Author Topic: Say "Cheeeeeeeeeesse!"  (Read 11260 times)

CROOKEDSMILE

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Say "Cheeeeeeeeeesse!"
« on: April 17, 2009, 07:10:39 pm »
Last evening we were outside admiring the flowers blooming in the backyard and my husband ran in and got the camera to take pictures. He KNOWS never to take my picture and for the last 21 months since surgery and facial paralysis I have not allowed hardly any pictures of me. Most of our photos now are with my hubby and the two boys with me taking the picture. My husband quickly snapped a shot as me and the boys bent down to smell the flowers and when he showed it to me on the digital camera a feeling of HORRIBLE guilt came across me. It just hit me that for almost 2 years now my boys won't have any pictures of me with them and they might wonder where I was during that time and not included. I was very emotional and felt selfish and vain for refusing to partake in photos with my children or anyone else for that matter. It shouldn't be about me...I should have been doing it for my kids. Ugh. Guilt sucks. By the way....the picture was sweet and my boys are so precious in it that I didn't even really notice my face.
 ;D
Angie
now in pictures!
« Last Edit: April 17, 2009, 07:12:50 pm by CROOKEDSMILE »

saralynn143

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Re: Say "Cheeeeeeeeeesse!"
« Reply #1 on: April 17, 2009, 07:39:54 pm »
So, methinks you ought to be posting it here, Angie.

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

sgerrard

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Re: Say "Cheeeeeeeeeesse!"
« Reply #2 on: April 17, 2009, 08:06:14 pm »
Yeah, ditto. Let us see! :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

calimama

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Re: Say "Cheeeeeeeeeesse!"
« Reply #3 on: April 18, 2009, 04:41:13 am »
Hey Angie...

I was reading another post here not too long ago about pictures and it seems we all have the same idea that photos are a no-no since they really do seem to make things look sooo much worse than i think they really are (lots of great explains were shared for this).

Ironically, i have a picture of my self (shoulders up) on my work pass that i generally wear around my neck at work (government building, so some security doors to beep through). I got the pass when i returned to work in Sept of this year. At the time i had mean double vision and was wearing an eye patch (which i removed for the picture). I am now 10.5months post op and my face is much better (but still a long way to go). I keep thinking i should go get a better photo (without the droop), and then i think... but hopefully i will a little better a month from now, so i will wait. In the meantime, i just turn the pass over so the photo is not facing out... as it's pretty bad. But sometimes i look at it and think of how far i have come.

I hate to see you beat yourself up about this... you really are doing your best and we all know it isn't easy. But it is getting easier right? We have a digital camera (doesn't everyone?) and i too generally avoid photos, although i do pictures of my face every month or so, just so i can have a sense of progress, and see whether my eye is closing - NOT. The great thing about digital is the delete button! --which i rarely do, but let's face it, i don't print out the ones that i don't like (there are some pictures of me here and there that my hubbie took before i could notice or protest. I always find myself zooming to see how i look. When we do slide shows of pics (after a day at the zoo say), there are only a few with me in... and i ususally say "poor mommy" when i see them. Then we move on to the next picture and that's that. 

Photos really don't do justice to the journey that you have been on, and what you have been through to get to that moment in time. And hopefully with each day, and one day, you will find peace with wherever you have landed. I know that having little ones really helps to keep things in perspective and your story is just another example of that. So maybe the key is more photos (then you delete the worst ones, and keep a few that are not so bad (go easy!) I am sure you and your boys will enjoy them down the road, which is the whole idea).

You can't change the decisions you made (to avoid photos) over the past 2 years or so, but you can go easy on yourself because of why you did and learn from your feelings now (maybe it's ok to have a few) to lower your regrets later.

You look great!

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

NancyMc

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Re: Say "Cheeeeeeeeeesse!"
« Reply #4 on: April 18, 2009, 05:01:18 am »
Yes, please share the photo.  It will help me with my recovery process.  I was crying this morning (only one eye teared?  Is that temporary?) while indulging myself in pity for my loss of facial function and my outward appearance to others.  It really does look a lot worse to see myself in the mirror than to feel the asymmetric sensation of a smile pulled to one side, but both cause me sadness.
My recent photo of paddling was obviously staged to share the good side.  I'll stop doing that.
(Oh, and don't feel too bad about having photos of only your husband and children.  My family photos are almost entirely of my children and ex-husband, not because of facial issues but rather because he couldn't have been bothered.  I was the one who dragged around enormous cases of video and still imaging equipment to record all of our trips for posterity.  Now he's gone.)  :-\
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

MAlegant

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Re: Say "Cheeeeeeeeeesse!"
« Reply #5 on: April 18, 2009, 07:23:07 am »
Guilt is so unproductive.  Let it go, take lots of pics and post some here.   Your last one was beautiful.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Say "Cheeeeeeeeeesse!"
« Reply #6 on: April 18, 2009, 10:33:25 am »
Guilt is so unproductive.  Let it go, take lots of pics and post some here.   Your last one was beautiful.
Marci

Amen!
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

CROOKEDSMILE

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Re: Say "Cheeeeeeeeeesse!"
« Reply #7 on: April 18, 2009, 11:57:44 am »
Okay. Now you're really putting me to the test! Get in the pics and post them! Yikes. My hubby left yesterday on a fly fishing trip to Montana for 2 weeks and he has the sd card that it was taken on. So picture was taken but not downloaded yet. You guys really help more than you know.
Angie

Kaybo

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Re: Say "Cheeeeeeeeeesse!"
« Reply #8 on: April 18, 2009, 12:27:49 pm »
OK Angie, we'll give you 2 weeks and 2 days - no more!! ;)

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Say "Cheeeeeeeeeesse!"
« Reply #9 on: April 18, 2009, 01:31:56 pm »
OK Angie, we'll give you 2 weeks and 2 days - no more!! ;)

K

We should put that on the AN calendar so we don't forget  ;)
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 #10 on: April 18, 2009, 02:56:37 pm »
When I visited a friend, I let her take a profile picture with wind blowing hair OVER my face.  You can tell it is me, but it is from the side.  And she took a picture of both of us and she also showed her profile.  They turned out kind of cute. 

For another picture, another friend held her smile and had me hold mine with a finger on each side of our mouths.  With sunglasses.  It was a silly picture, but we had fun. I couldn't believe I agreed to it.  But you can't tell which side isn't working. 

So pictures are possible from different angles to capture moments - they don't have to be traditional poses!!

I can imagine that it could be fun with the kids to find crazy angles for pictures. 

Just an idea!!

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

leapyrtwins

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Re: Say "Cheeeeeeeeeesse!"
« Reply #11 on: April 18, 2009, 05:16:54 pm »
Samantha -

very good idea about the non-traditional poses.

If you get a chance, please post some of your pics for us.  We'd love to see them.

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

Migoi

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Re: Say "Cheeeeeeeeeesse!"
« Reply #12 on: April 27, 2009, 06:46:23 am »
While it is true I haven't met thousands of folks with AN's (I hope to in August at the symposium) all the ones I have met have been absolutely gorgeous. Some of them might have had facial mobility issues but it was difficult to notice because their real beauty, the part that counts, was shining so brightly.

My vote would be to not only take those pictures but to establish a facebook or photobucket account on line to share those pictures with your friends and family. Even not knowing your friends and family I can guarantee seeing you live your life is much more important to them than the details of how you look.

My favorite theory about AN's...they only affect the smartest, most interesting folks in a population...

..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
http://www.facebook.com/migoi

Kaybo

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Re: Say "Cheeeeeeeeeesse!"
« Reply #13 on: April 27, 2009, 07:01:55 am »
very well said, tim!! ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jeanlea

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Re: Say "Cheeeeeeeeeesse!"
« Reply #14 on: April 27, 2009, 06:37:53 pm »
Today was a good day for me to see this post.  Tomorrow is class picture day at my school and I need to pose with my class.  I was feeling a little bit nervous about it, but now I can relax more.  I'll just do my best "smile" and my students will see the same person they see everyday.

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