My name is Mika Filborne. I am from Copenhagen, Denmark, and I was born back in 1988. I’m a pianist (melancholic new age), composer, and keyboard player in a metal band called Saturnus. I live with my family and cat, and I also work as a teacher for young kids as my day job. I’m a friendly, happy soul who enjoys socializing with people around the world.
I first started experiencing myasthenia gravis symptoms in 2016, when I was on my way to watch a sporting event with some friends. I went 15 meters out of the door, and suddenly my vision became foggy and blurry. It was unusual for me so I went to the optician right away. My thoughts were, “Time for glasses, Mika.”
The optician told me, “There’s nothing wrong with your eyes, but something is not right here.” He sent me to an eye specialist, who also could not find a specific problem but also noted that something was definitely wrong with my vision.
I went home, and 10 minutes later I received a call from the hospital. They wanted to see me right away.
After I checked in, I saw a neurologist. She did some tests on me, and my double vision was worse. I also developed a droopy eyelid. She prescribed medication but was not able to diagnose me with anything definitive.
During this time, the double vision was horrible and prevented me from living a “normal” life. I felt fragile, frustrated, and empty. I could not see properly, and it affected daily activities in my life. I stopped my career in music, stopped composing, and felt awful.
Months went by, and I started to accept my situation and adjust to a life with an invisible disability. I began to smile and feel like my old, positive self again.
I did not want to let these symptoms get me down.
Why do we fall? So we can get back up again! That’s my motto.
I started composing again, and interestingly enough, my music improved. I started up my career again, and now I travel the world playing concerts with Saturnus (I joined the band in 2021). The double vision is still there, but I got used to it. If I take the time to relax, breathe, and reduce my stress, it’s not that bad.
Three years after I first developed symptoms, I finally obtained my official myasthenia gravis diagnosis by my neurologist. My perspective had shifted by this point, so the diagnosis was not as difficult as you might imagine.
“No cure and I have to live with it the rest of my life? Well, not many people have to suffer from MG, but okay… Someone has to have it… It might as well be me.”
MG helped me rethink my way of living. I am happy for what I have, and if my body tells me to relax, I relax. I have become much better at listening to my body and taking action to lessen the impact of my myasthenia gravis symptoms.
I play with a lot more feeling when I am in front of my piano, and many times I close my eyes and feel the music instead of just watching what I am doing.
If I could give any advice to fellow MGer’s or their families, it would be listen to your body and respect your MG. Don’t fight it! Accept it and you will win the struggle against it. Stay positive and seek peace in yourself.