I Still Have A Voice

Yes, I have a voice! Well no, not literally....but I still have plenty to say. I can be a real chatterbox, just ask my family, if they still remember that.

For those of you who know the old me, the talkative me, you'd probably be surprised by how quiet I have become. It wasn't by choice, but by a....well, I want to say a mean twist of fate or an act of God...but not knowing the mind or workings of the Lord I will say it is just how things have turned out. My voice is my "thorn in the flesh," and I alternate between begging God to fix it and asking for the patience to endure.

I have what is called "spasmodic dystonia," a neurological disorder that supposedly only 2% of the population has. Yeah, pretty rare. Personally, I think that percentage is a little higher, because I think there are a lot of older people out there who just think it's a sign of aging and don't seek treatment for it. After all, it's annoying but not life threatening (which is the reason there is little research going on for it). Hey, we even have our own "society" and website to keep us updated on it and tell us if there are any new procedures to help it (so far there aren't). Basically, my brain miscommunicates with my vocal cords and makes them spasm when I try to talk. You can have "adductor," "abductor", or add a tremor in there (I think my aunt on my mother's side had the tremor, thinking back).

It started about 12 years ago, while we still lived in California. It was intermittent so I wasn't that concerned. I actually thought maybe it was something due to sinus problems that I had most of the time. My doctor prescribed a nasal spray, which I tried for about a month, but I hated using it and it made my eyes dry out which affected my contact wearing (plus it didn't help my voice a bit). Then she sent me to a speech therapist who told me I talked in too low a register, and I should practice talking higher...you know, like Minnie Mouse. Have you ever tried doing that? Totally changing the register that you use to talk? Not just for funnsies or putting on an accent, but permanently. Not happening, folks. I'm not proud of it, but I laughed at her. I knew deep down that wasn't the answer. So I just lived with it. But I held a grudge about the speech therapist who didn't seem to know what she was talking about (more about that in a bit).

Ever so gradually, my voice got worse. Sometimes it would just "choke up," like someone was holding my throat in a tight grip. It didn't hurt (still doesn't, thank the Lord), but I would sound like I was about to cry, that chokey sound, especially when I was stressed or nervous, or embarrassed, or angry. People would get that concerned look and say, "Are you alright?" Yes, I'm fine....but so embarrassed about it.

It finally got so bad that I Googled my symptoms and found the Spasmodic Dystonia website. My symptoms fit to a tee. Chokey sounding or raspy or whispery, but you can yell past it (yes, I can still yell when the occasion calls for it, but I kind of have to gear myself up for it, it takes extra concentration and effort), other normal sounding things are laughing or one-word answers...weird huh? My laugh sounds like it always did, but again, who can go through life talking while they laugh??? It's a very odd malady. Some people can even sing just fine, even though they can't talk. Me? Mostly no.

After I felt pretty sure about what was plaguing me, I went to my GP here in Boise, who recommended a vocal therapist (one of the best in Boise), and this is different from a speech therapist, because she specializes in problems with vocal cords and not speech patterns. She was wonderful, I must say. She was kind and patient and informative. I told her my history and my grudge against the speech therapist, and she kindly pointed out that this problem was just coming to light in the last few years, and that my speech therapist and my doctor had probably never even heard of it at that point. Okay, okay, I guess I can let it go then. Unfortunately, she couldn't help me much, but she tested me vocally (mostly reading things out loud), and recommended a good ENT doctor for me to go see, to confirm her theory and make a diagnosis. He was really nice also, and confirmed her diagnosis.

Here's where it gets more frustrating for those of us suffering with this problem. As I said, there is not much research in this area because it's not life threatening. They can't operate on that part of the brain that's causing the problem, because it's in too risky a spot near the brain stem. The only two treatments for this (at this time) are surgery where they pretty much take your vocal cords totally apart and put them back together (and it's very expensive, takes a year to fully recover, and there's no guarantee that it will work...usually does, but not always...oh, and I would have to travel to San Diego or Seattle to have it done)...or Botox injections in your vocal cords (pretty expensive also, and you have to have it done every 3-6 months depending on how well you respond to it). Uh yeah...no.

Well, that was my initial reaction, but I did end up trying that and it worked great for about a year. Then it stopped working. The first time it didn't work, I thought he had missed. That is possible. He does it with a tiny camera, and has me say "eeeeee" and when he sees the vibration on camera that's where he injects, on both sides. Not a pleasant experience, but I can endure almost anything for about the two minutes it takes for him to do it (the hardest part is trying my best not to cough, because that needle moving around and re-positioning around your airway makes you need to cough almost uncontrollably, and you really don't want to do that when he has a needle in there trying to find a sweet spot at $850 a pop). So I thought he missed. We talked and after a month, he offered to do it again for free. Still no difference. Talk about a disappointment.

So I have continued to "deteriorate" vocally. I can barely speak above a whisper now, and in customer service (where I help quite a few older hard-of-hearing people every day), it's a total pain in the neck...no pun intended. Almost EVERY. SINGLE. CUSTOMER  every day asks if I'm sick or if I've lost my voice, if I have laryngitis. Yeah. Every customer. Every day. All day. It's difficult to stay cheerful and smiling about it all the time. If they say, "Oh, have you lost your voice?" I just smile and nod. If they say, "Oh, are you sick? Have you caught that flu that's going around?" I just smile and whisper, "No, I'm fine." If they keep going, which they often do (hey, I know they're being nice, being helpful, being sympathetic....I get it....I remind myself of it constantly....but it is still soooooooo irritating sometimes), and start giving me laryngitis cures, I usually smile ruefully and say, "That won't help what I've got." My co-workers sometimes try to help me out and pipe up..."No she's not sick, that's the way she always sounds." Usually we can laugh about it, but they feel bad for me having to hear it all day. Even the regulars will occasionally say, "Do you STILL have no voice???" or "Oh, hasn't gotten any better, huh?" Sigh..........no, no better.

Yeah, yeah....poor poor pitiful me. Yes, sometimes I get depressed about it (like on singing night at church...I used to love that so much...now, I would love to just listen, but I know God wants me to do what I can to praise Him, and I know I still sound lovely to Him...AND in heaven, I will once again be able to sing out, I just know it!!!). Sometimes I have just had enough by the time I get home and do NOT want to try to talk any more (which doesn't always wash with an eight-year-old who is very chatty when he gets home from school...I let him do most of the talking). Sometimes I get really REALLY close to losing it when I have to repeat myself three times at home. I have been known to yell just so I won't have to repeat it. Again. And then I sound angry and get hurt looks. I'm not angry, not really. Just frustrated and tired of the trying. Ugh.

All that very long explanation to say that I still want to communicate. I still have something to say (once in a while). Maybe I'll do it here. You'll let me have a voice here, right? Of course you will. Thanks, guys.