Speechless

Here is a graphic about my illness to give you an idea of the things it has, does, and will affect.

Inability to verbally communicate.

I have been a spectator to this with my friend who has ALS, and it is hard. Talk about a massive loss of control. Imagine the amount of having to slow down and let your actions speak louder than your words, or in this case instead of your words.

Over the past few months my voice has begun to weaken. At times it’s raspy, or sounds like I’m hoarse or getting sick. With this new development my speech therapist started the process for me to get an AAC device as an alternative means of communication. Control Bionics and my speech therapist have been wonderful to work with. They were very efficient at getting me set up with a device that will meet my current needs, as well as my needs as my condition continues to change.

At first, life with my AAC was about getting familiar with it and practicing navigating between the pages and words and phrases to best communicate. My device has sensors on the front that either detect my eye movements, or a slight muscle movement of my hand, and it selects the letters or phrases I want to say. It’s amazing we have this kind of technology, and I’m humbly grateful to be able to use it. I even had the opportunity to bank my own voice so that when it speaks for me you will still hear my voice. This part is expensive, but we are looking for solutions!

This past week my voice has taken a turn. One morning I woke up and barely had a voice at all. Some of it returned, but I now sound like a quiet, scratchy record with the occasional skip where nothing comes out at all. Truthfully it’s been a little unnerving seeing how fast I could be plunged into silence.

Hardly anyone can hear me anymore, and the effort and breath it takes to make my voice loud enough to project across a room is exhausting and frustrating. I wasn’t expecting this part to be so hard, but it’s hitting me right in a tender spot I didn’t know I had. I feel panicked to not be able to explain myself, threatened by the thought of not being able to call out and get my kids’ or caregivers’ attention. And if you see me singing along in church I’ve fooled you. I’m lip-syncing.

Another practice in total surrender; in cupping my hands around what’s left and holding out all I have to offer. A chance to do more listening than talking. Another practice in giving up what was and adjusting to what is, and believing that regardless of the journey or the outcome, I am held.