powell

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    About this ebook

    Surviving Wonderland: Living with Temporal Lobe Epilepsy is the story of one woman’s journey down the rabbit hole and into the Wonderland of temporal lobe epilepsy. Sharon tells of her life starting with the diagnosis and moving through seizure-related issues, the isolation associated with a condition still carrying a negative stigma, to the eventual insights into the value of the experience. For people with TLE and their families, this book can serve as a guide through the maze of a condition still not easily recognized by healthcare providers or accepted by the general public.
    LanguageEnglish
    PublisherBookBaby
    Release dateApr 7, 2014
    ISBN9781483524559
    Surviving Wonderland: Living with Temporal Lobe Epilepsy

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      Book preview

      Surviving Wonderland - Sharon R. Powell

      Wonderland

      CHAPTER ONE

      Diary Entry

      December 4, 2006

      Salt Lake City

      The Rachmaninoff Concert

      As I took my seat in the front section of the Conference Center of the Mormon Church (not sure if that is the actual name), I looked around at the thousands of people streaming in from several doors. The hall was huge and full. The number of people concerned me and I felt a measure of panic rising, but I was confident that things would be fine. I had taken as much of my medication as I could get away with and still walk around.

      The concert was important to Dave and his daughter Meagan. It was her graduation celebration. How could I turn down the invitation? What was I to say? That I was afraid all the people would make me feel strange? So I settled in and concentrated on relaxing as the pianist took his seat.

      As the strands of Rachmaninoff began to move through the hall, I remembered the music with some nostalgia. My mother used to play some of these selections when I was little more than a toddler. She would sit me in the living room, put on the music, and leave. I was content to listen and build my own world.

      I started feeling dizzy about fifteen minutes into the concert. My eyes wanted to close or rather roll back into my head. It was an effort to keep them open. How could I be sleepy all of a sudden? I propped them open, determined to stay awake. I started to focus on the audience instead of the stage. There was a man, about five or six rows in front of me, who stood up for some reason. It seemed he was reaching down to a child. That is unusual, I thought. They don’t like you standing up during the concert. The man wore dark navy slacks with a white and navy polo shirt. He had short dark hair. As I watched, he evaporated into the air. I closed my eyes and opened them quickly. I was losing a sense of time. Chances are, I saw this person for an instant but my mind stretched it out. Even then, what I saw wasn’t where I saw it when I saw it. Was it even real?

      Then, I noticed the woman in front of me. A hand grew out of her head. As I looked at the hand, it waved at me. At first, I wondered if the hand hurt the women, until I realized the hand was not real.

      Dave turned to me and asked me if I were all right. I stared into his face, then into Megan’s. Yes, of course, I told him.

      The music continued. My eyes felt like they would close of their own no matter how hard I tried to keep them open. The more I tried, the worse the distortions became around me. Then my head began to hurt and the electrical shocks started down my body. I wondered if I were moving with each jolt.

      The music stopped and people rose to leave. Now I was really in trouble. I had to walk out of the Convention Center and down three blocks to the parking lot. But the ground was moving underneath me, tipping and swaying like a carnival funny house. I concentrated on keeping my eyes on the ground and walking very carefully. I knew that Dave and Megan thought there was something wrong with me, but I could not bring myself to tell them what was going on or ask for help.

      Ask for help you idiot or they will think you are on drugs. No, I can’t explain and I don’t want to explain this to anyone right now, it’s my choice.

      We finally arrived at the building, and I somehow got myself into the condo. I went into the bathroom and downed several seizure pills and a painkiller, then lay across the bed with my clothes still on waiting for the pain in my head and the voices to subside.

      CHAPTER TWO

      The Diagnosis

      I am sitting in the psychiatrist’s office, across from him as he hunts through thick volumes and cross checks the voluminous paper work I filled out before I came. He is surrounded by bookcases with a type of rolling tray in front of him so he has all of his books within arm’s reach as he works. I have never seen anything like it. I remain silent except for the occasional answer to a question to clarify something on the paperwork.

      I had hated filling out that paperwork. Most of it made me uncomfortable or made me cry. There must have been at least fifty pages with sections that repeated themselves in a disjointed way. I forced myself to get through it. Now I am watching him go through it line by line. This has got to be the most uncomfortable doctor’s appointment I have ever had.

      I sit here in my best Fall outfit, dove-colored suede skirt and brown leather boots, my makeup perfectly applied and citrine jewelry lovingly selected. My best scarf draped over my shoulders, hair carefully arranged. One would have thought I was going for a photo shoot rather than a doctor’s appointment. But this appointment was so terrifying to me that I thought I needed some kind of armor, some kind of perceived protection, no matter how useless. So I sit here, ramrod straight feeling tiny rivers of sweat run down my back underneath my cream silk blouse.

      I am very close to a panic attack. Don’t think, don’t imagine, don’t hallucinate, I tell myself." Somehow I do not think this guy would find it amusing. I did not take any medication on purpose prior to coming because I did not know what kind of tests he would run. So far, all he is doing is reading my paperwork that covers the hallucinations, but I would rather talk to him about it.

      The waiting room was a nightmare in itself. Rust-colored blinds and stark walls with some Native American art and a tiny pumpkin. I am sure the pumpkin was supposed to bring warmth, but the room had a haunted feeling about it.

      Stop thinking haunted, I tell myself. I concentrate on why I am here. The ever-increasing headaches like bombs exploding in my head. I get Botox shots in my forehead every few months to deaden the area around my temples and across my forehead to try to stop them. The regular doctor has given up on me and no migraine medication will work. The migraine medications either have no effect at all or they cause me to become suicidal. The suicidal feeling is familiar enough that I know now what to avoid before I start to cut my wrists. But the way I see myself in the mirror is definitely scary.

      Because the migraine medication has no effect, the doctor thinks they may not be migraines. That could be since they are accompanied by hallucinations that are sometimes visions, sometimes sounds, sometimes smells, and sometimes even a touch. They are mostly terrifying images right out of Dante’s Inferno. But the worst is the pain and the anticipation of an explosion. I have found myself on the floor of my dressing room, clutching my head, listening to the sounds of explosions and waiting for the one that will blow my head apart.

      I go to work and I smell things burning. I go in the restroom and run cold water over my hands and face and wonder how I am going to get through this. I see things going on and people passing me in the hall. They are there and then they aren’t. I hear voices. Sometimes they call my name and at other times they just yell or talk to me. The sound is painful. It goes through me like an electrical shock. The pain in my head keeps going. I beg cigarettes from a friend. The cigarettes make the pain worse and bearable at the same time. How can anyone stand me like this? I feel like I am going mad. My friend offers to get me street drugs if it will ease the pain. I decline, because I am afraid that I will go completely insane on them.

      My therapist, Kim, arranged this meeting with the psychiatrist to determine what drugs I can take to stop the pain, and to determine what’s causing these headaches. She knows something is going on with me and she is pointing me to a specialist.

      I have been having hallucinations for so long that it is hard for me to determine if that is a problem or not. I know that I am not schizophrenic and I am not bi-polar, so I am not sure what the issue is at this point. There are even times when I wonder if it exists at all or if it is all a figment of a creative mind, like the guy in that movie, A Beautiful Mind.

      I look around the room at the Native American symbols he has everywhere. They are very ancient and represent great power. I know this from the years I have spent in Santa Fe working at my friend Pier’s gallery of Native American art. Wonderful, I think to myself, an all-powerful shaman. I am feeling worse by the moment.

      He looks up and asks another question answered in the paperwork. I tell him that the paperwork is very disjointed and many of the questions are duplicates, and that since I have this degree in health information, I could revamp the questionnaire for him so it would be direct and clean. He looks at me and sort of smiles and says that there is no need to do that. Oh, I get it, I say. The paperwork is designed to tell you if I am lying. He ducks his head to hide his expression and I know that I am right.

      The tiny rivers of sweat become cold and I begin to tremble a bit as he closes the book and looks up. His collar is too big for his neck and his tie does not match his shirt. He looks academic.

      You have Temporal Lobe Epilepsy, he says without emotion.

      All I hear is the word epilepsy. My ears begin to buzz and I feel as if I am going to black out.

      He is writing out a prescription for an anticonvulsant for me to take for the headaches. He is also writing the name of a neurologist. I am concentrating on breathing and smiling. Inside I am dying.

      Epilepsy. This is medieval. It’s as if someone just told me I am possessed by demons. At that moment, I feel shock. He delivered such a blow to me that it feels as if someone has punched me in the gut without warning.

      I write his check, make the next appointment, and concentrate on driving back to the condo in a state of numbness. It is not until I reach my door that I run into Belinda, a neighbor and friend who practices Zen. I tearfully tell Belinda what has happened to me as if I am dying. Belinda hears what I have to say without much surprise and treats the news as if the diagnosis were any other condition. This

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