September 12, 2002

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  My good fortune started with parents who cherished me. If they hadn’t, I am sure I wouldn’t have lived this long. I wasn’t supposed to live long enough to grow up. I start the story of my own life that way because it has been the central fact of this life. Each year, every decade, has been a surprise and a triumph for me. Because my mother and father loved and wanted me I learned to love, and I wanted to live. I fought for life against infections, attacks and addictions and an endless series of undiagnosed and misdiagnosed ailments I eventually learned to lump together and call autoimmune disease. I focused a lot of attention on survival. And I’ve survived.

  
  

  By the time she conceived me, my mother had had several miscarriages and had borne my short-lived sister Neva Ann. She’d been told that further pregnancy could be life-threatening. But reproduction must have been important to her, or maybe contraception wasn’t reliable. I was always told that my parents wanted a child very much. She was in labor two or three days before I was delivered by forceps in a breech position. I came out of the experience in bad shape, and my mother in worse. My mother and I both spent an extended stay in the hospital after I was born. I had surgery and I think she had to be stitched up, too. I had the red hair and translucent skin I have learned to associate with a number of genetic weaknesses, as well as some compensatory advantages. Thus my good fortune continued.

  
  

  

  
  

  Note the tongue above as I try to get out of the doll bed I’ve squeezed into.  I still bite my tongue that way when I’m concentrating or making some extreme effort, despite many attempts to break the habit.

  
  

  I was quick and precise in my mind. My father and his cousin Richard soon began having fun teaching me, challenging me, and watching me perform. I learned to read sitting on my father’s lap at the kitchen table. When he came home from work he would sit there and read the evening paper as my mother cooked dinner. I remember the scents of smoke and grease on his clothing from his work as a welder, and the feeling of his rough five o’clock shadow combing through my fine, thin hair as he read news aloud to me and Mama. When I was old enough to point and ask what things were, I started learning the alphabet. By the time I was three, words such as “circumstances” and “integration” were part of my working vocabulary, and I could spell them.. I was encouraged to perform for friends and neighbors by spelling and reading on command. I thrived on the attention and applause.

  
  

  

  
  

  These two pictures only begin to illustrate a few of the neat things my father made.  The horse above was entirely his design and workmanship, using a spring (in shadow at rear) for the motion.  The vehicle below was an old Hupmobile coupe he turned into a pickup truck.

  
  

  

  
  

  My diction was flawed–the parents accepted my lisp, and “w” for “l”, etc., which had to be corrected by a speech therapist in school later. But my thinking was clear, and I knew what I was talking about, because if there was any doubt between my parents over a definition, we went to the dictionary. My first trip to the public library was to find the meaning of a word (I wish I could remember what it was) in their big unabridged dictionary when it couldn’t be found in ours. I was given a library card then, and libraries, both mine and the public ones, have been important to me ever since.

  
  

  My parents’ relationship was mostly peaceful and affectionate. The only time I heard him yell or her cry was when, while turning a mattress, she knocked his fiddle off its hook on the wall and broke it. Disagreements were usually mild and quickly settled. One area where they “agreed to disagree“ was in how to handle my short, sick life. Because of my poor prognosis and the impossibility of replacing me, Mama wanted to coddle me, keep me safe from harm. Daddy wanted to let me have as much living experience as possible in whatever time I had.

  
  

  In my first three years, Mama was in the hospital several times before finally assenting to a hysterectomy. When she was home, she was usually in her rocking chair. As I began to crawl, she would sometimes tie the drawstrings of my long gowns to her chair so I could not get out of reach. With this restricted activity, my development was delayed. I didn’t walk until I was two–took off after another kid at my birthday party when he grabbed one of my new toys. After I could walk, the screen doors were always locked. Then, after her surgery when I was three, I was allowed out into the yard because she was then able to get around and keep up with me. Oddly, though my walking gait is a limp from having legs of different lengths and I never have been able to run without falling, I’ve always been able to dance.

  
  

  From the start, I had an adventurous nature. I climbed the apricot tree in the yard almost as soon as I could walk, and then instead of just eating and climbing down, I called out to her, to show her, triumphantly, where I had gotten to. She panicked. She came out and stood beneath the tree, crying, and told me not to move. There we stayed, with her leaning on the trunk crying, while I chose the ripest apricots and got as much on the outside as the inside. (I still tend to wear my food.) Soon my father got home and quieted her and coaxed me down into his arms.

  
  

  My only playmates at first were the two sons of some friends of my parents. They lived about three blocks away, and my mother and I would walk there sometimes. One day, I went by myself. Only I wasn’t all the way there yet when my mother caught up with me. She broke a twig off a bush and switched my legs all the way home.

  
  

  She had been wary at first of the Mexican immigrants who were moving into the neighborhood, but eventually made some friends among them. There was a girl named Lupe who used to look after a whole flock of younger kids. She was in school, and taught the little kids English words as she taught me Spanish. I still speak fluent West Coast Spanglish.

  
  

  My infancy and childhood must have been very stressful and challenging for my parents. I had seizures, fevers, allergic reactions and reactions to medications. The most severe of those early health crises was the result of a smallpox vaccination. Day and night, my mother had to sponge me to bring down my temp.

  
  

  My memories of these episodes evoke feelings of frustration and disorientation. Consciousness faded in and out. Often muscles wouldn’t respond when I said, “move”. I hated restraint, had no self-restraint. I’d hop out of bed on the run as soon as I could, and often I’d relapse. My bed was piled with puzzles, books, comics and toys, there was a radio beside it… anything to hold my interest and discourage activity. I diverted myself willingly enough, but wanted out to explore.

  
  

  I started kindergarten a few weeks before my fourth birthday. I was kinda frozen in shock and fear as I watched my mother take a last look through the door before leaving me there. Then my friend Donald, the younger of the two boys I’d played with since infancy, grabbed me and held on, wailing and sobbing for his mother. We both survived that day, but school never became comfortable or easy for me. The social aspects were always more troublesome for me than the academic requirements. Kids teased me for the red hair and freckles, for the withping thpeech, the funny walk and falling down. Frequent lengthy absences for illness disrupted social connections and earned me the nickname, “Sickie”.

  
  

  The positive aspect of those absences was academic progress. My parents got me textbooks at my level of competence so I learned a lot faster than my classmates. A few of the meaner kids, especially boys, liked to call me Egghead or Brain. I think the kick for them lay in my reaction: fists on hips, nostrils flaring, I’d stomp my foot and demand to know what’s wrong with being smart.

  
  

  I made several attempts to run away from home.  The photo at left could be one of them; I’m not sure.  In first grade, a girl tore the head off a doll-shaped purse I’d gotten for my fifth birthday, and I told my mother I wasn’t going back there again. She wasn’t buying it, so I packed a wash cloth and a book into my little suitcase and asked my visiting cousins to take me home with them. They drove me back to my home after driving me around talking logic and moderation to me for a while.

  
  

  I desired autonomy, solitude, sugar, and dopamine. I remember begging for crackers and jam between meals… sneaking a spoonful from the sugar bowl on the kitchen table on my way to the bathroom… being restricted to 3 bottles of orange pop a day after I’d guzzled 8 bottles on a hot summer day. School days were hard because I could not adjust my pace and patterns to theirs. They certainly could not adapt theirs to my needs. I lived for the snacks and lunchtime, and in dread of kindergarten nap time and then the “quiet times” in first and second grades when we were compelled to lay heads on desks for minutes at a time… agonizing torture to me. I was told it was growing pains. I now know it was fibromyalgic trigger point activation.

  
  

  I was in pain, it hurt almost all the time, and I cried a lot. I got close to the school nurses everywhere I went. I got to know a lot of doctors, too. My first career ambition was to be a nurse… actually, I first wanted to be a doctor, but someone told me girls had to be nurses. It was okay, I knew a lot of nice nurses, too. A nurse taught me how to relax.

  
  

  It was part of preparing me for some painful procedure. I don’t recall the procedure, but I never forgot the deep, slow breathing and progressive tense-and-release process to turn myself into a puddle. That puddle visualization clicked right into my little mind and I used it whenever the pain got bad.

  
  

  I was catching every disease that came around, getting sicker faster than most other kids. To some of them it seemed, since I got sick and then everyone else followed, that they all caught it from me. I felt somewhere between a canary in a coal mine and the messenger that gets blamed for the bad news.

  
  

  Social repercussions of the chronic illness were worse than the various symptoms: vomiting, rashes, swelling, pain, fever…. There! Found the good side. Mama said always look for the good side, and fever was so strange. It appeared to scare the hell out of everyone around me. The range between 103-105 Fahrenheit is, to me, one of life’s best natural highs. During youth and young adulthood, in periods of remission, I’d dance or bicycle for similar effects: endorphins, dopamine and probably other brain chemicals I don‘t know about..

  
  

  Between the fevers, the pain, and all the advice from nurses about relaxation, at some point during one of the three cases of measles I had within a year or so of age five, I learned how to turn pain into pleasure. At first, it was something I did only when driven to it by severe discomfort. Within a few years, I was toying with my sensory nerves. Some combination of the intense pain, the fear born of pain and the fear picked up from parents and medical personnel, and the obsessive self-injury for the sake of endorphins and dopamine, triggered a series of recurring dreams in which I was the young female sex slave of a blond man I named Bad Man. Only when I was in my forties and met the one who is the reincarnation of the original Bad Man of my dreams, did I understand that those recurrent dreams were inspired by past-life memories.

  
  

  It was deeply disturbing to my mother to catch me acting out the Bad Man fantasies I invented after I had a few of the dreams. I learned to keep the  Bad Man games quiet and hidden.

  
  

  I walked in my sleep, talked in my sleep, was extremely difficult to arouse from sleep. To get me to school on time through third grade, Mother would call me several times, then drag me out of bed, dress me, set me in my chair and start feeding me. Usually a drink of orange juice would be all it took to get me tracking, if only approximately on track. My diurnal clock has never been in synch with institutional time. I’m an evening person. My energy and clarity peak around 5, the time most people are beginning to relax and unwind.

  
  

  

  
  

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  • 5:05 pm
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