People Frustrations

[mimoore]

Well said! I hear ya sister (well out of my good ear)!
It is my husband that ticks me off the most - oh honey it could be worse! Ya ya I know but sometimes it just sucks okay?
Michelle 

[Nani]

People aren't trying to insensitive.  They just don't know what to say.  I finally told my friends to cut it out.  Sometimes I just want to put my missery out there and not get back words of aggrivation comfort.

[epodjn]

I feel like I want to send this thread to everyone I know, in hopes that they will get a clue. Then it dawned on me, oh ya, they don't really want to hear it. They want to think they have cheered me up and made me feel better and if they haven't they don't want to know about it. It's not that they don't care, they just don't understand, AT ALL, but knowing all of you do is what makes life good!! Thank you all. I don't know what I would do without you.
Julie

[doctorb]

First let me apologies for adding my own feelings here rather than starting a new thread, I hope you don't mind me sharing this space with you Julie.  

I said it just the other day in the Group Meeting here in Atlanta and I'll say it again, I'm angry, not because AN happen to me, boohoo, but because of what it's done to me physically and how I'm perceived now by the people around me; my own family included.  I overcame part of that by sitting down at my desk in my home office only four weeks to the day after surgery and within that first week back, closed 250K in new business.  The rest of the anger comes from the same place as your frustration, and unfortunately is still with me.  

When I hear somebody say those things I first think they sound terribly insincere, and than just plan stupid (excuse me).  I have coworkers and customers that say the same things to me daily and it takes everything I've got to hold my tongue.  Don't patronize me, I think to myself, I know it could have been worse.  My Surgeon told me I could have died on the table.  Or if the surgery was put off for too long, the Tumor could have put greater pressure on my Brain shutting down my bodily functions killing me. Don't tell me it could have been worse, I lived it and continue to live it!  Sometimes I wonder what they'll say once they hear I still have to have CyberKnife treatment in about four months to get the 5% of the Tumor left behind!

Enough, I'm getting myself all worked up just typing about it.  Sorry!  I hope you start feeling better soon Julie!

Doc

[epodjn]

If I hadn't read this thread before we took my 83-year-old mother-in-law on a long weekend trip I might have cut my wrist (just kidding). I spent the whole weekend hearing how "it could have been worse" and how her diabetes is worse. The only thing that saved me was knowing all you would understand my frustration!! But I survived!!! But it sure was a long weekend.

[Jim Scott]

If I hadn't read this thread before we took my 83-year-old mother-in-law on a long weekend trip I might have cut my wrist (just kidding). I spent the whole weekend hearing how "it could have been worse" and how her diabetes is worse. The only thing that saved me was knowing all you would understand my frustration!! But I survived!!! But it sure was a long weekend.

(The other) Julie ~  

You have my sympathy - and that of many people that have recently posted on this thread, I'm sure.  Your week-end experience with your elderly MIL proves, yet again, that most people are going to be a lot more concerned with their own physical problems than those of anyone else.  I doubt this attitude is confined to just the elderly - or to in-laws. Every human being is self-centered to some degree or other and when you have an 'invisible' deficit, as many of us do, the level of concern from others goes way down if that concern might intrude on the sympathy and attention they usually receive from friends and family for their perceived problems - as is likely the case with your mother-in-law.  

I agree with Cheri:  I don't really expect a lot of sympathy from others.  I put my physical (and other) issues in the hands of the One who can actually do something about them - and has, on many occasions.  This is a very personal act of faith that I realize won't be understood or shared by everyone - but it sure 'works' for me - and I highly recommend it.  

Jim  

[epodjn]

Jim,
I know just what you mean. I don't expect sympathy from my mother-in-law or anyone else. I would just like to be treat normally and not told over and over again, that I look good for what I have been through, I don't look so bad anymore, or my all time favorite, You just keep smiling honey, or at least that funny face you make when your happy. I'm actually pretty darn proud of the "smile" I have righ tnow. I know it's not a the huge smile I used to have but it is a smile, all be it a little lop-sided. I know she means well and is trying to be encouraging but I'm just tired of the constant commentary on my progress. I am so grateful for those people in my life, and there are a lot of them, who treat me the way they always did, who see ME and not my face, who understand that they don't understand, and say it. That means a lot.
LIke you and Cherie, I put my life, my face, and my problems in the hands of Him who has all power to heal and know that he has given me this challenge to learn and grow from. And hopefully to use it to help and understand others.
I'm so grateful to all of you! It's so good to know that there is somewhere I can go and vent and be understood.
Thanks,
The other Julie

[Seal]

I am just reading this thread now for the first time, and everyone has made some very incisive comments and interesting viewpoints.   We have all gone down a very intersting road to say the  least, and I am sure that it will continue to be a challenge for the rest of our lives.     I choose to "look on the bright side of life" as the saying goes from Monty Python.      Some of the more amusing comments have been:

1)  So you really don't hear anything out of that ear?
2)  Just get a hearing aid!
3)  You're balance seems fine to me!!!
4)  Repeat it?    Oh yeah, like your are deaf in one ear or something!!!!!
5)  I'm over  HERE!!!   (a daily comment from my kids in other rooms)
6)  Oh never mind, it wasn't important!!!   ( they get pissed off at repeating things)
7)  Oh it will come back, just give it time!!!
  But you LOOK great!!!!
9)  Did you hair all grow back?
1)  ..... and last one ..........YOU HAD BRAIN SURGERY??

Feel free to add some to the list of Comments of Infamy!!!!!!    And that's just the first six months.   There should be alot more material in the next 6 years!!!

Steve

[Cheryl R]

I had someone give my name to a hearing aid center and I get mail from them and now one more for hearing aid info.    I know it had to be someone from where I was working and still bugs me!                   I get very frustrated over trying to explain what no balance nerves on either side means!            That is really an unknown to most people.             Plus it is always at a time where I am doing ok with walking and not in a place where I do have problems. 
To brighten my day, I just this week bought a new sewing machine, one with a self threader so I can now thread a needle!    I have issues with getting myself to do more than my ususal every day routine.       So this is a big deal.         Our 6 yr old granddaughter now has a Fancy Nancy pillowcase made for her birthday party tomorrow with her Fancy Nancy theme.        Just a start as was never a big sewer!                                Cheryl R             

[CHD63]

Yeah, Cheryl!!!

Way to go!

Clarice

[juliec]

Steve, I love those! Number 6 really frustrates me. My husband is famous for that one. He doesn't get pissed, just tired of repeating stuff. He understands why I can't hear, but still doesn't want to repeat stuff. I told him it wasn't fair not to repeat something since it was his fault in the first place--he knows I'm hard of hearing and should speak up when he talks to me. I also told him I would miss out on so much that goes on if he continues to do that. He's been better since I said that to him.

Here's a couple more:

- So your hearing loss permanent then? I heard that might come back for you.
- If someone had to pick you out of a line-up, they would never guess it was you that just had brain surgery.

[TP]

You know what bugs me (one of many) is when I am having to unload my grocery cart (I spend more money at the grocery store and it just irritates me I have to unload it 95% of the time- sorry I diverted). Well at my grocery store they always ask paper or plastic....Since I am unloading all the "stuff" my back is turned to the cashier. They will always ask paper or plastic, majority of the times I don't hear them. When I finally finish unloading all the "stuff" they ask me again and I say plastic....sorry I didn't hear you but I am deaf and you know what the cashier says everytime-doesn't matter who it is!!! "Oh that is ok, no problem". Well I have never said anything back to them cuz I try to be nice but just between those of us reading this, I get really ticked when I tell someone I am deaf and I didn't hear them if they don't mind repeating themselves and they say "no problem" or "that is ok" like that matters. Yes, you would think the cashiers would recognize me by now....

Oh well, what I've learned the most from all of this is that there are people who are gifted in providing support and empathy with folks who have been through health issues or difficult times, then there are folks who don't fit in that category which is probably majority of human beings. I am sure I am in the that second category and have offended or hurt someones feelings who has been ill or recovering from something in their life. Since my AN has been removed I have tried to make a concerted effort to be more sympathetic with folks and listen more when folks need to talk. 

[Jim Scott]

FYI: As a way of explaining to people that ask why I don't get a hearing aid, I usually explain it this way: a hearing aid won't help because my hearing is just fine.  (I explain) the nerve that transmits the sound my ear picks up to my brain is shot.  Much like a radio with the power cord cut off.  You can fiddle with the radio dials all day long but because the power can't get to the radio, you'll never be able to hear it.

Most folks understand that explanation.  Well, that or their eyes glaze over about half-way through the explanation (with takes all of 60 seconds), indicating that they didn't really care much to begin with and just said the first thing that came to their mind when they learned that I was deaf in one ear.  Fortunately, this isn't much of an issue now, over 3 years post-op, because I've learned to adjust to my SSD quite well, making the accommodations necessary to function relatively normally.   It's not perfect but then, we don't live in a perfect world. 

Jim

[Nickittynic]

When people first heard about my "brain tumor" they got all worked up, until they heard what kind it was, the "good kind of tumor" (aka noncancerous), and then some people didn't seem to care anymore. I'm sure you all have heard that old "Well if you have to have a brain tumor that was the one to have.." .. goes along with the "It could be worse". And I love how I've heard it the most from doctors. How about all tumors suck. Period.

The one doctor comment I actually appreciated was from the first neurosurgeon I consulted, who seemed to actually get it. He told us "I don't like to use to term 'benign', I say 'canerous' or 'noncancerous', because can a brain tumor ever really be 'benign'??"

I'm also a little annoyed with people who think that just because I've survived the surgery all is supposed to go back to "normal". It's not that I want people's pity or anything, but it's hard when I look "so good" or whatever they say to express that the old "normal" is not coming back. And that's why I'm so glad to be here, with people who understand!