Hannah, 28, has narcolepsy
Hannah #Hannah
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„Someone is standing in front of my bed and slowly approaching, I can physically feel their presence. It’s the girl from the movie The Ring. I’m trying to wake up, but I can’t move.” During our interview, Hannah calmly looks me in the eye as she takes her bong with her marijuana fills. „If I rolled a joint every time I wanted to smoke something, I wouldn’t get anywhere. For me, smoking weed is definitely not for fun.”
Hannah has a different name, is 28 years old and suffers from the sleeping sickness narcolepsy – a neurological disease that causes narcoleptics to fall asleep uncontrollably several times a day at night partly unbearably real hallucinating. Around 40,000 people diagnosed with the disease are currently living in Germany, but the number of unreported cases is much higher. It often takes years before the symptoms of the sick are correctly interpreted. The causes of the sleep attacks that occur have not yet been clarified; Researchers assume that the centers in the brain are responsible for our wake-sleep rhythm Taxes.
„The Ring girl is the stereotype of fear for me“
When Hannah falls asleep at night, unlike unaffected people, her sleep begins with the REM phase – this usually only occurs after a few hours of sleep. Due to Hannah’s constant half-sleep caused by narcoleptics, her hallucinations while falling asleep also arise. These are not consistently positive, but also dig into Hannah’s psyche, often generating nightmarish embodied worries and fears in her. „The Ring girl is the stereotype of fear for me,“ says Hannah. “I am fully aware that I am creating them. There’s nothing I can do about her, except wake up. But try waking up if you can’t scream and move, then there’s this stupid cow in front of you and you’re also pressed for time.” Hannah laughs sadly. „The primary reason I smoke weed is to sleep without hypnagogic hallucinations. THC actively depresses my dream sleep.”
If she has this hypnagogic state, she can feel not only visual but also auditory pseudo-hallucinations – and sometimes without being able to move. Even though she knows she hallucinating, in most cases it cannot react to it. The only thing that is not affected by sleep paralysis are the eyes – the eyelids are.
„I had days where I wasn’t really awake for an hour“
She was diagnosed as an adult, but the first signs began when she was still young childhood, says Hannah. Nightmares were always part of her memory. Panic about fantasy creatures like E.T. The Extra-Terrestrial culminated in her mother cutting out and throwing away all the film frames from the TV guides. Hannah’s fears and dreams were classified as those of an ordinary child, no one suspected an actual illness. Only as in adulthoodthe sleep attacks came, Hannah began to worry seriously. After her training, she got her Abitur at the vocational high school. Already during the first lessons she dozed off again and again, especially when she was not actively involved. Every presentation, every exam and ultimately her Abitur exam was reason enough for her Body went limp – and she fell asleep.
That was in 2010. She blamed it on her lifestyle, which was filled with school, FSJ and internships at the clinic. „I had days where I wasn’t really awake for an hour. Of course, the teachers thought that was catastrophic and I asked myself: What is wrong with me? Why can’t I do as much as the others?” Even if it was the content that interested her: Nothing could stop her from falling asleep in presentation situations. “It got bitter when teachers or others accused me of being lazy or maybe just stupid. That was the moment when mine depressions used. Unfortunately, an absolutely clear co-disease of narcolepsy.” At this point, taking written exams was no longer an option for Hannah and her request to be allowed to take all exams in oral form met with a lack of understanding from teachers and classmates. Nevertheless, Hannah wrote her high school diploma – without medication, without a diagnosis, with falling asleep. „At some point during my written English exam, I woke up and found the words „… and I can do magic“ written in bold letters on my sheet. So I can write in my sleep. This is my best narcolepsy story ever.”
„… like someone constantly tapping my kneecap with a small hammer“
The fact of dozing off during lectures was comparatively harmless for Hannah. It became indirectly dangerous when she started driving her car, but also in clubs and fall asleep on night buses. Even with the roaring music around her, nothing kept her awake for long. „As a woman, you really don’t want to experience that, being so vulnerable,“ she says while petting the puppy that fell asleep snoring on her lap. “The little one always makes everyday life difficult for me. Just because she’s so cute,“ laughs Hannah, touched. Her body twitches slightly, almost imperceptibly. „That was just a typical cataplexy, in case you’re wondering,“ she says, not without a smile.
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Such so-called cataplexies are another extreme feature of narcolepsy: events that emotions like great joy and enthusiasm, laughter, Fury or cause a shock in her, let Hannah’s muscles relax for a short time. At the beginning it was just a short twitch at certain points. „It was like having my kneecap tapped with a small hammer, just all over my body. For a long time I wasn’t able to assess what it was or where it came from.” In severe cases, this loss of muscle tone can last up to thirty minutes in those affected – but Hannah hasn’t gotten that far yet.
„I wish only one could have admitted that they just don’t have a diagnosis!“
A medical marathon began: from family doctors to neurologists, each doctor tried to explain their symptoms differently: a non-functioning thyroid gland, stress and revision. Even borderline was used as an option. “Most of my doctors have been adamantly recalcitrant and unreasonable. I wish only one could have admitted that he just didn’t have a diagnosis!” Hannah got angry, she started hers symptoms to google. She stumbled upon the Wikipedia article on narcolepsy on repeated clicks. Seeing symptomatic cataplexy described there, it dawned on her what might be the cause of her nightmares and constant dozing. “Cataplexy is the only cause of narcolepsy. My self-diagnosis was there – the subsequent diagnosis from the doctor was just a snap.”
The narcolepsy was a shock. Only over time did she understand what that meant for her future means. No driving, no living alone, sleeping with someone else in the same bed is difficult if not impossible. “It restricts my life massively, to the point of absolute dependence. It affects friendships, my relationship, my personality. This disease really changed me completely.” She could take medication, but she tries to avoid all medications except her marijuana use. antidepressants made her cataplexy worse, anything else against narcolepsy made her suffer too much physically and is extremely harmful in the long run. „Sometimes I couldn’t avoid taking medication for my daytime sleepiness. They seem a lot like speed, but I was actually more in the mood for a crystal meth addict.” She felt wide awake but emaciated. „I’ve lost a lot of weight. This artificial wakefulness just isn’t healthy.” Hannah describes her illness as an ideal case for that Legalize of marijuana. “Since I also smoke weed during the day, my tendency to fall asleep during the day is far less. I can sort my head much better and focus on the essentials.”
In addition to the depression, there were also suicidal thoughts: „Because I’m not in a wheelchair, people can’t believe that I can’t do certain things. There is absolutely no awareness of this in society. I constantly observe the automatic assumption that the other person is perfectly healthy.”
„We accept physical integrity as a standard, especially in youth“
Over the years, Hannah has regained vital energy. She understood that there are far worse diseases than narcolepsy. your study of philosophy she has almost finished, at her university all lecturers and fellow students are now in the picture of her falling asleep attacks. Through the humanities, too, she has learned to accept her illness as such. She feels more reflected and mature than before, she seems to be prepared for everything that comes her way. Although narcolepsy doesn’t directly translate into a reduction in life expectancy, Hannah does know what it is Body makes sleeping only three to five hours a night. She describes too little sleep as overexploiting one’s own body. She is aware that sleep deprivation harbors long-term diseases such as diabetes, high blood pressure and metabolic disorders. “We take physical integrity as a standard, especially when we are young—until nature proves otherwise,” Hannah says quietly.
„When people ask me how I imagine my future, I always only answer: How do YOU imagine your future? No one can put their hand in the fire for getting a good job later or not ending up as a single mother as a woman. If you’re under a bus tomorrow, all your plans are for naught too!“ Hannah meets my eyes again: „In a world where people are a bit more flexible, I’m Superman.“
Image source: Xavier Sotomayor via Unsplash under cc0
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