I can still see the inside of my own bare arm. The soft underside of the arm is stretched out in front of my face as I reach forward to try and catch another girl dancing out of my reach. Then the playground whirls in slow motion, and I fall.
Even before I woke out of the velvet dark of a coma in Memorial Hospital, Room 210, I’d somehow guessed what the condition “diabetic” meant. No matter many popular misconceptions, juvenile or Type 1 diabetes was not then, nor is it now, a diagnosis to be taken lightly. I have no idea if Type 2 diabetes, a disease hitting epidemic proportions today, was even taken seriously back then. (Generally speaking, Type 2 is often associated with weight problems and insulin resistance. That is, the pancreas still makes insulin, but the cells are resistant to absorbing it.) In Type 1, the Isles of Langherhans within the pancreas have been destroyed, and so the body of a Type 1 diabetic produces no insulin at all to keep the glucose or sugar levels in the bloodstream under control. Without manufactured insulin then, the blood sugar levels soar; however, there is no insulin to help the cells convert that sugar or nutrition into energy.
Before insulin’s discovery in the early 1920s, then, diabetics could constantly eat, suffer lethargy and punishingly high blood sugars, but no nutrition was absorbed. (The same was much true if they did not eat, as blood sugars were still high with no moderating force to help at all.) In any event, the patients wasted away and/or pretty much starved to death. Nothing could be done. Though I was told many stories and brought some information after my diagnosis, I didn’t have too much interest in the history of diabetes or diabetes care as a child, other than the fact that the whole subject seemed full of horrible, awful, repulsive facts.
In 1962, I was only an eleven-year-old girl in a small town who could not understand why my parents, the doctors, and the nurses kept wasting their time in trying to console, lecture, or explain to me what I’d already understood about Type 1 in the waking. That my sentence was “life,” and the implication seemed to me to be a life that would now be different from all the rest. The rest being the apparently robust children with whom I’d been growing and thriving. I have no idea if I’d heard something about “the condition” in my childhood or early health lessons (not likely?). Do those in a coma hear conversations going on around them? Still don’t know.
Before I woke up in Room 210 to the hush-hush opening and closing of elevator doors from across the hallway, I had attended my sixth grade class and been known as a good student. My biggest concern then was that I’d seemed to be losing my two best girlfriends. Rather plain, I’d had to struggle in order to keep up in the looks department. Also a quiet girl, I’d had to work and play hard in order to keep myself even so much as noticed by these pretty girls who wore fluffy dresses with full skirts over layered stick-out slips called “can-cans.” These talkative girls growing into popular girls who were about to graduate into the seventh grade to find better friends, I’d already guessed. On the day before I went into the hospital I can still remember being deliriously happy that I’d actually been able to acquire a boyfriend—not that the boy mattered to me so much as the fact that my girlfriends seemed again interested in me.
However, after I woke up in Room 210, my concerns became only two. The first being—why had I been singled out? Yes. Why me? There was hardly a diabetic in our whole town, much less anyone who was a juvenile diabetic, a child. Why, there was no other child diabetic but me! More importantly, I did not like what I thought people thought—that I’d been a bad child, one who ate too much candy! Also, my parents were good Christians (the major religious belief in town), and I was a good girl. No, I decided that I did not care for this sort of “being special” at all. If not before, I now, very definitely, just wanted to be like everybody else. My minister, my parents, someone, everybody kept telling me that the God of my Sunday School classes was absolutely not angry with me, and that the same God never gave anyone more to carry than he or she could bear. Still, I could not help noticing that no one had asked me what I thought I could bear. An important point might be was that I never said a word, or not many words.
When I was a child, the world of medicine was not what it is today. Back then, my doctors and my well-meaning parents talked right over me in my bed, never asking me for a comment or question. No children, much less girl-children, went around then asking angry or inflammatory questions. Questions such as, “Why me?” “What have I done, or not done?” Or perhaps worse, “Does God have a mission for me? I don’t get it, and I don’t want it! Do you hear me? I don’t want anything to do with God anymore!” I said things like this only in silence. Meanwhile, not to say people meant to be unkind, my parents and the caretakers would occasionally look to me to say I’d be all right and so forth. An A-student, I did decide to be brave. I learned to give myself insulin shots daily. Indeed, my young life became a flood of syringes, needles, urine test strips, and alcohol swabs. I suppose I was thankful to be alive, but I was appalled by “medical care” and “medical science.” They hurt.
My second big concern in Room 210 was the baby with pneumonia. The baby boy with whom I shared my hospital room cried endlessly. Alone in my room, but not alone, I gazed silently from my hospital bed over to his—over through the bars and into the bed in which his tiny body laid under an oxygen tent. I, myself, absolutely did not cry as I learned how to stick needles first into an orange, then into my own thighs, then my own stomach. However, the baby boy cried lustily. He screamed, and also, he coughed.
The boy’s mother and father took turns sitting with this child who’d been diagnosed with double pneumonia. The boy’s mother, though, was surely not as old as I believed my own mother to be, and yet I reasoned she didn’t look young—not with those dark circles under her eyes. And the baby’s father, he couldn’t be as old as my own father who still went to work every day, while this man seemed to hang at the door of the room like a ghost. Fortunately for those tired parents, an uncle also sat with the baby some evenings until bed time, and as he was a teacher and deigned to speak with me, I enjoyed his company during my captivity in the hospital.
I do not know now if I felt more concern for the baby in Room 210 or kinship. I do know that whenever the I.V. tubes were pulled from own badly bruised arms and I could walk freely again, I’d wait until the boy’s parents had drifted off to sleep or off down the hall to the nurse’s station, and then I’d creep out of my own bed to stand over the baby’s tiny body. Unlike my own, such a frail body caught in the murky, yellow light that shone through his oxygen tent. It was the boy’s thinness that frightened me. He seemed so fragile. His tiny hands trembled when he coughed. His fingers curled. I, on the other hand, was strong. Of course, I was. (Of course, the question today is, should I have been crying or can denial be a good thing?)
To this day, I’ve usually managed to block out memories of my own first trip to the Memorial Hospital’s emergency room. I’d been told that the day I’d fallen on the playground, I’d actually struggled up and somehow gotten home from school. For quite a while, my parents and even the doctor had thought I was still perhaps just fatigued from a recent case of the flu, and so I was just sent to lie down on the sofa under the watchful eye of my father, ever intent on the T.V. news, while my mother fixed dinner. Only after I’d cried and pushed away not only my dinner, but my favorite—a chocolate milkshake, all the while complaining so about how my back ached, it hurt so bad–I had been rushed for a meeting with the our family doctor at the emergency room. (No, I don’t remember the drive in, so I’d already blacked out. Type 1 diabetics fall into a coma when suffering extremely high blood sugar—no, no one back then had even thought to test for such a thing.)
Then, even as early as my stabilization period while in Room 210, I could remember I’d been surrounded by confusion in the emergency room—bright light everywhere, the fall of footsteps and voices calling, the clank of silver metal. I still hate the sound of clanking metal and bright light. I also remembered in Room 210 how my own parents’ faces had seemed so far off. Why, they were floating so far off? I, as their child, did not have to worry about their fright, did I? What I remember now though is the sound of my mother desperately crying, the sound of my father praying. The deep shadow that had become, to me, my parents’ faces. Or has my memory made such things up? If so, why? I certainly didn’t think so then. What came to me as instinct, I think, was that I had to be brave for the sake of my parents. Period.
I have always remembered more easily that the faces of the baby boy’s parents, those other parents, had finally become happier. The two smiled tremulously as their baby began to grow stronger, as his tiny body became finally free of its filmy tent.
By that time a week or so later, back in Room 210, I had taken great, even grown-up pains, to reassure my own parents. I told them clearly and more than once, that I was all right. I would be fine. Never mind my real feelings, if I had to take shots every day, no problem. And no, nobody had to worry about me filching sweets or candy, a piece of pie or birthday cake. If “the authorities” said I couldn’t have any, well—I wasn’t weak, and I didn’t want any. So there! I began to assure every adult with whom I came in contact—parents, neighbors, teachers—we would all go on exactly, exactly as we had before. Did they understand me? Except for the not eating sugar thing, we’d go on as before.
Now, I know I was experiencing a totally new feeling, a most unchild-like feeling. I actually felt sorry for my parents. To me, they seemed to need reassuring. “This thing” evidently simply must be made easier on them. They who very carefully did not blame each other, but themselves as a unit for “the condition that had befallen me . Our family doctor had assured my mother that no, no, it was not too much sugar in the diet that caused Type 1 diabetes. Perhaps it was an inherited trait, but no one really knew for sure yet. The doctor assured my parents that getting me to the hospital in time had saved the day as then the staff had been able to ease my blood sugar down, ever, ever so slowly. He stressed that my child’s heart had been saved any lasting injury, any lasting weakness. In Room 210, I sensed somehow that I was not alone in asking why about life, why and what now. Still, the visiting uncle so pleasantly distracted me with talk of his school, my school now and next year.
That first time, I had to stay in the hospital for nearly a month. Again, the world of medicine not being quite what it is today, the doctor or staff wanted to get my blood sugars balanced, wanted to observe me. I grew stir crazy, bored and even disappointed when the baby boy was discharged and his uncle no longer visited. The boy’s uncle had come sometimes to relieve the exhausted parents, and I’d grown interested when he’d informed me that he was a teacher, a teacher of children near my own age. In fact, the man said he’d have his students write letters to me.
At first, I hated these letters as I felt I’d been “singled out” as the recipient just because there was something wrong with me. Of course, as the teacher was being so nice to me, so adult in his conversations, I could not bring myself to tell him to stop his students’ unwanted attentions. Actually, I even began to enjoy the letters. Not their contents, so much as the individuality of each student’s handwriting–sloped and awkward handwriting so like my own, yet not my own. Letters not only from another school, but from a whole other small town. Again, a small town like my own, but not my own. Letters from a world beyond my borders.
I took up my own pen and wrote. I wrote back. The point being, simply that I wrote. My hand moved quickly, as if feeling some desperate need to communicate. At the same time, I took to bargaining with God as it seemed to me that this writing thing could become very important, could become a bargaining chip. What I bargained was that if I had “my condition” for say, an interminable six months of daily shots and “gross” urine tests, or okay, for maybe even one whole year, could I not then use my knowledge, my experience to write a book. I promised God I’d write a book about a child with diabetes. A book to help people, I reasoned as if in God’s presence. Surely then, I implored God, I could then again grow to be “well”?
The truth I was not about to tell anyone was that I felt I simply could not bear thoughts of my future. Not a future of no more chocolate cake, no more cookies and brownies. Not a future of shots and more shots, needles, blood and urine, and more needles. A future of high and low blood sugars dwindling down to blackouts and unconsciousness, true panic. Panic while friends stared in pity at me as I tried to glide unseen down the hall. Friends who hid sacks of candy behind their backs, and friends who apologized endlessly to me while they cut their respective birthday cakes. I dreaded a future in which I’d have to go around confessing my condition to all I met. Wouldn’t I have to tell boyfriends too? No, I’d have to hide my syringes and needles. Only test my urine in deep and dark secret. I scrambled inside myself to throw up a wall. A shield of calm. I wrote no one about this. Not only did I have a secret, I had no words.
A child from an isolated town, a girl child from whom “the usual” was expected—the usual being a husband and “healthy” babies, but even more, an easy smile and an uncomplicated attitude—just a child, I realized I was in quite a predicament. Why, girl children were not supposed to worry their “pretty little heads” at all. They were not supposed to worry about anything at all. Yet here I was, wandering around in my head already. I was wondering if I could carry off this “life thing” at all. I hated being a diabetic. Therefore, I hated my life. Couldn’t we call the whole thing off?
The death of a child occurred while I lay in the hospital. That hush-hush sound of the elevator door opening and closing across the hall from Room 210 is forever the sound I will associate with her memory. Not that I was supposed to see the girl or hear her story at all—the story about which all the nurses, aides, and even my own parents, buzzed. This particular little girl, it seemed, had evidently been beaten to death. I strained to hear details, but all I gleaned was fragmented talk of ropes and kerosene oil. Of blistering. Evidently, the girl had been beaten to death by her own parents. Beaten or burned. In the whole of my short life, I’d never heard of such brutality. Never.
I can still hear that elevator door outside Room 210 opening and closing, and I can actually envision my own small self. I’ve crept from my late-night bed to peek through the crack in my door, and I hear the man from the funeral home telling my mother that he’s come to “collect” the girl. The voice says that now, at least, the child’s pain will be over. Her “final journey” can begin. As the gurney is pulled from the hall into the elevator, I glimpse a bare, outstretched arm. A bruised arm. The inside of my own bare arm is bruised purple from wrist to elbow due to intravenous feeding and blood testing. I run back to bed before anybody catches me.
Finally, I am discharged from Room 210. My blood levels “balanced,” I am released back into life in the sixth grade. To what I’ve insisted to all will be no more and no less than a perfectly “normal” life. True to my word, I think I act outwardly “the same.” Actually, though, I take more risks. My two girlfriends and I steal one of the encyclopedia carts and take rides up and down the hall. My life hurtles toward a new school year, a new school. However, my concentration on boys, the use of makeup, and my own popularity seems at times disturbed. The “girl stuff” no longer holds my attention indefinitely. I think I began to realize it is I who’ve left my girlfriends behind. I realize, but tell no one, that I am not the same. I am not the same at all.
Whether I admit it or not, I have become a different person. A child no longer wholly a child, and in fact, one who feels very separate from others—someone who often feels as if some important part of herself is forever stealing away from her own body in order to observe her family, her friends, her town, her whole world. This child feels separated by some wall of pain.
Decades later, one part of me can still see another who lay in a hospital bed, the elevator door hush-hushing outside, while she scrawled one word only in large capital letters across the first line of a new notebook. WISDOM. That is the word I remember scrawling, and to this day, I have no idea how this word entered into my childish vocabulary, but I guess I’d hoped, even as a child, that if I found wisdom, I’d have, if not a remedy to the “pain of difference,” I’d have at least some answers to all of my whys.
Until recently, I’ve not wanted to return to Room 210 of Memorial Hospital, because there I realized even then, but without words, that I felt robbed of my childhood. Before Room 210, I’d not known, or dwelt on the knowing that there are difficult, even unanswerable questions in life. In Room 210, I knew I became an A-student without the answers. Years later, after a lifetime of learning and unlearning, I can still only change the period I put after the word in my child’s notebook to a question mark. WISDOM? Could it have, can it ever really help? Did I ever even have the questions?
An unconscious child “came to” in Room 210—not so much seriously ill as seriously wondering. Why pain, why fragility, and why suffering? And why did darkness seem such a big part of me now? The child in Room 210 awakening from the velvet dark of a coma was not so simply “coming of age.” However, at this point in her life, she simply had no words to express or describe the sudden deep river she felt sweeping through her. Meanwhile, the whisper of elevator doors opening and closing to shafts of light, shafts of darkness had given me a rhythm for “recovery,” and one day I rose from my bed in the hospital to walk through them. In my mind, I was running; I had to get to the outside world. The world as I’d known it was now on some altogether “other level,” and I was walking anxiously, but excited just to “get out,” into something else. I think I only had a glimmer that “the something else” would be some other level of consciousness. Everything would have to be experienced and perhaps named anew. Now I know, I was just emerging from the hospital to join in the struggles of our oh-so-human race.
As an adult, though, I sometimes feel haunted, and indeed, writing helps me to straighten out the “garble” or varying wavelengths in my mind. I can focus then. Doors open. They close. Doors open, and though any human being may be wounded to the root by shaft after shaft of darkness, or wave after wave of living, that same human child, for no foreseeable reason and with no recognizable path, can rise to live raggedly on. We grow toward the light. Now there’s the miracle.