Observations

I Have No Mouth…


If you normally come here for optimism and positive outlook, this might be a good post to skip. I promised you honesty above all else, and I’m honestly not feeling very optimistic today.

As time passes, I’ve learned to expect the unexpected from Parkinson’s. It’s surprised me with several unpredicted outcomes, some positive and some not so positive. Sometimes, it’s the physical and mental impact of the disease that’s surprising; sometimes it’s the unforeseen result on my relationships and social interactions. Sometimes I rise to the challenge; sometimes, not so much.

Parkinson’s is a thief, and a sneaky one at that. It’s never honest about what it steals; it gets you while you’re not looking, and takes things you never had the good sense to value, but turn out to be central to a good life.

Parkinson’s is stealing my ability to communicate. I always took my ability to explain, to comment, to describe for granted, and I didn’t realize how fragile it is. Not being able to communicate my thoughts and feelings without extreme effort is devastating, and it affects every other part of my life. It seems like such a simple thing, but Parkinson’s gets in the way at every turn.

I’m typing this blog post, because my voice recognition systems no longer recognize my voice. Siri and Alexa don’t know what I’m trying to say. Dragon Dictate tries harder, but they all three come up with novel (and sometimes amusing) interpretations of my faint, garbled, slurred statements, and it takes more effort to correct them than it’s worth.

Typing is a little easier, but only a little. I don’t coordinate movement between my two hands very well any more, so I have to type one-fingered. I occasionally can still think with some alacrity, but I type so slowly that the thoughts often get lost. My writing is less nuanced, and I often find myself taking shortcuts in my writing, opting for the simple and short rather than the complete and expressive. That may be a good thing.- I don’t know. I do tend to run on, but this externally imposed brevity is frustrating and irritating.

Although I sometimes can still think with near “normality,” I often think as slowly and incompletely as I write. This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say. My interpersonal communication as well as my written communication are altered by this impact; even with people that know me well, I perceive that there’s a “pulling away” when I’m struggling with a simple conversation or fighting to respond to a question. It’s a negative feedback loop, too – the harder it is for me to talk and have simple conversations, the more I shy away from them. I’m becoming more socially isolated, because it’s just exhausting to try and have a simple verbal interaction with someone.

I read a science fiction short story many years ago that’s been bouncing around in my brain recently. The author is Harlan Ellison, who is not a man given to stories about unicorns and butterflies in the best of circumstances, but this story was especially dark.

A short synopsis: sometime in the future, a computer system named AM has taken over and killed everyone on earth except for five people, who it keeps alive to torture. AM is very good at what it does, and is unlimited in its ability to cause misery and suffering. The protagonist of the story briefly gets the advantage on AM, and releases his companions from their misery by killing them. AM takes his revenge on the protagonist by changing him physically in ways that are too horrible to describe, and keeping him alive to torture for eternity.

It’s a little over the top, but I can’t seem to get this story out of my mind. There are obvious parallels to what’s happening me as a result of Parkinson’s. On my better days, I can laugh off the comparison. Sometimes things get dark, though, and the parallels bother me.

The title of the story is also a little over the top, but it gets at the feeling of horror I occasionally have about what’s happening to my mind and body, and my feelings of claustrophobia, of being imprisoned in my own body. On my worst days, it gets close to the feeling I have about being unable to express my most basic feelings, of being unable to defend myself in the most elementary disagreement, of being unable to correct a simple misapprehension or inject my belief and views into a conversation. My inability to be the “me” that’s still in here, but is trapped and voiceless.

I have no mouth, and I must scream.

6 thoughts on “I Have No Mouth…

  1. Craig Churchill

    Corey,
    I’ve wanted to reply to your post for some time now, but it’s been difficult—in part because it takes too much time and effort to say what I want to say—and, after doing so, I know I would be dissatisfied.

    I don’t want to put off saying something any longer, so I’m going to push through some pride, and whatever else it is that afflicts me (including PD) and share with you something I’ve wanted to say ever since you so generously responded to my request to talk about DBS surgery.

    In the 7+years since my diagnosis, I can’t think of another conversation I’ve had with anybody that blessed me more than the one I had with you.

    In your post, you write, “This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say…. “ (and I’m leaving out some even more good stuff).

    “Limits your ability to have something worthwhile to say?” That like brought tears.

    I’m not struggling as much as you are with respect to the experiences you describe here, but you put words to my frustrations that help me understand much of my hurt. I see myself in much of what you write, and it appears likely that you are describing my future. But that’s helpful to me in ways I’m too tired now to try to describe.

    I understand completely what your saying, and I wouldn’t argue with your take on what you are experiencing. But I want you to know that your words were just right for me—in large measure because of your capacity to listen. What you had to say—and the rare blend of empathy, honesty, and love with which you said it made a huge impact on me.

    Ha! Now I can’t even draw this to a conclusion that I like. I leave it at, “Thank you, Corey!” May you continue to bless others in ways that you don’t realize—and may you receive the same from others.

    Like

  2. Richard Cabrera

    Your ability to convey your thoughts regarding this condition have given flight to many similar fears and resignations we have not been able to elucidate ourselves. Thank you for all your gifts so far.

    Like

  3. Marti Reagan

    Reading your words gives me the voice that I do not hear. Thank you for expressing the horrors that you and others with Parkinson’s silently endure. I have a neighbor who is victimized by this invisible torturer and your description of inner torment helps me to understand and empathize with his daily struggles. I hope that it makes me someone whom he can embrace, even as he recedes.

    Our Heavenly Father hears your every cry; I pray that His powerful touch comforts you.

    I miss seeing you and Amy.
    Marti Reagan

    Like

  4. I cry with you, Corey King. My husband has Parkinson’s with dementia and you express so effectively and in such detail what I think he feels. Thank you for all your writing work that we have found so enlightening over the years. We are thinking of you into the future… Sylvia

    Like

  5. Lyn

    Corey, I am so sorry; I hear your pain. You don’t write much any more about your faith. I pray that you feel the Lord’s presence, that you feel him carrying you, that you feel his love, that he give you his hope and his joy, that he daily show you things to be thankful for, and that you trust him and rely on him completely. Thank you for writing, for your honesty. With much love, Lyn

    Like

  6. —Susan Averbuch

    Well said. My Identity is disappearing as my Parkinson’s w/Dementia is spiraling into an abyss which I no longer recognize. With my memory disappearing, my words can no longer defend my character. I now depend on others for most of my needs. I cry.

    Like

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