Sunday, May 20, 2012

Can you hear me now?

I never thought about losing my ability to speak.  Even as it was happening, I always expected to find a way to get it back.   

Communication has always been one of my strong points, or so I like to think.  I learned to read and write at a young age and always loved to write letters to family and friends.  I think I was born talking and haven't quite stopped since, until now.  All through my school years I got into trouble for talking in class.  Over the years, I have adapted to using email, Facebook, and texting as ways to keep up communication with friends and family who are both near and far.  With all of these great forms of communication at our disposal, there is still nothing like having a one on one conversation with someone.  I have enjoyed countless lunches with friends and family over the years where we talked and laughed and caught up with each other over an hour or two's time.  I have always left feeling satisfied and happy, and if the food was good, that was just a bonus.

When I started to lose my ability to speak, it was annoying, but somehow I just didn't think it would be permanent.  I first noticed a problem when I was invited to interview for a school library manager position in May 2011.  I had been having a little catch in my throat now and then and my voice was getting a nasal quality I wasn't used to.  Basically, it sounded like I had a sinus cold and I didn't want that to effect my getting the job.  Turns out, it didn't and I was hired to start the following August.  Over the summer we moved from California to Colorado, went to Hawaii for a week's vacation, and I enjoyed walking along the Poudre River paths for exercise.  My voice continued to sound nasally on and off, but it wasn't until I started work that it became really bothersome. 

By mid-day, I was struggling to talk clearly and I realized that my voice got more difficult, both to use and to understand, the more I talked.  Within a few months, my words began to sound slurred instead of just nasally by the end of each day.  It started to sound like I was drinking, which especially worried me when I talked on the phone at work … would people think I was drinking at work?  (No one ever mentioned it, so I guess it wasn't an issue.)  Another concern I had was what might happen if I got pulled over while driving, would they think I was drinking?  And if so, what would happen?  It kind of became a joke in our house, but I was actually a little worried about it for real.  Fortunately, it didn't happen.

Since drinking was obviously not the cause of the problem, I decided it was time to see a doctor, which put me on the six month long path to getting this diagnosis.  After going on medical leave and temporarily moving to Florida for more medical testing, I decided it would be fun to learn sign language along with the people closest to me so they could understand me easier and I wouldn't have to work so hard to talk.  Unfortunately, that won't help with the world-at-large or when talking on the phone, but it should be helpful at home. 

My speech has now deteriorated to being very difficult to understand most of the time and its very tiring for me to make the effort to be as clear as possible.  The people closest to me do a great job of trying to understand me and not asking me to repeat myself too often.  I rarely talk on the phone anymore because it is very challenging for both sides of any conversation I am in.  The doctor suggested using an iPad app for text-to-speech to make things easier, but my immediate thought was that I wouldn't need it because I have been making do and talking is just too important. 

After a week or so of trying to talk while crying, which is next to impossible, I decided to try out a text-to-speech app for my iPad and iPhone.  Hubby wants to understand what I'm feeling to help me though all of this, and I'm so grateful for that, but when I can't share it just gets me more frustrated and makes processing all of this even more difficult.  I still have so much to say, so much I want to be able to share, and I feel so stifled when I can't get the words out in a reasonable amount of time, or in an intelligible sounding way.  I end up having a large portion of my part of conversations in my head because I can't get my words out to share with the other person.  This is especially true when the topic is emotional for me. 

With so much to process, learning how to deal with this and trying to figure out what my next step should be, it took me over two weeks to realize that I will likely never speak normally again and may actually lose the ability to speak completely at some point.  Yet, I'm not giving up.  I still have things to say.  I still want to be a part of the conversation, not just talked at with no expectation that I can or will participate.  So please remember, I need a little of your patience and understanding right now because, as you know, I'll always have something to say.

1 comment:

  1. You have always had so much to say and I have loved listening to you. Whether you speak with your voice, your hands, your heart or technology, I will always be here listening. We will find what works, because it's so very important to us. I love you, Sam.