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.

One week tomorrow

I have mixed feelings about my first week. I haven't done too bad, and I lost a half a pound, which is always better than gaining. But I haven't been as good as I could be/should be, and I only exercised once (officially). I did ride my bike to and from work, which is anywhere from 5-10 minutes each way, depending on which route I take. It doesn't really seem to count though. I feel alone. I feel like there is no one to hold my hand and say, "I am here, I am with you, I won't let you fall." And I'm going to fall. I feel it, I have no confidence in my ability to stick with ANYTHING. I am a loser. I am weak. That's how I feel. It doesn't matter whether anyone reads this, everyone has their own lives, their own issues, their own challenges. Mine only matter to me. And I'm not good enough, not strong enough, to do this.

Retail Manners #8

Please give the customer in front of you in line their space (and time with the cashier).  The pace of our society is too fast. Even here in this more-laid-back city, everyone seems to be in this big rush all the time. People become harried, and because of that, they become preoccupied...at least that's the reason I use to "excuse" bad or rude behavior sometimes. People are in a hurry to get where they're going, to get all the things on their lists done, to get back to work, or to get home from work because they have a list of things to do there. People become pushy and aggressive, and one way this exerts itself is to try to "push" the line forward a little by crowding the person in front of them. Back off! You're not going to get your transaction done any quicker by staring at the person ahead of you or boring a hole in the cashier with your eyes. Some crowd so closely behind the one in front that they can actually watch the person put their PIN in the card reader. That's too close. Personal space, people. I absolutely hate to feel crowded. One way I keep the hounds at bay when I'm the one in line is to keep my cart behind me once I've emptied it. At least that way I don't feel like someone is actually looking over my shoulder.

On a similar note, please wait your turn to talk to the cashier about your transaction. Just wait. It's not that difficult, just hang on to your thought about doubling your coupon, or that thing you've decided not to buy....you won't forget, honest. Just wait until the person in front of you gets their receipt and takes their bags. They deserve the cashier's undivided attention for that few minutes that its their turn, just like you do. Insisting on telling the cashier your oh-so-very-important message before they have finished with their current customer is VERY rude. You know, I like to smile at the next person in line and say "hi" while I'm scanning the first's items, but I have this habit (right or wrong)...if I can tell that the next customer is really antsy and impatient from my peripheral vision, I will purposely not make eye contact, if I can help it, until it's their turn. Sometimes it works, sometimes they'll butt in anyway, whether I've acknowledged them or not. Yes, it really bugs me. Take a chill pill, okay?

Retail Manners #5

Give your "go-backs" to the cashier. If you change your mind about an item, there is no shame in that. All of us change our minds occasionally either because we just don't want it or decide we can't afford it at the moment. Don't leave things where they don't belong. Salespeople find stuff in the shelves all over the store all the time, and we cashiers have tried to figure out why people put their unwanted items into the impulse shelves when we're right there, but we find all kinds of things shoved in with the candy and beef jerky on a daily basis. Please, just hand it to the cashier. We don't mind....really. A cashier a few weeks ago at my store was smelling something bad near her register and after searching diligently, she located some raw meat that had been shoved way back behind the candy that had gone bad...who knows how long it had been there! On a similar note, please remember that if you change your mind on many refrigerated or frozen items and hand them back, we have to send them to claims and take a loss on them. By law, we can't put those things back, even if you assure us that you just got them out. Just so you know....

I have to talk a little more here about this subject, because it really is a sore spot for me. To me, there are so many ways that people show poor manners in stores, but treating the store and merchandise badly is so common today. People leave their Starbucks cups on the shelves instead of finding a trash can. They leave unwanted items EVERYWHERE. If a piece of clothing falls on the floor while they are looking through the racks, they just leave it there. Didn't your mother teach you any better than that? Visiting a retail store is like visiting someone's home. That's the way I feel about my store...this is my "home" and you are trashing it. When I visit your home, I don't toss my used paper towels on the floor of your kitchen or bathroom. I don't shove my used dishes behind your books on the bookshelves, I don't knock something off your table and just leave it and say nothing. Please try to think of the underpaid workers who have to deal with the messes you leave in your wake....honestly, they really have other work to do besides cleaning up after you. Little things mean a lot. Find a trash can for your trash (and if you miss the trash can, for goodness sake pick it up and try again). Try to put things back the way you find them (the attempt is worth something). I could say so much more on this subject, but I will leave you with this....I have thought for many years that EVERY person in America should have to work in a "service industry" job for at least a month between the ages of 18 and 21...either a retail store or fast food or housekeeping or waiting tables or something. I know it would make consumers more thoughtful of the people that do work in those jobs...I know it's made me use better manners toward others, because I know what it's like...I've walked in their shoes. Think about it.

Let's talk!

I haven't posted in a while.....again. I want to blog, I love to write and I like to talk about stuff, but you know, I don't particularly want to talk about me much, about what's going on with me. It's not that interesting, and I either sound whiny or boasting. But I have come up with something that I DO want to talk about.....good manners. "Oh brother," you might say to yourself, "who cares about that." Well, if you don't care about manners, then from what I've seen lately at my job, as a cashier with a VERY large worldwide discount store which shall remain nameless, you're not alone. It seems that manners are passe', people are definitely not teaching them to their kids, that's for sure. Now I have to insert here that I live in a very conservative, religion-concentrated city, and there are a lot of nice, friendly, polite people here....it's one of the reasons that I love living where I live, one of the reasons we chose this area. So if there are lots of rude, ill-mannered people here, I make the assumption that there are plenty of places where it's worse, much worse.

I have read different books and articles on good manners, and in this blog I will occasionally, maybe even often, quote other sources. But I will start today with my own feelings about good manners, after all, it is my blog. From my observations, true good manners come from a person's genuine desire to make others feel comfortable, at ease, and to show respect. Manners flow from kindness and goodwill toward people in general (and it used to be taught to all children at home and in school, along with other ancient relics, like good morals from Bible stories). Now, being polite (again, to me) is a different matter. Our society pretty much demands politeness from its citizens, at least in public settings, if they want to live and function within the society. You can be perfectly polite and still drip your contempt for another person. But if you're using good manners, you at least make the attempt to hide your ill-will, and slap a smile on your face and be nice. Personally, I prefer good manners.

Whether you agree with my definitions or not, it's a fact that society was just a nicer place when people used good manners more often. Yes, it can get a little ridiculous if taken too far, but isn't everything like that? So, I'm going to give a little free advice on my blog. Oh, I'll probably address other bees in my bonnet, but several times a week, I'm going to be giving manners lessons....short little tidbits about treating others nicely and with respect and dignity. I'll probably be stepping on some toes....including mine.