Neurodermatitis: from Hurt to Healed E-Book

Kathrin Rick

• Herausgeber: Books on Demand
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 268

Veröffentlichungsjahr: 2023

Beschreibung

Corinna is twelve years old when neurodermatitis enters her life. For 19 years, she leads a desperate battle against herself, her parents, her environment, and her partners. Trapped in her torn, irritated skin, she surrenders to everything and everyone that promises healing and relief: doctors, creams and ointments, cortisone, diets ... She is 31 when she attends a lecture and realizes: 'My neurodermatitis can be healed.' During a stay in a clinic, she learns how to liberate herself from her own ravaged skin. She begins a new life, forges her own path, commits herself, and indeed step by step heals. Finally, she takes up her calling, and begins guiding other sufferers of neurodermatitis on the path of self-healing.

Leseprobe

I thank everyone who has supported me in completing this book, as well as everyone who continues to help spread its message.

Contents

Welcome

Corinna’s Story

The Crash

In Freefall

Limbo

Spreading Wings

A Moment of Soaring

Disillusionment

Hoping, disappointment, rock bottom

My shadow

Awareness

Gaining Insights

Turbulence

Space on her own

The secret of life

A New Beginning

Tests

Arrival

Guide to Setting off

Facts

Welcome

I heartily welcome you to my book! Soon, however, you will make it your book. Perhaps it will accompany you or a loved one through difficult times, and help you to decode the language of neurodermatitis – a language in which the woman, man, or child afflicted speaks to herself or himself, but fails to comprehend. Most of all, I hope this book will help you to heal yourself, just as it will for others.

“Self-healing – what is that, anyway?”, you may ask. Self-healing arises from the inner power of every human being. It starts when you become conscious and active, by yourself and for yourself. It may be starting right now. Or very soon. This book motivates. If you immerse yourself in its story, you will recognize something of yourself in Corinna’s experience, something that until today you may not have been able to put your finger on. Her story can prevent you and others from taking wrong turns and repeating patterns. If you change your path of life and set a direct course back towards you yourself, this story will be there for you, supporting you. If you still want to wait to do so, it will remind you.

Like this very book, you hold your destiny in your hands. I hope and wish that you also take your healing into your hands. In the ‘Guide to Setting Off’, you will have the opportunity to do so.

Corinna’s Story

One spring day, Barka the wild goose is born. She doesn’t have any feathers, and her parents are speechless when they find Barka sitting, with her bare skin, in their nest. Out of shame, her mother quickly knits a warm sweater for her. Barka is ashamed too – wearing that sweater, she doesn’t look anything like a real wild goose. Because the other geese tease her, she doesn’t learn to swim with them, and without feathers, she can’t fly either. Winter comes, and when all the geese leave for the south, Barka is left behind, alone by the cold river. Weeks pass before a ship’s captain finds her sitting lonely and freezing in the bushes and takes her to his ship. It’s warm there, and Barka makes friends. “But staying on the ship forever is not good for you,” the captain says to her, and takes her to Hagenbeck’s zoo, where he promises to visit her. Again, Barka is alone until she meets Ferdinand. Ferdinand teaches her to swim and becomes a constant companion.

I ask my parents to read me the picture book about Barka the wild goose over and over again, until I can read it myself: the sad, beautiful story always enchants me and makes me feel like it was written just for me, without six-year-old me even realizing how much it resembles my own life story.

The Crash

Corinna is ripped away from the idyll of childhood. She crashes – into a strange place and a life that revolves around neurodermatitis.

I am 12 years old, when neurodermatitis begins to take over my life. One morning, as I’m waking up, I feel that something is not right with my body. I itch terribly, and I discover red blisters all over my skin – skin that was perfectly healthy yesterday. Out of shock and horror, I begin to cry: “What’s wrong with me?”

A week ago was my last day of school before moving to Grounds. The whole class accompanied me to the main entrance of the school and sent me off with a loud “Good luck Corinna!” and our teacher gave me a friendly hug. I was his best student in math and English. My neighbor Oliver gave me a picture he drew showing our friendship, which now hangs above my bed. I was standing in the middle of everything, glad to be so noticed and so loved, until a few minutes later I was walking my usual route home from school, past the orchards and terraced apartment buildings, over the hill from where I love to look out over the town with its distinctive church spires, and it dawned on me that those lessons, friends, and experiences that had made up my everyday life for so many years were over. A dull ache pressed on my stomach: “Never again?” I could not imagine it.

In the afternoons, I horsed around with my friend Kerstin on the large sheep pasture next to our old apartment, pretending that I was the intrepid Sand-okan and she was the honorable Yanez de Gomera. My grandmother baked us potato pancakes with applesauce and told us how, one stormy night after the war, she had fled across the border from East Germany with her young children to find freedom on her relatives’ farm. At that moment, her story seemed more real to me than my own life, which would completely change the day after tomorrow. Like so many times before, my parents and I wandered through our favorite forest with the Gehrings, friends of the family who had two children. We picked mushrooms, which we then cooked and ate without a care in the world. I felt safe and happy in the midst of these people I enjoyed so much, laughing at their jokes and almost forgetting that we would have to say goodbye the same evening. Along the way, in the tall grass and among the dense forest, we dug up a small spruce to plant in our new garden as a reminder of our home town. On moving day, I climbed up in the big trees in front of our apartment where I liked to hide, and for a moment I imagined what it would be like if no one actually found me up here, and if tomorrow were just a normal day. It was only at the last minute, when the movers were already ringing the doorbell, that I heard my mother’s voice: “Corinna, you really have to come down now!” and I quickly boxed up all my toys and games in those big cardboard boxes. Leaving this familiar world stretched my young heart, until it finally snapped as the apartment and the car doors slammed closed. It severed the connection to the twelve years I had lived, and to what had been my life, my joy, and my home. All this had been me until today, and yet unbridgeable kilometers and hours had already separated me from it. As we rolled on through the moonlit night as though we were driving to an invisible wall towards our new house, I felt uneasy. I did not want to go forward, and I could not go back. What had been mine until yesterday remained on that road: the ability to expectantly and curiously gaze at the unknown that lay ahead.

Our new house, which I had imagined to be big, extraordinary, almost sacred, waiting for us in some far-off land, has turned out to be a beautiful but half-finished construction site. The garden is a desert of mud, my father comes home late every evening from his new job, and my mother deals with all the different contractors all day, and battles the mess they leave behind at our house. I feel superfluous and I begin to miss my intact, happy life. The first day at the new school is a test of courage, before which I am so excited that I feel strange in my skin, as my father drops me off in front of the school building, and I make my way to the principal as if remote-controlled. “This is Corinna,” he introduces me to my new classmates, “she’s from the historical university town named Göttingen, which you’ll be able to visit when you’re juniors or seniors.” The dim hope I have of being able to slip into a familiar rhythm (even if it’s a new one), to play familiar games and to tell people about the world I come from, and thus in some way continue my old life, ebbs away with every lesson and with every break. Instead, my new classmates ask me anxiously after every recess bell: “Did you already learn this stuff where you came from? Do you think you’ll be able to keep up in class?” I ask myself: “Why are they so formal with me? And at the same time, they mother me to the point where it’s almost insulting!” Thinking that they overestimated their village school, I answer gracefully: “Yes, I went to the best school in my town.” It doesn’t occur to me that the girls might consider me a competitor and an intruder. But I realize this immediately when I get into the car with my father at noon and see his grinning, “Well-how-was-it?”-face: “A lot of things are different here.”

Within a few days, the eczema that used to show up on my hands every once in a while (which hardly ever bothered me – it looked weird, but quickly went away) develops into a nasty neurodermatitis. My hands, the inside of my elbows, my chest, my neck, the backs of my knees, my back and my face, they all itch violently, and I scratch just as violently until my skin is torn open, bloody and oozing. The wounds heal quickly, but superficially, and the new skin seems too thin for the body it is supposed to envelop. It feels like an insect’s shell – stretched, cracking, peeling off in thick flakes under which my pink flesh becomes visible, and new itchiness emerges. I scratch, and the vicious cycle is completed, over and over again. Water and soap on my skin while I shower in the evening are a painful, burning torture; putting on enough cream for the night is a tedious ordeal. Afterwards, I can’t fall asleep, I start scratching, I count the hours, start to feel guilty because time is running out. In the end, I dwell on how soon my alarm clock will ring and I won’t have rested, which makes me even more restless, I scratch more and sleep less. Or I wake up at night while abusing my own skin with my own fingernails. My nightmares take place while I am awake; in the darkness of the night, I feel my illness even more immediately, even more hopelessly. My skin and I, we are alone. In the morning I am tired, battered from the nightly battle I have fought against myself. With difficulty I get out of my bed, itself covered with bloodstains and flakes of skin; the fear of how my skin – how I – will look today accompanies me into every dawning day. I get out of the habit of looking at myself directly in the mirror. Only in sections, inch by inch, do I allow myself to look at myself, always ready to close my eyes so as not to have to see my destroyed, distraught face. Paradoxically, I watch suspiciously if and how my body changes and examine it daily. Every evening, my fear of going to bed, where the worst hours of my life take place, weighs me down. It is a fear that I cannot put into words to anyone. I’m terrified of the encrusted places in the bedding where the blood and the fluids from my wounds have dried, and of the long, dark hours ahead. With my eyes closed, I hurriedly sweep the flakes of my skin from the sheets and feel in horror how what belonged to me yesterday now sticks between my fingers. I try all sorts of tricks to persuade my parents to let me stay up late in the evening, but they admonish me lovingly and steadfastly: “You have school tomorrow, Corinna, and you want to be well rested. That’s why you have to go to bed now.” On many evenings, my mother sits down next to my bed and caresses me to sleep for a while, in the places where my skin allows it. I love her gentle touch and get sleepy, but as soon as she stops and leaves, the itch and I are wide awake again. Sometimes I stand for hours in a thin nightgown by the open window, because in the night cold I can’t feel my skin oozing today, tightening tomorrow, constricting me, and only when I start to shiver do I crawl back into bed, lying frozen in an effort to touch as little fabric as possible, happy for the warmth one moment, but which immediately starts to reheat my skin. Again, I succumb to the itch that I have been able to delay, but from which I won’t be able to escape today, or ever.

I’m usually the last to arrive at school, if not late, and I’m simultaneously sleepy and irritated. “Who among all these strangers would understand my exceptional situation?”, I think, and many times I stand for minutes at a time in front of the already closed classroom door, gathering the courage to knock, to enter and to feel everyone’s eyes on me, and I would much rather run home or even further away. “How overwhelmed and uncomfortable that poor girl looks,” I read in my teachers’ faces after I have gotten over my own fear. I participate in class as little as possible, because I get embarrassed when everyone focuses their attention on me. More than with the subject matter, I am anyway preoccupied with my itching and with suppressing or indulging it as inconspicuously as possible with pens that I slide under my clothes and stroke back and forth on my skin. “You have to raise your hand more often,” my teacher states evenly after a few weeks, while she examines me with her cool, gray eyes and brushes flakes of skin off my dark blue sweater with two brushes of her hand. But I rarely get up the courage to speak in front of the group – outside of class, they talk about people I don’t know, or about horseback riding and farming, which I also don’t know anything about, so I stand by silently without seeming to mind the others. Things that I took for granted until recently, like playing in the schoolyard during recess or meeting up with friends in the afternoon, now confront me with the nagging questions: “What do I do? And with whom?”

As uncomplicated as I’ve always been, now I can’t settle in. When Oliver and his parents visit us and we walk through the desolate little town as the winter wind sweeps around the gray walls of the houses, he says: “What a dump this place is!” in a tone so condescending that I cannot miss his relief at being able to return home the next day, and wish I could accompany him forever to where there is now snow and people can skate on the frozen lakes. His words cement my own attitude to my new location: I find the landscape flat and charmless, the town small and pitiful, the people closed, and their tone rough. “What’s the point of being able to see all the way to the horizon if there’s nothing but unpleasantness coming up?”, I complain, disappointed. While I am still a child at twelve and losing myself in play, my new classmates are doing jazz dance, and some are already menstruating. Once I go to swimming class – I miss the water, I miss moving, I miss my weekly exercise. At the edge of the pool, three big, burly boys approach me, and one of them asks: “Do you have measles?” They laugh. I can’t follow my usual habits in this place, and I don’t invent any new ones. “How can everything be so different if we are still in the same state in Germany?”, I ask myself. But it is. I have become a stranger to myself, and my surroundings are like strangers to me, and as the curiosity about “the new girl” at school ebbs away, I just become a stranger to the others.

I can still see myself standing in the hallway the day before we moved. Our neighbor, who was also my pediatrician, comes to say goodbye to us. She talks to my parents about how moving day would be handled, then steps up to me and grabs my shoulders kindly with her warm hands. “This isn’t going to be easy for you, kiddo, moving to a brand new place without friends and all that you have here,” she says, looking at me with her kind eyes. Something in me wants to collapse at that moment, to sink into her arms and crawl in there until I know the confusion in my life will have settled down. But I manage a brave smile and a stiff upper lip, and say: “I’ll be fine.” She nods, lets go of my shoulders, and leaves. My anchor is hauled in, and I anxiously am driven out to sea.

In Freefall

Alone, isolated, unhappy, and angry, Corinna falls down deeper and deeper. Only her neurodermatitis accompanies her into her loneliness.

I’m fifteen, and many of my afternoons are spent in the waiting and exam rooms of the dermatologists in the area. “Neurodermatitis is inherited,” they tell me – my parents and grandparents have healthy skin and bronchia – and even if a cure exists, scientists are still looking for it. Still, in some patients, the symptoms disappear after puberty. In any case, I have to put cream on my skin several times a day. With every new ointment, every new treatment that promises relief, I start to hope. I hardly dare to imagine that my skin could become healthy and I could become “normal,” and yet I long for nothing more.

I wish that my relatives and friends, when we visit each other, will no longer first ask me: “Well, how’s your skin?”, and then when they see it, they shudder and beg: “Don’t scratch so hard, Corinna, I can’t bear it!” I wish the other kids my age and their siblings would no longer scrunch up their faces and ask: “What’s that?” and get scared they might catch a skin disease from me, or that the eyes of strange adults won’t reflect pity and horror when they look at me. I want to be seen again as the healthy, happy kid that I used to be, and I want to be that again – this girl that got along so well with herself and her life, that she didn’t even think about life, but simply lived it. Often, with a new medication, my skin begins to soothe, and with tears I feel relief and possible happiness rising inside me. But every time the improvement proves temporary, and I return to my old condition more discouraged than before. What remains is a disenchanting arsenal of greasy creams that stink of tar or urea that penetrate into my clothes and make them cling to my body.

One summery Sunday morning, my parents and I go biking through the fields and pastures where we live. They are convinced that the trip would do me good, and it is futile to resist. Suddenly, hives erupt all over my body. I would need ten hands to scratch the itch, and I become so restless and uncomfortable that I can hardly keep my balance on the bike. After hours of scratching, I finally lie on the sofa in the living room, dazed, exhausted, listless, and crying. In the following weeks, my family doctor injects me with strong sedatives, which he sells me as high-dose calcium injections. “You’ll see – calcium calms and heals,” he promises me. A few minutes after the injection, I become so tired that I just barely make it home on foot, where I fall into bed and sleep for fourteen hours straight. As long as the fatigue lasts, my skin also experiences a healing process. Afterwards, however, everything is back to normal. I protest against this treatment and ultimately refuse it; only much later do I find out what medication I actually received. In the meantime, sneezing and a runny nose have developed along with the itching, but it takes another three summer months (during which I hardly dare to go outside) until finally a dermatologist examines my complaints in a prick test and prescribes me an antihistamine against pollen. This makes me only slightly tired and should enable me to spend the next few summers in the great outdoors instead of shutting myself away in dark, closed rooms. However, the doctor warns me: “Be careful your allergy doesn’t further advance and become asthma. It’s best to desensitize your body through medical treatment.” I think about his advice, but I don’t follow it. Without being able to explain, it seems wrong to me to blunt a natural reaction without curing it. As unpleasant as it is for me, I want to know whether or not it flares up if left untreated.

Neurodermatitis comes and goes in phases: itching and inflammation can erupt from one moment to the next and persist, only to subside again unpredictably and indefinitely. The more randomly the disease develops, the more I fear it, fear having to watch how within seconds my skin becomes sensitive, breaks open, and falls apart, as if it were being eaten away from the inside, without me being able to do anything about when it will subsequently heal again. In bad phases of neurodermatitis, my green eyes seem cloudy and my blond hair seems dull. A particularly perceptive doctor says to my mother after looking at my disfigured torso: “Well, your daughter won’t be in the front row at the beauty contest.” I learn to hide. Physically, by covering my skin with long pants and long-sleeved, high-necked blouses.

If it didn’t work like itching powder on my skin, I’d gladly disappear behind a mask of makeup.

Sometimes my mother, who also finds me unreasonable to others, bandages my hands before I go to school or to other people’s homes. As soon as I leave our protective house, I avoid eye contact with people and prefer to look at the ground. Down here I can orient myself – it offers me a manageable space, free of surprises. If I nevertheless encounter people who are supposed to have a good opinion of me and cannot avoid them at the last moment, I wish for nothing more than that they did not notice me. My heart pounds with the threatening dread of hearing a loud shout of “Hello Corinna!” that my favorite teachers, my parents’ new friends, or some teenagers from the neighborhood use which serves to announce their approach; if I escape without being addressed by them, I get weak-kneed with relief.

I have lost my self-confidence and belong to the unpopular fringe figures of my age group. I’m not pretty, I’m not cool or funny, and many people don’t even seem to notice I’m there. During breaks between lessons, hardly anyone ever comes to talk to me, and when everyone arranges to go out or to sports, I’m not even asked. So I usually spend the afternoons alone. Unlike before, I have to be active if I want to have contact. But I still can’t stand my new surroundings and mourn my happy childhood days. Since I realized that that home is irretrievable, I feel cut off from my origins, and lonely sitting between it and my current home as if sitting between two unreachable chairs. But while the present seems claustrophobic and closed – the oppressive routine at school and the monotonous circles that my parents draw with me in and around Grounds – the future seems desolately open, splayed open full of question marks, and I have no idea how to imagine my life might one day look like. At the moment, it offers me little variety to look forward to: winter vacations in the mountains or visits from my old home.

When I see my old friends again after a long time, however, I’m forced to notice that they are also growing up, into a lively adolescence with all its ups and downs, where I can’t go with them. Cheerful, in new outfits, with the latest pop music and stories of first parties, kisses with the opposite sex, and skipped school lessons, they show up at my parents’ place. I listen to them in silence, and sometimes I invent my own wild experiences to keep up with them. The fact that I myself am expensively and fashionably dressed is a façade that, precisely because I don’t fit in, exposes me rather than helps me. And I almost wish these friends hadn’t come and shown me that I have lost closeness to them over the distance, that their lives have gone on without me, while I myself have not built up any new sustainable friendships, indeed that I am even losing them as friends, because what connects us has passed and has become uninteresting for them. They are looking ahead, and although they haven’t rejected me, they don’t take me with them into their world either. When these weekends end and we literally close the door between us, I am completely exhausted, deeply sad, abandoned, and instead of showing this, I withdraw and indulge in self-destructive scratching fits.

Twice I try to drop anchor in my new environment and befriend girls from my class. We spend an intense, happy time, my skin relaxes, I warm up and dare to touch the beautiful sides of life again, when we go to the local carnival all dressed up as if on a great, imponderable adventure, or bike to the river for ice cream, chatting about our teachers and classmates, about their blue nail polish and my torn jeans. But then Paula changes schools, and not long after Karin moves to a faraway city, and I’m left alone, saddened by the loss and unable to join the clique of the popular kids. I would like to belong, but I would not like to be like them. I would like them to be like me, even though I often don’t like myself and would rather be someone else.

During a student exchange with our French sister city, a pretty, lively French girl stays with us for ten days, and suddenly I’m one of the cool kids, invited to all the parties and I feel important. “Corinna, are you coming to our place tonight?” – with these words, my classmates pounce on me as soon as I enter the school building in the morning with my guest. The stars of the school, who previously never gave me a second glance, talk and joke with me – it’s intoxicating and I merge into our international group. They don’t do it anymore after Estelle has gone home.

The return visit to her takes all my strength. During the night bus ride, I completely scratch myself raw, lymph running down my torso as we cross the French border, and the guilty conscience that I have for not having been able to control myself and having to present myself to strangers in this state turns my stomach, while the others listen to music and chat. The tension that comes from the burn of my open wounds, giving in to the itching and scratching them bloody, robs me of sleep during the following nights, while during the day it hangs over my joy at how easygoing and eager my host family is, how beautiful southern France is, and how much fun even I have at our parties. In the unfamiliar bathroom, with a tub without a shower-head that five family members besides me use, it took me twice as long as at home to wash and apply lotion, but I only have a few minutes each day. In the evening, for the first time in my life, I go to bed unshowered, feeling filthy in the sick shell that I have not been able to wash away. Overwhelmed by the living conditions and struck to the core by the honest words of my host mother: “You are still very young!” I return home seeking protection.

Here too, my life is different from that of my peers. While their days revolve around boys and girls, respectively, and the latest fashion and music, I have worries that keep me trapped in my pitiful, weak state and tied to my fate. Thoughts bang around in my head about one boy or another, what I wear, and what music I like. But only in my head and always behind the curtain that is my skin, dictating my daily situation. Theoretically, I know the fashion, but practically, I choose with experience and knowledge clothes that gently caress my skin, rather than just irritating it; my dreams of the opposite sex are equally gentle and I rule out what I could not bear: another human being touching my inflamed skin, a warm, wet body approaching mine, pressing me and making me sweat.

There is a boy in my class whom I like very much. Carl is also different than most, but in a happy, detached way. He does not seem to care what others think about him; he is who he is, and that impresses me. Yet never do I dare approach him, nor do I invite him to approach me. Instead, I come to the idea that by withdrawing from him, even pushing him away with hurtful remarks, he should realize that I feel something for him. Thanks to his big heart, we talk and laugh together from time to time, I feel like I am in heaven when he comes up to me with his arms spread theatrically and calls out: “Corinna, the apple of my eye!” and I shake with laughter, he’s so funny in those moments. Afterwards, however, I keep my distance even more clearly, because I am waiting for the redemptive reaction from him that is supposed to bring us closer together, until one day he has a girlfriend and disappears from my reach for the next few years.

Because I am either unable to live out my desires or if I live them out internally, I don’t have anyone to discuss them with and give them wings, and at the same time to escape my daily monotony, the long mornings at school and the even longer afternoons at home, I crawl into fiction. I read all the Karl May books and lose myself in their ideal, faraway worlds. I become so engrossed in them, with my own ideas of life so interwoven with the experiences of the characters that I can hardly distinguish whether it is this world or that one that is the real one. And only for a few events am I willing to interrupt my reading.

One is my weekly piano lesson; for years I have been in love with my teacher, who is unattainable to me, and I live from one encounter with him to the next. The six days when I don’t see him become endless torment to me and yet make me think of nothing but him. So mature and adult does he seem to me with his twenty-five years, so manly, that my heart could not pass him by even if I wanted to. I yearn for and seek out signs of his affection, registering every touch, every word spoken in person between us and interpreting it. If my interpretation is positive, I get even more involved in my fantasies, I don’t let go of my beloved teacher for a second, as if I had to hold him and protect him, and I caress him – a man I call by his last name – with tender words and gestures. I want to show him that I am not the immature teenager that I fear he thinks I am. I hope that he notices my longing for him, and yet I am afraid of it. When I can’t stand it anymore, I dial his number in the evening to hear his voice when he speaks his name so melodically into the phone: “Meyerling.” I remain breathlessly silent until his clearly annoyed voice calls out: “Who is it?” and I quickly hang up. Week after week, I wait for developments that never materialize, then feel deeply disappointed