Thursday, November 6, 2008

Woman Without A World

Hi All!

If you have read this blog for very long, I am sure that you are aware that I have ABductor Spasmodic Dysphonia (ABSD), an incurable, neuological vocal disorder. This disorder makes speech very difficult, if not impossible for most of the people who have it. The only treatment is Botox injections into the muscles which control the vocal chords along with speech therapy. If you would like to find out more about Spasmodic Dysphonia, go to the National Spasmodic Dysphonia Association's website.

Anyway - I have ABSD, the rarest of the two types of SD (the most common is ADductor SD) and had basically no "normal" voice at all for over a year beginning in the fall of 2006. I had two Botox shots and extensive speech therapy. Amazingly, against all odds, I have gotten about 95% of my "normal" voice back over the past several months. No one is certain just why I have been able to get my voice back. I personally consider it to be a miracle.

So, now you have the background. That leads me to my title for today's post. When I was first diagnosed with SD and when I first started losing my voice I became aware that I was becoming less and less a member of the "heard" world. The world where people speak and are heard and understood by others around them. Since my voice was leaving, it became more and more difficult for me to be heard and to communicate. The other members of the "heard" world started ignoring me or treating me like I was mentally impaired. It was almost as if I was physically fading from view as my voice became weaker and weaker. By the time I had no voice, it seemed like I was no longer a "real person" but rather a shadow walking among the "heard" world.

My self-confidence started to fade as my voice did. I had always been a person who could speak in public to pretty much anyone and now I couldn't do that. In order to make myself understood I had to repeat myself endlessly or write down my message. You might think writing messages would be fine but, people in the "heard" world are not used to people handing them notes and react in surprising ways. Some people are threatened by the notes and take them as if they will explode in their hands. Others seem to be offended that they have to take the time to read a note. Either way - not a big confidence booster.

A short while after being diagnosed with ABSD, I found another world, the "unheard" world. The world of people with SD. This world communicates with the internet and emails. They meet for support group meetings. They have to struggle to find different ways to communicate their needs and wants. Many of the "unheard" have to retire or change jobs because they can no longer meet the vocal demands the jobs require. The "unheard" make trips to doctors to get Botox injections and work with speech therapists with different levels of success. They understand the difficulties of using telephones and talk about the merits of text messaging. The "unheard" share common experiences of being made to feel like less of a person simply because of their lack of a voice.

The "unheard" world made me feel better. I was like the other people in this world. They understood. I felt comfortable in that world.

Until I got my voice back.

Now, I almost fit into the "heard" world. I can pretty much talk normally whenever I want or need to. I no longer have to carry paper to write notes about what I want to order at restaurants or purchase at stores. Most people don't even notice the slight breaks and pauses in my speech unless they are really listening or unless they know I have SD. However, I am not like the people in the "heard" world. I have SD. The issues of having the disorder are still on my mind pretty much all the time. The lack of self confidence - especially about my voice - is still firmly implanted in my mind. I almost fit - but not quite.

However, I no longer fit well into the "unheard" world either. Many SD people can't believe I actually have ABSD because they never heard me prior to getting my voice back. I sound too "normal" to share their concerns or problems. True, I have experienced them all before but I don't have most of the same issues anymore now that I have a voice. Somehow it doesn't seem right that I am advocating for SD when I don't sound like I have it.

So - where exactly do I fit in? Where do I belong now that I have SD but don't really sound like I do? Do I pretend that I don't have SD and merge with the "heard" or do I continue to spread the word about SD and attend support group meetings (okay - not the group I got banned from!) with the "unheard?" Is the fact that I can talk relatively normally good for SD people to hear or does it give them false hope for their own condition?

I am lost between worlds!


Voice Update: Still doing really well. I am not feeling like talking too much - in my "down" cycle due to problems with Skor and ASL class. I am doing my massage though.


Ecolo said...

How eloquently spoken! Please don't leave the world of the "unheard". You give us hope and encouragement which we need. Thank you.

Chris H said...

Maybe, as you can now talk almost 'normally' you need to merge back into the 'normal' world? If people with SD don't feel you fit in with them anymore, well maybe you don't! You still have SD no doubt... tis a hard one to work out!

Coffee Bean said...

Oh my gosh am I behind on your blog!!! YAY FOR YOU!!! How cool is that?!?!

I know how you are feeling. When I had those two injections that worked I put SD out of my mind and went on with my life as though I didn't have it anymore. But, I did and do. I had some minimal success with this last injection that is already fading fast. I go in on the 19th and will be getting the injection with the camera... oy. I hope it works though.

I hate that feeling of not having an area that you fit in with others... SD makes everything so much harder! I have that feeling in many areas outside of my voice. But... you've got to be YOU! I say handle it how you want. You are unique and maybe there are those around you that are inspired by the fact that you don't fit in but keep on going. You know?

Also, please ENJOY it! I pray it lasts FOREVER! But, if it doesn't, I would hate for you to look back on this time and remember fretting about how long it was going to last. Use it! Do everything you haven't been able to do! And tell us about it!