Author Topic: Say "Cheeeeeeeeeesse!"  (Read 11806 times)

saralynn143

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Re: Say "Cheeeeeeeeeesse!"
« Reply #30 on: May 10, 2009, 08:22:09 pm »
Hi Angie, just a little tickler to remind you about posting the picture of you and your adorable boys.

Seems fitting today . . . Happy Mother's Day!

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

epodjn

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Re: Say "Cheeeeeeeeeesse!"
« Reply #31 on: May 16, 2009, 07:29:48 am »
I just joined the group 5 minutes ago and started reading some posts. This one caught my eye because I have 5 months post-op and totally paralysed on my left side. I have two of my three kids getting married in the next ten weeks and have been kind of stressing about the pictures. I was feeling sorry for myself and wondering how to deal with this. All of your posts have given me greater insight and make me think. I was so caught up in my own world I never even though about what my family would think if I wasn't in the pictures. I don't want my future grandkids to think I did care to be at their parents weddings or didn't exist. You gave me a lot to think about. Thanks
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Migoi

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Re: Say "Cheeeeeeeeeesse!"
« Reply #32 on: May 16, 2009, 07:54:10 am »
Welcome to the forum. Kick off your shoes, find a comfortable chair, and stay a while.

The first couple of years I was married, several of Cyrilee's friends from before we were married came to visit us in Hawaii. It seemed like everytime someone from that group would visit, I would be out at sea... for a while the general feeling was that Cyrilee had simply invented me and hadn't really gotten married at all.

Definately be in the photo's. If your friends and family are trying to take a picture of you, it's because they value and appreciate you. I am a special education teacher. A lot of the students I have worked with do not have physical features that society generally considers as pretty or even cute...but I have yet to run into parents of these students that didn't buy the biggest school picture package that their budget could stand.

Your friends and family don't care about the details, they want to see you living your life...as for the rest of the world, a review of the forum rules shows I'm not allowed to use the words I want to describe those that would judge us by something so shallow as the functioning of a nerve or muscle.

..take care... tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
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leapyrtwins

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Re: Say "Cheeeeeeeeeesse!"
« Reply #33 on: May 16, 2009, 12:02:04 pm »

Your friends and family don't care about the details, they want to see you living your life...as for the rest of the world, a review of the forum rules shows I'm not allowed to use the words I want to describe those that would judge us by something so shallow as the functioning of a nerve or muscle.

epodjn -

Tim said it better than I ever could - but then again, he seems to do that a lot lately (thanks, Tim)  ;D

There are lots on this forum with facial "issues" and very positive attitudes.  You've come to a great place for support.

May I suggest you check out the posts by Kaybo, Lori67, and Nancyann to get you started?  There are lots of others, but I'd be here all day if I listed them all.

Best,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

salamander

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Re: Say "Cheeeeeeeeeesse!"
« Reply #34 on: May 16, 2009, 04:31:05 pm »
I was in my daughter's wedding pictures a couple years ago (pre-AN) and I was so stressed about how fat I looked in the mother-of-the-bride dress.  I looked past my beautiful smile without even thinking about it or appreciating it.  At the time, one of my daughters told me that I shouldn't be down on myself because we are all beautiful in different packages.  (wise young woman)  What is really interesting is that my favorite picture was of me hugging my daughter and all you can see is the back of my head!!  My favorite picture, that brings me great memories, doesn't even have my fully functioning face in it!! 

Now what I miss most is my smile and I could kick myself for being so silly about a few pounds back then.  My daughters always remind me that it is still me, even with half a smile.  In my fifties I have finally learned that it truly is what is inside that counts.  It is better to have all of my life memories than to have lost who I am.  So I admit that it is hard to be in pictures, but if and when I need to be, I'll be right there celebrating life with my family.  I will be creative with my posing to try to show the joy that half of my face can still show (Glass half full theory).  I won't deny the joy  of the moment to avoid a picture.

In the hospital, I am sure that my family left the room to cry at times, but they never showed me anything but strength, love and support.  I think I was watching them for reactions to gauge how horrified I should be myself.  With their acceptance, I got through it.  I remember thinking, "well, if it is that big of a deal to them. . ."

ANs help us with life perspectives, I think.  I believe that this forum is populated with very special, grateful, and well grounded people who would probably do it all again even with the individual challenges and outcome in order to spend life with our loved ones.

Sorry for going on and on.  I guess you caught me in a sappy mood!

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

Jeanlea

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Re: Say "Cheeeeeeeeeesse!"
« Reply #35 on: May 23, 2009, 09:26:47 pm »
Samantha,

I like your perspective on how we look.  When I was in the hospital recovering from my AN surgery I truly felt that I was one entity and my body was another.  I was in my body, but I was not just "my body."  (Might have been the steroids enhancing that feeling, too.)  We are who we are on the inside.  The body is just the packaging.  Your daughter is very wise.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

epodjn

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Re: Say "Cheeeeeeeeeesse!"
« Reply #36 on: June 03, 2009, 05:12:00 pm »
Samantha,
Wise words indeed! I still don't like the idea of pictures but I was in all the pictures I was asked to be in, and a few I wasn't, at my son's wedding. Haven't seen them yet, it was just last Thursday, but I will post a few when I get them. I am prepared to not like the way I look. As my friend says, it is what it is, and AN's just don't do much to make you photogenic. Oh well, it was a beautiful wedding and a wonderful day and that is all that is important.
I did have some interesting experiences with people who had not seen me in years and did not know about my tumor. Some were shocked, some were very emotional. I found myself comforting THEM!! AN's definitely do give you a whole new perspective on life. I didn't even know i should appreciate my blink before I lost it. Now I look for things to appreciate about life, little things that others might think are silly mean so much to me know.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Debbi

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Re: Say "Cheeeeeeeeeesse!"
« Reply #37 on: June 04, 2009, 09:01:08 am »
Yes, I agree that pictures with facial paralysis are scary.  For me, it involved an extreme feeling of vulnerability, if that makes sense.  And, because I hate feeling uncertain and vulnerable, I decided right away that I was going to bite the bullet and take pictures of my face every couple of weeks.  And, I will tell you very honestly, that is was hard to look at some of those pictures and sometimes I cried.  But what it did for me was allow me to see the small signs of progress in a clearer way.  If you visit my blog, you'll see pictures every so often of my facial progress - there are some posted here on the forum somewhere, too.  And, if you are connected with me on Facebook, I have a private album of my AN journey there, just for my AN family and my biological family!

I am not suggesting that this is the right answer for anyone else - it was just my answer.  I still have facial issues, but the improvement in the last 13 months has been tremendous and I remind myself of that every time I reach for eye drops, or get frustrated because a bit of food slips out of my mouth while I am trying to chew.  And for everyone out there dealing with facial issues, I am sending you a big hug.  You have to go through this process in your own way, pictures or no pictures. 

And, Angie, we all know that you are beautiful inside and out!
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com