How do you....?

[Pooter]

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

[epc1970]

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

[Jim Scott]

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

[tenai98]

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

[lawmama]

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

[SML]

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

[Lizard]

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

[Jwh]

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.

[Pooter]

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

[leapyrtwins]

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

[bdsgurl]

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!

[opp2]

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.

[Cheryl R]

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

[Kaybo]

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

[NancyMc]

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.)