Multiple sclerosis in daily life
A special kind of normality
Stephanie Bessner has been living with multiple sclerosis for over 20 years. But for her young daughter Tessa, Stephanie is simply a great mom who likes to dance.
“Humility is an old-fashioned word. But I’m simply grateful for many things.“
Stephanie Bessner, 44, has often told the story of her disease. She is the mother of two children, and she has been living for more than 20 years with the diagnosis of multiple sclerosis (MS). In retrospect, she says she probably already had the symptoms before her MS was diagnosed. She has apparently had this disease since her teenage years. When Stephanie Bessner awoke one morning during her second semester as a student in Munich, the left side of her body felt numb. Her left hand was tingling and she could not see very well. That was in 1992. She went to her doctor with a sense of foreboding. The doctor sent her to a neurologist.
“I felt as though a trap door was opening in front of me. At that time I did not know what it means to have MS,” she says. She cried a lot after receiving the diagnosis, and she drove immediately to the Munich city library in order to find out more about this disease. There, all she could find were pictures of frail people. She also remembered seeing a sick woman in her home village who was being pushed in a wheelchair. That gave Bessner courage to try something different. She packed her backpack and booked an airplane ticket to Australia.
Then she arranged for her son Felix, who was four years old at the time, to stay with relatives while she was gone. “I simply wanted to leave the disease lying on the beach over there and then to fly back home,” she says. Today she realizes how naïve it was to wish she could leave her MS behind her on the other side of the globe. But at the time she was eager to get on with her studies of German language and literature, among other subjects, and to receive her qualification as a teacher.
At that time, her son Felix was in kindergarten. She initially did not tell him anything about her disease. On his first day of school, she could not accompany him because for a while she needed a crutch in order to walk.
She imagined that this would embarrass her son, and she wanted to spare him this unpleasant experience. “In retrospect, I am annoyed at myself for thinking that,” she says. That is because Felix would not have considered the crutch embarrassing; for him it was completely normal.
And yet Felix soon realized that his mother could not do everything other parents could do; there was something different about her. At a school party, the parents had to go through a “sensory parcours.”
Felix was shocked when he found out that his mother could not recognize a letter A made of velvet. He did not know that his mother could not feel anything with the numb fingers of her left hand. At that point she explained her disease to him. When they went on vacation together, he carried the suitcases and wanted to take on even more responsibility, but he did not treat her like a person with an disease. Eventually she took him along to a meeting of the German MS Society (DMSG) so that he could learn more about his mother’s situation. Today Felix is 27 years old and works as a cameraman. He is quick to perceive changes in the gestures and facial expressions of the people he deals with. His mother’s disease was one of the factors that stimulated and strengthened this ability.
In front of the school building, mother and son reminisce about Felix's first day at school. Today, Stephanie can no longer believe that she didn't accompany her son because she was afraid she might embarrass him
Stephanie Bessner’s daughter Tessa is four years old, the same age her big brother was when her mother’s disease was diagnosed. Tessa dances in the living room to swing music from the old Jupiter phonograph. Tessa considers her mother an absolutely normal mom with a pretty face — a mother who is fun to cuddle and dance with. She does not know yet why her mother sometimes needs to stop and rest, or why she can no longer drive a car.
She also does not understand why her mother sometimes needs to go to the hospital for an examination and has to receive her medication in the form of injections. Tessa does not like the hospital because of the injections, but she does not know the reason for them. This positive state of affairs is due to the fact that Stephanie Bessner’s health has seldom been as good as it has been in the four years since the birth of her daughter. Since the birth she has had no MS attacks.
“My pregnancy was categorized as a risky one, but that was also because of my age. The birth was very easy, and I nursed my daughter for a long time. That was regarded as a protective situation, and it kept me from having a new MS attack,” she recalls. She adds that her medication, an interferon-beta preparation, has also helped. She says it has acted like a safety belt, because “MS cannot be cured, but nowadays it can be very effectively treated.” If she experiences an MS attack before Tessa starts school, she plans to explain her disease to her daughter. But now Tessa is still too young to understand the details.
A happy family: daughter Tessa, Stephanie, and son Felix
She has also met a new partner here in Heidenheim. He helps her whenever he can. For example, he drives her to the supermarket, because her disease has greatly limited her field of vision and she can therefore no longer drive. She has also had to give up one of her favorite hobbies, riding a motorcycle, for the same reason. Instead, she carries a severely disabled person’s ID. “Sometimes people look at me strangely, because I can walk like a normal person,” she says. “But in fact MS is a severe disability.”
If you see Stephanie Bessner running across the playground with her daughter or dancing in her living room, it is hard to believe that this woman is ill. She says that last weekend she danced at a wedding until three in the morning. It is easy to feel her zest for life and the way she enjoys every moment. “Humility is an old-fashioned word. But I simply feel humble and grateful for many things,” she says.
After working for many years in Munich as a PR consultant, Stephanie Bessner moved back to her home town of Heidenheim in the German state of Baden-Württemberg. After the death of her father, she moved into her mother’s house, where she, her mother and daughter Tessa form a kind of “girls’ co-op.” Bessner considers her mother her most important source of support.