ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: saralynn143 on September 25, 2008, 06:00:55 pm
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At least three times in the past couple of weeks I have had a conversation much like this, with different well-meaning (I think) persons:
Well-Meaning Person: Wow, Sara, you are looking good.
Me: Thank you so much for noticing.
WMP: No, really, you look SO much better.
Me: Thank you.
WMP: I mean it, Sara. When we first saw you, you looked just terrible.
Me: Well, thanks again.
So, well-meaning person did pay me a compliment, but the same person also told me right after surgery that I looked good. Not terrible, but good. So now I do not feel I can trust what s/he says.
Am I being overly sensitive? I felt pretty good after WMP's first comment, but by the third, I felt kinda lousy.
Sara
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Well if it means anything, two months after my surgery I had one of my best friends tell me (I hope I don't offend anyone) but she said I looked retarded. One side of my face is paralyzed and my eye had double vision. Personally she didn't offend me cuz I love her dearly but she made a lot of my friends upset....
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Sara,
I think people expect you to look like death warmed over after brain surgery, so I think it's a natural response to say you look "good" when they see you are alive and well! What they probably mean is "you look good for someone who just had brain surgery". And I'm sure you did. As far as I'm concerned, anyone who still has a pulse looks good after brain surgery! :D
I'm sure they just noticed how much better you look now. I guess it's all relative. And besides, you probably would have been more mad if they walked up to you immediately after surgery and said "Wow, you look terrible!".
And remember, some people are just not good at giving compliments to begin with!
Lori
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Sara-
I know exactly what you are saying - and, no, I don't think you are being overly sensitive. However, Lori makes an excellent point that people expect us to look a lot worse than we do after brain surgery so many of the "you look great" comments immediately following surgery probably had a silent "for someone who just had their head cut open" attached. I just recently had someone tell me that my speech sounds so much better now than it did initially - one of the same people who initially told me that my speech sounded fine. Well, go figure. It does, however, make you cautious about believing those folks. I trust my husband,my parents, a couple of very close friends and everyone here on the forum to be honest. Beyond that, not so much.
Debbi (and I really do think you look great!)
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Sara I have heard it all. How do you take these? ???
A neighbour said "Oh it is so sad your face is paralysed, I mean you could live with an arm or leg that doesn't work but not a face that doesn't work" I' m thinking, thanks like I have a choice you dummy. Open mouth and insert foot lady!
Oh and this from a childhood friend.... "You are and have always been beautiful so your face is paralysed you can't have it all" I looked at her and thought what? ??? ??? ???
Michelle :o
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Sara,
I've had a similar conversation with a person that I work with. I had a little different take on it. I thought she was being supportive of how I looked. And when I continued to improve she would notice and say how much better my face looked. It's kind of like when you have your first baby. You think, oh this is the cutest age. Then they get older and cuter. Oh, this is the cutest age. And on it goes.
For me, even though this woman would say I looked okay and I knew I didn't, it made me feel better anyway. I knew I could have a minor change and she would be there to say something encouraging to me.
Jean
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I say take every compliment you get, even the disingenuous ones! I've had people say various things to me, but really, they are just so surprised that after brain surgery you can be walking around and looking (relatively) normal, like Lori said, that they don't know what else to say. I'm finally getting my husband to be honest with me about what he sees going on in my face. This is crucial; having someone you trust be honest with you. I keep saying I'm a walking middle-school joke. "Does your face hurt; it's killing me!" ;D
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Sara:
Although I didn't suffer from facial paralysis and it's concomitant issues, in the weeks and months immediately following my surgery (and later radiation treatments) I was told, repeatedly, about how 'good' I looked. I smiled and said: "thanks" - a lot.
I agree with Lori and Debbi that when folks know you've undergone brain surgery, they do expect you to look like 'death warmed over' and when you don't, they say, reflexively, that you look 'good'. I concur that in this situation, 'good' is a relative term. I also lost a lot of weight prior to my surgery so I suppose, in a sense, I did look better. In any case, I don't allow people's comments , especially the insensitive kind, to affect me, much. As you realize when you get to my age: 'life is too short'.
Prior to my diagnosis, my wife and I knew a youngish lady (in our church) who had AN surgery before we began attending and had suffered severe facial paralysis and the facial distortion that often accompanies it. I never, ever mentioned her appearance to her or anyone else. I thought she was brave to soldier on with this condition and didn't need me to tell her what she already knew about her appearance. I apply this to the obese or anyone who's appearance is not what we consider 'normal'. My contention is that they have a mirror and know full well what they look like. I've always made it a rule never to comment on another person's appearance, no matter what the situation. This rule has served me well and probably saved me some embarrassment and other folks some hurt over the years. If a person looks well after an illness, I just say I'm happy to see them. If they don't look so good, I say the same thing, and mean it. I wish more folks would resist the urge to tell someone who isn't looking too well, how 'good' they look. It's gratutious and mostly unnecessary because we usually know it's false. Sometimes, the less said, the better.
Jim
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Jim - you are so well-spoken. I couldn't agree with you more that comments on someone else's appearance should be left unsaid, no matter what their condition. When I was younger, the "well meaning" comments used to bother me; now not so much. The stares bother me more - I just look the other way or change the subject to disarm the one that is doing the staring.
I truly think the AN experience has made me a stronger, more resilient person.
Thank goodness for this forum of wonderful folks that can truly relate...
Jan D
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True we know what we look like, we all have a mirror. When i first went out in public I thought everyone was looking at me..as if they had nothing better to do..
Brain surgery is major, the reactions I got was that people didnt mention it or they looked like they were hanging tentatively to everything I was saying. Or more like trying to decipher what I was saying :D :D
I can laugh about it now, but back then I felt like I was a special person. My brain was still working but the words seemed to take a lifetime to get out of my mouth. Those closer to me treated me the same, I never wanted to be away from my husband because he was like my interpreter. If I wanted something he knew, I'm lucky I guess.
All I can add is that some people dont know what to say, and say the wrong thing. You become immune after awhile..I've had my fair share of well meaning compliments. After awhile you filter out the good ones and chuck out the bad ones..
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Today when I went to the Y to work out, I said hello to the desk attendant, an older gentleman. He said hello back, and then asked if he could ask a question.
I said sure, and he said he wanted to ask about my Bell's Palsy. I told him it was similar to Bell's Palsy, but was caused by my facial nerve being stretched during surgery so it would take longer to resolve. He said he wanted to tell me that although it was evident, it did not look bad at all.
I then spent about fifteen minutes listening to his nerve problems (I'm surprised the poor guy can even walk). But I thought he was so nice to tell me that.
I think about my face a lot less these days. Not that I want to look like this forever, but it's not as devastating as it seemed at first.
Sara
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I hear yah Sara. Time heals all...
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Ya know......I would much rather have someone ask me what is wrong than to just stare unless of course it is a child and I wouldn't mind that either. I got alot more stares when I wore the eye patch full time. Today our little neighbor girl came down to play and she didn't look at me funny this time. Made me feel good. Sara, I love how the guy just straight out asked you about what was going on. You never know what other people are dealing with in their day to day lives and sometimes we can gain strength and courage from them. So hats off to that gentleman!
Angie
By the way Sara, How are you?
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1. A little girl in another kindergarten class came up to me today and said " I'm not scared of you anymore". I thought wow I scare children?. Just about tore my heart out.
2. I have a new student from Korea and she does not speak english. I hate the fact that I cannot give her the reassuring smile she so desperately needs. Yes, I try hard with my voice and actions.
3. My husband and I went to a wedding last Saturday and the little flower girl was dancing around at the reception and I smiled at her. Oooops I had forgotten I only half smile, well she looked at me like I had six heads. Honestly I thought I would cry.
It is times like this I want to scream "Please God make me better". I am trying so hard to be strong but things like this make me want to hibernate like a bear for the winter. Wake me up when my facial nerve has recovered.
Michelle :'(
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Aww, Michelle. That is so sad. I think awhile back you said you felt some twitches. Are there any more?
This to all of you on this thread who have facial problems. I understand and I feel for you. I lost a career over it. But I'm an old guy. I can't even imagine what it would have been like to be faced with this in my 30's and 40's. You have my prayers. If you ever want to PM me and vent or look for support please do. I'd talk on the phone but my hearing isn't much good either.
You all rock.
David
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Michelle~
All I can say is that I can EMPATHIZE 100%...but that doesn't make it any easier. :'( Know that we understand and are here for you - good times and bad! When you are flat on your back - the only way to look is UP!!
Hoping & praying that tomorrow is better,
K
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Thanks David and Kay,
It does mean a lot that you understand. My husband says "I hardly even notice anymore" he loves me and that is all great but it is hard when my face doesn't show who I really am. Thanks for 'getting it'. Yes I am getting movement slightly around my mouth. I had an EMG and apparently the movement around my mouth is from the other side trying to compensate and the nerves from the good side have grown over to the AN side. I really didn't even know that could happen. The EMG also showed that there is slightly regeneration around the eye. Don't get me wrong I am very happy but cautiously optimistic...no one will predict how much recovery will occur.
We are having friends over tonight for dinner who haven't seen me yet ...digging deep to find the brave face.
Thanks again and again and again for always being there for me, this has not been an easy journey.
Michelle :)
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Michelle,
Your friends won't feel any differently about you now than they did before surgery. I'm sure they will be thrilled to see that you came through this okay and that's all that should matter.
I have to admit, I have to remind myself of that constantly, but I think this facial CRAP bothers me more than it bothers anyone else. I have been fortunate in that I haven't had any friends stray since my surgery - they all stick by me no matter what my face looks like - and since they don't seem to be too embarrassed to be seen in public with me, I try to remind myself I shouldn't be embarrassed. I guess it's probably easier for me since I'm not working right now. I'm sure I'd have a lot more bad days if I had to be around people I don't know all day. I guess I'll cross that bridge when I come to it.
I wonder too sometimes if my 2 year old knows when I'm smiling at her and trying to praise her for something well done - she seems to know even without a whole smile on my face. I'm sure the little girl from Korea can tell the same thing from you.
Enjoy your dinner, enjoy your friends, and remember that grown ups are usually scary to 5 year olds - even if their face works! I wouldn't take it too personally. Just think of the lesson she learned from you - just because someone might look different, there's no reason to be afraid.
If you figure out how to pull off that hibernation thing, let me know. I could use a good long nap!
Lori
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Thanks Lori,
Hey how are you feeling? I realize it may be sometime before you get movement but are you recovering well from your surgery? I have been thinking of you. Hope your having a good day. Today is better for me - thanks for giving me the wake up call gang. No pity party today! I need to tidy my house, go find a halloween costume for my daughter, go grocery shopping, get ready for my dinner.... life goes on. Thanks for making me feel better - remember I am here for you as well. ;D ;D ;D ;D
Michelle
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Feeling good! ;D My incision is looking better already - still ugly, but not as bad as it was. I think it will fade away pretty nicely over time.
My doctor was actually surprised to hear that I have some tears on my AN side already. I only need the daytime drops once or twice a day now. There goes the value of stocks in the eye drop company! I keep looking for signs that something else is going to start working on that side - although I know it's way too early, but you never know.
Speaking of Halloween, I told my husband if I had a scar on the other side of my neck, I could stick a few bolts on me and go as Frankenstein. He decided that maybe "Stroke-enstein" would be better - since I only had one scar and only half of my face is droopy. Oh, that man just cracks me up! ::)
Lori
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Michelle,
Yep. I know how you feel girl. I just want my old life back. BUT I wasn't given that as an option so here I sit and must decide to get out and enjoy the day. I have to self motivate myself on a daily basis. I've never talked to myself so much in all of my life. Makes me feel little crazy. Pamper yourself any way you can. Read a good book. Go for a long walk and get some fresh air. Just know that we are here for you and you are not in this thing all alone. I know how bad your eye hurts, I know how bad you want to smile, I know all of that. I feel your pain. Know that you are loved by so many people and YOU ARE STRONGER than this facial thing that has tried its hardest to take us down.
One day at a time sweet Jesus (my grandmother's words)
Angie
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Michelle~
Two things:
1) It doesn't matter what your face looks like, kids can "see" you love & warmth thru the TONE of your voice and the use of your other body language
AND
2) Think how much better off the kids are going to be that have come in contact with you - they may not realize it now, but you are leaving a HUGE imprint in their little minds and one day it'll hit them (they may not even realize why) that even people that may look or act a little different are still wonderful people on the inside!!
K ;D
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You guys are the best - thanks for lifting my spirits. I know you are right, just need to remind myself of that on down days. Oh and Angie I hear ya (with one ear of course) I need to self talk everyday. I feel like the little train who could... I think I can, I think I can.... think of how much stronger we have become.
Michelle ;D
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(sigh)
My mother-in-law and grandmother came to visit yesterday and they haven't seen me in over 4 months. Neither one said that I looked better. I really thought that I was making progress by looking at pics but maybe not. It certainly helps to have someone honestly give you feedback...good or bad. They just basically ignored it and asked how I was feeling. Oh. She did say....you can't tell anything is wrong unless you smile and some people smile crooked anyway. So out of fairness to her she did say something. I wonder why those around us don't see the improvements when we know there has been progress. I usually am not too bothered by this but I actually retreated secretly to my room and sobbed like a baby. I know Angie---toughen up. My MIL is having plastic surgery (cosmetic) on her eyelids next week to make her look younger and I guess she's consumed by that. Who knows.
Angie
Maybe we should post pics of ourselves on a monthly basis and then we can see the differences for ourselves! Anyone want to start a thread like that? (i hate cameras)
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This rule has served me well and probably saved me some embarrassment and other folks some hurt over the years. If a person looks well after an illness, I just say I'm happy to see them. If they don't look so good, I say the same thing, and mean it. I wish more folks would resist the urge to tell someone who isn't looking too well, how 'good' they look. It's gratutious and mostly unnecessary because we usually know it's false. Sometimes, the less said, the better.
Jim
Well said...
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Angie~
I think you hit the nail on the head when you said that she was just more concerned about HER than you!! From what you've said, I don't get the warm/fuzzy vibe about her anyway!! I know it hurts - I promise, I do, but YOU know you are doing better AND the most important thing, no matter what you look like, you have been there more for your family!!
K
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welp.....in the midst of having a dinner party with friends that have not seen me in 15 months and they had a lot to say. Nice things, Thank you Jesus. But then again the last time they saw me I looked worse than the Bride of Frankenstein with feeding tube and 6/6 grade facial paralysis. Nonetheless......Nice to be surrounded around good friends and laughter and few compliments to boot.
Thanks guys for the kind words. Kay thanks for the phone call. It's always a pleasure.
Angie
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You're a sweetie Cheri. Glad you're doing well!
Angie
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I love all of your comments.
Michelle, your picture is beautiful. I am sooooo critical of my "new" smile which I've been carrying around with me for almost 5 years now.
(Hard to believe!!) I used to have a huge smile and I am so expressive. This week, my 5 1/2 year old who NEVEr comments on my face started
pulling on my smile and saying "smile" He proceeded to give me smiling lessons. Since he was only 8 month old when I had the surgery, this is the only face he knows. He knows that the hearing is goine on my right side because I had "a bump removed from my head" but that's all we've talked about.
I am sure he hears everything I say to my husband regarding my face so he probably already knows that it is different.
I can expose all of my top teeth on each side which I couldn't do after surgery or for several months. I can't pull down the right corner of my mouth.
I always wonder what people think of my face when they meet me or what old friends think when they see me. I am probably placing too much emphasis on that part.
But, it 's hard not to.
Anyway, thanks for your support.
Much appreciated.
:)
Mary
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Thanks Mary - although that is the pre-surgery me... I long for that smile and my blink back... soon enough.
Michelle