well-meaning persons

[saralynn143]

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

[TP]

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....

[lori67]

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!   

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

[Debbi]

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!)

[mimoore]

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

[Jeanlea]

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

[MAlegant]

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!" 

[Jim Scott]

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   

[Jan D]

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

[epifania74]

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   
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..

[saralynn143]

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

[mimoore]

I hear yah Sara. Time heals all...

[CROOKEDSMILE]

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?

[mimoore]

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   

[LADavid]

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