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

[Jim Scott]

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        

          

[epodjn]

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.

[rosie_p]

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

[Jan D]

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

[epodjn]

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.

[Kaybo]

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   

[epodjn]

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.

[Debbi]

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

[no2hopkins]

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.

[clr]

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.

[Meagan]

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

[leapyrtwins]

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