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To Speak. To Breathe.

The muteness of Myasthenia Gravis.
The muteness of Myasthenia Gravis.

Myasthenia Gravis affects everyone differently. For me, it impairs my speech, breathing and vision.

Six months ago, myasthenia gravis stole my voice. It’s left me near mute, with only a crackling, high-pitched tone to replace the fluidity of my former speech.

In truth, my voice has been failing for the past ten years, but only recently has it seriously impacted my life, making work and social situations awkward and uncomfortable.

Unable to communicate effectively in a verbal manner, I’ve noticed people ignoring my opinions and comments, as if the loss of voice corresponded to a loss of brainpower.

To Speak. To Breathe. is the pictorial representation of my most noticeable symptom of myasthenia gravis, the frustration that accompanies the disease and the sense of absolute release and relief I will feel when I regain my speaking ability.

Although I’ve never been a big talker, I’ve noticed an interesting phenomenon: with my speech impaired, I’ve suddenly realized I have something to say.

Comments 3

  1. …..left speechless by your art piece, imagining the frustration of having things inside left unsaid. Thankfully, God gives us so many other forms of communication, and you are so good at so many of them…writing a story, a beautiful art piece, a smile….Thank you

  2. Wow, your art is so beautiful. I wish I was creative! I too have MG (well, Congenital Myasthenic Syndrome to be precise) and can empathise with your frustration at losing your voice. My facial muscles are the most temperamental of all my body, so if I’m not in tip-top condition then my eyelids droop, my mouth sags and I sometimes have problems chewing and swallowing. In extreme cases my speech slurs. It’s hard because in social situations I can’t smile for too long and I don’t want people thinking I’m being rude or that I’m bored! There really needs to be more awareness about MG – because I’m not in a whleechair any more and look, for all intents and purposes, ‘normal’, when my eyes droop, or when I can’t lift something or say I need a rest, people tend to think that I’m being lazy or melodramatic. Teachers in school used to tell me off for sleeping in class, when the fact was I physically couldn’t keep my eyes open and couldn’t sit up! I try and educate people wherever I can, and I think your artwork is a great way to do that – keep it up! 🙂

    1. admin Post
      Author

      Thanks, Stephanie. My MG didn’t start acting up until my 20s, but I can only imagine how hard school must have been for you.

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