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X-PLAIN THIS!

BY MARC MUHLMEISTER

My name is Marc Muhlmeister, and I have fragile X which means, by definition, I am cognitively impaired. That just goes to show how meaningless definitions are because I am most certainly not cognitively disabled. And now that I can talk by spelling, I believe that I can be a spokesman for others like me. All people who are nonspeaking are defined by that inability. It’s a wrong that must be righted. I am to be a voice for change. 


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8/8/2025 1 Comment

Fortunate Me

I am totally into songwriting and poetry. I am so lucky to have the opportunity to learn and create. I am learning about Wordsworth now. We are reading poems like Resolution and Independence, Tinturn Abbey, and Intimations of Immortality…


I love it so much. 

No one thought it possible that I could have normal intelligence. For so long I really had no hope. But here I am now, reading Wordsworth. And I can analyze his use of meter or anaphora or epizeuxis. (My Mom has no idea what any of that means!) 

That’s the thing about Mouth to Hand.  Everyone here acts like our disabilities don’t matter. I am so eager to learn, and here I finally can. There are no words to express how that feels. I am fumbling right now trying to express it. It’s like that moment when the sun comes out from behind the clouds. Our lives are so immeasurably improved being here. I am so lucky.

There are so many people with Fragile X who will never have what I do. That makes me so sad - but it also makes me so grateful. I am loved and valued here. 

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1 Comment
Heidi L Rome
8/11/2025 11:40:10 am

Hi, Marc! My son Ethan, 19, also has Fragile X, so I know how brilliant AND word-loving you guys are! One of the earlier things that Ethan spelled was that we were asking him questions and words that were too easy. He asked that we ask him to spell 13-letter words! Of course, he spelled them (and knew their meanings flawlessl). And, like your mom, I was usually stumped by what was effortless for him! So, I am so delighted that you are sharing your experiences with us. Thank you SO much for being an advocate and ambassador for yourself and your friends, even those you haven't met yet! xo

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