Sunday, August 7, 2016

My Isolating Disability

It’s Sunday morning. I’ve tried already: absolutely no voice. Today is my third day in a row being a mute person.
I think of all I am going to do today. I plan to go for a walk and, at three pm, welcome my friends David and Bryan who are interested in the bicycle I am giving away. Next I think of the things I might have to say for each activity and I pre-load the sentences I may need into my speech app, Proloquo2go.
For my walk, I need my standard sentences:
  1. Hello. I can’t speak. Please bear with me while I ask you a question.
  2. Hi. Thanks for your concern but I am fine. I am having a seizure and just need to rest. Could you please remove my glasses and anything in my hands?
  3. Could you please ask me that again in a way that allows me to answer “yes” or “no?”
When a need arises I stop and type my question into my app. For example: “Could you please tell me where I might find a washroom?” Then I approach an attendant, play the “Hello. I am unable to speak,” sentence and then the question.

As for the visit of my friends, I sent David and Bryan’s my “coming out” booklet that explains my diagnosis and I emailed them to warn them I can’t speak at all. They are interested in my bike. It was an expensive purchase but my medications preclude using it so I am keen to give it to Bryan. For them, I have written an essay about the bike and why I can’t use it any more. I’ve asked that in exchange for the bike, that they take me to a fine dining restaurant for dinner. I have also banked these sentences into Proloquo2go’s memory:
  1. Would you a coffee or espresso or tea?
  2. Would you like some of my homemade ice cream?
  3. Would you like a strawberry or pistachio cupcake or a slice of orange ice cream cake?
I can neither answer nor stop asking myself these questions:
  1. How long will I be unable to speak?
  2. Why am I getting worse, not better?
  3. What happens to your friendships when you can’t talk any more?
When I am outside:
  • I feel jealous of speaking people.
  • Angry at people “wasting” their speech ability on inane things. (Can’t help it.)
  • I am frustrated. I cry sometimes.
Every once in a while, I can speak a whole sentence or two but then I am mute again.
Proloquo2go is an expensive app that works on my iPhone. When I look at my phone now, I actually feel love for it because it gives me a voice. It’s my prosthetic.
Yesterday I experienced moments of despair worrying that my imaginary but vital friend, God, was angry with me. I worried my muteness was His punishment. Today I know that I was wrong to have that fear and doubt because in spite of everything, I am not depressed.
When I smell the lemon in the lather of my soap, or Barbara Lowe’s sweet peas, or when I look at the faces of children or into the eyes of a dog I experience an ecstasy that than compensates for my isolating disability. They are messages from Him; we are okay.

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