I suffer from a rare autoimmune condition called Myasthenia Gravis, which causes my body to attack its own neuromuscular junctions. This causes muscle weakness throughout the body, with the muscles of the face often being affected most severely.
I was diagnosed with MG in early 2021, by a neurologist who told me there is no treatment for my condition.
This is not true.
When I finally got in with a specialized neurologist in summer of 2023, she informed me that treatment exists, and my damage was repairable. I will never forget my first appointment with this doctor, bursting into tears when she told me they could get my smile back.
The symptom that affected me most, however, was the weakening of muscles related to speech, causing slurred words and a nasally voice. I cannot describe how isolating and identity-altering it feels to hear your voice being replaced by a stranger's. I spent a long time thinking I needed to come to turns with losing my voice, a core part of myself, with never being able to sing again.
Treatment was a miracle for me.
And I happened to have much of the timeline already audibly documented.
Sound is a medium I have little personal interest in utilizing, despite my love of music, but in creating this piece, I did come to realize that there are some stories that cannot be told visually. I have made plenty of poems and artworks inspired by my journey with MG, but none that felt quite as raw as this one.
I know from my experience teaching animation that it's actually not to hard to let students start working with sound, and I used the same software I taught, iMovie, to compile my clips for this work.
Not all students are visual people, and not all students have visual stories. Allowing them more options will give them more tools to express themselves and more interest in doing so.
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