Since I got in contact with the Institut für Epilepsie in Graz to conduct an feedback interview of my prototype earlier this year, I’ve been following their social media and website for any news regarding their institution. This was when I discovered the Gfü group („gemeinsam füreinander“), an initiative and a safe space for young people with and without epilepsy. This group meets once a month to do spare time activities and create community. It is driven by the ideas and impulses of its participants and is free of charge.
On 10th of December I got the opportunity to join one of the last meetings of the year. The Gfü group met at Hauptplatz in Graz to visit and take a walk along Graz‘ Christmas markets. We were a small group which consisted of five people. I met Tanja again, she is a certified epilepsy consultant and part of the team at Institut für Epilepsie. Along with her colleague Regina I got to know her when I had the mentioned feedback interview. Tanja was accompanied by her boyfriend. Two young persons in their twenties joined for the meetup. I was warmly welcomed and got to tell, how Tanja and I got in contact and what I do in the research for my master’s studies. It appeared to be a bit complicated to explain what I do in my research, but I knew to break it down to the core. Tanja’s boyfriend showed interest in my field of study and my topic which led us to have a nice exchange. He, who studied at FH JOANNEUM himself, works in software testing and knew about the importance of usability for digital products. He reflected my topic and its complexity would definitely be worthy of a master’s thesis.
After we went along Herrengasse and crossed Landhaushof, we got to the crossing at Schmiedgasse and Landhausgasse to have hot beverages at one of the Christmas stalls. That’s when I got to know both of the young people – for privacy reasons names and genders are not mentioned in this blog post. They asked me about my field of study and seemed interested as well. In course of the conversation we got to what they do in their lives. Without my asking and without any hesitation, they started talking about their individual forms of epilepsy. Previous to this meetup, it was important to me not to ask people about their disease actively and just have a conversation if people open up to this topic themselves. And this is what happened in the conversation between Tanja, the two young people and me.
The first person was diagnosed with focal seizures which are accompanied with side effects. This limits the person to the amount of visual and auditory stimuli that can be managed to perceive. The person told us that it was initially a plan to study music, but had to abandon the studies when the diagnosis with epilepsy came up. In general focal seizures emerge from just one part of the brain. Symptoms can greatly vary such as intense feelings, loss of sensory like smelling or tasting, change in consciousness, unusual and repetitive behavior. Before a focal seizure affected persons experience an aura, an upcoming feeling that a seizure is about to occur. When a focal seizure is over some people experience headache or muscle pain.
The other person has experienced generalized seizures. It must have been a drunken feeling with a narrowed field of vision and muffled hearing. The person was on their own and and watering plants in the garden when the first seizure occurred. While having a seizure the person picked up the phone, but was not able to speak properly. After this incident the person did not remember anything that has happened. Because of the diagnosis, the person decided not to go abroad for a year. Generally speaking, generalized seizures are originating from both sides of the brain. It can be characterized with loss of consciousness, falls, massive muscle contractions and weakness, staring into empty space and repeated jerking movements.
As I quickly noticed, both persons in their twenties were limited in their life choices due to the fact that they were diagnosed with epilepsy. This contact with people with epilepsy was important to me. This contact with people with epilepsy was important to me. Not only did I get in touch with people with epilepsy, but I also learned something for my own life. The disease with a thousand faces, but rarely visible, is not something you would expect a person standing in front of you to have. Reflecting on this, but not wanting to feel sorry for anyone, makes me realize how fortunate I am for my physical health. Epilepsy can affect one in ten people during their lifetime, but the majority remain unaffected. The fact that there are a lot of other possible diseases a person can have, which comes with a certain probability of being affected, makes us unaffected extremely lucky. It is something we should not take for granted.
Resources
https://www.ninds.nih.gov/health-information/disorders/epilepsy-and-seizures
