Author Topic: To tell or not to tell??  (Read 9079 times)

epodjn

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To tell or not to tell??
« on: September 22, 2010, 03:17:08 pm »
Ok, I know this is the only group of people I'll get a honest answer from so here goes. My son is deploying to Afghanistan in a few weeks so i rejoined the same online support group I was a part of during his last deployment. I recieved a warm welcome and several of the mom's who remembered me from before asked how I was and what I had been doing for the past few years since my son's last deployment. Thinking I was among friends I told them I had had surgery for a non-cancerous brain tumor and after almost two years was still having a few difficulties but for the most part was doing well and moving on with life as best I could. This is a very friendly and outgoing and compassionate group of women normally and I really enjoyed them and receive a lot of help and encouragement from them during my son's first deployment but after telling them about my surgery etc.I got not ONE comment or reply, not normal for this group at all. Well, i don't really Know these people so I kind of just let it go. I don't feel comfortable jumping in on topic anymore and just kind of lurk.
Fast forward a few months. I was arranging with a casual friend who does photography to do some family picture of us while me son is home for a few days. I have not seen her since my surgery so I thought it would be a good idea to explain my facial problems and tell her a few tricks I have learned to make pictures of me look a little better etc. ( As you with facial paralysis know, pictures aren't our favorite thing. I feel like I'm being very bave doing this)  I did all this in an emal. I got NO response. I finally emailed her to make final arrangements for time etc. and she acted like I had never mentioned it. So here's my question. Should I not explain my face and what has happened? Is it just better to leave people in the dark, guessing? I thought I was doing people a favor by being the one to bring it up so they could ask questions etc. Are people more comfortable pretending we look the way we used to and sticking their head in the sand. In the future should I just leave it alone and figure people really don't care to hear about it?
Julie
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Jim Scott

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Re: To tell or not to tell??
« Reply #1 on: September 22, 2010, 04:31:29 pm »
In the future should I just leave it alone and figure people really don't care to hear about it?

Julie ~

Your facial paralysis is a reality and pretending it doesn't exist because other people may be 'disturbed' by it is not a viable option.  Of course it shouldn't be the center point of your life but when something such as photographs come up you certainly should be sure the photographer knows your wishes as how you want to be photographed and too bad if that makes her uncomfortable for a moment.   She'll just have to deal with her uneasiness.   What are you supposed to do?  Allow her to take unflattering and possibly embarrassing photos of you that will be useless so she can be more comfortable?  That is ridiculous, in my opinion.  It's not as if you're making a big deal about this.  Just giving some suggestions as to how she can take a more flattering photo, considering your facial deficit.  I don't believe that is asking too much. 

As for the military support group, they don't know you personally and (I'm guessing here) probably don't know how to respond without risking hurting your feelings.  The fact that people are so intimidated by someone with partial facial paralysis seems absurd.  However, with internet correspondence, perhaps leaving it out of the conversation may be best and, frankly, it probably won't matter all that much.  People are naturally self-centered and many simply do not want to hear (read) about what they consider another person's problems because, in their minds, they have what they consider bigger problems of their own.  With that reality being the norm, it may be better to simply, as you put it, leave it alone.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sues1953

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Re: To tell or not to tell??
« Reply #2 on: September 22, 2010, 05:31:53 pm »
Hi Julie,  I have not been doing a lot of posting since my surgery this past May but your post really hit my heart.  First of all I am sorry that you have had to deal with a brain tumor and surgery and I am in awe of Mothers who send their sons (and daughters) off to war, I can't imagine.  I so agree with Jim, generally speaking people are more concerned with their immediate problems and don't always know how to respond to something like a brain tumor.  Pictures are important and you should be able to speak up and have the picture taken to your liking.  I can't imagine anyone having a problem with that.  As far as the military support group goes it may be good just to skip the brain tumor.

Good Luck!

Sue
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

epodjn

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Re: To tell or not to tell??
« Reply #3 on: September 22, 2010, 06:07:05 pm »
Thanks Sue and Jim,
Of course you are right. Most people are so concerned with their own lives and problems that they don't want to hear about others problems, especially when they make them uncomfortable. I am blessed to be surrounded by very supportive and loving family, friends and neighbors. I'm just at a loss as to how to deal with people I'm not close to or people I am meeting for the first time. I can't tell by the way they look at me that they notice and wonder. I want to make them comfortable but obviously I haven't found a very good way to do that. Like you have both said, it's probably better to just leave it alone. Other than the people in this group I've never really met anyone who understand this so It's best to save my frustrations and concerns for this group. That's what we are all here for, right!! Love this group.
Thanks again
Julie
PS Sue, I would take another tumor if it would keep my son home. As they say, War is Hell, and not just for soldiers.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

CHD63

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Re: To tell or not to tell??
« Reply #4 on: September 22, 2010, 06:15:34 pm »
Julie .....

You have a lot on your plate right now.  I cannot imagine the turmoil you must feel seeing your son off for Afghanistan.

I think all of us having had an AN are acutely aware of how this has changed our emotional outlook.  Suddenly we are looking at things through very different eyes than before.  You have changed from what you were before the AN.  Sometimes we refer to it as "the new normal."

I do not know anything about the online support group for mother's of service men and women, but I suspect they are a fairly strong group of women.  It is possible they just do not know how to handle (or what to say in) the situation of you revealing your experience with a brain tumor ..... and they have chosen to ignore the comment rather than to say the wrong thing.  As Jim and Sue said, I think I would just move on.  Someone may eventually acknowledge it and ask how you are doing ...... then you could respond without going into many details.

As for the photographer, her lack of response strikes me as odd unless she really is a very inexperienced photographer of people.  Surely she has had to deal with this before (we all have our good sides, for gracious sakes!).  If you still want her to take the pictures, I would just position myself in what I know will be the best place (the rest of your family should be in on the plan anyway).

Although I do not have facial problems, I still stagger considerably when I walk.  When I am out in public among strangers, it still makes me uneasy ...... partly because I am so afraid I will accidentally bump into one of them, but actually more uneasy that they will think I am a bit drunk.  Obviously I cannot (or at least, I choose not to) tell them I walk like this because I had a brain tumor.  Slowly I am learning to conquer this uneasiness and not worry about what others might think.  To a certain extent, this is what you need to do.  My close friends know why I walk this way and we are able to joke about it now ..... but it has taken awhile to get to this point.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

lamplight

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Re: To tell or not to tell??
« Reply #5 on: September 23, 2010, 05:14:43 am »
Hi Julie
I think the problem is that some people just don't know how to react as it is not something that we are generally taught. A friend once said that she is very thankful for her mother for giving her a lesson on how to receive bad news from someone or let someone know that you have heard of their bad news (eg a death in the family). The main rule being is that you should ALWAYS acknowledge it. And sympathise or empathise where appropriate. You don't have to go on about it, just a few words  is usually enough.

When telling people about my tumour before surgery I found the difference in responses (or lack of response) quite interesting. Because I work with about 20 other people within a large organisation, just prior to taking leave for the surgery I sent round an email to these immediate colleagues briefly explaining about the acoustic neuroma and that I would be off for a little while. Some of my closer colleagues already knew and I tried to make the email as nonthreatening or non-confrontational as possible as certainly didn't want drama or pity. Some people called my desk phone to commiserate, some dropped past my desk to chat and others did not mention it at all and we've never talked about it. From the whole experience I find that its best to at least acknowledge the issue otherwise this bizarre awkwardness exist where you're wondering why the other person hasn't responded at all. I don't at all resent the people who aren't comfortable talking about it, as prior to this before I'd gained some experience, I'm not sure I would have known how to react either.

Now, personally, I will always be prepared to acknowledge something rather than ignore and have it hanging over you and the other person involved. It's been a learning experience.

All the best for you and your son.

tgillesp

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Re: To tell or not to tell??
« Reply #6 on: September 26, 2010, 09:12:24 pm »
Julie
I think I know the group you are talking about and I too joined when my son was in Iraq twice.  I only posted a few times and mostly just reading about others helped me get through it.  I do think it was probably just something they could not quite begin to understand due to the emotional stress they were under.  I think we all relate to others best when we are experiencing the same emotions.  But I agree with others that you should not let that stop you from talking about your experience with AN.  Regardless of the level of understanding you get from all, I think you still benefit from those who are understanding enough to respond.  I remember waiting for 3 weeks before telling anyone that I had been told I had an AN (except here) because I did not want to upset anyone before the birth of my grandchild.   Then, once I did, I felt everyone would be supportive and understanding.  Only a few actually made me feel they cared.  I was actually shocked that no one at my job seemed to have anything to say.  Even those that did responded more like "Oh at least its benign".  However, a few (even some I had not expected) actually called to offer support, one retired teacher even called and offered to travel with me to doctors if I needed.  I guess I'm saying I felt that even though some friends never responded, I felt those that did made it worth talking.  I think the others just have no clue how to react and are afraid to talk about it out of fear of upsetting you.  After I told them that my second opinion did not see a mass, everyone just seemed to forget about it.  All except me.  I am still waiting to know for sure.  I still have no definite answers and have an appt on Tuesday with a neurotologist.  Either way, I will be getting another MRI in 6 mos to keep watch.  I have another friend who also has hearing loss in both ears and she is too embarrassed to tell anyone, so no one knows why she constantly asks them to repeat themselves.  I tell everyone I have hearing loss because I don't want them to wonder if I am just being ignorant or not paying attention when they speak to me.  I also tell all my students on the first day of school so they will know that they have to speak clearly and loudly to me if they want me to understand their questions.  Some of my students have been more compassionate then the adults.  So I do believe you are right to tell upfront.  I think that, even if you don't get a response, it makes you feel better knowing they know.  And even if you don't feel they are supportive, I think that in their own way they will be more understanding.  They probably just have a difficult time expressing it. 

I know how difficult it is when your son is deployed, and then you have the AN stuff.  My thoughts and prayers are with you and with him.  I hope you will tell your son how thankful and proud I am that he has chosen to protect this great country for all of us. 
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Keri

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Re: To tell or not to tell??
« Reply #7 on: September 27, 2010, 06:15:45 am »
Julie,
I agree with Clarice - I think people just don't know what to say. When I talk to people about my surgery and AN and all that (which was 1 1/2 ago) I get a lot of 'wow' responses. When I talk about my face problems, people don't know what to say. My facial weakness isnt' totally apparent, but you can tell there's something different about me when you talk to me. So sometimes people say things like, 'well I don't notice anything' because I don't think they know what to say.

I will be thinking of and praying for you son as he deploys. I have a son in security forces/USAF; he thought he would deployed this October, but now that's been delayed. I can't even imagine what going through this will be like, but I guess I'll know one of these days. At that point, I'd love to have the contact info for the military forum (or family support forum, whichever it is). There's a fair share of moms on this AN forum that have had sons deployed (or currently do). Jill Marie, Jo, etc. I haven't been as consistent on my forum interaction as I had been in the past so I'm not sure what the latest is.

But, anyway, keep sharing with us! We'll support you best we can.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

epodjn

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Re: To tell or not to tell??
« Reply #8 on: September 27, 2010, 08:56:02 pm »
Well, the pictures were taken on Saturday. The photographer is young and I am her first non-symmetrical face to work with. Even though she had not replied to my email she had thought about it and did research on her own. When we got there she said my face was not even close to being what she was expecting. I thought she was just trying to be kind but when I saw the preview pictures, wow, she was right. I looked so much better in these photo's than I did in my son's wedding pictures last year. Nerve regenerations and neuromuscular retraining are such a SLOW process I guess i didn't realize how much progress I've really made. Of course there is no big toothy smile, but I can come up with a pleasant look that is fairly symmetrical. Of course once I start talking etc. it's much more obvious but I'm very happy with how the pictures turned out. When I get the real copies I will try to download a few in hopes that it will give those in the process of waiting for some movement some hope. Now I wish I had allowed more pictures to be taken in the last 2 years so I could see the progress.
Keri, If the day comes that your son is deployed I can give you a lot of info, support group, and general info. Thanks to all of you for being so supportive. It's nice to know there are others that are dealing with this and also the military issues.
Julie
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Kaybo

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Re: To tell or not to tell??
« Reply #9 on: September 28, 2010, 09:12:33 am »
Julie~
I am SO HAPPY for you that the pictures turned out better than you thought!  I am happy for you for the progress!   ;D

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Kansas

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Re: To tell or not to tell??
« Reply #10 on: November 10, 2010, 10:28:58 am »
In the future should I just leave it alone and figure people really don't care to hear about it?

Julie ~

Your facial paralysis is a reality and pretending it doesn't exist because other people may be 'disturbed' by it is not a viable option.  Of course it shouldn't be the center point of your life but when something such as photographs come up you certainly should be sure the photographer knows your wishes as how you want to be photographed and too bad if that makes her uncomfortable for a moment.   She'll just have to deal with her uneasiness.   What are you supposed to do?  Allow her to take unflattering and possibly embarrassing photos of you that will be useless so she can be more comfortable?  That is ridiculous, in my opinion.  It's not as if you're making a big deal about this.  Just giving some suggestions as to how she can take a more flattering photo, considering your facial deficit.  I don't believe that is asking too much.  

As for the military support group, they don't know you personally and (I'm guessing here) probably don't know how to respond without risking hurting your feelings.  The fact that people are so intimidated by someone with partial facial paralysis seems absurd.  However, with internet correspondence, perhaps leaving it out of the conversation may be best and, frankly, it probably won't matter all that much.  People are naturally self-centered and many simply do not want to hear (read) about what they consider another person's problems because, in their minds, they have what they consider bigger problems of their own.  With that reality being the norm, it may be better to simply, as you put it, leave it alone.

Jim
________________________

Jim, I am trying to comment on one of your many good replies, but I don't know how to do it.  I think I must be in the wrong area.  Anyway, I want to say how valuable I think your replies are.  You are one of the people who make this  forum so excellent.  Thank you. -- Kansas
« Last Edit: November 11, 2010, 02:47:23 pm by Jim Scott »

Kansas

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Re: To tell or not to tell??
« Reply #11 on: November 10, 2010, 11:00:12 am »
What a group of wonderful advisors we have here!  Jim, Donnalyn, and all the rest of you.  My question about telling is the same as Julie's, but after reading all these replies, I think I know how more how to reply to close friends in another state.  I consider these 6 friends to be all athletic achievers, more interested in what's going on in the world than in chronic problems.  For this reason I have not explained the reason I have not written much.  I had a difficult time since I've moved to Kansas sooner than I had hoped. I'm pushing 75, so the stress of the move along with other things have fired up my old acoustic neuroma problems, as well as some new ones.

But doggone it, they were close friends!  Some have recently expressed a concern for how I'm getting along, so I'm going to tell them!  I will tell them I don' t necessarily need replies to this situation, because I know they hope I'm happy and healthy, but that I  do have a need to explain myself.  So be it.  If they continue to be my friends, well and good.  If not, there are friends on this forum, and in Kansas too!

BTW, I'm still looking for that book reference that somebody shared on this forum.  It was something about successfully living with an invisible disease.  A similar title is on the Amazon book list, but it is about fibromyalgia.  Hey, maybe that was the one, since it could very well have good advice in it.  Hm. ---Kansas

Lizard

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Re: To tell or not to tell??
« Reply #12 on: November 10, 2010, 11:41:33 am »
Kansas,
I'm sure if you're friends do not respond well its just because they don't understand and are really meerly fair weather friends.  I have lost some friends through my diagnosis, treatment and extended recovery, but I believe its for the better, they were one sided relationships, but it does make me value my "real" friends way more now than I did before. 
Here's a link to the book, really valuable information, I'd offer to send you my copy, but I read sections of it from time to time.
http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322/ref=sr_1_1?ie=UTF8&s=books&qid=1289410632&sr=1-1

Hang in there, and hang on to your real friends, on the forum and in Kansas, we're here for you.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

free2be

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Re: To tell or not to tell??
« Reply #13 on: November 10, 2010, 08:09:29 pm »
Julie,

I think you've stuck a common nerve here (no pun intended, again). My experience has been that when you go through something like this, you find out who your real friends are, who wants to know and who doesn't, who you can talk to honestly, and how people handle things. Everyone is different. It is sad and unfortunate that people we consider friends cannot be supportive, but honestly I had this problem with my family when I started this journey. Still do, really, except my brother whom I had a talking to. I have a couple of theories about their lack of response, inquiry, etc. One, they just don't know how --literally. They don't know what to say or how to say it or what to do. I think it makes them uncomfortable, not from a visual perspective as you were specifically talking about, but emotionally. I think for others it is just how they handle a lot of emotional issues...or, perhaps more accurately how they don't handle them. For others I think it may hit a nerve (yikes, again! sorry) that brings up something uncomfortable and avoidance is the easiest thing for them. That, I think was my family, in part. People are complicated specimens and heavy "stuff" really shows through to what we are really made of. As Donnalyn, so brilliantly points out, we all need multiple people to meet all our needs, because this heavy stuff just isn't for everyone. Thankfully we all have each other here to meet some of our AN needs in a way most people can't.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Keri

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Re: To tell or not to tell??
« Reply #14 on: December 13, 2010, 09:54:33 pm »
Julie,
How's your son? Do you get to hear from him? My son is scheduled to deploy to afghanistan in march. I have a million questions... what branch? what does he do? how long is his tour? If you want to share, send me an email or something, or write on here.
My son is USAF - security forces. His whole unit volunteered. He'll do training for 2 months in nevada or texas and then go straight to afghanistan from there. Since he can't come home Christmas, we're trying to figure out when to go see him. After Christmas? During training? Of course, he has no idea what his schedule is exactly, so it's hard to make air reservations and plans and all that.
I hope and pray all is well with your son. I'm in a few support groups - one welcomes home all the returning flights from deployment that come through baltimore, one group bakes cookies and ships them over... etc. Although I'm not as involved in those groups as I'd like to be, i do participate from time to time. I love to do 'support our troop' things. They need people to remember, appreciate and support them!

Take care,
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

 


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