Posted by: Mary Bifaro ®
01/17/2008, 13:31:39
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Dear "Snowie",Happy New Year! We have missed your posts on this bulletin board. It sounds like you have made some big changes in your life. I hope that they will all "pan out" for you down the road. I think that we can all relate to your comments about your new job. In my opinion, you will be able to overcome the problems with having SD as you have done in the past. There is an American author named Richard M. Cohen that I'd like to recommend to you. He has MS and is a cancer survivor. He wrote an uplifting book called "Blindsided" several years ago. He has just released a new book called, "Strong at the Broken Places". I saw a tv interview with him and his wife last night. Cohen's most recent book profiles 5 people with chronic illness. At present, there are 90 million people in the US with chronic illness. Apparently, "Strong at the Broken Places" talks about how to acknowledge a medical condition and not let it define your identity. There is hope in Cohen's book because each person profiled struggles to live while they can - as best they can. In going on with everyday living despite having chronic illness, you are affirming life. "Snowie", I have every confidence that you will find your way in your new job and new home. You are much more than a patient with SD and hand dystonia. Remember that you are not alone in your struggle. The NSDA community understands your feelings and is here to listen to you. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: suzie ®
01/17/2008, 15:08:59
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Hi Snowie,Take a deep breath. OK, now let it out. I think it's important to remember that anyone with a new job is under a lot of stress, even if they are healthy, just trying to make the adjustment to a new situation. Add S D to the mix and the stress level soars. We all know what that does to our voice. Give yourself some time and see if things don't improve. I have confidence in you and believe things will settle down. Hang in there!
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Posted by: magistramarla ®
01/17/2008, 21:18:51
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Hi Snowie,
Best of luck in your new job.
I'm a teacher who faces teen-agers everyday. Talk about a tough audience!!! I take the direct approach. I tell the kids upfront why I sometimes "talk funny", why I sometimes don't hear them very well (Meniere's Disease) and why I sometimes stagger & fall against the whiteboard (No, I didn't have an interesting drink with my lunch, I have Spinocerebellar Ataxia). After I explain my disabilities to them in such a straightforward manner, most of my students become very protective of me. If they see me in the hall without my cane, one will chew me out while another RUNS to get it for me. I've been just as straightforward with my colleagues - even the administration, and they are wonderfully understanding.
Can you be this way with your co-workers, too? I'm sure that there are some ***-**** types who might make fun, just as some teens do with me, but I'm betting that the majority of your co-workers will respond just like mine and my students did.
As others have said, we understand what you are going through. Bona Fortuna (good luck in Latin) and let us know how it goes!
Marla
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Posted by: The Godfather ®
01/17/2008, 16:11:51
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Hi Snowie,
I feel your pain. I'm way, way, over due for another Botox injection, ( scheduled for Feb 4 ) and my voice has been terrible! I had a meeting last night with a potential business partner in a loud restaurant. I was fighting so hard to get my words out smoothly, and not sound like I was having a stroke. He is aware of my condition, but I still wanted to sound some what normal which made for a very stressful dinner.
One thing I have noticed now that I tell people about my condition, is that MOST people will say " really? I didn't notice a problem with your voice", and SOME people will say "yea, I can tell something is not right, are you sick?". I'm sure there being honest with me, but I think it is very odd that people can't notice my very strained voice.
I've listened to my own voice when I recorded a voice note on my cell phone to myself, and I thought "wow, I sound awful!" how do people not notice that?
I'm guessing maybe other people don't hear the sound of our voice like we do. Maybe we are too focused on it while people listening to us take in so many other things, like eye contact, body movements, clothing, hair style, facial expression, Etc. Etc. Etc. that they don't always pick up on it.
Anyway Snowie, you're not alone in this and hang in there, maybe your co workers don't notice.
I'm trying to teach myself to talk softly on the phone which helps, but then people think they just woke me up. I'm not sure which is better, sounding sick, or always tired?
Good luck with your new job/home, I'm sure everything will be fine. You've come too far to get discouraged now. Keep staying positive!
Raymond
AD/SD
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Posted by: hoarse whisperer ®
01/19/2008, 11:39:18
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Snowie,I know this might seem a little corny to some people, but watch this inspirational video and know that you can do almost anything that a person with a "normal" voice can do, sometimes even better. http://www.youtube.com/watch?v=LnLVRQCjh8c Hang in there. We have much to be thankful for and as far as "challenges" go, sometimes it is difficult, but we have it so much better than most people in the world. Hang in there and best of luck to you! Lori
AB/SD and VCD since 2003
Dallas, Texas
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Posted by: the breathless wonder ®
01/19/2008, 18:04:54
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Snowie,My heart goes out to you. Remember it is just a blip of time in your life and you will move past it. One of the things that has helped me get through stressful and frustrating periods in my life is to remember this prayer for serenity,
"God grant me the Serenity to accept the things I cannot change, Courage to change the things I can and the Wisdom to know the difference." The way people respond to our voices and how our voices come out we have no control over. However, the way we react, (our feelings of low self esteem in being different, etc.), we can accept and control by embracing those feelings, letting them wash over us and then letting them go. Since a new job and a move brings everyone stress, find some things that can help you relax. I have found yoga and meditation helpful, but there are other things you can do for yourself. Explain to your co-workers your voice impairment as briefly or detailed as you would like and move on. You know who you are and if you're okay about it others will be too. I hope this is helpful. I know you will be fine. Just don't despair over things you can't control. All the best and concentrate on the positives with your new home and job. Remember why you decided to make this life change. Your friend, Concetta
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Posted by: snowie ®
01/21/2008, 05:43:11
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Hi folks,Thankyou so much for all your support, it is really really appreciated. This the first chance I've had to logg on since last week, and I was very touched by your messages. Am at work, so this is just a quick reply to say thank you for all understanding and support. It's helped me not to feel quite so alone, and given my self-confidence a boost, if you guys can do it in all your different lives, then I can handle this too ... Things will get better .... one day at a time ..... Take care, Snowie
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Posted by: mariaa ®
01/22/2008, 06:13:12
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I can relate to all of what you wrote........very much so.
Are u getting botox injections??
If not have u tried Delsym ??You can do this!!! Be strong and keep going. I am a teacher so I know how tough this can be......I guess we are all special people to be dealing with SD because it takes a strong person to do it.
I am doing it and you can too! GOOD LUCK!! your in my prayers
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Posted by: snowie ®
02/01/2008, 04:21:32
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Hi All,Still not on line at home, but am at work, so have popped back in, thanks Maria for your reply, and for every elses that I have just re-read. Real words of inspoiratin and support there which are much appreciated... ... Well things are getting abit better here, have been in my new job for 4 weeks now, and feel a little more confident. My voice has also improved some what, which makes me think stress may be a big factor in making it worse. I have also uppped my asthma medication and that seems to have really helped my voice. I still don't understand why this should be so, but when my chest is bad, my voice gets much worse. Also managed to bring forward my next botox inbjection to next week, so that's hopeful, but I will still have to travel to London from here (Devon) which is about a 500 mile round trip because there are no doctors in the south-west of the UK that can do the AB injection (can you believe it!) ...... but it's worth it, it means I'll be out of work for the whole day, but my new boss was fine about it, which is encouraging as I was a bit worried about that. So, all in all, things are moving forwards, alitte step at a time. I really do appreciate this bulletin board, it is such a great source of support and comfort, Thanks to you all for simply being there, Snowie
AB SD, Devon (: , UK
Modified by snowie at Fri, Feb 01, 2008, 09:22:07
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Posted by: Mary Bifaro ®
02/01/2008, 10:23:45
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Dear "Snowie",Good luck with your Botox injection next week. It's important that you have confidence in the doctor treating you. It sounds like you are making a good adjustment in your new surroundings - at work and in a new area to live. Thanks for the update. Stay strong and positive. I'm sure that you will overcome your struggles. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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