Author Topic: People Frustrations  (Read 15689 times)

juliec

  • New Member
  • *
  • Posts: 16
People Frustrations
« on: September 22, 2009, 09:18:18 am »
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.
Julie C.
Bloomington, MN
1.8 x 1 cm Middle Fossa surgery Univ of IA 8/13/09

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: People Frustrations
« Reply #1 on: September 22, 2009, 09:29:04 am »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

epodjn

  • Full Member
  • ***
  • Posts: 218
Re: People Frustrations
« Reply #2 on: September 22, 2009, 10:09:53 am »
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
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

cin605

  • Hero Member
  • *****
  • Posts: 810
Re: People Frustrations
« Reply #3 on: September 22, 2009, 11:07:27 am »
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.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: People Frustrations
« Reply #4 on: September 22, 2009, 01:28:25 pm »
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

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: People Frustrations
« Reply #5 on: September 22, 2009, 01:57:31 pm »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

epc1970

  • Guest
Re: People Frustrations
« Reply #6 on: September 22, 2009, 03:51:28 pm »
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

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: People Frustrations
« Reply #7 on: September 22, 2009, 05:51:05 pm »
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 !
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: People Frustrations
« Reply #8 on: September 22, 2009, 07:01:58 pm »
...as you should, Nancy!!   ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

stoneaxe

  • Hero Member
  • *****
  • Posts: 569
  • Make your good days more than make up for the bad.
    • Cape Cod Bay Challenge
Re: People Frustrations
« Reply #9 on: September 23, 2009, 07:45:26 am »
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.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

juliec

  • New Member
  • *
  • Posts: 16
Re: People Frustrations
« Reply #10 on: September 23, 2009, 01:36:00 pm »
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.  ;)
Julie C.
Bloomington, MN
1.8 x 1 cm Middle Fossa surgery Univ of IA 8/13/09

JudyT

  • Full Member
  • ***
  • Posts: 123
Re: People Frustrations
« Reply #11 on: September 27, 2009, 11:06:20 am »
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

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: People Frustrations
« Reply #12 on: September 27, 2009, 12:01:26 pm »
 "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
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: People Frustrations
« Reply #13 on: September 27, 2009, 12:34:24 pm »
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

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: People Frustrations
« Reply #14 on: September 27, 2009, 02:13:42 pm »
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



Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode