Voice Lessons

Was Nancy comforted that Maggie had begun to communicate? Less than I thought she would be. I had expected that she would be thrilled that Maggie had reached this longed-for elusive milestone. But in fact, Nancy was incredibly frustrated, even alarmed that Maggie had access to communication as infrequently as she did.

It seemed that Maggie's ability to communicate, as intermittent as it, was most dependent upon the reciprocal skill of a speech therapist who visits Middleboro three times a week. According to Nancy, she “is the only one who communicates with her.”

So was it comforting that at least it happened on those occasions?

Nancy tells us, “I mean it's comforting to know that it can happen, but kind of frightening to know that it only happens a few times a week when the speech therapist is with her. …” And then, “… not regularly, partly because Margaret hasn't been consistent …” in her pattern of communication. Sometimes the therapist shows up and Maggie won't communicate. Other times when she might, the therapist is not there.

Imagine the scenario, first you learn that your daughter is conscious and not vegetative, that she can understand and sometimes communicate. Then you discover that those precious opportunities are limited to but a few hours a week. And in those other moments, you suspect that she might be able to communicate, if given the opportunity. But until that happens, she is silenced.

Nancy is frustrated and she believes that Maggie is as well. She also thinks that her daughter is angry and depressed too. Nancy told us, “So I mean I'm frustrated … how can I really be happy about what's happening with Margaret when it's so limited. …” Like many patients with disorders of consciousness, Maggie finds herself wholly dependent upon others and/or machinery to regain her voice, to have the ability to communicate with others. To express a thought, tell us she is in pain or hungry, or tell someone that she loves them – all of that self-expression is dependent upon the resources necessary to pay a speech therapist (or support a run in the scanner).