Tuesday, June 25, 2013

Myasthenia Gravis Awareness Month: Speaking Up

Today MG is making it tough for me to speak up. MG stole my speech. I was supposed to record a few chapters in my audiobook tonight, but my speech is unintelligible.

I can feel exactly what is going wrong with my facial muscles and tongue. I'm having trouble closing my jaw, so my mouth is hanging open. The muscles that control my cheeks and jaw are moving in slow motion. Some aren't moving at all. My tongue cannot reach my teeth. It takes 100 muscles working in perfect synchronicity to speak a sentence. Many of my facial muscles are offline right now. Of all the crazy ways MG screws up my body, speech difficulty is one of the most distressing.

Losing my speech separates me from other people. This separation is painful and lonely. I can still participate in community events from a wheelchair, or sitting down at a table. However, without speech, I cannot connect unless people are willing to wait for me. Text to speech technology is clumsy and frustrating. By the time I am ready to make a comment, conversation has already moved on without me.

There is a difference between choosing to be silent and having silence chosen for you. MG has chosen to silence me against my will. So I am speaking up through my blog.

Although I find the loss of speech isolating in person, I can still connect online, and that matters to me.


  1. Thanks for sharing your perspective and "speaking" up

  2. Wow, Marie. What an evil irony.

    I'm touched by how you used this to share a very powerful message.

  3. I am blown away by your honesty and bravery and I wish I could reach out across the internet and hug you.

  4. Sending you a big hug, Marie! My dad was robbed of his speech twice by two strokes...I so sympathize with you and I realize even more now how lonely and separated from people my dad must have felt,because he got frustrated and we got frustrated. But we should have been more patient. Thank you so much for your insight.



I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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