Trapped in Silence

 

As stated in my last blog, I’ve had to adjust how I engage my God-given purpose. My biggest challenge in putting my gifts into action is my own body. I need every form of communication to carry out my purpose, but I battle silence; the inability to communicate. I describe it to people as feeling trapped in a cocoon of silence. It’s not just oral communication, it's every means of communique: my hands are unable to type an email, my fingers are prohibited from pressing the right buttons on a smartphone, and both hands and fingers are not able to effectively guide a mouse through the surf waves of the internet. Imagine daily isolation where the only response you get is from yourself. I can see words and imagine discourse, but my brain currently lacks the connective wiring to move my tongue, mouth, jaw, or fingers to vocalize or electronically communicate. I am trapped in silence.

Escape

My husband disagrees with me somewhat on this though and he's partially correct. We've determined that I am defeating the cocoon of silence with communication; it's just slow and arduous. After all, this blog is proof. So I guess the Spirit is saying He is not limited and I have been able to use various forms of communication. First off, sometimes I can actually speak! I mean speak well enough for people to understand. Secondly, I can point to letters, numbers, and phrases on cheat sheets, and from that the receiver can usually piece together what I am trying to say. A third means of communicating is through friends. Yes, I use some of YOU to actually communicate as you have noticed. Finally, I have borrowed a device from a local university that tracks my eye gaze, and through that, I can type letters on a screen that can be read, printed, or spoken by a robot voice.

Speech

So there are means for me to shred and rip the cocoon to break out of silence jail. I am receiving speech therapy to improve my vocal communication. After several months of looking for a therapist, I have a telehealth speech expert who has cheered me on through five 30-minute sessions at the time of this writing. I don't like to get overconfident, but I am hopeful for improvement. Parkinson's is notorious for stealing people's voices; especially in the loudness and clarity areas. 

Cheat Sheets

Concerning my cheat sheets, they are like drink coasters strewn about my house, car, and mobility devices. I have a saint of a friend who has custom-sewn pocket holders that attach to my wheelchairs and walkers. Yes, I have a couple of each. My secret pocket holder sewing friend is a bike group member and ace quilter. So if all else fails during the heat of trying to communicate with me, look for the cheat sheets and I’ll spell it out for you . . . English teacher, remember?

Friends

Communicating via friends is a new skill I have developed. I am beyond feeling awkward after 18 months of dysphasia or aphasia whichever it is. I don’t mind just sitting with friends who are conversing, listening in, and then contributing to the conversation with what audible words I can muster at the time. If speaking is poor in that instance someone usually finds the cheat sheet lying in some obscure place. I love these interactions, and it may not seem like it but I am fully cognizant of the depth and extent of the conversation at hand. There’s just this upward lug often to get my opinion opined. And my wit and intellect are completely intact, so I may tell people they don’t have to speak s-l-o-w-l-y or LOUDLY.

Eye Gaze

And finally, the eye gaze thing. Stroke victims and paraplegics have been using their eyes to communicate for years. The “thing” is a computer equipped with a camera that tracks eye movement to enable hands-free operation. I am just beginning with this system and hoping to get a college student in a speech therapy career to help with the thing. I can look at a "G" and blip, there it appears in my writing space. Eventually, I can look at your name in a contact list, open a tool, use the tool to open a text or email portal, and then craft a message and send it   . . . all with my eyes. But alas, it is slow going and tiring trying to learn the system and I’m not there yet.

Tired

People with any sort of brain disease or injury will tell you that they encounter a new form of weariness. I used to work a full classroom of 15-20 students for four, two-hour blocks a day with a 30-minute "lunch" and yes I would be tired at 4:30 p.m. when I left for home. With my goofed-up brain, any sort of communication for an hour or so produces a different kind of tiredness that’s hard to explain. Communication for me can be exhausting.

Looking Heavenward

So, concerning being trapped in silence, I am working hard to break the trap. Don’t get me wrong, I am hopeful that the cocoon will be slashed and pilfered over and over to produce at least some improved abilities to break the silence. But to be honest, I struggle with this lack of communique which has been so profoundly part of my purpose all my life. I feel like Job sometimes, who for forty-two bible chapters commiserates over the loss of his children, wealth and health saying things like "Oh that I had one to hear me! Behold, here is my signature; let the Almighty answer me!” Those verses in Job 31 sound like someone angry with God. I think it's ok to be angry with God, as long as we are taking our case directly to Him. Job’s story ends well after he “sees” God, which I think actually means he finally “gets” God. He says, “I have heard of You by the hearing of the ear, but now my eye sees You. I have declared that which I did not understand, things too wonderful for me, which I did not know” (Job 42). Like Job, there are things I don’t know or understand with respect to what I am going through. Similarly, I now “see” God differently, realizing that there are many things that will always be too wonderful for me to know. Perhaps they are just around the corner.