Say What?

I was talking with a co-worker the other day and I guess our topic of conversation was something that most of my co-workers wondered about, because within minutes what started out as a one one one conversation became me talking and educating 5 people on the subject before the sixth person came in mid-conversation and asked why I was whispering. Seriously? Did his parents never teach him that is was rude to interrupt?

Before you think that my statement about me educating my co-workers makes me sounds arrogant, let me explain…we were talking about spasmodic dysphonia, a neurological condition that affects the nerves to the muscles in the larynx, or voice box. Why am I such an “expert”? Well, I happen to have it. I’ve had it longer than I can remember, if I had to guess I’d say since at least 1996 but it wasn’t until 2008 that I was officially diagnosed by an ear, nose and throat doctor. I remember that whole experience pretty vividly and I’ll spare you the details, but when all was said and done the doctor made the diagnosis and followed it up with, “there is no known cause and no cure but it can be treated with botox injections to the vocal cords.” …. ummm….if I’m going to do botox it’s not going to be in my vocal cords. I mean, I can’t talk for a few weeks after, I might not be able to swallow and it’s not permanent so I’d have to do it over and over again. Let’s not even mention the two lines between my eyebrows that could use it way more than my vocal cords….just sayin!

One thing to know about me is I like closure and answers. I need cause and effect. So that whole bit about no known cause didn’t sit right with me. I started looking into it and every source I found said the same thing which was essentially what the doctor had already told me. Just as i sat down to write this, I did find a source that validated what I came up with after doing my own research.

The source rarediseases.info.nih.gov said that the cause is unknown but some researchers think that it is caused by problems in the basal ganglia in the brain. The source further stated that for some people the onset of symptoms may occur after an illness or injury affecting the voice box, or after a time of emotional stress. I did not know the part about the basal ganglia, nor did I have an illness or an injury to the voice box. I did, however, look into notable people who have spasmodic dysphonia; Katherine Hepburn, Diane Rehm, Shania Twain, and many of the Kennedy’s.

Once I learned what it was, I could tell if someone had it just by listening to them. There are different types and each sounds different. Hepburn had the shaky voice, so does Diane Rehm. Robert Kennedy to me sounds like he’s out of breath or struggling to force air out. Apparently, I sound like I’m whispering. Sometimes people ask me if I’m ok or tell me I sound like I’m about to cry. But I digress, what I concluded after looking at all the people who have it, was that each of these people did suffer some sort of emotional stress or trauma. Almost as if to confirm I was on the right track with my thinking, I got a new client on my schedule and wouldn’t you know it, she had spasmodic dysphonia! As I got to know more about her and her story, I learned that she also went through some very stressful and tragic life events. I tend to downplay the things I went through as tragic in comparison to the life of Katherine Hepburn or any of the Kennedys, but is all relative and I went through some pretty significant and emotional changes in 1996 & 1997 which was right around the time I remember this starting.

Personally, my toxic marriage failed, despite counseling and repeated attempts to save it. Professionally, the company I worked for was bought out by another company and the position I previously held where my voice and input not only mattered but was respected was taken and my new position gave me no voice whatsoever.

I spent most of my time since the diagnosis avoiding phone calls, drive thru’s and Siri as well as looking for any snake oil that might fix it. I’ve gone to vocal therapists that have given me 20 minutes of vocal exercises and told me to do them every hour on the hour… ummmm I’m coming to the conclusion that acceptance and letting go are indeed my best options….the problem is that I’m such a control freak that I’m trying to let go. One day at a time and one conscious letting go at a time. Say a prayer for me! 😉