It has been quite a while since I posted anything about my "dance" with Spasmodic Dysphonia. Mainly this is because SD has become a mostly silent partner in the dance that is my life. However, I also have become much quieter about my SD because of bad experiences with other people who have the disorder.
A quick recap for those who might not know (as if anyone new ever reads my blog!!). Spasmodic Dysphonia is a neurological disorder which causes the muscles controlling the vocal cords to spasm uncontrollably. This makes speaking VERY difficult and, in some cases, makes breathing difficult as well. There is no known cure for SD just as the cause of the disorder is unknown. Since the disorder is relatively rare (approximately 50,000 cases in North America) and since it does not kill its victims (only makes them speechless), there is very little research being done on the disorder so scientists (and doctors) are pretty much in the dark about Spasmodic Dysphonia, its cause, its diagnosis, and possible cures. Currently, the only medically approved treatment for SD is the injection of Botox into the spasming muscles. This must be redone every 3-6 months since the effects of Botox wears off. Speech therapy is also helpful to some people with the disorder.
For me, personally, speech therapy was the key to me being able to speak almost normally again. Being able to speak almost normally is the primary reason I have bad experiences with other people with SD.
Other people with SD listen to me speak and immediately decide that I can't possible have SD.
They make this decision without really talking to me much. They don't check my medical records or talk to the people who diagnosed me. They don't listen to recordings of me taken when I was first diagnosed or to recordings taken during my years of speech therapy. They simply make the decision. And then they tell others what they have decided.
It doesn't seem like decisions made by people would be much of a problem but . . . it is amazing how these decisions cause grief.
For example, early in my blogging life I wrote a lot about my experiences with SD. I wrote as a way to share the SD experience and to, hopefully, spread awareness for the disorder. These blogs are still out there for people to read. And, strangely, people DO read them once in a while.
That is where those decisions come into play.
About a month or two ago, I got a comment on one of those old blog posts about SD.
The comment was long and very, very angry. It was from a woman (I am assuming) who blasted me for being a fake. She came straight out and told me that I should be ashamed of myself for "pretending to have such a devastating disorder" and then "miraculously being cured."
The comment went on and on and dripped venom with each word, each phrase, and each paragraph.
The commenter let me know that she (again - just an assumption as to the sex of the author) had spoken to members of the NSDA board (NSDA is the National Spasmodic Dysphonia Association) and they had told her that I really didn't have SD but had MTD (Muscle Tension Dysphonia) instead. MTD can mimic the symptoms of SD. In MTD the muscles in the neck and throat tighten up to the point where they restrict the vocal cords and cause dysphonia. It was said that I have MTD instead of SD because speech therapy had "cured" me and if I really had SD, that would not have happened.
Interesting how these people, none of whom have a medical degree to my knowledge and none of whom have ever spoken or consulted with my doctors and/ or speech therapist, made the decision that I didn't have SD.
Interesting how the commenter took the word of these non-medically trained people as gospel and then decided that I was lying about having SD for some nefarious purpose.
Interesting how the commenter decided to let me know and to "Shame" me into telling the truth.
When I got this comment, I read it and then promptly deleted it.
I didn't respond in any way until today. Why? Frankly, it is because I know the truth. My family knows the truth. My friends know the truth. That is all that really matters to me. I am tired of people doubting me because my voice is "too good." They don't know the hours and hours and hours of work I put into my therapy. They don't know all of the different things I tried. They don't know my experience because they weren't there. I severed my association with the NSDA because I was tired of defending myself to people who made decisions without finding out the truth.
So, I didn't respond.
However, I spoke to my mother last night about the comment (I hadn't told her about it previously and it came up during a discussion about my speech therapist). She was angry and said I should respond.
That made me wonder. By responding, do I validate the commenter? By responding do I continue to ignorance?
By NOT responding, do I validate the commenter? By NOT responding does the commenter think she has "hit upon the truth?"
To Respond or to Not Respond. That is the real question.