On muses and compromise

Do you mind if I just…muse while I search for a muse?  I don’t know where this will go, but, let’s just see what happens, shall we?

I’m in dire need of some writing inspiration.  Without writing, I feel like I’m withering, shriveling up, dying inside.  My revelations and self insight and connection to the world come through my fingers, so when my fingers don’t move with some frequency, my knowledge of myself and my surroundings dwindles to nothing. 

Typing is integral to being, understanding, connecting, for me.  I must type.  The talking world confuses me, boggles my brain.  I don’t like that feeling.  It’s hard to understand and even harder to respond.  This girl needs to type to make sense of things.

You can encourage me to talk.   You can even demand it.  And, for some amount of time, I will talk.  I will force myself.   Sure, you might get ten words every hour, but I’ll do it.  And then I’ll start to melt when I’m done talking.  And then I’ll shake, and get dizzy, and feel sick.  And then my head will spin.  At some point, I will stop talking.  The longer I push, the longer I’ll stop. 

So then, we’ll sit in silence for long periods of time.  How do you think it feels for me to be silent?  I think you know that I am an intelligent, complex, sentient being… and for that matter, a being who needs to communicate (lest you wonder, I think that every being needs to communicate).  So if there is to be no typing, what is to happen when I can no longer speak at all?  That will happen. 

I fear that they think I’m being manipulative.  “But you were always so verbal,” they might say.  Yes, but did you notice all the things I couldn’t talk about?  Did you notice how limited I was?  I want to communicate about more than Elsie, Food Network, medicine, NOTHANKYOU, and, “You would please stop that! My ears hurt!”  I want to talk about feelings, dreams, possibilities, hypotheticals, my faith, my fears… do you see now?  There is so much more.  I am so much more. 

I don’t think the goal should be decreased dependence on typing.  No, I think the goal should be increased communication in a way that works for me. 

I’ve spent 22 1/2 years trying to talk (I am 23 1/2 years old).  I’ve also spent almost that long being frustrated, exasperated, confused, and horribly stressed out.  I know that, to some extent, I must learn to function in society… but at the same time, I must learn to make the world work for me.  In this case, that means typing.  I am so over learning to fit in at my own expense.  That’s not fair to me.  What I am now all about is adaptations… in this case, typing.

At 23 years old and with the mentality of an 11-year-old (according to Mom, who knows these things), I don’t always know what’s best for myself.  But I’m learning to know, and in this case, I do know.  I frequently defer to treatment team and Mom, but this time, I want someone to listen to me.  I have professionals (doctor, speech/language pathologist, therapist) who agree with me, too. 

While I totally have it in me to be maniulative (you think autistics can’t be?  think again) and refuse to speak, I will fight that urge and not do that.  I will speak when I can, so long as you believe me when I say I can’t and let me type. 

Compromise.  Couldn’t we all use a little compromise?  I think so.

Back to searching for my muse (truth be told, I don’t know what a muse is… I just know that one lets you write, so I want her!).

 

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5 thoughts on “On muses and compromise

  1. Lydia, you are exactly right about the communication issues. I am in total agreement with you – and, so are the professionals. In our house, we are thankful for the tools that allow our girl to communicate when the words are not there and she can not speak. We do not get upset or negative – we applaude that she is still able to communicate.

    I do hope that those in your life can understand. I really do believe that sometimes you need to make your world work for you.

    Amen

    • I’m considering hiring an advocate… NOT because I do not think people are doing their jobs right, but because making requests and talking on the phone and all this stuff is just way too much for me. I feel beat up when I try. A friend’s mom has offered to advocate for me, and I have to talk (er, type) to Mom about it, but we may well take her up on the offer.

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