Why are people with narcolepsy more creative

Self-determined - the report | We asked about the day of sleep on June 21st Narcolepsy: How Sarah Zessin copes with her life

Suddenly falling asleep, falling asleep with joy or anger, being attacked by bad hallucinations - all these are manifestations of this rare disease, which is often not taken seriously and often not correctly diagnosed. Sarah Zessin also knows the odyssey through doctor's offices and the struggle with the authorities; for aids or the severely handicapped ID.

"I want to be part of life"

"I want to be part of life," the young woman clarified. At that time she was 24 and for two years had not only struggled with the typical sleep attacks during the day and against insomnia at night, now so-called cataplexies were also bothering her: involuntary muscle slackening, triggered by emotions; a clear characteristic of narcolepsy. She did not let herself get down.

Despite the serious illness, she was able to finish her training as an occupational therapist. Together with a trainer, she trained the Labrador bitch Mia, who should indicate new relapses in good time and thus enable her to lead a more self-determined life. Supported by the parents and their friend Sascha; From her doctor, her lawyer and finally the social association VdK, Sarah Zessin has achieved a lot in the past few years.

You collapse as if you were cutting the strings of a marionette, you remain fully conscious. You can tell that it hurts when you hit the ground. You can hear what people are saying.

Sarah ZessinShe once experienced that she was thought to be a drug addict and spit on without being able to defend herself.

Success after six years in court

She has now fought for the severely handicapped ID card, which the state administration office initially refused to give her, although the diagnosis of narcolepsy authorized her to do so. In the first instance it had failed. After six years and three medical reports, a comparison was made in June 2019. She was awarded a severe disability of 70 degrees with the marks G and B.

Anyone who is awarded a degree of disability of at least 50 percent is considered severely disabled. The certificate makes it easier for those affected to set up an apartment suitable for the handicapped or to promote a job.

Certain criteria apply to a mark. G stands for "mobility impaired" and can be awarded if the applicant cannot cover a distance of two kilometers within 30 minutes. B stands for accompanying person.

She translates official German with more participation. Associated with the ID card is not only permission to use public transport free of charge, it also enables a handicapped-accessible apartment or job promotion. It also makes things easier privately: "The B mark allows me to take an accompanying person with me wherever I go without incurring extra costs." So her friend Sascha was able to stay with her in the family room after the birth of their son in September last year. "Starting a family has always been part of my life plan, but when I was diagnosed with narcolepsy when I was in my early 20s, it was clear to me that this would only be possible if everyone pulled together and supported," she says.

Family venture

No one could relieve her of the risk itself, the physical exertion. Sarah had stopped her medication to avoid risk to the child's health. She was plagued by nausea and vomiting throughout pregnancy, which drained her strength. For longer journeys and larger undertakings, she used a wheelchair on the recommendation of the doctors. In order not to lose too much muscle, she received physiotherapy.

In her new everyday life with the child, an assistance service supports her around the clock, because her friend Sascha works on assembly: "That means that four people spend the day with me and the child at different times, they protect us, help with the household, so that I can use all my strength for the little one. They also take over when I have a seizure or have to sleep, although I always try to do that in parallel with my son. Sarah Zessin was unable to work in her dream job due to the severity of her illness; Now that the corona-related offers for babies or toddler groups have been canceled, the training has helped her a lot in the private emergency, she reports: "As an occupational therapist, I know what kind of support is good for a child at that age." In addition, it is based on Montessori pedagogy: "Help me to do it myself" is their motto. For Sarah Zessin, it seems, it has become a motto in life.

Career plans: Self-help expert

Your son can go to daycare from September. Then Sarah Zessin will put her next plan into action. She does not want to live from Hartz 4 or take early retirement at the end of 20, she emphasizes. She would like to help others to help themselves. She is now an expert on that: based on the certificate she won, her employment with an outpatient social service could now also be promoted. To this end, she is in talks with the social welfare office, job center and the company concerned. Sarah Zessin imagines using her knowledge as a consultant for parenting assistance or doing public relations work for the company. Both can be achieved from the home office. She certainly has the necessary drive and creativity.

Don't wait for the future, shape it

Three years ago, Sarah Zessin told the "Self-determined" report that she had to give up playing the violin for many years because of her narcolepsy and cataplexy. Instead, she bought a ukulele. Because it is small and light, you can also play it lying down. She began to sing in the mixed choir of Naumburg, because there was no fear of contact, but found that music was a panacea.

Our society finds it very difficult to deal with sick people - we are too afraid of contact.

Kathrin Gerhardt, Mixed Choir NaumburgKathrin Gerhardt does not have this fear of contact, she works in the care sector.

Sarah Zessin also discovered drawing for herself. That helps to capture the horror movie-like hallucinations on paper, she said. She painted comics and designed t-shirts for narcoleptics and their families. Sarah's mother said at the time that she didn't want to overprotect her daughter, but she was scared every day. Fear for Sarah's future. Fortunately, Sarah Zessin is not someone who waits anxiously for her, but wants to shape it. By the end of the year, she says, she would like to move in with Sascha and live "like a real family". Just like many other people.

Katrin Schlenstedt, MDR Religion & Society