Wednesday, August 8, 2012

People -- I can't speak, but that doesn't mean I can't hear or think...

The good news is that my vocal cords and cricoarytenoid joints near my larynx are not affected by my rheumatoid arthritis. That was my major concern last week -- about a month ago my voice started deteriorating for no apparent reason, and the muscles around my neck were inflamed. The trip to the ENT left me with a diagnosis of "muscle tension dysphonia":
Muscle tension dysphonia (MTD) occurs when the muscles around the larynx (voice box) are too tight during speaking, such that the voice box does not work efficiently. A person may use excess tension when speaking, and the voice may feel quite strained. Some patients complain that the throat feels tight or even feel a muscle ache due to MTD. The voice may sound strained or tight.
Why did this happen? I didn't put it together at first, but my guess on timing is that one of the meds I increased in the last month (Lyrica) to address the neuropathy in my feet may be the culprit. Its side effects have increased, including 1) increasing dry mouth and 2) edema or swelling in feet/ankles. Basically most of my fluid intake was going to my legs and feet each day, depriving my vocal cords of moisture; my muscles started tensing up because it hurt to talk. At night when my legs are elevated, the edema drains and I have to go the bathroom a couple of few a night. Then in the AM my feet and legs are back to normal size, and that cycle starts again. I was definitely not drinking enough either. Not a great incentive to do so when you're up at night peeing out all that excess fluid.

So, the "cure" is 1) voice rest, 2) PT, 3) drinking at least 64 oz a day (argh) to balance the impact of the Lyrica and get my muscles relaxed and my vocal cords adequate moisture. The ENT's sending me to voice therapy and PT for my neck and shoulder pain on Friday and Monday, but the big fun is my voice rest mandate for the week. No talking, save a few whispers will help reduce the muscle tension and strain. 
How's that voice rest working out at work?
This is amusing and frustrating to experience. When I'm at work I wear a clever button from the Duke Voice Center that says "I'm resting my voice" to remind me to shut up and to let people know I'm not being rude by not speaking to them. Even so, people come to my door, or see me in the hall and inadvertently do everything in their power to try to make me speak. Like asking how I am or why I'm wearing it is nonsensical, but it has repeatedly occurred.  Now I do know a bit of American Sign Language alphabet, but that's unhelpful if the other person doesn't know it.
This inability to communicate vocally is hard for people to wrap their minds around.  I've had work colleagues:
1) whisper at me;
2) speak louder than normal to me as if I cannot hear;
3) think my lack of voice means my brain isn't functioning ("I'll leave you alone," or "I'll come back later")
4) talk to me and still expect me to speak, as I mentioned above.
I've had to cancel meetings that I usually moderate and ask colleagues to email me with questions about reports that we would have gone over in the meeting. In one meeting that I attended but did not moderate, there's also a lot of awkward impatience involved (for me and them) with waiting for me to write out comments or observations to add to the discussion.
But this temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.
Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid. Oh, well, it gives me more precious time to do desk work.
I haven't tried this yet, but I suppose real-time chat, projected on a screen in a meeting would help things along, since I type faster than I write longhand.
Many singers and people who professionally use their voices a lot usually have to partake in voice rest from time to time to preserve their pipes. My experience with voice rest this week makes me wonder how they manage with the intense social pressure to speak when they shouldn't.

1 comment:

  1. It's exactly like you described. People don't know how to slow themselves down or work with sb on a different level.

    And trying to be fair, it's hard to learn this skill, it's something I've personally only become decent at after years of living in bilingual circumstances. I just wish people knew of the need to be aware/slow oneself down/be compassionate about communication differences.

    While reading this I was reminded of conversations between two people at different abilities in a language. All of these things you describe happen in that situation too, if the people involved have never had to deal with slowed down/frustrated/unusual communication before.

    Sometimes there's an added social dimension: If I believe I won't be able to understand you, my listening comprehension takes a huge dive. Here's an example that I've personally witnessed more than once:

    Obvious Foreigner: (perfectly coherent sentence.)
    Opposite person: (says to third person) What did she say?
    Third Person: (rolls eyes and repeats what OF said exactly.)
    Opposite person: Oh! (continues talking to TP and doesn't speak to OF again..)