ANA Discussion Forum
General Category => AN Issues => Topic started by: Pooter on March 11, 2010, 03:19:20 pm
-
I’ve struggled for several weeks on how to put this into words, and yet the precise words still escape me.. Here goes anyhow…
How does one deal with the expectations of others? For example, you have a friend or SO or spouse that doesn’t appear to understand that life isn’t ‘normal’ for you anymore? Like many here, I’ve adapted my ‘normal’ to shy away from situations that I find myself uncomfortable even if it’s something that I used to enjoy… However, there seems to be an expectation that everything that I ‘liked’ before, I will continue to ‘like’ now.. How do you communicate that to friends, SO, or spouses especially when they have an expectation that everything should be back to normal by now (normal being how things were 2 years ago and before)?
Aside from my scar that’s typically hidden away by the hat that I wear, there are no physical signs that anything is or was ever wrong.. You wouldn’t be able to tell by looking at me that I had major brain surgery, my balance isn’t 100%, and I’m half deaf.. I get comments from people who know what I went through about how I must be ignoring them because I didn’t hear what they said.. I try to explain that you may be on my ‘good’ side, but that there are other factors that play into my ability to hear you… talking to me but facing away from me, external/background noise, etc all play a role not just my willingness or not to hear what you’re telling me or that you’re even talking to me to begin with..
How do you effectively communicate that you HAVE changed, although not materially so, from the person that you used to be? I’ve gotten comments that I’m just not the same person I was before this… that I don’t like the same things that I used to…
Surely, I am not the only one that encounters people like that in their life… So, how do you deal with those situations? How can you effectively ‘fight’ for yourself in a situation like that? I mean, you HAVE changed… the game changed on us.. Gone are the days that I can be the center of attention among the masses at a large gathering in a loud bar listening to live music.. While I still enjoy being there, it’s just not the same because I can’t also enjoy the company that I’m with…the conversation that is going on.. I feel almost isolated from the group because I can’t join in on most of the conversation that’s going on.. And then, I get chastised for not looking like I’m enjoying it anymore…or that I didn’t join in on the conversation.. HELLO! I couldn’t hear it!
As I said, I’ve been struggling with how to put this all into words… but, I’m just at a point that I’m lost and need help…This may not be the right place in the forum to ask.. Mod's move this if it needs to go somewhere else.
Thanks,
Brian
-
Brian
I have to say up front that I do not have the answers because I struggle with the same issues. I am constantly told that I am not the "same as I used to be" but the reality is that I do not know anyone who would be the same after being diagnosed with a brain tumor-even though benign-and going thru treatment. I have tried to educate my friends and family but to no avail. Too make things worse I think that half of then think I've gone off the deep end but they fail to understand that I am still learning to adjust to all that is still new to me. I have found it interesting that people who knew me prior to surgery have a harder time accepting me than people who I have met after but still know that I had a brain tumor and brain surgery. I wish I had some sort of answer but just wanted you to know that you and I are in the same boat.
Erin
-
Brian ~
This is certainly an 'AN Issue'. Unfortunately, I don't have a pat answer to your very pertinent question regarding how you can change other people's expectations of you, post-op, when you're dealing with some serious physical deficits (hearing, balance). I suppose the rational answer is that, in the final analysis, you can't. People will see what they they want to see, believe what they want to believe and in your case (and that of many other AN post-op patients), your immediate family and friends will not see your deficits (because they're invisible) and thus, probably have expectations that are a bit unreasonable. That leads to their 'disappointment' with you when you don't 'snap back' from AN surgery and present yourself as the identical person you were pre-AN. That reaction is bound to be frustrating. Because of my age and so few post-op complications, I was spared this problem. My wife of almost 40 years has undergone many fairly serious surgeries herself (mostly for spinal issues) and has seen her ability to do some of the things she once did, diminished, although she refuses to give in to pain, and so, she thoroughly understands my 'new' deficits (hearing, balance) prompt me to forgo some things or simply not enjoy some of the things I once did.
I would submit that because we cannot control what others think about us when they don't understand that our 'new' AN-related deficits impede our enjoyment of certain activities we formally enjoyed or make some things difficult if not impossible, we have to chose to either simply absorb their 'disappointment' and realize it's based on what amounts to ignorance, try to explain the reality of unilateral hearing loss and diminished equilibrium (which they may not really appreciate, anyway, and consider it 'whining') or simply toss off any implied criticisms with "Hey, I had brain surgery!"
I realize this is a serious issue Brian and I wish I had some real wisdom to pass along but I suspect that, unless others try to be a bit more compassionate toward you and not see your changes in lifestyle as a huge negative but based on your physical reality, they will continue to shake their heads and consider you as somehow 'impaired'. Because you can't control that, you shouldn't become too concerned over it. It's frustrating that if you had a heart attack or a broken hip and recovered, your family and friends wouldn't assume you were exactly the same as before the incident and would likely make allowances for you when you couldn't do everything you once did or enjoy it in the same way. Not so with AN patients. Our tumor was invisible and so are our deficits. Deficits that impact our ability to do some things and/or enjoy them as we once could. You have my empathy and I hope you can find a way to deal with this unrealistic expectations from those close to you and, perhaps, educated them a bit, over time.
Jim
-
Hi Brian
Well, what I have done and am still doing, is even thought ppl know what I"ve been thru and for those who dont I make sure and tell them that, Hey I'm deaf, I'm not ignoring you and I apologize now if I misunderstand you and answer you inapropriately or with some off the wall comment. I also tell them to make sure they are facing me if what they want to say is important...If they dont understand,I note to myself that I'm the one who understands that they are uneducated in the AN field and hand them a pair of earplugs to wear to get a feel as to what I'm dealing with.....I try to avoid party type atmosphere....including a recent outing here in Florida with my family....(several of us here on vacation)...They all went to a bar type resturant, a yearly event when we all get here. I just wasnt going to put myself in that situation...I always carry earplugs as sometimes my good ear becomes sensitive to noise and I use the plugs...I tend to ignore the looks I get as they have not walked in my shoes..
As my partner is hard of hearing and usually has the TV to loud, in goes the earplugs...more so in the car when he turns up the radio
I feel bad for not attending family functions in noisey area but they are not the ones awaking the next morning with a headache from the noise...unless they have one from a hangover...lol
Its the same for my job....i teach driver ed and my family makes fun ofme when they are in the car with me...I never go more the 5 miles over the limits, I dont have the 'I got to be first disease, or the monkey see monkey do disease'. What they dont understand its that driving is my living. I cant take chance and lose my license or have demerits points added to it...So again, I chalk it up to them being uneducated...
Not that this will help you, but thx for letting me get it off my shoulders as well
JO
-
Brian,
I can completely relate. I guess particularly since I didn't tell many people at my school and I look so normal, I often feel that there is a disconnect from what I feel and what people see and how they treat me. I feel different just because of the fight that I just went through (and am still going through). I know I probably had a particularly easy go of it, so for those who have dealt with longer recoveries, I can't imagine how difficult that must be.
The biggest change is that I probably shy away from people and social situations more than ever. I've never been 100% a social butterfly, but I actively avoid people now because I don't want to deal with the awkward situations if I can't hear them. Also, I'm still tired much of the time and it all just seems like a lot of effort. I'm hoping time and a Baha will help.
I guess all I can tell you is what I tell myself, and that is that we are doing the best we can. We went through something most people will (thankfully!) never experience and so only we are the best judge of what we are capable of or what we are feeling. Take it easy on yourself and don't let the expectations of other people make you feel bad.
Lyn
-
Hi Brian,
I think it’s hard for those who have not been through a life changing experience of their own, to understand how life is for those of us who have. I suppose with no visible signs to remind people, it’s just too easy for them to fall into the out of sight, out of mind syndrome.
I was lucky enough to have married a man (Rich56) who has gone above and beyond. He did not let me go through this alone and he has been my voice on many occasions. He has been on this forum since before I had my surgery, trying his best to learn how to help me. He learns so much from everyone here, and there have been times when reading someone else’s story would help to explain how I was feeling. In turn, he tries to educate those around me.
I wish we could make everyone read this forum.
Scarlett
-
The way I look at is that we are different than we were before and there is nothing that will change that, I will never be the person I was preAN. I also struggle with people understanding, especially my own spouse who went through the whole process with me, its so frustrating to try and get him to understand that I really do want to go out and have fun, but I just can't! If people don't get it and they really chastise you then you might need to consider who the people really are that care about you. I've had to leave some behind and its much better because come to find out they were really only fair weather friends anyway.
I hope you can begin to take it in stride, don't let them get you down. You have enough going to worry about what other people think.
I am sorry and we all can relate!
Liz
-
I completely understand.....I've been through this AN crap twice already and people have already forgotten my struggles. I just recently had a couple of people ask what was wrong that I wasn't acting myself. When I explain my MRI is coming up and all the fears start creeping back in. I sometimes feel like a broken record and wonder if they really want to know what's wrong. It's almost as if people become desensitized to my situation. You know besides the hearing issue it's the never having "peace" of mind. It's like the disease that keeps on giving.
I miss half of all conversations in noisy places and feel discouraged! I'm deaf in my left ear have a mild hearing deficit in my good ear. It's tough to interject in conversations now.
-
Thank you everyone for sharing their insights.. I suspose the "take away" from all of them are that you have to resign yourself into thinking that not everyone, even those closest to you, are going to truly understand the situation that many of us find ourselves in.. In particular, SSD and mild to severe balance issues.. If you're lucky, then you'll have the support of them who actively seek to understand and help you deal with the changes that you are having to deal with.
I suspose over the last two years or so, I've never really been angry about my AN and subsequent hearing loss. But, darnit, I'm angry.. I miss my old life.. Even given my current situation (long story), it was going good. I could actually involve myself into conversation while out with friends as opposed to being rendered essentially deaf because of background noise.. I could hear conversations from across the house.. I didn't feel so absolutely helpless in certain situations.. I didn't get the ire of those closest around me because I missed the fact that they asked me a question, or asked me to do something, or whatever.. I wasn't deafened by the whirring of car noise when I drive and missing half of the conversation by my passenger. Forgive my frech, but I'm p'd off because I can't involve myself in half of what I used to find enjoyable any longer.. And it seems that NOBODY close to me in my life gets it. They all expect that by now surely everything has gotten back to 'normal' and that I survived the 12 hour surgery and 2 hospital stays and surely by now, 2 years later, I've 'recovered'... Well, dangit, this is my 'new normal' and it sucks..
Thanks for letting me vent.. I figured that if anyone knew what it was like it was you guys.. As Phyl said, you guys rawk.. and as Kay says, you guys are the bestest..
Thanks,
Brian
-
Brian -
this is a great topic and one most of us have struggled with. I'm almost 3 years post op and I still have feelings like this.
I wish I had some solutions to the problem, but quite honestly I don't.
All I can say is we're all in the same boat and can totally relate. Hope that helps a little :-*
Jan
-
I cant offer any hows, but i can offer empathy...I feel the same way. Sometimes even those closest to us seen to be the hardest to help understand. Its embarrasing to have someone look at you with that..."ummm HELLO" look after theyve called your name six times or asked you the same question twice and you still have this clueless look on your face! Ive started just telling people after the first time...Look im 50% deaf....so your gonna have to excuse me and speak a little louder please! It seems like the 50% seems to make a bigger impression than if you say "deaf on my left side" for some reason. Anyhow, If you figure out the answers to your questions...im in line to fine out the same things!
-
P, you know it's ok to be angry. I haven't even had surgery yet, lost any significant hearing yet, and my life is not as it was. That being said we have to create our new normal. I wish you all the best as you work your way through this. Cyber strength headed your way. I do truly believe that we will all reach our new normal some day. I have barely begun the journey, but I`ve been feeling the effects of my peers and my subordinates at work.
I work through it one day at a time. Some times one moment at a time.... As I said...I wish you strength.
-
Struggle is right, Jan. I am 8 yrs and soon to be 4 and 2 yrs post op for my surgeries and there are days that I don't feel my family has a clue. Some friends seem to understand better than them. I do look fine in the house but outside I never know how a day is going to go with my walking and knowing what is being said to me since I am deaf on the one side and not perfect on the other. This eve I went to a supper at a pizza buffet of many of us who have retired from the hospital we worked at. It went better than sometimes as I sat in the middle of the long table and by good loud talkers. LOL! But not fun to miss what some are saying to the sides of me. You just have to deal with it the best you can and life goes on.
Cheryl R
-
Aw Pooter...I so know what you are saying and feeling...trust me, I KNOW (& have for a LONG time). I wish that i could say that it gets better but really, it doesn't. HOWEVER, you will get more used to it...that SUCKS, but it is true. I just (literally a few) minutes ago found out that a dear, sweet lady from church that I help take care of has lung cancer (we took her to ER today) and so, really, we are fortunate to be here, but it does stink that our lives change and no one can see that. Dave said something the other day - I can remember EXACTLY where we were standing but can't remember what he said now - & I just looked at him & thought I was going to have to whack him! He is so wonderful and has been this whole time, but he still doesn't really get it and forgets too. I think this was about hearing something...Anyway, nothing is going to go back like we were before. Evaluate WHAT & WHO are worth fighting for and concentrate on trying to get them to understand...not sure if this is making any sense or if I am just rambling...maybe I'll try again tomorrow...
K
-
Have a pint and smile a lot!
(They're never going to be able to understand, so don't wear yourself out trying to make them compassionate.)
-
Pooter -
spending time with others that have the same "problems" is very helpful. The Forum is a great place to remember that you're not alone - even if you're only virtually socializing. Another great place - and one with "live contact" is the ANA Symposium. Not only was it a wonderful opportunity to meet those of us here, but there are many others in attendence who don't frequent the Forum. In addition to many great informational sessions, you can socialize with others who can't hear so well, but love to wine & dine anyway ;D Attending local ANA meetings might also be an idea. The groups that get together with Phyl & Debbi for lunch or dinner sound fabulous; wish those who lived around me did the same.
I guess what I'm trying to say is find ways to spend time with others who understand because we live it.
Best,
Jan
-
At almost 6 years post op I can tell you that the feelings of being different and changed are lessening. I struggled with the same issues as you for quite awhile. Read up on the grief cycle...anger is in there. For me, life has become more normal, the new normal. I've come to accept my situation better. It is still frustrating to have half a smile and know that people think I've always looked like this. I still see a freak when I look in the mirror but those around me say I look normal. (that's a scary thought). I still can't hear but the baha has helped and I do try to stay out of situations that are difficult for me. My balance is still wacky but it has improved.
As for those around me, my mother is still telling people that I'm fine. She's been saying that since the beginning when I had the frozen face and the terrible attitude. That's what she wants to believe. My husband gets me. He really understands and we've spent a lot of time talking about it. It doesn't hurt that he's a minister and sees people going through rough times often. My story has helped him in his job as well. He is more understanding and empathetic to those in need. And for the rest of those who don't understand....f*&^ 'em. It's my story, it's my life and I'm dealing with it...either you are with me or not.
The short answer to your question - time has made things easier! Stay strong and know that on these boards, we really do understand.
-
my wife tries ... tries very hard! she will say that i can't hear when i just stare at the waitress. she would do about anything for me.... and has!
but she will almost always turn off the closed captioning on the TV as soon as the show is over. it interferes with her seeing. she will still talks when i can't see her. she will ask if i heard that bird call. etc...
this upsets me.
She has been there for me in the ways that she does get. when i remind her, she gets back to the ways that work for me.
and geeze i am still angry! i had Ck to not have the hearing loss, the numbness in the face, the wobbly feelings. the doctor could care less - just said to get on with life. i knew that you would loose your hearing, etc.
i go to a singing event last night - the songs were great - soft music. but i did not count on the clapping and the screechy calls and whistles. the my wife tried to introduce me to people afterwards. i could not hear a word in the noisy hall.
i have no usable hearing in the NA ear and wear an aid in the other. i have started to think about a BAHA aid ????? i am scared to do another proceedure ....
i felt bad as i did not wish to stay and listen to my wife. guilt added to anger.
this is how i try to get back to square one .... i remember that my wife had breast cancer 5 1/2 years ago. i had / have empathy for her. i was concerned. do i still have any idea as to what she went through???? do i understand what it is like to get the annual exams / tests for follow up? do i understand anything that anyone else has gone through? do i know what anyone else here is going through? i may think that i do ---- but i just can think with my own biases interfering.
this article is making me think. i need to go home and ask her about her and then be willing to say what is on my mind. and i know to say what is on my mind will come with tears or anger (not at her). have i really said what i think - to her? i know hat ti have held back a bunch. too much?
hey Pooter - life is a bear isn't it? no answers - just my thoughts....on me
thanks for making me think!
-
Thanks again to everyone for their perspectives. I knew I wasn't the only one feeling this way.. It oddly helps to know that I'm not alone with those thoughts and feelings.
I'm not sure that some will ever truly 'get it' because they haven't lived it..they don't live it every day like we do. On one hand, I shouldn't expect them to truly understand, but on the other I can hope that they care enough about me that they will make the small changes that are needed to help me.. For instance, directing conversation to me TO me.. if that makes sense. Realizing that it's next to impossible for me to hear them talking in a crowded room with people talking. Etc..
I appreciate you guys, once again, for letting me vent my frustrations.. I think it's an important topic of conversation so that we all can learn from each other and comiserate about things. I guess I haven't fully convinced myself that my 'normal' life has changed into a 'new normal' and I'm still trying to muddle my way through that adjustment.
Party at Jan's place.. hehe
Thanks,
Brian
-
Brian,
I think Erin is exactly right - people who knew you "before" seem to have a harder time accepting things than people you just met.
I had my surgery when we had just moved away from VA, so most of the people I knew in TN had never met me prior to my surgery. They've always known that I'm (probably) not ignoring them if I don't answer and that I don't usually attend big social functions. However, when we came back to VA, all of my old friends seemed to have more problems remembering that I can't hear on "that" side, that I still can't hear them if they're not facing me, that I don't enjoy going out to dinner with large groups of people at a noisy restaurant, etc. I actually have one friend that seems to have a real problem with how much I've changed and I rarely hear from her anymore. I think she's uncomfortable with my facial issues, but only because she's incredibly sensitive and I think it bothers her to be reminded of what I went through. Or maybe it's because she's typically been a chronic complainer and her issues don't seem like such a big deal anymore? :D Who knows.
I finally had to explain to her that I just can't do the noisy restaurant/large group thing anymore and she understood that it's just not fun for me to not be able to hear anything but noise. The issues with my face are her issues, not mine, so I can't really help her with that.
Fortunately, my family has been good about it (most of the time). My older kids (22 and 18) were the type that made me order for them when we went out to eat. ??? Now, they'll actually order their own stuff and even find out what I'm ordering so if I don't hear the server, they can help me out a bit. James, on the other hand had to be reprimanded just the other day when we were in the car, he was on my deaf side and my BAHA is down for the count - and he kept talking to me, while looking out the window or whatever else he was doing (don't worry, he wasn't driving, I was). I finally had to remind him that I couldn't hear a word he was saying. Ugh.
So, sadly, no words of wisdom to offer, but at least you know you're not alone. ;D
Lori
-
I totally understand your feelings; have felt the same way many times. Didn't hear something? Well, why not, the other ear works, doesn't it. Forget something, what is your problem? Balance issues, are you drunk? It seems so insensitive and can definitely make you feel isolated. But as you see from the replies, you are most certainly not alone and we are always here to listen and support.
-
My husband and sons have been pretty good but on the whole they still do not get it either. At the moment I am fighting a nasty, nasty sinus infection that has made me extremely miserable. My balance is worse than ever and the pressure in my head is just compounding the headaches and facial pain. I am starting meds today to fight the infection.
Having all males in the house with deep voices can be very challenging. If my back is turned and one is talking to me, I know they are talking but I haven't a clue as to what they are saying. When I remind them once, twice, and maybe the third time I get a little short because I'm frustrated a war can start. Sometimes it is a no win situation.
I was an energizer bunny prior to the new me. I worked full time in a very busy credit union. I entertained on weekends, cooked amazing meals for my family and friend, kept a very spotless home. Now I can barely keep the house up and I'm lucky if I cook 3 or 4 decent meals a week. My husband I hardly entertain any more. Life has changed. Louie complains, I withdraw even more, than he feels bad. I do not know what the answer is, I guess some sort of acceptance and taking one day as it comes.
There are many, many worse things we could have been afflicted with no doubt, and I think we all get that. Just because we look good on the outside doesn't mean we are good on the inside. I make it a point of telling my doctors when I see them I may look good to you but I have put a lot of effort into it and that is the truth. Anyone who really knows me, knows when I smile, my smile doesn't reach my eyes any more. It's not because of the facial weakening on the leftside, it's because of the struggles I battle on a day to day basis. Hang in there Pooter you are not alone!
Anne Marie
-
I had an angry moment just this week. I was watching TV and I could really hear the tinnitus in both ears. Before CK, I didn't have any in my AN ear. They are different pitches and usually I'm not aware of it. But that night, they were just humming really loud and I was so mad. I was almost in tears thinking that I will never again, ever, in my life have total quiet. I took an ambien and went to bed because I didn't want to do that the "despair" place that is so easy to go to.
As far as social events...well I understand to. The big, fun, understanding everything bar/restaurant crowds. I just tell my firends if there are certain restaurants I can't go to. And I resign myself to only being able to talk to the few surrounding me. If I know it's a certain place that there is not way I could even hear the person next to me...I just don't go. I try to do as much as I can, but sometimes you just have to say no. It really sucks sometimes.
Tisha
-
I really needed to read your post today!! Thank you, Pooter!!
Recently a very well-intentioned family member said to me as we were in our kitchen with a big group, talking, and kids were noisely playing nearby, "Well, sometimes being half-deaf comes in handy."
This person mistakenly thought that half of the tremendous noise was being shut out for me because of my being SSD; what this person didn't realize was that I was going crazy with all the noise and wondering how much longer I could cope with being in that environment.
I just smiled because I was too mentally exhausted to reply sanely.
Brenda (teffaz)
-
Have a pint and smile a lot!
(They're never going to be able to understand, so don't wear yourself out trying to make them compassionate.)
Brian,
I think Nancy Mc nailed it The issues you mention are ones that plague most of us, I think. I know I face many of the same things, as obviously, others do too. I've decided that peoples' expectations are problem although I don't put it quite that way to them. our brain boogers have changed us, in some ways for the better but not in others. I also miss being able to enjoy my family gatherings as much as I used to. I have a big noisy family and often feel isolated at gatherings now. I miss much of the conversations that go on. People just don't get the fact that if they are going to talk to me in these situations, they need to get my attention so that I know they're talking to me and that I will still miss at least part of what they're saying. Sometimes I get tired of trying to explain this over and over and just smile and hope I'm responding to something approrpiately.
Wendy
-
To be perfectly honest, which is easier on a forum than in person, I suspect I was like those people before I had an AN. I never really thought about my hearing, I just heard everything the way it was. It would have seemed strange to me to have someone tell me that they could only hear some of the sounds, and weren't sure what direction sounds were coming from, and heard other sounds that weren't really there. I would have nodded my head and said "um, okay, sure", and forgotten about it an hour later.
I wonder what people with limited vision go through? We are probably pretty hopeless at understanding what it is like for them. I have to agree with Nancy, it is probably better to just accept that others can't really know what it is like, unless they are experiencing it too. Just enjoy the things you can do, and don't worry about the things you miss out on. I have gotten much more comfortable these days saying "what" as many times as needed to get it right, if there is something I want to hear, and with ignoring everything else.
Steve
-
I have to agree with Nancy, it is probably better to just accept that others can't really know what it is like, unless they are experiencing it too. Just enjoy the things you can do, and don't worry about the things you miss out on. I have gotten much more comfortable these days saying "what" as many times as needed to get it right, if there is something I want to hear, and with ignoring everything else.
Steve
This sums the situation up about as well as can be said. Amen.
Catherine (JerseyGirl 2)
-
Thank you, AN'ers for all your comments! I've had an unusually difficult week with a friend from long ago whom I hadn't seen in almost 50 years....who just could not "get it". She's back in her own home now, but I'm left with wondering what I might have said in reply to some of the conversations which I just could NOT hear....And again...people talking to me who are looking in the other direction. I don't think it was "vain" that I would not say....repeatedly...."I'm sorry, I didn't hear what you said"...it just gets "old" after awhile. So I nodded, and smiled, and hoped that I was at least somewhat on the right track of the conversation.
A normal visitation would have included walking tours, restaurants, etc. etc. Both of these activities are difficult for me with the balance issues, and the noise. (tinnitus in both ears.) So I think she might have had expectations for this visit that were not realized. And that makes ME sad. Other friends will call and say..."How are you? You're doing great now, right?" Since the CK, they are convinced that I'm totally CURED! I'm grateful that at least some do call.
Directional noises are, for me, probably the worst. I'm on "Noise alert" much of the day...hearing things that I don't understand...thinking that the dripping of the gutters outside is my refrigerator leaking! It's only been 11 months since diagnosis, and CK was last October...so I'm not expecting too much from myself...yet...my wish and prayer is that others would at least TRY to understand. But I have to ask myself...."how can they?" As another AN'er commented....unless they have walked in our shoes, they can NOT understand. My hubby is at least compassionate, but even HE does not always "get it". It's true that it IS the "invisible disease"... Thank you for posting this. A huge help to me today...and I pray that some of the comments from the AN'ers are a blessing to you, too! At least we have each other!
-
I can't truly expect my friends and family to understand when my own PCP asked, "You got your hearing back then?" I mean REALLY!!!!!!!! HELLO!!!!!!
-
I can't truly expect my friends and family to understand when my own PCP asked, "You got your hearing back then?" I mean REALLY!!!!!!!! HELLO!!!!!!
And mine asked me, "so if you were lost in the woods and someone was calling your name, you really couldn't determine which direction the sound was coming from??"
I replied that I didn't even need to be lost in the woods to experience the problem.
Catherine (JerseyGirl 2)
-
I have to say my Doc has been really great with all of this....I am her first AN patient...She hauls me in every 3-4 months to check in on me and any new info....I'm also her first patient with a BAHA...I think I'm the first in my area as the nurses (when my ENT has them visiting me 2-3 weeks after BAHA surgery) where amazed and even brought students nurses to have alook.
JO
-
My family dr has been great too. I am his first facial neuroma also. He watches me like a hawk. I see him every 6-8 weeks. The insurance company is constantly sending him forums and he continues to fill them out. He tells me over and over that he is in my corner and he will always advocate for me. He has known me actually since high school. He was a few grades a head of me. He helped bring my sons into this world and he has seen first hand what I am battling. When he runs into my husband at the hospital the first thing out of his mouth is how's Anne Marie. Louie is actually amazed.
Anne Marie
-
Hi everyone:
I sure can relate to what everyone is talking about.
I feel I am in denial because I can not do the things I use to do. I hope they will get better over time as I am only 14 months out. I have been a hermit this last year and I do not want to go out to a bar with my friends or even lunch. I really miss drinking alchol! I hope to get the headaches under wraps because that even limits me more. I also miss my smile!!!!! People at work have been good and my husband great! I wish I had a better doctor I always feel like I am bother them.
I am looking forward to a better summer and try to remember the good things in life while trying to be more empathetic to others with disabilities. Thanks to everyone who shared. The best of luck to everyone,
Bell
-
I JUST NOW came across this. When I was 1st post op, b/c of my face, I did hibernate quite a bit. I guess it's easier for me than others b/c I have no kids. I still don't go to engagements that I know will be loud, lots of people. I have decided to take care of me & make sure I'm as comfortable as possible. At work I will walk away if noise gets to be too much. I have always had a love of nature, quiet walks, calming music, etc. so this has helped. I try to keep my days as quiet & enjoyable as possible.
I really feel for all of you who have obligations & can't get away from it - I don't know how you do it.
Always good thoughts, Nancy
-
I had a stroke April 4, 2009. It was in the area of my brain the neurologist calls the "executive decision area." It involves making decisions, planning, thinking ahead. I could speak, but I had (and still do) have word finding issues. I want to talk about dinner, I can see that steak in my mind, but I cannot think of the word "steak." My wife will ask what I want for dinner, but I cannot tell her because I don't know how to tell her what I am thinking. I go to speech class, and they help me speak better, by making me think harder. The first instructions were to touch my knee, and then touch my nose. I touched my knee, but could not remember what to touch next. I still fail the classic questions doctors ask you if they think you are having a stroke. I want to get better. I think hard. I do puzzles. My wife helps me...she is one of God's angels...but even after a year, she has difficulty thinking I have some mental disability. My best friend next door thinks I am "over doing" my word finding issues. Talk about ANGRY.
I got over the anger. Our lives are forever changing. I used to rock my kids...now I rock their kids. I used to run every day... if I ran today, I'd probably run in circles, but my knees and feet wore out, so I walk the dog. I used to water ski, now I just drive the boat. I loved my mother, but lost her 10 years ago. Things change. One of the great movies out there is "Parenthood". Not the tv show, but the movie. The old grandma talks about life as if it is a roller coaster...some people get scared, some go along for the ride, and others enjoy the ride. I'm enjoying the ride. It is the only ride I have, and nobody is going to stop me from having fun!
PS: I still get a little upset about my hearing loss, my mental disability. Life is not perfect...it just changes every day. Enjoy the ride!
-
Wow... that is a lot to digest. With tears in my eyes as this is near to my heart, let me try to have a stab at this. Let's look at the flip side.
How does one deal with the expectations of anyone or anything? Being a SO or friend of someone that goes through this, you have to realize that their life changes too, but nobody sees that. Nobody feels sorry for them because they didn't have brain surgery. Nobody wants to help them. They just get upset when they are not doting on the one with the tumor 24/7. You are right... the game has changed on you... there is no denying that. But the likes, dislikes, passions, etc. of those around you have not changed. They might hate to do those things with you because it is as if you died... like you are not there, but to do them without you, they are made to feel guilty by you and everyone else around. But to deny those things they love... is that fair either? Should their passions die because they are tied to someone with a brain tumor? Is it selfish to think they shouldn't just die? I am not trying to be hurtful, but please see that those around you are affected as well. There are people that might not call you as much anymore because the Brian they knew and loved is gone... and new friends that love you dearly for the wonderful man you are (and they don't have the memories of the past). A SO is in a different situation... they are expected to stay there and be supportive and give up everything for you and they may want to, but know the expectations are there regardless of whether their will, determination, or love is there or not. And to make it worse... how are they supposed to react when they are faced with it on the computer, but no warning.... couldn't have been an accident.
I'm sorry for people not reacting to you in the appropriate ways or the way you expected.... we are all just trying to make it through this.... just like you.
J
-
How do you effectively communicate that you HAVE changed, although not materially so, from the person that you used to be?
Ya know my Pooter :-* , I've sat back and followed this thread to see what direction it takes... and lemme tell you, you have received some top-notch insight from those that have "been there, done that".
So, you KNOWWWW I'm going to finally put in my 2 cents (or pence, depending on which side of da pond you are)........
to answer your question I quoted.... you just tell everyone that.... yeah, you've changed... into the newer, improved Pooter that we all continue to appreciate and lurve. They can either embrace you for the new and improved (and yes, even with SSD, you are certainly improved :) ) man that you are. You know the work I do for the disabled... and the one thing I can tell you... accept for what we are, don't expect us to change for anyone and embrace our true beings... and that goes for us as well.... to "treat others as we would want to be treated".... and if they don't.... well, shame on them and its their loss.
There is a thread I started a while back (oh, my .... I think if you dig deep in "Archives" forum, you'll find it, but sub-link here: http://anausa.org/forum/index.php?topic=7681.0) about "when others leave your life" once they learn about your AN journey.... and oh, the sting I have felt. With everyone that responded to the thread, the one thing I learned and took from it was this..... "never try to guess human nature"... as we have no clue why some react one way and some, another way.
Heck, you got us :)
Hang tough, m'dear!
xo
Phyl
-
Hi, 'Giggles' - and welcome.
Thanks for having the courage to post what amounts to a view from the 'other side' and, by doing so, adding some balance to the discussion, which, by the nature of the ANA forums being here for the support of AN patients, lean toward the AN patient's POV almost exclusively. You raise some salient points regarding the spouse, significant other, relatives or friends position in dealing with the loved one that has physical deficits resulting from AN surgery (or radiation) and no longer is exactly the same person as they once were. It's a complicated issue and I won't attempt to offer glib answers to the questions raised but I can state from my experience that each person - the AN patient and the spouse, relative, friend, whatever has to chose to adapt and adjust to the realities involved. No, the 30ish husband may not like noisy-but-fun restaurants anymore or hiking in the mountains, whatever the specific issue at hand. That is discouraging to the spouse, relative or friend and obviously requires some adjustments on their part. Guilt should not drive their attitude. The AN patient should make that clear. If his or her family or friends want to do something he can't or would no longer enjoy doing, he should sincerely encourage them to go without him, explaining that he doesn't want to spoil their fun. Obviously, this is especially important for kids, who can't be expected to simply abandon their favorite pursuits because dad can't do them or struggles trying.
I went on a week-long visit to Disney World in Orlando, Florida in '08 accompanied by my brother-in-law, sister-in-law, their adult daughter (my niece, age 30), my adult son (age 30) and my wife. We made the 1,000-mile trip by car (SUV) and it was uncomfortable, plus, my brother-in-law is fanatic about driving 'straight through' so we slept in the vehicle, which, at my age, is not fun. Once there, we visited 4 of the Theme Parks, one each day. It involved a lot of walking in very hot, humid weather. I was O.K. and went on a lot of fairly 'strenuous' rides, such as the infamous 'Magic Mountain' roller coaster, 'Test Track' (twice) and other rides, including the stationary but exhilarating 'Soaring'. My wife and sister-in-law asked me quite a few times if I was "O.K." and of course I answered in the affirmative. My brother-in-law , some 6 years younger than me, has an old foot injury and has to use an electric 'scooter' that prevented him from participating in many of the rides and attractions. Some days, he chose to stay in his room for the day, meeting us for dinner. No one made anything of it because we understood his reasons, and knew he wasn't being anti-social or petulant, he just couldn't do the things we were doing. Ironically, my 30-year-old niece took a 'day off' because she was too tired to walk another day and my son caught a bug and spent the last 3 days of our expensive vacation in his room, in bed, most of the time. I couldn't complain because he paid his own way and really was sick. The point being that I pushed myself (with no negative consequences) to do everything and be a part of the fun but I know, without a doubt, that had I been unable to, my wife and relatives would have understood, made the necessary allowances and not considered me to be 'a drag'. This is the kind of mutual respect and understanding necessary when the post-op AN patient is trying to socialize with family and friends but, perhaps, cannot do everything he or she once did.
As I posted to Brian, had we had a heart attack or a knee replacement, most people we interact with would be quite accommodating and not expect us to do everything we once did. However, because few people even understand what an acoustic neuroma is and the usual hearing and balance deficits are invisible to others, our ongoing inability to do or enjoy some things are not always given a lot of consideration. We're not visibly impaired (except for those suffering facial paralysis) and our change of attitude seems a bit selfish and hard to understand by folks who have not experienced an acoustic neuroma and the surgery that often is necessary to remove it and it's consequences on our quality of life.
I state all this as an AN patient who survived a large tumor, surgery and radiation and once safely through the medical procedures with minimal complications, was determined to regain my quality of life. I was able to do so with a combination of prayer, hard work and an attitude that simply would not countenance anything less than a successful transition back to doing what I've always done. However, my situation is somewhat unique. I was retired at the time of my diagnosis, did not have young children to care for and had the great benefit of an extremely supportive spouse. She has undergone numerous surgeries over the past 20 years, has endured much pain but always refused to 'give in' to it and has led a relatively normal life. She no longer works but has an active social life and we've enjoyed many good times together, including the aforementioned week-long visit to Disney World in 2008. In short, she understands. Not every spouse, friend or relative does. This is why I want to reiterate that mutual understanding is necessary to alleviate frustrations and hurt feelings between the post-op AN patient, family and friends. Of course, it isn't always so simple or easy. This is why I stress that we have to be willing to accept that some of the people we're closest to may not always have the 'right' reaction to the 'new you' that an acoustic neuroma and subsequent surgery sometimes imposes on us. Unfortunately, there is no pat solution that I can see. It is what it is. However, I appreciate your posting, that attempts to offer a view from the perspective of one dealing with an AN patient, often with deficits and unhappy about them, as you would expect. There are always two sides to every story and I appreciate you helping us to see both.
Jim
-
Giggles,
I'm with Jim. It took a lot of courage to post your response and - being an AN patient without a SO or other family member that is greatly affected by my outcome - I find your perspective on this issue very insightful.
I've never considered things from your point of view and I appreciate you giving us the other side of the coin.
And, Jim, as always a very well written and thoughtful post. I couldn't have said anything even close to as good as you said it.
Jan
-
Holy cow! How the he** did I miss this last week?
Brian...thank you for your heartfelt post. You have put into words what so many of us have and continue to struggle with. I had tears as I was reading what you wrote as well as the many reponses from ANers and friends/spouses of ANers. Your comments (and I'll paraphrase here) about being the life of the party and the guy who was always front and center at every gathering "before" really struck a chord with me. You could have been writing for me (well, except for the gender thing of course.) I am not that girl anymore, and it does make me so angry sometimes. And some of my friends don't understand why I am different- they get irritated that I am "hanging on" to something that, in their minds, happed nearly 2 years ago. I can't change that, but I can choose to limit my time with those people.
Having gone through most of the first year with noticable facial issues atually made this easier in some ways because at least people had a visual reminder that things were different. Don't get me wrong , I'm extremely grateful to have gotten so much of my face back in the last 10 months. :) However, it doesn't change the intense feelings of isolation I feel at loud gatherings. I visualize myself retreating into my little cone of silence - kind of like a kid who has an imagineray world to escape to.
The truth is that if you were missing an arm or a leg people would make allowances because they would have a visual reminder. If you lost a leg your friends probably wouldn't expect you to go out dancing every weekend. ;D With things like hearing or vision or balance loss ... nobody can see it. Out of sight, out of mind. And yes, we keep reminding people that we're deaf on one side, but they can't see it and they forget. Sometimes its just easier to tune out. For me, this seems to be exacerbated by the constant state of blurriness of my AN side eye. It is lubed up all the time with the net effect that I am essentially blind on the right side. So, I find that I am tense and on high alert when I am out in public - and I jump when someone appears on my right side without me having heard or seen them coming.
I am lucky that Willie has been with me every step of the way and is very tuned in to what I am experiencing. He watches out for me. My closest friends - they are pretty good most of the time, with one notable exception who just refuses to even acknowledge that I had freaking brain surgery. I am excising her from my life - just not worth the work.
So Brian, all the feelings you are having - I totally relate. Not that this solves anything, but as you've already seen from all these posts you've got a lot of friends here who completely understand what it feels like to be missing two of you primary senses. As for those on the outside, just keep talking to them, telling them how you feel (I know, you guys don't always like to do that mushy stuff.) Sometimes it helps people understand if they realize that noisy environments no longer feel "safe" and large groups of people can make us feel extremely isolated and lonely.
Aw, shoot, Brian I'm sending you a big old cyber hug. We are, after all, tumor twins - you know I've got your back.
hugs to everyone who is trying to adjust to the new "normal" and to those who love them, even on the crummy days..
Debbi
-
Very funny Catherine -- I know what you mean though. This would happen to me if the other person were in the same room with me if I didn't see them. I know you understand what I mean! :D
Wendy
-
Wendy,
Yes I do understand! Hope that all is well with you -- you haven't posted anything in quite a while. I'm looking forward to seeing you and all the others at the NYC/NJ luncheon in May.
Catherine (JerseyGirl 2)