Thorben Wulff has not wanted Moebius syndrome to completely define who he is. He’s not “the guy with Moebius.” He’s Thorben.

Thorben works as an Executive Assistant to the CEO and Head of Finance and Accounting in a mid-sized, family-owned food trading company in Germany. The company imports fine foods, especially cheese and charcuterie, from other European countries and distributes them to delicatessen shops, grocery stores, and supermarkets.

Thorben’s responsibilities are quite diverse. He supports the CEO in strategic decisions, oversees finance and accounting topics, and helps safeguard the financial stability of the company. He is involved in many operational questions and supports the team with day-to-day challenges as well.

He is also responsible for IT-related topics and for introducing AI solutions into the company. That makes his role a mix of finance, strategy, operations, technology, and practical problem-solving. He said he enjoys that variety, because no two days are exactly the same.

Thorben has a Bachelor’s Degree in Business Economics, a Master of Science in Management, and is pursuing a PhD in Finance, Accounting and Taxation.

Thorben said Moebius syndrome was never a very big issue in professional contexts. He never felt that he needed to make it the headline of an interview, but he also did not try to hide it. He usually addressed it only when it felt relevant or when the situation made it natural.

He remembers talking about it once during his admission interview for his bachelor’s program. They were talking about his personality, and at some point he said something like: “Also, I was born with Moebius syndrome, which in my case is mainly visible through facial palsy.” The interviewer asked him: “Do you think this might be a disadvantage for you at our university?” He thought about it briefly and said: “No, not really.”

Thorben said, apart from formal interviews, some fellow students and colleagues from internships were curious from time to time, about his Moebius. Usually, he said they asked very politely and carefully, and they talked about it in a relaxed atmosphere, often outside of work or university, and sometimes over a drink. In those situations, it never felt like a problem. It was more like answering honest questions from people who wanted to understand.

Thorben said he was lucky to have a very supportive environment, whether it was his family, friends, fellow students, or colleagues. At the same time, he thinks he also learned to choose and build environments where openness, trust, and mutual respect were possible.

Thorben said he does not really remember a negative reaction after telling someone about Moebius. Most people reacted with curiosity, kindness, and respect, and after that, it usually became just one part of who he was, not the central topic.

Thorben said he is not sure whether or not having Moebius has made the interview process more difficult. He said he cannot know what happened in the minds of recruiters before or during an interview. In Germany, it is still quite common to include a photo in a CV or cover letter, so it is possible that Moebius had an effect even before he entered the room. But, he cannot really know that for sure.

Because of Moebius, Thorben said his pronunciation can sometimes become a little less clear, especially when he is stressed or speaking too quickly. When that happened, he simply repeated what he had said, and usually that was completely fine.

Another aspect is nonverbal communication. He said he likes his dry, sometimes sarcastic humor quite a lot, but before his smile surgery, it was harder for people who did not know him to read that humor correctly. He said, in interviews, where people only have a short time to understand who you are, that probably made it more difficult to fully show that side of his personality.

Thorben said he has also been on the other side of the table. During his time at WHU, he conducted more than 50 interviews with bachelor’s and master’s applicants. That experience taught him that interviews are always imperfect. You only see a small part of a person, and you have to be careful not to confuse first impressions, body language, or facial expressions with ability, motivation, or character.

Ultimately, Thorben said Moebius may have made some parts of the interviewing process more difficult. But he would not say it made it impossible or even necessarily a central issue. It mainly meant that he sometimes had to communicate a little more consciously and give people a bit more context to understand him correctly.

Thorben’s advice to people with Moebius who are navigating the interview process is not to make Moebius the headline of the interview, but also not to let fear turn it into a secret. You are there because of your skills, your motivation, your experience, and your personality. Moebius may be part of your story, but it is not your full résumé.

Thorben said it helps to be prepared for potentially talking about Moebius, even if you do not plan to address it directly. Have one or two sentences ready that explain what Moebius is and how it affects you in practical terms. For example, if your facial expressions are limited or your speech is sometimes less clear, you can explain that briefly and then move on. The goal is not to apologize. The goal is to give people enough context so they can understand you correctly.

Thorben would also encourage people with Moebius to focus strongly on what they bring to the table. Prepare well, know your strengths, and show why you are a good fit for the role. Confidence does not mean pretending that Moebius does not exist. It means not allowing it to take up more space than it deserves.

And, finally, Thorben said interviews are not only about whether a company chooses you. They are also about whether you would want to work with those people. If someone reacts with openness, curiosity, and respect (about you talking about Moebius), that is a good sign. If someone reacts with discomfort, prejudice, or a lack of willingness to understand, that also tells you something important about the environment.

Looking back at his childhood, Thorben said Moebius did not completely dominate his life. Even in kindergarten and school, he found friends and does not remember having major difficulties connecting with other children. He said he was never the classic entertainer in large groups, and that is still true today. He enjoys meeting people, attending conferences, and having good conversations, but afterwards he is usually quite happy to have some time for himself again. What mattered more to him, both as a child and later, was having a smaller number of close friendships and real connections. And that was always possible for him while growing up.

Of course, he said Moebius was still present. Sometimes people had questions, especially in new environments. He remembers that his parents spoke with his main teacher when he entered secondary school, just to give some context. But his teachers never made it a big topic in front of the whole class, and he is grateful for that. It was handled quietly and respectfully, which, he said, was probably exactly right for him.

Thorben said there were also many practical and medical aspects of growing up with Moebius. As a baby, he had eye surgeries to correct strabismus. Later, he regularly saw eye doctors to check the condition of his eyes, and, over the years he also had many appointments with speech therapists and occupational therapists. For him, this was simply part of growing up with Moebius. It was not always exciting, but it was normal.

As a child, Thorben also had difficulty drinking from a regular glass because of the facial palsy, so he often needed a straw. He and his parents learned the word for “straw” in several languages, so they could ask for one when they were on vacation. He said, in a strange way, that is also part of growing up with Moebius: you learn to adapt, sometimes in very small and practical ways.

Thorben said the more difficult phase was probably adolescence. He thinks many teenagers feel different in some way, but with Moebius that feeling was sometimes more concrete. He remembers moments when he felt that people were looking at him on the bus or in public places. He said it was not terrible all the time, but it was present.

Dating was also difficult for him. He said he did not really dare to approach girls when he was younger, and online dating later became a real game changer. Still, he had his first relationship only during his PhD.

Thorben said his parents had a good balance overall. His mother was sometimes more cautious, while his father was more relaxed, but Thorben was never wrapped in cotton wool. He was allowed to have his own experiences, go out, attend parties, concerts, and football stadiums. At the same time, especially as a child, Thorben said he definitely benefited from a lot of parental support, including many rides in the famous “mom taxi.”

His parents also made a conscious effort not to define him primarily through Moebius. They supported Thorben where he needed support, but they did not want him to grow up seeing himself mainly as “the child with a condition.” He thinks that helped him a lot. They tried to keep a good balance: taking medical and practical needs seriously, while still making sure that everyday life, school, friendships, hobbies, and family life remained the center of his childhood.

Overall, Thorben said his childhood was not defined by Moebius, but Moebius was always somewhere in the background. He said he was lucky to have supportive parents, good friends, and teachers who handled it with sensitivity. That gave him the space to grow up mostly as himself, not as “the child with Moebius,” but simply as Thorben.

In 2019, a friend sent Thorben a link to the smile surgery program at Princeton University Hospital. Before that, he said he had never heard of this dynamic muscle transplantation approach, because he had not actively researched current surgical techniques for facial reanimation.

Thorben said he was immediately fascinated and started researching whether this type of surgery was available in Germany. He contacted the German Moebius Foundation, got in touch with the surgeon who performed the procedure, tried to find first-hand experiences and medical evidence, and also discussed it with his general practitioner.

Thorben said the decision whether or not to have the surgery was actually quite clear for him. He had already had eyelid implants done by the same surgeon to improve eyelid closure, so Thorben had a good feeling about the surgeon and his work. Thorben also felt that the downside risks were manageable.

Thorben said he was probably more relaxed about it than some people around him, but fortunately everything went well. He said some of his family members and friends were probably more nervous than he was. After the first surgery, the procedure took a little longer than expected and he spent one night in the intensive care unit for monitoring, but apart from that, everything was fine.

In the summer of 2020, Thorben had the two surgeries, one for each side of his face. He said in his case, the procedure involved transferring gracilis muscle and connecting it to the masseteric branch of the trigeminal nerve.

Right after the surgeries, Thorben said he had very swollen cheeks. He said he looked a bit like a hamster. Then, for quite a while, not much happened. At some point, chewing triggered a small twitch. That was the moment when things started to become real. From there, the therapeutic work began. He had to learn how to activate the newly innervated muscles, and he said he was very lucky to find an excellent speech therapist for this very specific issue.

Thorben said, even today, biting down firmly still activates the muscle to some extent, but he can control it much better now. And one of the most motivating parts was realizing that he had actually learned a new skill: He can activate the muscle without biting. He said the first small twitch and later the first conscious activation were genuinely emotional moments for him.

Thorben said, today, he is very happy with the result. It has changed many small but meaningful situations: greeting people, reacting to jokes, being in photos, or simply smiling at someone in the street. He has more confidence now, and he genuinely enjoys being able to smile at people. He said he never hated photos of himself before, but he likes them much more now.

At the same time, Thorben said he would never tell anyone with Moebius that they need surgery to be complete, acceptable, or “fixed.” That is very important to him. For Thorben, the surgery was not about becoming a different person. He decided to do it because he wanted to expand his ability to show emotions. He said he likes people, he likes the world, and he wanted to be able to show that more clearly when people make him happy.

What Thorben would want the Moebius community to know is that smile surgery is not a magic switch. The surgery itself is only one part of the process. The therapy afterwards, the training, the patience, and realistic expectations are just as important. But, he said, for him, it was absolutely worth it, and, although it required work, it never felt like an impossible effort. He said he wanted to smile at people.

Regarding being stared at or bullied, Thorben said he has been stared at, of course, but he does not remember experiencing that as a major problem most of the time. He said maybe he ignored it, maybe he blocked some of it out, or maybe he was simply used to it. He said he did not experience severe bullying. There were uncomfortable moments, but he said he was lucky that they did not define his childhood or his self-image.

One situation he does remember happened during a church youth retreat when he was around confirmation age. A pastor introduced Thorben’s facial difference to the whole group in a very awkward way, even though there had been no real need to do so. After that, some of the other children treated Thorben strangely, and he felt uncomfortable enough that he asked to be picked up and did not join the other retreats afterwards. His mother later made it very clear to the pastor that this had not been handled well.

Looking back, that experience taught him something important: sometimes the problem is not the difference itself, but the way other people frame it. If adults make something unnecessarily big, awkward, or strange, children often pick up on that.

In general, Thorben’s way of navigating staring or uncomfortable situations was often to ignore them and move on. That worked for him in many situations, but he also realizes it can have a downside. Even today, he sometimes needs close friends or his partner to point out when someone has crossed a line that he has simply accepted. He said his approach is not perfect, but it helped him not to take everything personally, and it also taught him that not every uncomfortable situation has to be silently endured.

Thorben said he feels wary of giving advice about navigating bullying because his own experience with it was limited. He said he was lucky in that regard, and he knows that other people with Moebius may have faced much harder situations. But if he had to say something, it would be this: try not to automatically make other people’s reactions the measure of your own worth. Some people stare because they are curious, unsure, overwhelmed, or simply not very socially aware. That does not make it pleasant, but it does not mean there is something wrong with you.

And, ignoring can be useful sometimes, but it should not become the same as silently accepting disrespect. If someone is cruel, humiliating, or repeatedly crossing a line, it is okay to name that, to leave the situation, or to ask for help. You do not have to handle everything alone. A few good people around you, such as friends, family, teachers, colleagues, or others in the Moebius community, can make a big difference. They can remind you of who you are when someone else only sees what is different.

And, something Thorben is still learning himself: your face may be the first thing some people notice, but it is not the most important thing about you. You are allowed to take up space, to be visible, to be ambitious, to be funny, to be sensitive, and to have boundaries.

The main thing Thorben would want to share with the Moebius community is that he has always disliked labels. He does not like putting people into boxes, and he does not like being put into one himself. He said, of course, Moebius is part of his life and part of his story. But, he never wanted it to become the category through which everything about him is interpreted.

For a long time, Thorben defined himself much more through the things he was good at: performance, intellect, analytical thinking, and rationality. Those were areas where he felt strong and in control. That helped him a lot, but he said it also probably meant that emotions sometimes came a bit short. At least that is what he said his girlfriend would say, and she may have a point. He said he would not pretend that he has everything figured out. He said he is still learning how to balance strength and vulnerability, ambition and self-acceptance, rationality and emotion.

But, Thorben said if there is one thing he would want the Moebius community to know, it is this: do not let one part of you become the whole explanation of who you are. You can be many things at once. You can be ambitious, insecure, rational, emotional, funny, serious, successful, unfinished, and still completely yourself.

 

Written by: Kari Storm