Author Topic: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!  (Read 5057 times)

sarahinPA

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HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« on: July 31, 2012, 10:52:17 am »
I am getting married this year (novemeber 10th) and I have horrible fears about greeting my guests and being SSD.

Usually, i have no problem saying, "excuse me, I am deaf in this ear" and people always repeat themselves and we go on our merry way. But, my deaf side is the right side; where most people lean into when they hug you. I normally get nervous at parties and such when I know ill have to say "what" or "excuse me" alot, but this situation is terrifying me! Most of our family knows im deaf, but people forget, of course. Im mostly worried about my receiving line, and the hugs, as well as the bridal dance, when everyine hugs me, dances around and of course says something nice.
I feel so bad that theres a good chance I wont hear any of the guests congratulations and kind words. :(

any thoughts, or suggestions???? anyone else get nervous when they have to be in busy places with lots of people?!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

Jim Scott

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #1 on: July 31, 2012, 11:49:00 am »
Sarah ~

First, congratulations on your impending nuptials! 

I'm SSD and don't chose to use a BAHA or other aid, so I know exactly how you feel.  Busy social gatherings can be daunting.  You may not care for this suggestion but there are pins available from the ANA store (only $5,00) that indicate you are deaf on your right (or left) side. http://www.anausa.org/index.php/about-ana/patient-information-booklets?page=shop.browse&category_id=2 They are quite tasteful and might be a help to those who forget or don't know you are SSD.  I realize that you may not want to attach a pin to your wedding gown but I believe it is a way to 'work around' what could be an awkward situation.  I'm sure others will have additional suggestions.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MDemisay

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #2 on: July 31, 2012, 12:40:51 pm »
Bravo Jim,

I was going to suggest that (pin), but sure enough, you beat me to it! Quick draw Jim! Good one!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

james e

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #3 on: July 31, 2012, 12:50:52 pm »
You can always lean towards your right, forcing them towards your left if you wish to not wear a pin. A good sales person can usually guide a sale...give it a try! Practice on your friends.

James

mk

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #4 on: July 31, 2012, 12:53:06 pm »
Sarah,

congratulations on your marriage.
Although I have adjusted well to SSD, I did find it embarrassing that I couldn't tell when someone is talking to me on the deaf ear. I found that the Cros hearing aid is quite helpful in these situations. It is very discreet, and people can't tell that I am wearing it, unless I point it out. You can have a 60-90 day trial if you want to try it out. On the downside, it is not very effective in very noisy situations, but you can turn the volume down if needed.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Kathleen_Mc

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #5 on: August 02, 2012, 01:15:39 am »
For the recieving line have the people come through the line approaching you on you good ear! might mean going the opposite way to the way you think it should go but then people are approaching you on the functioning ear side and by nature maybe they'll be more likely to talk on that side!
I have found, over the years, if people want to be heard they'll make sure they are.
Also rely on your, to be, husband to help you through this, your "hearing aid" so to speak!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

kareno

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #6 on: August 02, 2012, 09:07:22 am »
Sarah,

Congratulations on your upcoming wedding.  I agree with moving the receiving line and have it follow through with your good ear.  This is your special day and it should not cause you stress.  My husband always puts his good ear forward as well and this has helped him.  Enjoy!!

Karen 
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

pjb

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #7 on: August 02, 2012, 04:14:24 pm »
I too started to write that yesterday to switch the line to the other side with your good ear and then was going to research it as to why if that is proper or some kind of good luck thing as to why it is always on the right as people are leaving but then I lost my train of thought and forgot to research...Sorry.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

lrobie

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #8 on: August 03, 2012, 07:56:57 am »
Hi Sarah,

Congratulations on your upcoming marriage.  A couple of things come to mind with your question...opt not to have a receiving line or put a little blurb in your wedding program about your SSD.  I know the second suggestion may not be a great idea, but I'm guessing that you will also have problems hearing at the reception.  Make a poem out of it thanking people for sharing your day (in case they feel like you've ignored their congrats).

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

sarahinPA

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #9 on: August 03, 2012, 11:41:17 am »
thank you everyone for your suggestions! I am going to take them all into consideration! Ive got some time to think about how to approach this, but sometimes when you talk with someone who is not SSD they say "oh it will be fine, or dont worry" but they really have no idea that we CANT hear them!

I try to make light of the situation at all times, but it can be frustrating, like today, one of my employees was yelling across the lawn over 3 noisy pool pumps. i just smiled, and walked to the other side, and said, im sorry i couldnt hear you. HAHA he knows im deaf!! I think people forget so easily because its not a visable disability.

Thank you again everyone!!!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

Jim Scott

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Re: HELP! GETTING MARRIED THIS YEAR AND HAVE SSD FEARS!
« Reply #10 on: August 03, 2012, 11:50:55 am »
I think people forget so easily because its not a visable disability.

Thank you again everyone!!!

You're welcome, Sarah.

I just wanted to mention that I think you hit upon the reason our family and friends seem to 'forget' that we're SSD; (a) just as you stated, our SSD isn't visible and, (b) because we can hear - and often quite well (up close) their perception is that we're not really 'deaf' e. g. "I was just talking to her (up close) and she heard me just fine".

Thanks for your astute observation.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.