The Sounds of Silence

Assuming one tells the truth, the most direct way to communicate is by talking. People will understand you fast and best you say what you mean and mean what you say. However, communication takes many forms; talking is just one of them. We use non-verbal communication all the time, whether we realize it or not. A raised eyebrow, a shoulder shrug or even a facial expression can reveal more than words ever could. We “read” posture, expressions, and gestures to understand the people around us. Anyone with a pet relies on non-verbal communication. We also communicate with sounds other than actual words. We giggle, sigh clear our throats, drum our fingers and do dozens of other things just like that. We find ways to communicate because we need to connect with one another.

When Maggie was younger, I knew if I could change only one thing about her disabilities, it would be her inability to talk. The wheelchair was no big deal, the feeding tube, catheters and even the diapers were manageable. I would have her be able to talk to me. If only she could TELL ME what she was thinking, feeling, etc.

For various reasons I do not really feel that way anymore. Things have changed over time. My fears are more profound as are her needs. If I could only fix one thing, I would have her be able to BREATHE. As she got older and a bit bigger, her disabilities overwhelmed her respiratory system and she needed the tracheostomy to survive. Breathing is more important than talking. In addition, though, Maggie does not need to tell me what she is thinking; she communicates it in other ways. And I understand her.

Communication is, by definition, two ways. One party has to receive what the other communicates. Maggie’s receptive communication skills are excellent. She understands words, nuances, moods and every other form of communication. It is not automatic with strangers (for Maggie or for any of us), but for people she knows, she just “gets it.” She easily demonstrates her emotions by facial expressions, gestures etc. She uses her communication device as a tool as well.

The one thing Maggie cannot use is verbalization. She used to, but not anymore. Her “voice” is silent. Her laugh and cry are silent. She used to screech for entertainment, but that too is silent. The placement of the trach means air that would generally go through the vocal cords (and produce sound) is coming out through the tube. If I hear any sound from Maggie, I spring into action because I know one of two things is going on. Either the trach tube needs to be cleared, or worse, the tube has dislodged. It was freaky at first, but not so much anymore. It is just part of who she is. It is ironic, though. I used to wish she could talk and now any sound from her means she needs help.

Maggie has found things to substitute for her voice. If the communication device stops working, Maggie just bangs on the tray of her wheelchair. If she wakes up and someone is not right there staring at her, she kicks the side of the bed until someone comes to her. She communicates her wants and needs.

I miss a few things. Maggie had the BEST laugh. She would laugh so hard she would have to stop for air and it always ended with this gleeful sound as she got the air she needed. I would love to hear that laugh again. She still laughs, but it's silent. Once in a while we'll hear a little peep if she gets into a certain position, but other than that, it's silent.

Maggie was able to say one word before the trach placement. The word was "mama." She used it to get what she wanted, to communicate her pleasure or displeasure, changing tone and pitch of her voice. If I was not home, she said it in a demanding way that was “Where is she?” If I walked in, she said it in a jubilant way, to welcome me back. If she wanted to bug me, she said it over and over and over and over again.

You know what? It never really bugged me. I would give anything to hear that again.

We communicate fine without that one word, but it was always nice to hear.