How do you....?

[leapyrtwins]

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   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

[Pembo]

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.

[carter]

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!

[Pooter]

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

[lori67]

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?    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.  
Lori

[briansmome]

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.

[yardtick]

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

[Tisha]

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

[teffaz]

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)

[wendysig]

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

[sgerrard]

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

[JerseyGirl2]

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)

[b91221b]

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!

[NancyMc]

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!!!!!!

[JerseyGirl2]

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)