- Sven has a dream. Once in his life he wants to walk the Camino de Santiago - the Way of St. James. But that seems impossible, Sven has Usher syndrome, a disease which slowly, inexorably robs him of hearing and vision. Profoundly deaf and completely blind since 2010, he can only communicate using a special hearing aid in the spoken language. A hearing aid does not distinguish the sounds - they flow, unfiltered to him - only helpful if Sven's environment is calm and silent and even then it brings exhaustion and headaches. He mainly speaks via tactile gestures, forming words and letters using his hands. He is totally dependent upon the help of his specially trained assistants. Sven has to entrust himself to his assistants, because although he is their "boss", he can't fully perceive his surroundings. They are his eyes and his ears. They guide him, describe his surroundings and translate every communication with the outside world for him. There are less than 50 trained Deafblind Assistants in Germany. As assistant, Almuth learns of Sven's dream to wander the Camino de Santiago, she offers to accompany him on the 800 kilometres. Sven can hardly believe it. Immediately he prepares for the journey of his life. He plans his trip together with Almuth over two years. Seven assistants will alternate his care. He has worked with 3 of this all female crew before - he barely knows the rest. In the middle of April, after much preparation, the journey begins. Just a few days in this alien environment Sven begins to behave aggressively. The mood shifts dramatically from romantic optimism to a dark, furious disappointment. Filmmaker Susanne Bohlmann accompanies the group along the entire six weeks through Spain, recording the frustrating struggle between Sven and his companions. All want to help, but are attacked, pushed down and away. The demons of his past and disability break out of him and make the journey a nightmare for everyone. Sven's physical condition is also deteriorating. His knees can no longer withstand the unfamiliar terrain. Sven has to go to the hospital and delays the walk for several days. He feels more and more imprisoned and isolated. The Way of St. James disappears under his feet. He only counts the miles and every step is an ordeal. Gradually, the assistants rotate and return home with the feeling of failure, disappointment and anger. Sven's Camino is not at all the heroic journey the director had hoped for, yet it gives an intimate glimpse into the world of a deaf-blind man, his desire for freedom, independence and self-determination.—Christopher Hawkins
- Deaf-blind Sven has decided to walk the 800 km Camino de Santiago. He wants to prove himself to everyone but he quickly comes to his physical and mental limits. Now a bitter power-struggle with his own Assistants plagues the hero's mission.—Christopher Hawkins
- My vision was to immerse myself in Sven's world. To feel what he feels, to see what he sees - to explore, visualize, and understand his imagination. The test shoot went well. Of course, we were very focused on the technical and organizational side of the shoot. Our protagonists moved constantly and we had to follow, run -after and keep-up with minimal equipment. And of course we had to get Sven's trust. That was not easy, because how do you trust someone who you do not know, whom you cannot look in the eye and whose voice is distorted. This would play an even bigger role on the Camino de Santiago. Almuth, Sabine and Silke wanted to accompany Sven on the Camino de Santiago, along with Manuela and 3 hearing-impaired helpers: Katja, Antje and Iris. There should always be three assistants with Sven and after 7-10 days, the team should completely refresh. We found some wonderful sponsors to help us shoot. Nevertheless, we could not organize the whole six weeks - so our plan was to document the first and the last 7 days. By the end everything would be different ...
In April it finally started. Four of us made our way to Rottweil and Sven. He had already packed and was accompanied by Sabine, one of his closest assistants. She had to say goodbye as she canceled the trip at short notice because her father got sick and she had to be with him. Sabine's parents are both deaf-blind - so their whole life was already determined by the disability. In any case, Sven had found a replacement, which was not so easy, because deaf-blind assistants (DBA) are rare in Germany and they had to be ready to assist a deaf-blind person in Spain for so long.
Buen Camino On the morning of departure there was a big farewell breakfast with many of Sven's assistants, the mayor of Rottweil and some journalists. A wonderful excitement was in the air. Then we started south to St. Jean Pied de Port in France. Sven's accommodation was picturesque. When he arrived, Almuth led him across the grounds of a quaint farmhouse and into his room, which was in a rose-covered outbuilding. Sven felt his way through the room - where is the bed, where is the door and window and where is the bathroom? Sven had to do this procedure in every new room. He had to remember every detail; because it can happen that he wakes up in the middle of the night and does not know where he is. Every room is the same for him - dark and quiet.
The next day we started the first stage. It went uphill steeply. Sven was incredibly fast - we overtook every pilgrim who walked in front of us. Time and again, Silke tried to explain to him how fast we are and how slow the others were - she wanted to get him to back down a gear. But Sven was obsessed - he went uphill - downhill - made few breaks and was always faster than the schedule estimated. We struggled to keep up, because Sven had specifically asked that we not stop him or that he would not wait for us. Nature's panorama in which we walked was breath-taking. But again and again I realized that Sven went a different way. For him, the ground under his feet was the most important reference to his surroundings. When we arrived at the summit, the reaction from the DBAs was a "wow" and "ahh" and they described to Sven the wonderful view with snow-capped peaks and birds of prey circling weightlessly in the steel blue sky. I asked Sven what the picture in his head looks like - where are the mountains for him, where are the meadows, valleys and forests? But Sven had no picture - he could not describe his world to me. Maybe he was just too focused on his body, struggling with an extraordinary effort.
The beginning of the end After Roncesvalles it descended 3 kilometres steeply downhill - everywhere were smaller rocks and roots on the way. I had a lot of trouble, because my knees hurt after only a few hundred metres. I walked with the camera behind Sven - had to be incredibly careful, because the way was a single track. But Sven raced down the mountain and Almuth had to ask him several times to take a break. I saw how his feet kept falling into the void or being surprised by a big stone. I could barely look because I thought at any moment the ankle would give or tear the sinew. But when he arrived downstairs, he said brightly, "No problem - that was great fun!"
Of course, I was happy for Sven, but I also had big doubts - so far I had not penetrated a millimetre in Sven's world - he was very closed - did not want to show any weaknesses or describe any feelings or fantasies. "That's going to be a short film," I thought. But on the fifth day of hiking I sensed a change in Sven's team. Almuth, Katja and Silke seemed tense and also Sven seemed somehow strange. He asked me to lead him away from the group a few feet because he wanted to talk to me alone. I did this and he asked me if the DBAs could see his mouth, because they were good lip readers. I was irritated. What was going on? Sven told me that there were initial problems with the assistants - they would be celebrating and getting drunk when he was in bed. That was absurd. The three women were, in my opinion, incredibly sweet, selfless and responsible. That could not be right. But I listened to Sven's version and we moved on. On the last 5 kilometres - Katja was Sven's assistant - Silke stayed behind. Katja asked Sven if he wanted to wait and he reacted with a rage. He did not want to wait and certainly not for Silke. If she cannot do it anymore, that's her problem. Katja was disturbed but led Sven further into a small Spanish village - the stage destination for today. Sven wanted to go directly to the top of a mountain to pick up his walking stamps but Katja saw that the church was closed and led Sven to an information poster. "Ohh," said Sven angrily, "now the DBA decides!" Everyone looked at each other confused. That was the beginning...
Then came the last day of hiking, which we accompanied as a film crew - tomorrow we would travel back to Cologne to film the arrival in Santiago de Compostela in four weeks. But what if Sven cannot last and no one arrives there? Something was in the air; that much was clear. "I cannot leave here!" I said to my film crew. I have to stay, otherwise we cannot tell the whole story. But organizationally and financially, that was not easy at all, I prepared the ground; my husband and son, supported me in my project. On the day of departure, my cameraman drove me to Sven's accommodation. I had a queasy feeling. Barely arrived, Silke came to us trembling and with broken eyes. "I take your place - I have to get out of here - otherwise I'll be in the hospital tomorrow - I have a pulse of 200!" What happened? Silke told me in an interview that there was only dispute for days, Sven constantly criticized the assistants aggressively and picked, irrationally on every little thing. I got to know Silke as a strong, sporty and emotionally stable woman. She is a mother, wife and works in addition to her work as a DBA in a hospice. But this woman, now sitting in front of me, was pale, with drooping shoulders; intimidated and frightened. So Silke secured my place in the FIlm Team car. I packed the most essential equipment, "Now, I'm a one-man team!". In the next room the argument with Sven continued. Katja sat opposite the cursing Sven and cried, which Sven, of course, did not notice. Almuth spoke to him in her warm, gentle voice.
It took some time before I even understood what this discussion was about. After a long day of hiking, Sven and the others sat and talked with wine and some food in the living room of the accommodation. Then Sven went to bed and went upstairs to his room. As soon as he reached the top, he heard the others in the living room laughing and talking wildly. Then he groped his way back into the living room and shouted at the women. Now he realized that they just wanted to get rid of him to party and have fun. Almuth and Katja were shocked - they talked to him (of course only one at a time and very slowly) and tried to explain to him that it had nothing to do with him but of course they needed, after 12 hours walk and assistance, some relaxation. That did not help much - Sven could not understand why they even looked at their role with him as work. The discussion turned in circles. It seemed as if Sven would not be able to perceive anything around him - over and over again he threw the same accusations, demands and insults. Almuth tried to persuade him to start again. It could all be better now. Silke said her goodbye to Sven, who barely reacted. Katya lay crying with Silke in her arms and told her that she wanted to leave too, but she could not leave Almuth alone. Why did Almuth fight so much for Sven's dream?! She could have simply said "that's it" and then Sven would have had to stop. I witnessed Sven cutting off the branch he was standing on with a big saw.
Alone After a very emotional farewell I stood, arm in arm, with Katja and waved goodbye to my film crew and Silke. I felt like I was being waved at from to the last lifeboat as I stood on the Titanic. Then we made our way, now only four, to the next hotel. Of course, from that point on the mood was very tense. Everyone was wary. Nobody wanted to say or do something wrong. I became part of the group. I slept in the same quarters and attended every meeting. I experienced every further outburst of Sven. I was the contact person for him and his assistants. Of course, I tried to de-escalate, but I did not want to interfere. After all, I was here to observe, document and not intervene. I was torn. Am I taking the side of Almuth and Katja? Sven was so unfair to these wonderful women. I wanted to defend and protect them. But again and again I forced myself to understand Sven's side. Why was he acting like this? What was going on in him? One day I interviewed Almuth while Katja was walking with Sven. Sven's knees were badly damaged. His calves and thighs were also completely overloaded. Sven had great difficulty walking and had to slow down his pace radically. While Almuth told me that she has known Sven for many years and has never seen him like this before, Katja called on her mobile. "Sven collapsed and cannot walk anymore." Almuth and I left immediately with the car. When we arrived, we saw Sven sitting alone on a bench. Katja had apparently hurried on to get better cell phone reception. Almuth drove on to pick Katja up and let me out of the car with Sven. I sat down next to Sven. This one seemed completely finished. He said his knees would not work. Maybe God would help him ... then - abruptly - he burst into tears. I asked him if he could tell me what he was feeling and he answered with just one word: "Alone". My tears started to run and I wished that Almuth and Katja would come and hug him. But nobody came. Then I put the camera aside and squeezed him. I said, "Sven, you are not alone!" And at that moment I did not know if I was lying. So much was clear to me that evening. Sven was not a hero. He was a person who learned early in childhood that people cannot be trusted. Because of his deafness and visual impairment, he quickly became an outsider. The children laughed at him and mocked him. His parents could not give him any security. They sent him to a convent, and even there Sven had the idea that people should be kept at distance because the nuns were anything but affectionate. Then he became blind and the world around him black. There were no faces left telling him anything about the nature of the soul that faced him. Every laugh around him could be ridicule - any word he could not understand would be an insult. The hand that guided him did so because it wanted to earn money; money from him as a deaf-blind object. They did not want to help him for his own sake - they just saw him as a job. That's how Sven saw it.
New Hope When Katja left, Manu and Antje came. Antje was Sven's longest serving assistant, hearing-impaired too Sven saw in her a real friend. When Sven greeted Antje, he said, in tears, "Finally you're here!" Antje and Manu were full of energy - they were looking forward to the first day of hiking and were happy and boisterous. Almuth and I were not allowed to tell them about Silke's demolition, the quarrels and the mood of the last two weeks. Maybe everything would change now. But already at the first meeting everything escalated again. Sven demanded friendship and not just assistance. Manu and Antje were stunned - they did not know what was going on here. In the course of the discussion Manu stood up suddenly, because Sven had accused her of being inhumane and having only money in her head. Antje also left the table because she became emotional. I could not believe what was happening and wanted to intervene - I pulled myself together. Now I too felt an emotional heaviness and a mental exhaustion. It was despair - Sven had already pushed away the new team before the first hiking day. But I also realized in what dark prison he was. Sven no longer saw the Way of St. James, the scenery, the joy - he saw only people who celebrated behind his back, talked and laughed at him. He was angry and never learned to express or control that feeling. He could not just get up and say, "Then I'll give up your help and go on alone!" He had to ask someone to take him to his room. It was a bitter struggle for power and control, for self-determination. I remembered a story of my grandmother's; my father, even before he could speak properly, kept tearing away from her hand with the words, "... 'lone!","... 'lone!" it meant that he wanted to go "alone". Also I remember, very early on, my own desire to determine for myself. This was a basic need which Sven was denied. He could not do anything alone - not here in this strange land, with strange rooms and a foreign language. My feeling told me that this man had to go back to his safe, familiar environment because he seemed to be losing himself more and more in a hostile, confusing world. After that, I lost all hope for improvement of the situation. As Sven's body slowly recovered, the anger grew on his dependence on the assistants. Almuth left, and like Katja and Silke, with the feeling of having failed. Tears of disappointment flowed again. Almuth had been the first to believe in Sven's dream and made it possible with her support. Now she flew home, knowing that Sven thought she was a liar and a hypocrite, greedy and inhumane. Sven's real world the next weeks were similar. Every day was fight and conflict. Every minute was full of tension and fear of new outbursts of rage. Iris, a lively and also hearing-impaired assistant recently joined the team. But she was not spared by Sven. Often we sat together at dinner and talked with sign language so Sven would not be disturbed. I quickly learned the language of the hands because it was the only way to communicate with others. Of course, I realized that Sven had been marginalized by his behavior and now it was all just about sticking it out. Especially Manu, who spoke very openly and directly with Sven, she became his punching bag. For a few days, we shared a room and built a friendly connection. Sven sensed this and tried to forbid Manu to talk to me. He accused her of not being able to concentrate on her work because she kept talking to me. I was mad. Now he used me to exercise control. I told Sven that from now on I do not want to share private times with them anymore, I would only walk and film. I left the apartment. I needed distance. Later, Iris told me that Sven had threatened to stop everything immediately if I did not change my mind. She told him that this was blackmail and totally unacceptable. After a few hours, I came back. Nobody talked about the incident. I was so tired and exhausted. I did not remember what my movie was about. Again and again I tried to come back on my heroic journey, but the path disappeared under my feet - with every kilometre more ...
I followed the group every day on the trail - barely looked to left or right - went through rain, wind and fog. The fog was once so thick one could hardly see a hand in front of one's eyes. When Sven's assistant told him that they were walking through fog, he said dryly: "For me, every day is fog" - "How true - how terrible," I thought.
At the Cruz de Ferro (cross of iron) every pilgrim should shed his worries and fears. Sven had prepared two handwritten notes for this monument. Manu and Iris helped him to get to the hill of stones and to the cross. Sven now stood alone up there, which was a rare and impressive picture. Then he addressed his parents who were no longer alive. He asked them if they were proud of him and told them that one day he would see them again. Later in the interview, he told me that he never felt loved by his parents and did not feel love for them. Then the scene on the cross was just for the camera - just for the cliché? Or did Sven really miss his parents and saw it as a weakness to admit that? I got from Sven very few pieces of his puzzle from his past, which still gave a disturbing, but coherent image. Sven seemed more and more absent-minded. He did not want to hear any descriptions of his surroundings. He was only concerned about miles walked. He wanted to hold out - that was clear. I wasn't sure why? More and more often it occurred to me that I am the reason, that the camera manipulates and influences the situation. Maybe that was why Almuth had not broken off. Maybe the group will torture itself over the 800km to Santiago, because they are in constant reflection with my camera. That was a disturbing thought.
I was aware that I was now in the middle of Sven's world. His deaf-blind world full of fears, insecurities and demons, it's a world that I would rather not have seen. I knew now that Sven had no friends and no one he trusted. When I asked him once in the car if he was often disappointed by people, he replied that he was used to it. He would not mind. That's not true, I thought. Of course, it makes a difference - everyone wants to be loved, accepted and respected. Everyone wants to mean something. All this was protection - a wall he had built around himself. Yes, an arm's length world is not just the environment he perceives. It is also the distance at which he keeps all his fellow human beings. "Do not get closer! But do lead me through my life!"
My film team is back the mood was at its lowest point when my film crew came back to walk and film the last 100 kilometres. They had only heard from afar what we were going through. Sven visibly pulled himself together. He wanted to make a good impression on my husband and producer of the movie Christopher. It occurred to me that Sven longed for male company. He only employed women for his assistance. These are not so clumsy, more reliable and would have the right body size. But I thought that perhaps it was less humiliating for him to be led by the opposite sex. Anyway, Sven reacted incredibly positively to the presence of Christopher and it was not long before he collapsed in his arms and cried like a little child. Manu and Iris sat there and could not understand what they were doing wrong. Even Christopher felt shame at the thought that he now got from Sven, what the assistants had truly earned: trust. The last days of the hike were tedious. Sven bullied his assistants at every opportunity. "Walk faster, walk slower, keep going, be quiet ...!" Then after a long day of hiking we all waited together on a small river for the car, which was the pickup point. Manu cooled her feet in the cold water and when she returned, after 1 minute, Sven attacked again. She would now only be a tourist, a pilgrim, but her role as DBA was over. A horrible fight broke out. Manu also slammed Sven's view of the situation openly and directly to his face. In her sunglasses I filmed the reflection of Sven as his face was distorted with rage. The sun burned down on us and Christopher had to hold me as i filmed so I would not fall over, because the exhaustion of the walk and dehydration made my legs tremble. In the evening, at supper, Sven said he wanted to take a break the next day, but Manu should stay away from him all day. Manu knew from experience that, on a break day, Sven's anger and irritated behavior only got worse. She answered him that she would then take a plane home. Sven then agreed to walk with the words: "I NEED YOU! Are you happy now?! I NEED YOU! "He lashed out like a tortured animal - thrusting his forefinger into Manu's face and everyone was petrified. That's what it was all about: his dependence, his bondage, his dignity. Again, tears welled up in my eyes. All this way to only to find out in what dark prison Sven really lives?
Santiago de Compostela The last 5 kilometres before Santiago de Compostela. In a small cafe, Sven spoke to me when his assistants were in the bathroom. He asked if it would be all right if Christopher showed up in the movie because he just wanted to hug him when he arrived on the square in Santiago. Of course that was ok, if that was Sven's will ... We continued with a queasy feeling. Sven stopped suddenly and said to his assistants: "Just so you know - no one should hug me when we arrive!" The women did not seem surprised and agreed. And that's how it happened.
Unfortunately, Christopher was left behind with e-bike and equipment and so Sven stood alone - blind and deaf on the star in front of the Cathedral of Santiago de Compostela. It was a sad picture. Iris and Manu were crying in their arms - they had made it. Finally it was over. Sven got his stamp, hugged Christopher after picking up the certificate in the tourist office and told us that the whole way for him had been only pain and disappointment.
No - that's not how I imagined the end of the heroic journey. If the hero has learned to become someone else, found his love. Not so Sven. For him, the DBA's were responsible for everything - they had broken everything. They were inhumane and mean. There was no happy ending for Sven, not for everyone else.
Freedom On the many hours of the return journey to Rottweil, all the pictures and moments that I had seen and experienced during the last six weeks went through my mind. I realized that it was me who had changed. The notion that a deaf-blind man who wants to go the Camino de Santiago is automatically a hero was naive.
The hero had evolved in my own imagination. A person who has lived a difficult life and now has to live with such a restrictive disability can react with anger, fear and confusion, why wouldn't they! Few people can gratefully and modestly accept help, particularly when they are supposed to be the leader. In fact, his fight, his passion for control in the face utter futility, with no one to trust, is a spirit worthy of respect. It's the base, ancient motivation of hero, the one left to him. Sven will need support for the rest of his life. In that he can trust.
When we took Sven home, he unlocked the front door himself, walked confidently through the small 2 bedroom apartment and pulled up all the shutters. The sun was shining in, but Sven did not see it. I asked how he felt and again he answered in just one word: "Freedom!"
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