Playing music with MG

hear my interview with John Sammel

When I was 15 years old I was diagnosed with Myasthenia Gravis, a chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles that worsens after periods of activity and improves after periods of rest. These muscles are responsible for functions involving breathing and moving parts of the body, including the arms and legs. I had no idea this disease would change my life in so many ways. Today I just want to share my story on how it’s effected my music career.

My whole experience started when I was in 7th grade at Westlane middle school in Indianapolis. I developed vitiligo and my eyelashes started turning white. Within 1 year it had taken over and my eyelashes were completely white above my right eye. This would be the beginning of my many autoimmune attacks I would experience. Next I was diagnosed with MG after my eyelid shut and I started seeing double vision. This happened when I was at North Central Highschool. Kids were already mean to me since my eyelashes were white, next I would have to deal with dropping grades, going to school seeing double, not being able to walk up stairs easily, and trouble breathing and swallowing. After realizing my drumming career was jeopardized I picked up a guitar and started practicing as hard as I could. One of the symptoms of MG is your arms get really tired when you try to hold them up or raise them. Imagine holding your hand up for 4 min, the feeling you get when you don’t think you could hold it up any more is the feeling you get after a few seconds with non treated MG. That being said, imagine trying to play drums. I had to lower all my drums and work on playing strategies that could conserve energy. Because of how I liked to play as a drum soloist I realized I should try other instruments. Guitar seemed less physical yet I still had the problem of holding my hand up to hold down chords. I began to really understand the name Myasthenia Gravis. Gravis meaning “in the grave”. To me “gravis” is gravity. My body feels extra gravity when non treated. I got on massive amounts of prednisone and turned into a fat kid within months. Nice thing was most of my symptoms were controlled and I was able to revisit being a drummer. I started up bands again and was starting to enjoy recording because I didn’t have to hold my hands up for too long like I would in a live performance scenario. In the middle of it all I picked up a banjo for the first time. Enjoyed putting my drum skills to melody, also enjoying open tuning because you can take your hand off the neck for small seconds to gain strength enough to keep going. With MG you are better after rest, even micro seconds of rest help so you can keep going with your given task. I began a concept of playing drums and also other instruments during the same show to save energy and also because I wasn’t interested in being just a drummer any more. I was in a band called the Water Company where I played drums, xylophone and banjo all as one long composition. Not to mention the recordings were starting to reflect. Looking back I’m wondering if this musical polygamy might have been routed from my heavy arms from MG. When you get tired, just switch instruments. It’s also interesting to think I might have put more effort into mastering my right hand with fingerpicking vs. my left with melodies because my right hand is not needed to hold up and is easier to play longer. Interesting thing is I started leaning towards being a melodic guitarist not as much with my existing rhythm skills. I’m wondering now how much of my musical journey has been influenced by extra gravity and how often I can take breaks to rest between musical riffs. Interesting to think so much could be influenced by the need to take short micro breaks to keep going musically. Prednisone did not save the day completely but enough to live a normal life. Unfortunately my MG would flare up every year for the next 20+ years. Double vision, muscle weakness, the whole body graveness and tiredness. In college I played less drumset and more percussion, taking breaks between musical statements was an easy way to still play but not have to hold my arms up for too long. I was learning tabla and found it a great next step to advance rhythmically without too much muscle weakness. Come to find tabla is so involved. Your form has to be perfect in order to not hurt your body. I learned to relax and play with better form which would help me play faster and longer. As I went down the path of conservation of energy I really started working on my speed. I didn’t want to lose my ability to be wicked fast on drums/ banjo/ guitar riffs so I went down an eastern path. Learning and adapting North Classical Indian music to my soul and merging East into West to create a part of who I am today. I learned to sell mattresses so I could be alone in a store without anyone noticing I was completely messed up from my disease. My story with MG was a way for me to create an emotional response helping me to feel comfortable selling a product that helped me so much with it. That product was Tempur-Pedic. I learned that more healing at night lead to a greater experience overall the next day.

After college at IU I lived many places, playing in many bands. I found myself with a loop pedal in my hands. At the same time I figured out something very very very important: The pentatonic scale with a guitar is all you need. Looping takes a little while. Especially if you don’t necessarily know what you are doing melodically. But after large amounts of marijuana and epic friends that taught me along the way… well anything is possible with a loop pedal. Not to mention I figured out I could relax my arms a little and play lead guitar and banjo. Much easier for someone who is fighting gravity. After all, you just need to do the main hard work once and the rest is all about painting on top. After 5 loop pedals I’ve found the one that really supports diseased musical orphans such as my self. The RC-505.

I’m on new meds that are helping to prevent flareups so I’m able to play gigs full time. My path may change again as I can’t be on prednisone for too much longer. New meds will require IVIG and mean I would have to stay local and to the hospital every 2 weeks for infusions. That would effect my music career again because then I couldn’t tour the world with my looper.

Thanks for reading, please support MDA (muscular dystrophy association) when they do their fundraisers. They’ve done a ton for people with worst conditions than mine.

Matt Frick 2022