ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Adrienne on October 18, 2009, 08:09:21 pm
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My sister in law was at an event a few weeks ago and the lady sitting across from her (her hubby's work event, with some they knew and some they didn't) had some facial paralysis on one side. Prior to knowing anything about ANs, she said she would have assumed that the lady either had a stroke, or palsy. Since my diagnosis/surgery though, she realizes that there are other ways this can happen. It's still very 'fresh' for her, as my diagnosis and surgery was only a few months ago. She said she wanted to ask the lady what happened, in the off chance that she too had an AN removed at one point in her life. She felt that since she didn't know her, she shouldn't ask such a personal question.
So my question to you is:
If a stranger is with you in a situation like that, do you mind if they ask what happened? or do you feel that it is too personal of a question?
If you don't mind them asking, how do you prefer them to ask? Ie: I'm sure there is a way that really ticks you off, and possibly a more 'acceptable' way. If so, do you mind sharing?
It was an interesting scenario when we discussed it later. On one hand, if it was an AN-she would have talked her ear off about it and our experience. In that way, the lady would have known why she was asking. If it *wasn't* though, she may just walk away from there wondering why my SIL was so nosy!
Thanks in advance,
Adrienne
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If someone who also has facial weakness asks me this- I am ok with it.
If a "normal symmetrical" face person approaches me about it... I feel a bit awkward.
Then explain that my surgeon nicked the facial nerve when taking out a tumor- off the acoustic nerve.
DHM
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Adrienne~
I have always been VERY open and forthright about what happened to me and my face. I used to tell my students that it is always better to ask than stare (& I would tell their parents that I had told them this too at Open House). Most people really welcome polite inquisitions - if someone had a cast on their leg, wouldn't you ask them what had happened without giving it another thought? It would almost be rude NOT to acknowledge that... I would tell my students that if the person didn't want to talk about it, then they would let you know. I certainly don't think there is anything wrong with your SIL saying something like "I noticed that you have some weakness in your face...I'm just asking because my SIL just had a brain tumor (AN, etc) and now has some paralysis...I am more aware of this now..." Something like that...Of course, I had an older ENT, that I knew who he was from my parents & from a large church but he didn't know me, sitting beside me on a plane back to my hometown no too long after my surgery & he said, "SO...what happened to you?" Since I knew he was an ENT, I replied that I had an AN! Talk about blunt!! :o
Just my opinion...
K ;D
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I had a patient ask me about my facial paralysis by asking how long I had had a problem. Otherwise never had many patients ask but I would mention I had had a benign tumor occ. I worked where we would have patients we knew in and out over time, our frequent flyers as most were elderly. I would say something as people knew me from when they were in before. I asked once to a daughter of a lady we would have occ as she had bells palsy and she was glad to know someone who understood. An older guy from our area had bells palsy happen when they were on a trip to Florida and had a real hard time. Bad eye problems with it but he is fine now. Cheryl R
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I actually prefer if people ask me what happened. It's much more polite than being stared at.
I've found that the people that have asked me were genuinely interested and all of them have known someone else who had some facial paralysis. I had one girl who was bagging my groceries one day as me if I'd had a stroke. She said she felt funny asking, but her mom had just recently had a stroke and had facial weakness and she said it made her feel better to know that someday her mom could be out going about her life like I was. I've told my Santa story before - one day on my way out of a store, I stopped to put some money in the Salvation Army donation bucket and turned to tell the bell-ringing Santa that he really looked like the REAL Santa. He came over and asked if I'd had a stroke. I told him it was actually a brain tumor. He put his hand on my head and said "Bless your little head". I joked around that I thought I'd just been insulted by Santa, but honestly, I'd rather be asked.
It's also a great opportunity to teach people about AN's and about compassion.
I'd say she should have asked. The worst she could have said was "None of your business". :D
Lori
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I would prefer not to be asked.
Sometimes my patients will ask, and I answer the question briefly. But generally, I prefer to keep my life and problems private. Also, I guess there is a large part of me that wants it all to go away, so someone bringing it up just makes me self conscious.
If someone had a personal experience to relate or share then I would feel better about it. So if it was phrased like the suggestions above I would be more okay with an inquiry.
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My two cents on the topic would be, "it depends". If it's a small get together, or a fairly one on one setting, I feel very comfortable talking about my surgery/facial issues. It really does create a connection with alot of different people, because their is alot of pain and problems in the world. So many people have told me things going on in their life when I share my issues. On the other hand, if someone just randomly asks about it, it's awkward to me. It's very personal to me, and I don't feel comfortable talking to random people, or in groups about it. But that's just me. I think you really have to 'feel' a person out, so to speak. There, how's that for a muddled, confusing non-answer? ;D
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I'd say a question like that should typically be prefaced with a comment that explains your interest.
"Excuse me if I seem blunt but I have a friend that has some facial paralysis after surgery and I noticed that you seem to have some as well and was curious as to the cause. Please forgive me if I'm being to forward"
Of course in todays society with its lack of civility we are more likely to hear (on one side anyway) "What the HECK happened to your face"
Myself...I don't mind being asked, civil or not. My face has retuned to close to normal as far as looks go. I'm more likely to be asked why I'm crying as I eat.
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I have never been asked, but I would LOVE it if someone did ask! My face is fairly symmetrical at rest. I have gone from grade IV - V from the operating table 8 months ago to now having some movement around my mouth and eye. I do have some synkenises developing which I'm pretty self conscious about.
Sometimes people sort of look at me funny and I just do my best to give them a "non-scarry" smile back. I wish more people would ask, but I think that is more my vanity, I'm embarrassed to say. It's like I really want to tell people "I didn't always look like this, I used to be pretty!!" This sounds really awful, I know.... and I must seem very shallow. It's only once in awhile I feel this way, most of the time I just feel lucky that my only real lasting effect from the AN was hearing loss and facial paralysis.
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Lyssa ~
While I'm not a fan of vain people (male or female) I can assure you that a courageous young woman like you, who, due to AN surgery complications, has had to struggle with facial paralysis and wants others to know that she 'used to be pretty' is not being 'vain' or 'shallow' - you're just exhibiting a very normal, human desire to regain your natural appearance and until that happens, wanting others to know this is not your 'normal' face, which is completely true, so there is really no need to apologize. I hope and will pray that you can soon achieve your goal of regaining full facial function. Meanwhile, you're among friends here who understand your struggles, both physical and emotional. Rest assured that you'll always look just fine to us. :)
Jim
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Lyssa,
I'll bet you're still pretty! Inside and out! ;D
Lori
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I don't mind if people ask me what happened. I can sometimes just see the wheels turning in their head: Did she have a stroke? Does she have Bells Palsy? They just stare.....
I'd rather they just ASK. But I don't want to assume they are thinking that, because what if they aren't?
I know, confusing......
The sympathetic nods from the old folks crack me up.
And at the grocery store, the "Do you need help with your groceries?" "no I'm good" I say.
"Are you SURE you don't need help?" as I'm leaving. One of these times I'm going to say, "Why does it LOOK like I need help???"
A good way to tell the difference: If the wrinkles are evident on both sides of forehead and there's facial drooping, probably a stroke.
With AN or bells palsy you obviously won't see wrinkles on the forehead of the affected side when the person talks.
A little trivia ;)
Maureen
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Hmmm... I re-read my post from yesterday and I must've been having a bad day :(
While my face is what people see first, it doesn't define me. I have a wonderful husband, family, friends and two ridiculously loving dogs. In fact, after I posted that self-pitying post, my husband came home and told me I'm beautiful for no reason.
So, yes I want people to ask and I wouldn't be offended if someone did. But as others have said, it's just about how you say things. If a stranger asked me and explained why they were asking I'd probably talk their ear off. Sometimes I see people w/ facial paralysis or an asymmetrical face in some way, and I'm not sure what the cause is but I always assume it's an AN and want to ask LOL.
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my husband came home and told me I'm beautiful for no reason.
Actually I'll bet there are all kinds of reasons, Lyssa.
Sara
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I just had an experience that relates to this thread. I went to a baby shower last night. It was attended mostly by neighbors who had supported me through this crazy journey but one person who came was a lady who had moved many years ago. The first words out of her mouth when she saw me were, " I didn't know you had a stroke". I was very uncomfortable but told her I didn't had a stroke but had a recent beneign brain tumor surgery. She had a total look of horror on her face. Luckily a good friend came and put her arm around me and said, yup and she's doing great now and we are all so glad, and then changed the subject. So yes, it's all in how people phrase it. I really don't mind telling people if they ask. If they stare my first reaction is less than Christian but I've learned to just say something like, I had a tumor that affected my facial nerve. (I was already at a HB-5 before surgery and then totally paralysed after) Short and sweet. If they have more questions that usually makes them feel a llittle more free to ask. If not that asnwers their question and the just move on. One thing I have realized just lately is that my paralysis might actually make my life easier. If I looked "normal" people would wonder what was wrong with me and thing I had "mental issues" because of my balance, memory, deafness, etc. but as soon as they see my face they usually cut me some slack. It's pretty obvious that I have had some health problelms. Maybe wearing my problem on my face isn't such a bad thing.
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Julie/epodja ~
Your post jogged my memory and I wished to respond.
Some years before I was diagnosed with an acoustic neuroma and my only symptom was a very gradual, unilateral hearing loss, I met a lady (in her 30's) who took membership in the church where my wife and I worshiped. She had noticeable facial paralysis that I learned (much later) was the result of acoustic neuroma nerve damage. We were friendly with her and her husband but didn't socialize outside of church, partly because they lived quite some distance from us. I dealt with her appearance the way I've always done when I encounter someone who has some obvious difference from the norm in their appearance, be it in face or form....I ignored it. The thought of asking this pleasant woman why her face was pulled up on one side never entered my mind. Although I'm the curious type, my attitude has always been that anyone who has something out of the ordinary about their appearance; be it obesity, being confined to a wheelchair or even partial facial paralysis, is well aware of their situation and very likely doesn't need to be reminded of it, probably for the ten-thousandth time. I accept them the way they are, as I expect people to accept me. I treat them as I would anyone else and don't define them by their weight, mobility or facial appearance. This is the way my parents raised me a very long time ago when society was far more civil and circumspect about not making people already dealing with some sort of physical difficulty, uncomfortable. I think it used to be called 'manners'. I may be mistaken, as this quaint concept seems to have evaporated in modern society, these forums excepted, of course. ;)
As a postscript; the lady in question moved away but we ran into her and her husband about (at a marriage seminar) a year after my AN surgery & radiation. She was very interested to know all the details of my diagnosis, surgery, doctor and so on and we exchanged our respective AN stories. I instinctively downplayed my excellent recovery so to not to put too fine a point on the difference in our outcomes. As always, I gave God and my neurosurgeon, in that specific order, the due praise for my outcome. Of course, having been through AN surgery and radiation and reading thousands of posts from AN patients via this website, my empathy for anyone dealing with any level of facial paralysis has grown enormously and I hope that is reflected in my posts.
Jim
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Jim,
As always, I very much enjoy reading your posts but this one especially touched me. Wouldn't it be a wonderful world if everyone had been raised by such wonderful people as your parents. I hope I have raised my own children to be loving, accepting, and tolerant of others. In this world where nearly everyone has something hard to deal with, be it a physical, mental, financial, or inter-personal, it would be a good practice to cut everyone a little slack. Thank you for the wisdom you share with all of us. We are a better group for it.
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I get pretty angry when people bring it up....
At work people who don't know my situation might come up to me and say (as a few have) "you know I watched a show last night on the Discovery Channel about strokes, and it made me think of you. Is that what happened?" or they might feel that because they have a relative or know someone who has Bells Palsy that they know ALL about me and my face.
I even get upset with this woman who comes into my restaurant every Friday for happy hour who has B.P who feels the need to shout out "Oh that's my girl Rosie..her face is like mine"...Honey, it's not! I appreciate her wanting to connect ,but her and I are not quite in the same boat and I'm sorry, but I cannot be that person for her.
I regard my brain surgery and subsequent after effects as a very personal and deeply emotional experience. I find that the only people I see the point/benefit of talking about my story with are other AN people. Talking about my AN journey with other people, especially strangers is very hard for me and leaves me feeling WAY to vulnerable.
On that note I do admire those who find strength sharing their story and those who do not mind people asking questions. Maybe it boils down to a who you were before your surgery. I always have been a little reserved around people I don't know well and have always been a pretty private person and take offense to any kind of perceived "invasion" of my personal space and privacy. I have definitely found that I am more or less the same after my surgery.
-Rosie
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After 40 years of living with facial paralysis from the AN, I have gone through the gammet of emotions, most of which have already been stated by others. I especially appreciate Jim's response, as that was how I was raised as well - to leave your comments to yourself and treat others as you would want to be treated.
I love to work with children, but have had to stop recently because a few (not many, but enough), just stare. The stares bother me the most. I hate to think that I scare the little children, so I usually avoid situations with them.
My preference is that people do not say anything, but I don't mind if they ask with genuine interest or concern, rather than just curiosity, such as "have you just come from the dentist"? This is the one comment that I can't tolerate. I always just answer "no" and leave it at that. They get the message.
Thanks to all for sharing your thoughts on this - so many times, I feel like the "lone ranger" until I go online and read your stories.
Jan D
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Jan,
I noticed you are a newbie. How did you survive this experience since there was no internet etc. for support or information in the 60's? You must be a very strong person. Glad you found us.
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I only had surgery 13.5 years ago & there was no board (I never knew anyone with an AN or anything related)...I only found this site no quite 2 years ago! I don't know about being strong - you just do what you have to do!
K ;D
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I muddled through for the first 6 months and yes, you can go it alone and do ok, but I can't tell you the feeling I had when I found this forum and starting reading. It was like finding long lost relatives or something. I felt like I had finally found people who really understood. It is such a comfort. Some days I just sit down and read, not post, and it give me the strength to go on and do what I need to do, knowing I'm not alone in my battle.
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It's clear from the responses that this is a very personal issue/preference. As for me, I never minded at all when people ask - and in fact, I'm happy when they do. When I was about 7 or 8 months out, the cashier at the grocery store I shop at asked me if I'd had a stroke. She was fascinated when I told her about the AN, and said that her husband had been having some neurological problems. It was an interesting bonding moment - here was a woman who I'd seen for years but never established any connection with. Now, when I see her, she always shouts out - you're looking great!
I am at the point now where people don't immediately identify what is different about my face. After they've talked with me for a few minutes, they might notice the odd way my mouth moves (or doesn't), but probably don't spend much time dwelling on it. Or, maybe it's that I don't spend as much time dwelling on it myself these days. :) One of my closest friends is dying a slow and painful death of cancer right now - it tends to put a few little facial oddities and ticks into perspective for me. And it makes me grateful for every day! It also makes me grateful for all of you!
Debbi
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I've had people approach me out of the blue and say: Sorry about your stroke. I had a trainer in my gym who I had never talked to before say: How long have you had the Bells Palsey? The best was a co-worker who I have know for years approached me and said: So, you have a toothache or something? Does it bother me? Nah.
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My daughter is a pharmacy technician and gets asked all the time, from regulars to strangers, "Oh honey, you are so young, did you have a stroke?". She goes on to tell them that she has had brain surgery and then they are usually in awe. It doesn't bother her at all when they ask her.
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I work in hotel sales and I had a client with facial paralysis call me up to ask me what happened after we met....I didn't mind being asked but since I was at work really didn't want to bring it up to strangers. My hotel's number one client base is a local hospital and we have seen a great deal of people with burns and other disfigurations but I would never ask them what happened. I personally want to feel normal again and having to talk about it everywhere I go gets tiring. I am 28 so I always get the stroke and young thing and sometimes I just want to be normal.
If any friends or people outside of work ask, I am open and find it interesting to talk about but work is work.....and I am desperate to be normal again.-I know impossible but a girl can wish.
Meagan
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Meagan -
I don't remember all the details of your surgery, but have you ever looked into the 7/12 jump surgery or the T3 surgery?
Lori (lori67) had the 7/12 about a year ago and is very happy with the results. Kay (kaybo) had the T3 surgery and had great results - I think Nancyann also had T3 and had great results.
Jan