ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on April 17, 2009, 07:10:39 pm
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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!
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So, methinks you ought to be posting it here, Angie.
Sara
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Yeah, ditto. Let us see! :)
Steve
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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
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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.) :-\
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Guilt is so unproductive. Let it go, take lots of pics and post some here. Your last one was beautiful.
Marci
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Guilt is so unproductive. Let it go, take lots of pics and post some here. Your last one was beautiful.
Marci
Amen!
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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
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OK Angie, we'll give you 2 weeks and 2 days - no more!! ;)
K
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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 ;)
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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
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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
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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
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very well said, tim!! ;D
K
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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
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Tim,
I couldn't agree with you more! ;D Hope we get to meet you in Chicago!
Lori
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Jean, good luck with your class pic tomorrow...not about you, you'll be fine. Look out for that kid in the second row, third over from the left...he has a mischevious look in his eye, he might be related to me. If so, you might be in trouble.
Lori, thank you. I look forward to meeting you in Chicago.
Jan, we shouldn't only put it on the AN calender...we should create an AN calender. Groups of us, keyed to either our birth month or our removal month, doing a seasonal type of activity.. the grouping wouldn't matter to me..they are both the same in my case. Any entrepenurial photographers out there want to run with this...go.
..take care.. tim b
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Jean~
I always dreaded picture day - especially before I had anything done to try to "help" my face and had ZERO movement at all!! Just have a little grin that it's not that bad!! & at Tim's relative!! ;D
K
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Ah, Tim. Another troublemaker on the forum, huh? ;) :D
Sounds like you'll fit in very nicely at the symposium with the JKL (Jan/Kay/Lori) comedy trio ;D
Looking forward to meeting you in August. Oh yea, drinks are on Steve!
Jean -
I am 100% confident you will look absolutely lovely in the class pictures. You are much more than a smile - and I'm sure your students know that and appreciate it.
Jan
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Jan,
My point of view is that I don't actually "make" trouble...just kind of attract it, fine tune it, and apply it in new and exciting ways. I always seem to be about 1.5 standard deviations off the middle, just enough to attract notice, but not usually enough so that some one in charge decides I need to be "dealt with"... it's a pretty fun place to hang out.
I'm certainly looking forward to meeting in person all the folks I'm running into on these pages. Chicago might never be the same again.
..take care.. tim b
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Oh yeah, Tim...you'll fit right in! People might not think you're anything less than completely normal around here! :D
Lori
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My point of view is that I don't actually "make" trouble...just kind of attract it, fine tune it, and apply it in new and exciting ways.
Damn, I wish I would have said that ;D
Note to Lori - let's remember this quote when Phyl raps our knuckles again.
Okay back on topic. Sorry, for the multiple hijacks, Phyl :-*
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I hereby transfer all copyrights for the above mentioned phrase in toto and perpetuity to Jan. Go forth and use it with great glee....
..take care.. tim b
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Jan~
I think you should put that quote under your picture!! ;D
K
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Stellar idea, Kaybo ;D
It is about time to change my profile message.
I might just do that!
Jan
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Ok Tim, what gets transferred to me? I'm much nicer than Jan, you know.... ;)
Have a private jet you're not using? A beach front house in Jamaica? I'm not picky.
Lori
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Lori,
I've still got a bunch of downed branches over behind the barn left from the January ice storm...you're more than welcome to them. Then there's the bird that keeps roosting on my truck mirror and leaving white streaks on it...I'd throw it in too.
Unfortunately, I seem to be all out of witty bon mots... I'll try to run my two remaining brain cells together tomorrow with enough force the spark up something for you...
You could go read my blog (the link is under my picture), rummage around and pick something out there...bargain basement prices and even a bigger discount just for you... use the secret code 'wonky world' during your escape.
..take care.. tim b
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on't let them fool you, Tim, I am BY FAR the nicest & sweetest sister!! ::)
K
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You know, Kay, you probably are :-*
I don't think I've been accused of being nice and sweet too many times in my life ;)
Great response, Tim. Interesting blog.
Lori, I'm sure can do something with those branches and that bird. You're a very creative person.
Jan
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Hmmm.... branches....nope, I think I have enough of those. I do like birds but I prefer them to find their own home than to make one on my car. I'll have to find the pictures I have from when I lived in VA - I left the garage door open one day - went in the next day and a mourning dove had built a nest on James' bike, which was hanging up - and laid eggs in there. I couldn't close the garage door for weeks until they hatched and moved out. Our house was on the market at the time and I had to make sure all the Realtors knew not to shut the garage door after they showed the house. They all thought I was crazy, but I couldn't very well kick the little mama bird out! :)
Off to check out the blog... but if you happen to remember that you do have an extra beach house, let me know.
Lori
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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
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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
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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
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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
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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
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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
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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.
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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!