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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.

9/15/2025 0 Comments

My Exhaustion

Some days I get ridiculously tired. We don’t know why for sure. It really stinks for me. I am very certain that being this tired is not normal. It’s like I get definitely drained. My response to stimuli then is not absolutely normal: I get cranky. I wish it weren’t the case.

It happens most days, but it’s worse in high allergy seasons. In the fall especially, I am exhausted. The spring is no picnic either. My nose runs and I feel wiped out. I can tell when pollen counts are high.

I hate how this fatigue runs my life. It has consequences, like I can’t manage two academic classes in a day. I really hope my Mom can get me some help.

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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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4/30/2025 1 Comment

Poetry and Me

I am particularly happy these days because I get to learn very interesting things. I am in a new poetry class here at M2H. I have started to learn how to read and analyze poems. Last week Judy spent time explaining to us what romanticism in poetry means. She read parts of Wordsworth’s preface to Lyrical Ballads. His descriptions of who are poets really struck me. He says that they are people who feel more than ordinary. They think deeply about things, and then the poetry flows from them.

I realized, sitting there, that I am essentially a poet. I am only one of many here who fit that description. We tend to feel more than is typical. And we often let those feelings flow from us in the forms of poetry.

It is not a surprise that so many of us love that class. It is the best subject on earth.

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4/9/2025 0 Comments

The Bar Mitzvah

Alex’s bar mitzvah may have been the best day of my life. I’m not even sure I am able to express what it was like to be there in that synagogue. It really might have been God there, because there was certainly something in the air. It may very well have had the most profound effect ever on us. I struggle to stay regulated in new places, having horrific anxiety. But I loved being in that synagogue. It was like magic there. To see one of us on the bema typing out the Torah, was beyond. I felt myself wanting to cry with joy. I have to believe that there really are things we can do that I thought impossible.

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12/18/2024 0 Comments

Lucky Me

For all of my life people believed that I am cognitively impaired. But I am not - which begs the question, how many people in this world are misunderstood? I have been thinking about it a lot recently. Maybe it’s this time of year that has me reflecting on my life, and how fortunate I am. I am one of the few with Fragile X who have the ability to spell to communicate. I am lucky to be sitting here with Judy writing this. I am lucky that my parents loved me enough to not give up on me. I am lucky that my Mom brings me to Mouth to Hand several times a week. I am lucky that I belong somewhere.

I hate that there is so little belief in the Fragile X community of our being cognitively intact. I am facing disbelief everywhere. It is upsetting to me, but it also reminds me that I am incredibly lucky.

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10/14/2024 1 Comment

Moving Out: An Update

I have been living in my new house for several weeks now. It’s not nearly as bad as I’d feared. Firstly, my parents have come a lot. Secondly, the guys I live with are cool. Thirdly, the guys who run the house are super nice. We actually do some fun stuff together. Besides, eating together is really like a party….and the food is great. I am totally going to get fatter than I already am. Hahaha! It’s nice to not have my Mom cutting off my food supply.

Sometimes I have gotten homesick. I’m going to be completely honest here: I’d rather be home. But I am totally liking this as the next best option. Happy to say that I survived the move, and so did my mother. Wishing really that I could live home forever, but I know I can’t.

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9/24/2024 0 Comments

Moving Out

This week I am moving into my own house. My friend, Nick, who comes here too, is moving in too. I am terrified, to be honest. Change is more difficult for us because of our anxiety. All my friends here will soon be moving into their own houses as well. I guess it was bound to happen at some time. But I didn’t think that sometime was now. We are adults, and our siblings are moving out.

I am lucky actually, in that it is close to M2H, and I have my own room. And I have a friend with me. But, to be frank, I am angry. My sister gets so many things that I’ll never have. Moving into a group home for disabled people just brings it all home.

I am trying to have more positives than negatives. This actually makes me more independent, which is great. And Judy is super close in case of emergency. And I’m sure I’ll be home plenty. So in a world that isn’t fair, and is hard for us, this is probably the best option. So I will try to like it.

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9/5/2024 7 Comments

Few people have a family like mine. Hallmark moment: I am loved no matter how many times a day I need to change my shirt. And believe me, that’s a lot. I feel so fortunate in that. For all my life, I really haven’t wanted much. All I really wanted was to talk and to have friends. And I wanted to be loved. All my life I was loved by my family, and now I am loved by so many real friends. I can talk now too, which is the icing on the cake of my life.

So what lessons have I learned? Firstly, dreams can come true. Secondly, I didn’t dream big enough. Lol! I am going to create new and bigger dreams. I allowed my fragile X diagnosis to control me too much. I knew I was not cognitively impaired, but still fell into a pattern of thinking that made me doubt myself. Basically, I had no real ambition because, why bother? And that, of course, had me wishing for very little.

Now that I can talk I am rethinking my own wishes. I am completely capable of academic achievement, for example. I believe I am capable of going to college. I am capable of more.

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8/26/2024 5 Comments

I Am Who I Am

We are at an interesting time in history when human rights are a major topic across the country. I feel that with the growing acceptance of people’s differences there will soon be acceptance of spelling for communication. I am labeled with a genetic disorder because I am missing a part of a chromosome. That led to a formal diagnosis of cognitive disability. And I had no real way of letting people know that wasn’t the case.

After I could talk, there were still people who doubted. After all, someone with Fragile X must absolutely be cognitively deficient. Hard to have an open mind when everything you’ve learned tells you that. Seeing familiar people disbelieve my true abilities hurts. Can I teach them to see me as I truly am? I have decided to try, using this blog as a platform.

5 Comments

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X-PLAIN THIS!

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