Dörte Maack was 25 years old when she is told that she will go blind. “I’m the last person to get such a shitty disease”, the acrobat and street artist thought. She traveled as far as China hoping for a cure.
From: Wie man aus Trümmern ein Schloss baut. Die Geschichte meines Erblindens und wie ich wieder Lebensfreude fand (How to build a castle from ruins. The story of my blindness and how I regained my joy of life) by Dörte Maack
Dr. Gröger explained to mother and me in a serious and calm manner that retinitis pigmentosa is a very rare retinal degenerative disease. It is a genetic disease which is progressive and not curable. After a few long moments, my first thought was: “Shit, now I’m going blind.” The next thing I thought was: “That’s nonsense! There is no disease that cannot be treated. If that’s the case in Germany, there is still the rest of the world.”
The professor for ophthalmology of the University Hospital in Hamburg confirmed Dr. Gröger’s diagnosis. He explained that retinitis pigmentosa is a severe eye disease that results in the destruction of the retina, the tissue at the posterior end of the eye. This still incurable disease is one of the most frequent causes of vision loss in mid-adulthood and affects about one in 5,000 people. Unlike in the case of glaucoma, there are no specialist clinics that can hinder an impeding blindness. For further clarifications, my ex-boyfriend Felix and my parents drove to Tübingen. At the local eye clinic with a focus on retinal diseases, my results were confirmed.
“They tell you that you have a very rare incurable hereditary disease which cannot be confirmed by the genetic test. Then they tell you that they don’t have any therapy and that they don’t know when exactly you will be fully blind!”, I summarize the result full of anger. I never would’ve thought that such a mess even exists and even less that I would experience such incredible shit. I could’ve blown up this whole lousy eye clinic!
With this unbridled anger within me, I doubted everything the doctors told me. Insecure and disoriented, I began my search. Again and again, I found doctors and non-medical practitioners who promised me hope for a cure. Nobody paid attention to the exact diagnosis, they all saw “the whole human”. An eye specialist in Bavaria prescribed me so many globules, powders, tinctures and ampoules that you could fill a whole removal box with them.
At that time, at the beginning of the 1990s, it was popular to see deeper meanings in illnesses. You could read in many books that eye diseases meant that the affected person closes their eyes to something or doesn’t want to see something. If you resolve the inner conflict, the eye complaints will also disappear, according to the thesis. I was going blind, so it had to be pretty dark and horrible truths that I was closing my eyes to. At some point, I’ve had enough of the theory that every disease had a deeper underlying mental cause.
Miracle Cure should help
I was about to drown and I was clutching at any straw that I would normally have smiled over. Finally, only a miracle could help me. I was astonished at how many so-called spiritual healers offered exactly such miracles: there were entire catalogues filled with them. First, I visited a healer in Berlin who was also a doctor. That sounded respectable. Outside practice opening hours, he and his assistant laid his hand on my eyes for ten minutes while they continued chatting cheerfully. It cost one hundred bucks and didn’t help at all.
On a remote farm in a village in Northern Germany, I had an appointment with a Philippian healer. A whole lot of people in search of healing were waiting in a dark bedroom in rustic oak. Low German farmers sat next to punk girls from Hamburg. The go-getting farmer’s wife entertained all of us with some anecdotes: “Yesterday, a family came with a son. He had a brain tumour. He couldn’t help him either. They cried a lot.“ The treatment took place in the front room on a daybed. The healer asked me to close my eyes and relax. He explained that with the help of psychic surgery, he would take my eyes out of their sockets, clean them thoroughly and put them in again. Done.
So many people knew someone who knew someone who was cured by a miracle healer, and I was thankful for every tip. Isn’t there so much more between earth and heaven that we can imagine? Somebody told me about a Spanish professor for parapsychology. I flew to Barcelona and spent a relaxing weekend doing lots of meditation and praying together with his students in a beautiful house with a garden full of flowers. That was pleasant, but it didn’t cure my eyes.
About many of my therapy attempts, I still ask myself today: “How can someone be so stupid?” At the same time, I know that you can be so stupid when you have your back against the wall. Almost everyone could be so stupid and grasp for the last straw when you’re afraid of drowning, however senseless it might be.
The more I became aware that the eye specialists might be right after all, the more desperate I became. Who could I be when I’m blind?
Blind People are Helpless, Lonely, Ugly and Useless.
I didn’t know any blind person, I didn’t know any person with a disability. I grew up with the pictures of campaign for children with problems and the TV spot “Polio is bitter, oral vaccination is sweet”. These pictures of obviously very pitiful people nourished my prejudices about disabled people: blind people are helpless, lonely, ugly and useless. In my imagination, I saw blind adults who were looked after like children by other adults. They wore old-fashioned clothes in muted colours that their mothers chose for them and had practical haircuts. They worked in disabled people’s workshops. Someone else did the groceries, cooked and cleaned for them. They didn’t travel and their hobbies were something very boring. They didn’t have a love life and not an own family.
I was the victim of my own ableist prejudices. I knew that I couldn’t live like this, because that didn’t seem like a life worth living to me. Then I’d rather be dead.
I decided to fly to China and get treatment in a clinic for traditional Chinese medicine. I flew from Hamburg to Amsterdam and then took the plane to Beijing. In the narrow row next to me sat two young German business travellers. We got into a conversation and of course at some point, they wanted to know: “What are you doing in China?”
I didn’t feel like telling them about me going blind, my hope and the eye clinic in Beijing and all that. I explained: “I’m travelling privately, I just want to travel across the country.”
“You are going to China on your own for three months?”, they asked in astonishment. In the 90s, China was a country that hardly anyone visited as a tourist.
In the first night in the clinic, I didn’t sleep a lot. The jet lag kept me wide awake for hours, it was afternoon in Germany after all. I was so awake that I couldn’t stay in bed. I walked along the corridor, circled the inner courtyard and finally found a door leading outside. I sat in the mild night under the Chinese sky for a while. I was so far from home, farther away than ever.
I had spent about three weeks in the eye clinic when Pinyin Zhōngqiūjié, the traditional Moon Festival was celebrated. The Mid-Autumn Festival is one of the most important festivals in the year for the Chinese people and always takes place at full moon. One of the traditions are the moon cakes with sweet or salty filling which are the size of the palm of your hand.
On the morning of the Moon Festival, I had breakfast on my own in a small breakfast room as always. There was a colourful tin full of moon cakes next to my tray. It turned out that it was a present from the women of the kitchen. That was so nice, but I was only happy for a short moment. Although I knew so little about the Moon Festival, I immediately realized: I had nobody here with whom I could share all these tasty cakes. This thought brought a lump to my throat.
The Moon Festival was a Happy Festival for Happy People
Laughing and dancing Chinese people with musical instruments were represented on the tin. The Moon Festival was a happy festival for happy people. But for those who weren’t happy on that day, the festival showed them all their misfortune. The festival of abundance made it impossible for me to hide my lack of fulfillment, affiliation and security from myself. I always wish for someone I can share my moon cakes with. I always wish for someone who believes in me. I always wish for someone who needs my love.
Nothing was fine: the treatment here wouldn’t help much and I had no idea what to live on in the future and with whom. There I was, 28 years old, wearing a silly striped hospital pajama, ugly, poor, lonely, useless and almost blind. Here in Beijing, I really hit rock bottom.
The weeks went by and my eyes only got slightly better, but my time in Beijing wasn’t that bad after all. I was the only European in the clinic, a real attraction. In the morning, I met many patients who were accommodated in dorms in shacks on the hospital premises. Many of them did Qìgōng and I joined them. Jokingly, they called my movements “Déguó gōng“, German gōng.
Flat Mate Martin Becomes my Confidant
After several months spent in the clinic, I slowly started thinking about what is important in my life. I want a happy relationship, a family, children and good friends. I want a professional career, to do what I can and what brings me joy. I want to do something that helps others. Those were my answers to the essential questions of life. How I could manage that – blindly – I didn’t know, but I knew what I wanted once more.
Nevertheless, the time after returning to Germany wasn’t easy. In these moments, it helps a lot if there’s someone who sees the situation of the other, not their own insecurity. It helps so much, when someone listens to you for a long time and hands you tissues when you have to cry. It helps so much when there’s someone who just fools around with you although your situation is actually extremely sad. It helps when someone hands you things that you can throw against the wall when you’re angry. It helps when there’s someone in these moments who doesn’t want to change or control you, who just lets you be who you are. It helps when there is someone who understands: “I know, it hurts a lot and it will continue to hurt. Someday, it will get better and maybe be over. Someday.”
My flat mate Martin did all that for me. He suggested going to the Baltic Sea together. It was a cloudy day in March. We went for a long walk on the cold sandy beach. We were holding hands. That was useful because like this, I didn’t have to concentrate on where I was going. We talked little and remained silent a lot. We went to an old-fashioned café on the promenade. There were many couples around us, they were all at retirement age. We ate cake and drank filter coffee. We talked and we remained silent. I didn’t feel better after our trip, but at least I went outside.
It got warmer in the next days and the sun was shining. Martin and I went to the river Elbe. We sat in the sun leaning against a wall. We talked more and remained silent less. On our way back we walked through the lively city of Ottensen holding hands and drank cappuccino in a street café. We even laughed once.
In the following weeks, our joint activities got more and more. We walked through the city, paddled on the Alster canals. We tried out qìgōng and yoga, sat in cafés and talked a lot. We went to the cinema and Martin quietly described the plot to me when it couldn’t be revealed to me from the dialogues. We went to my friends’ parties together, danced and laughed. Martin bought himself a pair of inline skates and I got my old skates from the attic. With our friends, we often drove to the surrounding area for long skate tours. Martin and me always held hands and I felt very safe. I could do anything with someone holding my hand who watched me. I could go wherever and whenever I wanted. I could dance, skate, climb, everything. I had so much fun and felt more and more alive. Martin and I didn’t have to make arrangements for him to pick me up or bring me home, he was always there anyways.
“I’m not in love with you and I won’t fall in love with you”, I told Martin in our shared kitchen. I got the idea that he might want to be more for me than a nice flat mate. We did so much together, had so much fun. My limited vision didn’t seem to play a role anymore in all that. Martin didn’t show any pity for me, he didn’t have the helpers’ syndrome. He didn’t make a lot of fuss about my impaired vision. He helped when necessary, warned me about steps and sometimes described things to me. He cared about me and for me without taking up much space. That was great for me, but maybe he was in love with me and I only used him as a guide dog? That would be terrible and I didn’t want that. I urgently had to clear up the situation unequivocally. Martin reacted completely baffled to my statement. Confused, he told me: „Don’t worry. I’m not in love with you either.”
The problem was settled and now we could spend time together without any weird thoughts. There were no unspoken words left. At the time, Martin was working as a photojournalist and mainly took pictures of theater plays and dance theater stagings. In the evenings, he developed his pictures in the laboratory until late into the night. During the day he was mostly free. We still walked around holding hands and couldn’t get enough of each other. Anyone who didn’t know us wouldn’t have believed that we were a couple.
Spring came and I met a pretty hot guy on a party in May, a student from Brazil. Miguel was exactly my type, I just couldn’t have failed to notice him. But how was I supposed to arrange a next date with him?
“How am I supposed to find him in an unfamiliar place? Could you come with me?”, I asked Martin.
“Nah… I don’t feel like it”, he rejected. But why not? We were just friends, he wasn’t in love with me, and he usually liked parties, too. A few days later, Martin’s ex-girlfriend Martina visited him in Hamburg, and we went to a party in Stadtpark that Miguel invited me to. I did myself up: skin-tight orange jeans, old black leather jacket over a black spaghetti strap top and silver jewelry. Miguel would like that. Martina was bewildered when Martin put his arm around me in the dark alleys, but then she understood that I had to be protected because I didn’t see that much. The hot Brazilian guy didn’t show up after all and somehow, I didn’t even care. We had a very nice evening without him.
Soon after, I saw something in the morning that suddenly changed the whole situation for me. There was a woman sitting in Martin’s bed with a cup of coffee in her hand. “Good morning Dörte”, she greeted me joyfully. It was Silke who had lived in my room when I was in China. She was a long-legged musical dancer with long blond hair, very nice and funny. What was she doing there?! This doesn’t work at all. I asked Martin about her in passing and found out that it was nothing serious. Not yet. Without even thinking about it one second, I showered Martin with all the charm that I had in the following days. I had champagne in my blood and was flirting as much as I could. Martin didn’t know what was happening and was very careful with me. I couldn’t stop myself, even if I would’ve wanted to. The attraction that I felt was like a soft wave, a force of nature that I couldn’t fight off. Discussions, tactics and maneuvers were useless now.
The next weekend, we went to a cookery course for macrobiotics together which was part of my shiatsu training. “Ugh, don’t do that. That’s unhygienic!”, another meticulous participant yelled disgustedly when I wanted to taste the soup. I did wash the little spoon, but not long enough in his opinion. “I’m not unhygienic. I also kiss people”, I said laughing. That was a lie. I hadn’t kissed anyone in a long time. The people in this cookery course were unpleasantly grim. However, we were doing something really nice: cooking tasty food. Martin was the only one who wasn’t grim at all. He was joking around and acting really cute. After the cookery course, we went to the small park at Kaiser-Friedrich-Ufer and laid in the grass under a chestnut tree. There was still some time until Martin had to leave for his photo session. I was lying on my stomach when suddenly, something was touching my back softly. That felt good.
“What’s that?”, I asked quietly.
“It’s tiny bugs”, Martin whispered.
The bugs crawled from my back over my arms, back to my back and my butt. That felt tingly and exciting. He used the small fruits of the chestnut tree which rolled over my body in his hands. Soft vibrations electrified me and the fluttering butterflied in my body enchanted my completely.
The next morning, I stood in the kitchen barefoot wearing my blue strap dress and prepared myself a tea. Martin entered the kitchen and sat down at the table. Our shoddy old shared kitchen was sparkling. My heart was beating faster. I sat down on his lap, feeling magically attracted by him and then, the universe held its breath. We kissed. During this long, soft kiss I realized that everything had been decided. I knew that Martin knew as well. We belonged together.
I had been fighting against the loss of sight for five years now and I had lost the fight, but I had won my life back. My 30th birthday was coming up and I finally felt like celebrating again. So many different people who had accompanied me on my way were guests on my birthday party and I had every reason to dance with them.
Training with the White Cane
“Where am I, where am I going and what is the best way to get there?” These were now some practical and daily questions for me. By now, I couldn’t cross the street safely on my own during the day. Yearningly, I waited for the orientation and mobility training with the white cane. It actually makes sense to use a white cane at an early stage of retinitis pigmentosa because of the night blindness and the limited field of vision. Many patients put this off for a long time like me for fear of stigmatization and shame. For a long time, I preferred tripping over curbs to outing myself as a disabled person. But there was also something good about my hesitancy: liked the cane from the beginning, when I finally decided in favor of it.
Ben, my mobility trainer, picked me up at home. He was just the right person for me: a young sport scientist with ripped jeans and a casual cap who operated on equal terms. I didn’t feel like he treated me like a helpless nursing case, which I had feared.
At the end of the eighty individual lessons of the mobility training, I had to pass the acid test, the so-called Drop-off. Ben drove me across Hamburg, dropped me off somewhere and told me a meeting point. The rules said that I wasn’t allowed to let anyone lead me and I couldn’t call a taxi. I should find my way through the city on my own. I was standing at a street and sorted all the noise highly concentrated: passengers, shopping carts of a supermarket, road traffic, busses and somewhere in the back an underground train. I asked somebody: “Excuse me, which is the next train station and could you describe the way there to me please?” “Don’t you want me to accompany you there quickly?”, was the answer.
The people were so much nicer than I had thought. But it didn’t help me this time, I had to do it without help. I finally found the way to the train station, drove across the city, got onto a bus and asked for the way to the agreed café when I got off. I did it: I was now a qualified user of the white cane.
Third Main Exam in Athletics
I had let my studies slide for many semesters, first due to the success with the Kirschkern company, a children’s theater that I organized with two friends, and later because I had to learn to live my loss of sight. But now I thought: “If I want to make progress professionally, it is best to have a university degree.” If I wanted to restart my studies though, it should be in a subject that I really wanted to do. Initially, the subject that I would’ve loved to study was sports. However, the numerus clausus in Hamburg was extremely high. I had no chance. Until I was a “case of hardship” due to my diagnosis with retinitis pigmentosa.
I stole the thunder of the people in the authority who doubted me with a hand-written letter filled with passion and good arguments: “Of course it makes sense that a woman with a progressive eye disorder studies sports to become a teacher.” I could for example work in the field of movement therapy with children with multiple disabilities or in the field of rehabilitation. It wasn’t really my aim to become a teacher. But I had no other opportunity because I had already passed almost all the necessary exams for English studies and pedagogic and I could only combine the two subjects with sports as my main subject in a teacher training program. I admit that it doesn’t sound very reasonable to study sports when you’re blind, but I never regretted this decision, the opposite was the case. Sports was like a revelation for me in contrast to the anonymous, dull humanities.
The first two main exams before the Commission of the teacher’s examination office were in acrobatics and dancing. That was incredibly easy because I had more than enough ability from the circus school.
I had to do my third main exam in athletics and that wasn’t easy at all, opposed to acrobatics and dancing. My hurdling would be assessed in this exam. I already had so many special arrangements and didn’t want to ask for an alternative again. My lecturer and my fellow students were of the opinion that it was possible to complete a hurdle race when you’re blind, or at least they wanted to know whether it was possible. So, let’s go. The requirement for a successful hurdle race was a hundred percent exact technique, but how was I supposed to know where to run and when to jump? We tried everything: We wrapped red and white barrier tape around foam pipes, but it could barely see that. We laid out a track with mats. I ran towards noises, ran holding the hand of a fellow student and was led by a rope. In the end, we realized: The rhythm is decisive.
I had to be able to master this rhythm in my sleep and above all, blindly. The end of the semester was approaching and with it came the day of the exam with my blind hurdle race. I didn’t have any time to think about what the examining board would think about this undertaking, I just wanted to concentrate on my performance: Your mindset it what matters when it comes to winning or losing. When it was my turn, I rand on command: “Run, run, run, jump, run, run, run, jump, run, run, run, jump…”, that was the rhythm in my head. And the result? I didn’t trip over any hurdle, my technique was perfect anyways after several months of training. The examining board thought that it was an A. Of course, this didn’t change anything for my career, but it did for my self-confidence.
An Addition to the Family with Character
In the year that we moved to the outskirts of Hamburg, Martin and I got an addition to our family. Leo, a beautiful black flat-coated retriever moved in with us. “A guide dog”, my eye specialist wrote on the prescription which I sent to my health insurance together with the cost estimate from the guide dog trainer. Ute Luhmann, the guide dog trainer got to know me some time ago and said: “You need a lively dog. A stick in the mud would be a punishment for you.”
Leo wasn’t just lively, he was also assertive and had a strong character. You may pet me, but I won’t work for you, he seemed to want to tell me during the first few days. “You have to show him who’s the boss, otherwise it won’t work”, Ute said. When he did something wrong, I should give him a quick and painful pinch into his side and say “no” angrily. Oh dear, did I really have to do that? I usually wouldn’t harm a fly.
I had a hard time being resolute and strict so that Ute already thought that the training would fail. When Leo didn’t listen to me when running free but continued to lay on the field and chew on wind fallen fruit, I’ve had enough. Furiously, I approached him with Ute’s directions, packed the stubborn dog at his collar and dragged him across the field back to the footpath while constantly saying “no, no, no…”.
“Well, how did I do?”, I breathlessly asked Ute.
“I think you impressed him”, she said with a bit of admiration.
My multi-faceted guide dog worked faithfully until he was almost 13 years old when he was superseded by his younger colleague Lila, a black Labrador. Today, Leo has his grave in our garden and forever a place in my heart.
Wedding with Lightning and Thunder
Although Martin and I knew since our first kiss that we wanted to spend our lives together, it took four more years until we officially took our vows before God. It took some time until we both agreed on my ideas for the wedding reception. “It would be nice if we could have a big picnic on a meadow with the guests”, was Martin’s first idea. I imagined him in his old jeans and sloppy t-shirt with a paper cup sitting in the dandelions. I didn’t want to change anything about him, but the idea with the picnic wouldn’t happen. I had to carefully start at the beginning as Martin hadn’t worn a suit since his Holy Communion. After a long and joyful time of planning, we had the feeling that we had done everything we needed to have a nice celebration. Especially our friends, relatives and neighbors did everything they could to make it beautiful: a big decorated wreath was put on the front door and porcelain for the wedding-eve-party, a flourishing garden full of red heart-shaped balloons, a reception with champagne, a fine dinner, a home-made multi-storey cake, moving speeches, supporting shows with jugglers, people riding the unicycle, comedy, music and dance…
But even if you do everything for it to be beautiful, you can never be certain about it. Still, everything was beautiful, so beautiful! My maid of honor Sabine received me after I had already been to the hairdresser for two hours to get my hair decorated with rose blossoms and my make-up done. I put on my wedding dress, jewelry and shoes, and we waited for Martin who was supposed to pick me up with his best man Daniel. Would Martin cry when he saw me? No, he laughed. “I said so, he’s always laughing like that”, Sabine said and had to laugh as well. The church wedding took place in our big garden. Almost one hundred guests and all the neighbors came and a gospel choir was singing. In the middle of the ceremony, an intense thunderstorm surprised us: lightning struck, thunder rumbled and for some moments it was raining cats and dogs. We said “I do” and kissed passionately to the applause of our guests.
Only As in the Exam
The only thing that I still needed for my luck was my university degree. I had stacks of folders with hand-written transcripts of countless lectures and seminars on my shelves. My own handwriting was legible for anyone but me. For some subjects, I had to start from scratch if I wanted to pass the exam. I changed my focus in English from linguistics to literature. In no time at all, I worked my way through English and American literature by listening to audiobooks. I had to get piles of specialized literature recorded on audio cassettes by someone in a way that I could work with scientifically. It wasn’t very much fun to listen to ninety minutes of footnotes, but I had no other choice.
“Movement theater with blind and visually impaired people” was the title of my paper which was a combination of the two subjects in my life so far. For this final assignment, I also worked through all autobiographies of blind people that I could get my hands on. These life stories were incredibly inspiring for me: Hellen Keller from the US became a world-famous writer although she was blind and deaf. Jacques Lusseyran from France founded a resistance group as a blind teenager within the Résistance, was deported to Buchenwald and survived the concentration camp. Andy Holzer from Austria and Erik Weihenmayer from the US climbed the highest mountains in the world while being blind and have both climbed Mount Everest in the meantime. Sabriye Tenberken traveled to Tibet on her own, build a school for the blind there and later founded an academy for social entrepreneurs from all over the world in India. Verena Bentele won countless medals as a blind biathlete before she first become the Federal Representative for the Blind and later President of the biggest German social association, the VdK. If all that was possible, it should also be possible that I achieved something in my own small life.
“Excellent, we see that very rarely”, murmured an employee of the teacher’s examination office before my last oral exam. A few days later, I held my certificate in my hands, which had only As and my name on it. How could that happen? Good support from many people, luck and of course also a little bit of diligence made a productive combination. I was above all proud of the fact that I didn’t get any bonus because of my disability. The teachers’ examination office doesn’t hand out any consolation prizes. In the end, the result on the paper mattered, because I didn’t really want to work as a teacher at a school. During my internships at a normal school and a school for the blind, the 45-minute rhythm, the guidelines from the curriculum and the constant fights for discipline had put me off. I used to like school, but I didn’t learn anything because but in spite of the lessons.
An Exhibition where you can’t See Anything
I began to make a name for myself in a small niche with the topic of my final paper. I was working as a speaker for theater education with blind and visually impaired children and adolescents and wrote articles about the topic. I was now interested in anything that had to do with blindness, especially if it was something out of the ordinary. That’s why I was curious about an exhibition in Hamburg’s Speicherstadt where you were not supposed to see anything. I couldn’t imagine what to expect, not for my first visit and certainly not in the following years.
Together with six other guests, Martin and I were welcomed by a man: “Welcome to Dialogue in the Dark. My name is Bernd. IN our exhibition, you experience everything exclusively with your hands, ears and nose; just not with the eyes, because all our exhibition rooms are completely dark.”
Who was that man who put together this genius concept of “Dialogue in the Dark”? Prof. Dr. Andreas Heinecke, called Andreas by everyone, came into contact with Matthias as a young man, a journalist who lost his vision in a car accident. Andreas supported him with his work as a documentarist at Südwestfunk. Andreas had dealt with the topics “prejudices, discrimination and exclusion” for a long time already and was surprised by his own prejudices against people with a handicap during his contact with Matthias. Thanks to this encounter, the idea to switch off the light and to switch the roles came to life. The blind would see and the sighted people would be blind.
Even before I got to know Andreas, Klara took notice of me. The lively, energetic woman worked closely with Andreas and later became the manager of the Dialogue museum in Frankfurt.
“So, what else are you doing?”, she wanted to know. She was sitting at her desk, and I was crouching on the floor in front of her, keeping Leo from emptying the trashcan. We were not at eye-level, but it was still the beginning of a friendly and very successful cooperation.
Klara gave me the assignment to write a pedagogic accompanying booklet and to develop a pedagogic workshop for schools. Both approaches had already existed in earlier years, but I couldn’t fall back to that. I wrote a handout for teachers with information, ideas for games and exercises and with worksheets for all grades. It comprised eighty pages. The world still had to learn so much about the life of blind people. The workshop should give school classes insights into the life of blind and visually impaired people before visiting the exhibition, so that the experience in the dark wouldn’t just be a great fun for the pupils.
It was important to me that the workshop would be led by someone who doesn’t see anything or only little. It would be worth it to take up this challenge. I was shaking when I first stood in front of a group of people I didn’t know as a blind person. “I hope they are nice to me”, I worried every time, but they always were, without exception.
“Don’t you want to work for me permanently?”, Andreas asked me more than once. He pulled out all the stops: he invited me for a meal or a coffee to his office, praised my final paper and gave me files with his material for the idea of a “Theater in the Dark”. I was tempted and flattered but I didn’t want a permanent position. I knew that I wasn’t made for that. I’m not good at having someone constantly telling me where, what, when and how to do things. I’m not good at having a boss. However, at some point, Andreas made me an offer that I couldn’t decline. All right then, I would try and signed the contract for the position of the “pedagogic speaker”. I moved into a big office on the sixth floor of the old storehouse right next to Andreas’ corner office. It spurred me to work for other exhibitions worldwide now, to travel and to be free in terms of my content.
Nobody was Surprised that we Wanted Children
“Both lines are pink”, Martin described the test strip to me. Once again, a medical test would turn my life upside down. This time I wasn’t alone, for Martin nothing would be the same anymore either. “We’re pregnant”, I whispered and Martin hugged me tightly. We couldn’t believe it.
Eileen had incredibly thick, long and dark hair and wasn’t wrinkled at all after her birth. She enchanted us and everyone around her. “What’s up?”, Martin asked when he found me sitting in bed crying a few days after the birth.
“I’m just so happy”, I sobbed.
Many friends and relatives visited us to meet Eileen. “The people say that it is a pity that Dörte can’t see how beautiful her daughter is”, my nephew Sven told me. Although it was often inconvenient or restricted me, my blindness became normal for me. Yes, I have never seen my daughter nor my son, but I don’t have to because I know: “These are the most beautiful children in the world.”
Breastfeeding, changing the diapers, getting dressed, taking a bath, taking walks in the village with a sling or a carriage – everything seemed to be just as easy or difficult than it would have been if I could see. Touching and feeling could usually replace seeing when caring for the baby. Nevertheless, our first child turned everything upside down and was extremely demanding.
Splendor and Misery are very close to each other
Shortly after Eileen was born, Martin’s mother was diagnosed with pancreatic cancer. In spite of the shock, the sadness and although she was already very weak, we spent an unforgettable afternoon at the hospital with the baby and her. It was the first day that Eileen lied in the baby rocker for a long time and smiled and joked around. “I can’t talk very long, the baby’s diaper has to be changed again”, she rejected people calling her that day. Shortly after, my mother-in-law died in a hospice. My own mother supported us with all her heart, just as we had imagined. She took Eileen for a walk, rocked her and played with her. Four days after Eileen’s birth, my nephew’s daughter was born. Pia was my mother’s first great-grandchild. Her growing horde of grandchildren kept her really busy.
In the afternoon and the evening, my mother was always feeling well, and she was full of energy, but she wasn’t feeling good in the mornings. The doctors didn’t find a reason for that. When she was feeling increasingly bad, I drove her to the hospital and soon after, we found out for certain: she had a brain tumor. “I’m sorry for Eileen”, she told me. My brothers and I stayed calm and took all the necessary steps, although we were deeply shocked at first about the anonymous activity in the hospital and the helplessness of the doctors. There was no hope left for my mother on the cancer ward and Eileen and Pia weren’t allowed to visit my mother there. At Whitsun, I decided in a hurry to get her transferred to a hospice.
It was the right decision because here she was cared for lovingly and could spend some hours of the last days of her life undisturbed with her family. When she wasn’t able to speak anymore, she still spiritedly reacted to Eileen’s and Pia’s calls when they were allowed to sit in her bed. New beginnings and parting, splendor and misery were so close to each other. It hurt so much that my children couldn’t grow up with my wonderful mother and not with Martin’s mother either. The relationship between me and mother was so close that to this day, I don’t have the feeling that I’ve lost her forever.
Children and Career
Our son was born a few days before my fortieth birthday. He didn’t only make the birth easy for me, he was a very relaxed baby in general that slept a lot. Martin had worked in a small IT company that knew how to exploit him as a cash cow for the last few years until utter exhaustion. Now he was happy to be able to benefit from the new regulation on parental allowance. He took fourteen months of parental leave while I would go back to work bringing my breast pump. During the first months as a working mum with two children I only worked in Hamburg except for an international meeting for “Dialogue in the Dark” in Israel. In fall, we went to London with a big team.
A few years later, I received a surprising request once again. The Traning Academy for Economics was looking for a presenter for a conference on inclusion and inquired at “Dialogue in the Dark”. “We don’t do things like this”, Angela commented the request. Of course, she was right: the presentation of events wasn’t part of our portfolio. “I would love to try it”, I said, and she left me to it. What was that quote by Pippi Longstocking again? “I never tried that before, so I’m quite sure that I can do it.” True, this motto had already helped me several times, but this wasn’t about some child’s play but about an economic congress with two hundred participants, specialist lectures from renowned scientists and panel discussions. It took place in the conference center close to Airbus in Finkenwerder. I had to prepare, so: “Run, run, run, jump!”
Thomas, a journalist and media trainer who completed his training for team development with me, seemed to be a suitable coach to me. He knew what was important in panel discussions, and I was thankful for his expertise. We meticulously planned the opening question, further questions and the final question. Besides coaching with Thomas and my own research on the Internet on the subject of the event “Professional inclusion of people with disabilities”, I met Manfred Otto-Albrecht, my client, for a detailed briefing. We talked about the course of the event, the background and goals of all the speakers and panelists. I took the further steps of my preparation completely intuitive.
I wrote to all the participants and made appointments with them for preliminary talks on the phone. I wanted to get to know the people who would be on stage beforehand especially because I wouldn’t be able to see them. In fact, I didn’t only learn a lot with regard to content, but I also got an impression about the energy that somebody talked about their topic. I realized that there was a real passion in some speakers for some aspects. With the help of the combination of all the factual, professional and emotional information I created my first presentation guideline. I couldn’t anticipate yet that this procedure would accompany me through the years of more than a hundred presentations.
Looking back at the complete story of my blindness today, there’s not much that happened very differently from what I wished for before my diagnosis. Life didn’t just ignore my own small plans but just interpreted them in its own special way. As a whole, my life even got more beautiful and fulfilling than I could’ve imagined myself. At first, my blindness only seemed to leave ruins: my career, my relationship, my plans for the future, my self-confidence and my self-esteem, everything was broken. But I had the chance to rebuild everything step by step: Finally, I could build a castle from ruins.
Today, Dörte Maack works as a presenter, speaker and coach. She lives near Hamburg with her husband, her two children and the guide dog. She wrote a book about the mental overcoming of retinitis pigmentosa: Wie man aus Trümmern ein Schloss baut. Die Geschichte meines Erblindens und wie ich wieder Lebensfreude fand (How to build a castle from ruins. The story of my blindness and how I regained my joy of life), ©Patmos Verlag of the Schwabenverlag AG, Ostfildern 2020. The text above is an excerpt from the book.