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Living with very severe #mecf 1: Silence
Before Mila became very severely ill with #mecfs, playing the cello was a major part of her life and identity. I loved listening to her playing Bach’s suites while going about my work – until she became too weak so sit upright.
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Before Mila became very severely ill with #mecfs, playing the cello was a major part of her life and identity. I loved listening to her playing Bach’s suites while going about my work – until she became too weak so sit upright.
1/8
Today, due to her extreme sensitivity to sound, our house is very quiet. A sign at the door asks visitors to enter softly without ringing the doorbell. We never have more than a handful of guests, no loud talking or laughing, no singing or playing the cello or violin.
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In Mila’s room, total silence prevails. She can no longer speak due to extreme weakness. But also listening to just a few words is too exhausting and causes PEM. Some communication can be avoided by adhering to a strict routine. Plus, she uses finger signs that she developed.
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