ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: juliec on September 22, 2009, 09:18:18 am
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Well-meaning people are annoying me with the old "it could have been worse" comment and the "at least you can hear out of your right ear" comment. It is so insensitive and annoying! It does not make me feel better, which I'm sure is their intention. They also say "you look great" when I know they will never see my crooked smile and my large, glassy left eye is hidden behind glasses because I can't wear my contacts yet. I know things could have been worse and I'm grateful for all the recovery, yet these comments annoy and depress me. Anybody have suggestions how I can deal with these comments and be more positive? I must be looking for sympathy or something, otherwise the comments wouldn't bother me so much. I'm trying not to be so negative, but some days I'm just not too successful at it.
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Hey Julie
I'm so sorry you are frustrated with all of this. I moved this thread to this forum as it really is an "emotional" issue... how to deal with others in your life when things don't always come out of their mouths as we would hope.
I know you are just 1 mos post surgery (based on your sig line) and I'm going to see how others that have been the route respond to this.
I sat in on the "Emotional Impact of having an AN" workshop at last months ANA symposium in Chicago. It's definately not an easy road. In the case of others commenting as with you, do we be gracious, say thank you and try to let it roll off our back? Maybe. Do we be honest with folks and hope they understand the frustration that we endure with this journey? Maybe.
Reaching out to folks here that truly do understand is what matters... surrounding yourself with folks that know and understand how it feels. So, ya done good :)
There are threads here in the "Cognitive/Emotional" forum that may be of interest. The one I started about how others leaving your life in time of need may be worth a peek as some of the responses do note what you are running into.
Anyway... hang tough. You got all of us to lean on... and if anyone understands, we do.
Hugglez,
Phyl
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Just as a point of interest, my name is Julie too and I have left sided paralysis and left sided deafness too. At just one month out (I know at that point it seemed like forever) you really haven't given yourself time to adjust emotionally. I think you have to learn to deal with it yourself before you can deal with other peoples annoying, misguided, and insensitive comments. I found that most people really don't know what to say. They have never known anyone who has gone through this either!! They are trying to be positive and have no idea how hurtful it feels on our end. At some point I was able to come to grips with the fact that no one else I know outside of this small circle of friends would ever know or understand how I feel. It took a while for that realization to be "ok". I'm almost 10 months out and I am just starting to feel somewhat comfortalbe with this idea. I knew no one would ever really get it when a good friend of mine who is a beautican was cutting my hair and I asked if she could think of any hair styles to minimize my droopy left side and she said gee, I had no idea it really bothered you that much. In her eyes it just wasnt a big deal so she had no idea how it was affecting me. I was talking to another friend, who is generally very sensitive, and made the comment that I wondered what I would do if I never got any movement back. She just looked at me and said, oh well, it won't be a big deal if you don't. At first I felt like I had been slapped in the face. Then I realilzed that in her eyes I was the same person and if I never got any movement back she didn't care, she loved me anyway. Most people are so wrapped up in their own lives they don't have a clue, they don't mean to be cruel or insensitive, they just haven't given it any thought. Well, now I'm just rambling but what I want to say is you need to give it time. I think it takes more time to heal emotionally than physically, and as wel all know, with AN's that's a long time. Be kind to yourself and try to be patient with others, and always know that there are people here who really do get it.
The other Julie
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Sounds to me like you have the dreaded "LPT"AKA LOW People Tolerence!I have this along w/ many others here.It comes n goes.....its just so hard to be patient w/ all we have to go through.
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Hi, Julie ~
I think we all can empathize with your frustration and annoyance, even anger, at well-meaning family, friends and acquaintances who seem to dismiss our very real AN-connected problems as if they were no more than a hangnail. I can accept the "you look great" comment because, unless one is very obviously disabled, those internal problems many AN patients deal with; dry eye, facial weakness and so on, are mostly unseen by others and unless we want to wear a sign around our necks proclaiming our deficits, they will go unnoticed. I agree that folks making what can be considered insensitive comments do mean well. Who tells a friend or co-worker "you really look awful, today"? Saying "you look great'" is a very natural reaction when meeting someone who you know had major surgery - brain surgery, no less - and seems to be functioning just fine. No wheelchair or other appliance needed to navigate and no 'sickly' appearance. The dilemma is that, although you may not appear to be 'sick', you do have problems to deal with and being told how 'good' you look gives the perception that the other person, who perhaps should know better, is ignoring your struggle to fully recover. The unacceptable alternative is to begin a litany of the problems you're facing, and no one really wants to do - or hear - that. So, from the recovering AN patient's perspective, the "you look great" greeting morphs from a friendly compliment into a borderline insult Comments that "at least you can hear out of one ear" or that old standby "it could have been worse" may be technically accurate but still seem to indicate a minimizing of your situation.
I enjoyed an excellent recovery but I'm still SSD and carry a few minor-but-invisible-to-others remnants of my AN. To anyone I meet, I know before they say it that "I look great" considering my large AN, surgery and radiation. I simply accept the compliment, knowing that they are leaving unsaid : "...for an old guy who had brain surgery" I can guarantee you that in time, as the reality of your surgery recedes and you continue to recover, the insensitive comments relating to your surgery ("it could have been worse") will slowly but surely cease, as your circle of friends forget about it and assume you're 'back to normal'.
Frankly, Julie, I don't think anyone who has not gone through the 'AN experience' can really appreciate the stress and later physical issues AN patients deal with, sometimes for years. My wife, who refuses to be sedentary, suffers with Fibromyalgia, Chrohns Disease, IBS and serious spinal issues (many surgeries over the last 15 years). She deals with pain every day as her friends and acquaintances remark on how 'good' she looks. When asked how she's feeling (not so great, lately) she always replies: "I'm taking it one day at a time". To those who are close to her, they understand this means she's having a hard time. Others just smile and tell her how good she looks, then start complaining about their own problems, which she listens to and tries to help, when possible. She has no intention of burdening others with her physical maladies and doesn't even tell me too much about them, except when they're really bad. Her fortitude was a big factor in my recovery. I felt sheepish complaining to her when I knew she had her own physical issues to deal with. So, I pushed aside whatever issues I had (none were noticeable, except to me) and, combined with a fierce determination to regain normalcy, I was back into my temporarily-interrupted life within six weeks of my 9-hour AN surgery.
I relate all this as not only a salute to my loving wife (of 39 years) but as an indication that we cannot really know what others go through with a physical problem unless we've been there, ourselves. Thus, we'll very likely continue to receive well-meant but annoying 'compliments' and comments about how "it could have been worse" (yeah, we could be dead) from those we encounter as we struggle to recover. I have no other counsel than to smile and say 'thank you' to these comments, as my wife does and I once did, knowing that the other person has no clue but most probably doesn't mean any harm or insult, either. To reiterate, in a few months you'll likely be so far along in your recovery that no one will feel the need to remark on your appearance or remind you that "it could have been worse". I guess the best suggestion I can offer is to understand, forgive and refuse to allow other peoples insensitivity to color your attitude. As one matures, one realizes that people will sometimes be insensitive or just plain dumb, and it can be quite annoying at times. You can't control that, but you can control how much you allow their insensitivity and foolishness to upset and annoy you.
I trust you'll be able to handle this phase of your recovery with élan and go on to better days as you continue to improve and the deficits gradually fall away.
Jim
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Julie, I thought of you a few days ago and wondered how you were doing since you were a Univ of Iowa ANer. You have done well. I do know the emotional recovery takes longer than what we would like to think it does and should. It is easy just to think of how we look and not the whole picture of how we are doing that others may see in us. I don't think the drs really understand it even. I have now known Gantz for 8 yrs and he has did ANs for far longer than that and feel it has took time before I felt he has come across as knowing how some of the post op issues really feel to us.
I know how hard it is to go thru the facial problems and hope that yours improve soon. Just try to be not too hard on those who do not understand this all and know that there is some who do. Everyones personality plays a role in how they adjust to all this and it is harder for some than others.
I wish you well, Cheryl R
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Julie
I fully understand your frustrations-so much so that I just copied and sent Jim's wonderfully written post to my family-hope you don't mind Jim! I have gotten to the point that for the most part, I have realized that as Jim said no one will ever understand what having an AN and treatment is like unless they go thru it. I just don't fight the feelings or a need to be "understood. I know that I am proud of how I have come thru my recovery and no one is going to minimize what I have been thru. When I get riled up or need to be around people who understand the frurstartion-physical or emotional-I come to this forum. Thank you for venting-you are not alone.
Erin
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Hi Julie: I have facial paralysis also, & I understand how you're feeling. As 'the other' Julie said, you are only 1 month out, this is still very 'fresh' for you (I'm over 3 years post op). At 1 month I felt like my emotions were on a roller coaster, heck, it lasted alot longer than that !
I do have an interesting story re: 'it could always be worse': I was at the ENT about 1 year post op, & was crying my eyes out over knowing my paralysis was permanent.
Anyway, when I went to pay my bill, a blind man heard me sniffling & said "it could always be worse." I thought, yeah, but you can't see my face.
As I was walking out of the building, I saw 2 young men, each on a stretcher, paralyzed from the neck down (this was at an outpt. clinic - I have never seen anyone on stretchers in this building, & I work at this hospital). I had to say to myself, 'yes, it could always be worse,' & I will never forget this story.
So, when I am feeling down (doesn't happen much anymore thank goodness !), I do think about that day at the ENT office.....
Always good thoughts, Nancy
ps: I never did have anyone say "you look great" until after my T3 surgery - now I say it to myself !
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...as you should, Nancy!! ;D
K
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I couldn't ask for a more loving wife but I got mad at her yesterday for asking me to repeat something because she thought how I said it and how my mouth moved (or didn't move) was "cute". I've asked her in the past not to say things like "you're eye looks good today" and such but she forgets and comments as things come to mind. I'm reminded enough about how things are by taking a drink and having some of it end up on my shirt or my eye watering like a faucet when i chew. I don't need reminders from others regardless of how well meaning they are.
Most of the time I just say thanks and change the subject but on some occasions, usually if I'm feeling down about something else, I just don't want to hear comments about "counting my blessings". I think the frustration of having others tell you things like that comes from the fact that you already know it could be worse. I haven't felt sorry for myself (at least not very often) since I met a 9 year old boy in a waiting area at MGH who had much more to be scared of than I and yet he was trying to cheer me up....and that was 5+ years ago. I just want everyone else to move on in the same way I have and stop reminding me.
It's great that we have this place to talk with others that understand.
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Thanks, everyone, for your replies. I must admit I felt a bit whiny when I posted this initially, but was really encouraged by your responses. I've decided when I get these frustrating comments, my new response will be that I'm the amazing recovery machine! Then I will probably not get any more comments (just laughter). And I have done really well. Driving after three weeks and working after four has amazed people, including myself. I never thought I'd feel better this quick. Of course my hearing will never return, but the rest is supposed to return to normal or near normal. Hopefully. And hopefully soon. I definitely know it could have been worse. I've just never been a very patient person. ;)
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I am 4 years out and I am still amazed at people. I have come to realize it's about them not me. How I react or don't is up to me. I have a friend that has a sarcastic side to her otherwise pleasant personality. I don't hear from her unless she needs something.....a place to go.....something to do etc. When it's about her she is kind and generous.....when it isn't.....she' sarcastic.....generally....and shows a jeaous side towards me. Jealous toward me for her own needs to be acknowledged.... not mine. I try to stay away from conversations that just might set her off. I'm not quite sure why she even bothers with me. If she gets a new purse etc, she needs to make me aware.... I really don't care about such trivia. She socializes often and entertains often...NEVER...inviting me. She is included in family gatherings....dinners...outings, even a trip to Hawaii (on me) yet I am not included in her circle. Perhaps it's my "illness" that causes her behavior.....not sure....no longer letting her behavior affect me....even say NO to a visit from her if there is a chance it's not going to be good. My circumstances are mine, albeit not good at times, and I am soooo grateful that I am here and have this forum to talk to others in a more positive atmosphere. I am a widow, mother and grandmother and have many wonderful friends who are compassionent and nice. Making the best choices for me is my job. Please try to "save yourself" from events that hurt from others. This is a marvelous place to come to and always available. Judy
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"I'm not quite sure why she even bothers with me. "
Hi Judy: I'm not quite sure why you bother with her ! !
Keep those 'compassionate friends' close, that's what matters !
Always good thoughts, Nancy
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While some people are definitely toxic - I think the majority just don't know what to say, or how to say it, and in an effort to be supportive fail miserably.
Jan
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Hi Juliec,
Well, if well-meaning folks say the old "it could be worse", line, you can always say, "Hey, this is the worst that has happened to ME." or, "yeah, I'm at my limit, though, for worse, thank you very much". Or, "Yeah, I'm grateful I'm not totally deaf, and half-deaf is better than deaf, but...I've lost directional hearing, I've lost my ability to enjoy full surround sound, the car radio sounds like it's coming from only one speaker, going into restaurants and crowded rooms brings on a lot of problems that are hard to explain, and the balance nerve is compromised and there are so many things that are haywire now that are subtle and difficult to express and it's highly frustrating. I just need you to understand that, yes it could be worse, but it is still something I have to learn to live with and adjust to and it's tiring and even though it may not be evident to you that I have problems other than what you see, it is very evident to me and I appreciate your support and friendship because I need it now.
Or words to that effect!! Or you could tell them to jump in the lake, if that suits you better. :D ;D
Hang in there, kiddo.
Sue in Vancouver, USA
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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 :P
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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.
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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
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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
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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.
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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
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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
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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!!!
8) 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
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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
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Yeah, Cheryl!!!
Way to go!
Clarice
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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.
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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.
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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
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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!