For those with partial facial paralysis, a question for you....

[Adrienne]

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

[4cm in Pacific Northwest]

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

[Kaybo]

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!! 

Just my opinion...

K   

[Cheryl R]

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   

[lori67]

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".   

Lori

[amymeri]

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.

[Darin]

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? 

[stoneaxe]

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.

[Lyssa]

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.

[Jim Scott]

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

[lori67]

Lyssa,

I'll bet you're still pretty!  Inside and out!   

Lori

[moe]

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

[Lyssa]

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.

[saralynn143]

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

[epodjn]

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.