ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: ppearl214 on March 07, 2006, 12:53:30 pm
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Hi all,
I've seen this slightly discussed around here in some other threads. I've discussed this with family, coworkers and some friends/acquaintances. I figured that this would be a good topic of conversation....so, here goes.
Why is it that when some in your life find out what is going on physically with you, they disappear from your life?
Example:ÂÂ
-A man I was dating for almost 2 years found out last May of my AN.  Boom... never heard from him again.
-A dear friend of over 20 years was told last May. Now, she's always the one to hear of an illness, jumps right in, always there. I tell her about me... boom, no phone calls, nothing. Did get a holiday card from her in December, but nothing more.
My best friend of over 40 years (Kate) and I were discussing it in the car yesterday. She reminded me that she will ALWAYS be there for me. (you have no idea the tears I shed when she said that). A coworker and I discussed it this am. My coworker couldn't understand why people would do that? Her comment was... were they scared that we would "infect" them or are they that heartless? My only comment to her was... "well, I guess it's all part of human nature". I have no clue if I'm right or wrong on that but, I wanted to throw this all out at you.
Some of the folks here and I have also discussed this and what an isolating feeling when someone we always held as dear in our lives, does this to us.
Are many of you in the same shoes as this? Do you find that others (in your private lives) have disappeared or when you try to call or such, don't even both to return the call or check up on you? How do you deal with it?
I know this doesn't just apply to AN patients but cancer patients, etc as well. Has always been a sore spot with me that folks will do this but just trying to understand the human nature behind this kind of action.
Phyllis
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well I think part of it is many people think you are done for and they don't know how to handle that.
another things, is it is a hell of a burden for some people. And they just don't want to deal.
I am reminded of a saying I was told as a kid. Tell your troubles to your enemies, they are the only ones who really care.
While telling people what is going on is often unavoidable, it is important to realize that no matter what is happening to us, the world does not revolve around us. So it is easy sometimes to spend so much time talking about ourselves that we forget that others around us might be in need as well.
In the end, anyone who leaves you after they find out is probably better out of your life, for their sakes and yours.
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Phyllis,
This is a very real problem for us. Being around large groups of people makes us symptomatic(wobbly/headachy) which leads us to be a little or a lot antisocial. Illness freaks people out, too.
You just continously have to keep reaching out and not expecting people to reach in!
We also have a tendency to let our own physical problems dominate the conversation, which bores the crap out of folks sometimes. Personally I'm sick to death of talking about my health to "normals"--which is why I'm here on this site!!!
That's my story and I'm sticking to it.
Captain Deb 8)
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In my opinion (IMO), think it’s a “mortality check� for your friends. We’ve already have our “cross-to-bear� if you will. Everyone I know is nursing some illness or physical impairment…maybe these people are afraid of what is awaiting them…and they’re not sure or able to deal with it.
But…if I may… I have told a few people myself. The people that disappeared were not my friends…they were acquaintances…big difference there. Friends are supposed to be few, and hard to come by. They are the ones that you can call (or get called by), at
2 AM and be there in an instant, for any reason. If we have only a few friends in your life we are truly blessed. I have two…Bill and Don. I love them like brothers and know that I can call them (or them me) at any time day or night. I hug them when they walk into my home and when they leave…they’re like family to me.
So don’t be bummed out by acquaintances…they’re not worth it. Just be pleasant to them, hold your chin high…because we’re all going to get through this, and pray that they’ll be able to handle the cross that is waiting for them.
Gary
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I really agree with GM. I think when other people hear brain tumor, they think of their mortality and of death in general and it's easier to let go of someone alive than it is grieving through a death. There are many people out there (I'm now realizing) that just don't have very good coping skills. I'm finding that I need to comfort rather than be comforted right now, but it's a new thing for me and I have no idea who's going to stay with me through surgery. But your true friends will stay no matter what, and in reality, weeding the others out so that you can spend more time with the people that truly care about you is a good thing. Keep your chin up, and remember we're all human.
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Hi all and thanks so much for sharing your thoughts on this with me. You all are so on the money and can't agree with you more. As you can see by my original post, these are people I dated, I've been friends with for over 20 years, etc (definately beyond "acquaintances"). I really am not one to talk to those with "whoa, me" or such. As my mom says, "everyone has their own schtick" and I never forget that. I always start conversations with "...and how are YOU?". They have always come first in my conversations with them. They may ask how I am doing and it's usually "oh, you know me, I'm hanging tough" and usually leave it at that. If someone, like my best friend, really wants to know details, then I share details. The only other one's I share details with are my family members or boyfriend (yes, the Cheeky Bloke).ÂÂ
Everyone knows I just plug along, I live my life, I travel, I come and go, I do. I try not to let it hamper me if I'm not having a good day. In conversation, I keep my "illness" talk limited.
for me, I just don't get it. You all have very valid points and I can't agree more. I'm trying to take what you all wrote and apply it to individuals that have done this to me to help me try to make sense of it. Now, granted... I'm not going to wrack my brain over it but I'm just trying to get a better understanding of why.ÂÂ
So, thanks all for sharing your thoughts on this. :)
Phyl
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One of my best friends (or so I thought) is no longer in my life as of a year ago. She was a very needy person. Our relationship was based on me always listening to her and being there for her. She did not know how to give the support I needed. Someday's I just wanted her to ask me how I was feeling or how my day was going. It was as if she completely blocked out what happened to me.
I agree with Gary, I think for alot of people it is a "mortallity check".
It is times such as these that you do find out who your true friends are.
I have someone like Kate in my life and I am truely blessed.
take care,
matti
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matti,
thank you hun. We are truly lucky to have people like Kate in our lives. :)
Phyl
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I tend to agree...when you go through something like this you truly find out who your good friends are. Most people can't relate and want to stay in their rose colored happy go lucky world where nothing bad touches them. I prefer to be a realist and deal with all aspects of life. Does make for some lonely weekends though.
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Dear phillis , so sorry that you are having trouble this is the last thing that you needed to hear I know .. When I found out ,My family have dis owned me.. they wont call holidays are a dud.. so believe me you know what we are all going threw.. writ eme anytime ...lmurray69@hotmail.com
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My step sisters made fun of me at thanksgiving because I couldn't hear and my hair was short. It was all I could do to sit there and not flip out...
lmurray69 we need to plan the holdiays together so we can have fun!
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Imurray and battyprincess - As I sit here and read your posts, I am crying. I am so sorry that you were both treated in such a horrible and unforgivable way.
My home is always open to you all and I would be honored to share my table with you.
matti
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Thanks for bringing this particular subject into the light.  I was thinking I was being too critical and or depressed when my own mother didn't show up at the hospital the day of my surgery, then never came to visit while I was in the hospital.  Same thing with my "best friend", she called, but never came to see me.  She told me she didn't want to bother me......
Why are people like this????? >:(
Kathleen
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It has been my experience that a health crisis really tests relationships(be it family/friends/co-workers/spouces/in-laws etc). and I certainly have had a great deal of experience in "loosing" people due to THIER inability to deal with MY illness. I moarn the losses in some cases and in others I don't miss them all, in the end I don't need them but it certainly hurts to come to terms that who you thought you were important to your "not important enough". When the orginal tumor hit I lost a bunch, there were those who couldn't deal with the "after me" and those I couldn't deal with once I had change post-op (I did change), then there's my family members that I have remained attached to but who just don't "get it" and frustrate the heck outta me but what can ya do thier family (sister and brother). I have gotten that the only people I KNOW will always be there is my husband, children and parents....all others may or may not and I try my best not to be too attached to them....sounds sad but is what has happened.
Kathleen
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lmurray and batty-one. I'm only going to share this with you once and you all better hold me to it. I maintain open door policy at my home at ALL times.... and you, my dears, are ALWAYS welcome. :-* (as is anyone else on this board!)
I can't remember which post it was recently, but it was a reply back to a post I did... I was reminded that I was now a part of a "new family" (gawd, I wish I could remember who said that to me) and you know what? They are on the money! You all have welcomed me beyond any imagination. You all have tolerated my *coff* humor, my questions, my ramblings, etc. And, for that, I cannot thank you enough. (sorry Mark, had to say it one more time!)
In all that you all wrote, I sit back and think about those that have "stepped back" from my reality. So, if they choose to no longer be a part of my life, which obviously does include "my reality", then so be it. I am not mad, I am not bitter, I am just befuddled. For those that choose to remain in my life, including my new-found AN family, then gawd, you have NO idea how much you all are so welcomed into my home, my thoughts, my heart. I know, sounds mushy but.... it is spoken from the heart.
This thread was not meant to be a downer and if it has triggered some down feelings within you, then please accept my apology. But, I am a firm believer of the glass being 1/2 full and that in life, truly wonderful people, even those I've only "met" in writings or on the phone, will come my way. So, from the bottom of my heart, know that I appreciate you! I enjoy all of you! You all are in my thoughts, wishes and prayers and I thank my lucky stars for my new "extended family". :)
xoxo
Phyllis
(ok, now back to our regularly scheduled program! :) )
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Thought I’d jump in the conversation too…I’ve had a rough couple of days and it might help to vent :-)
How some so-called friends/family have handled my husband’s AN has been one of the most difficult things for me.
I was shocked to find that the very people I just knew would be there for us – haven’t even so much as acknowledged we are going through anything. One hasn’t said a single word. I’m still on her ‘email jokes’ distribution – but she hasn’t as much as acknowledged any of my emails that I’ve sent out on how Rob is doing – even after her husband ran into Rob at work (he works with both of us) and briefly mentioned it. She’s my SIL’s twin sister – so they have always been considered part of the family.
My cousin never said a word. Then I found out she learned at Christmas her mother had cancer. I sent her an email trying to comfort her – and to tell her I was here for her. She never even acknowledged she got it. I guess I could call her – but I’m still a little hurt and kind of feel like I’ve already been the one to make the first move. But I know down deep she’s going through a difficult time herself.
Four days after Rob’s surgery – my SIL called to tell me how upset she was that Rob’s parents didn’t call her daughter on her birthday the day before. Sorry - their son had just had brain surgery and they were a little pre-occupied! While I guess she might have a right to be a little upset – I CERTAINLY wasn’t the person she should have been complaining to. Where was she and Rob’s brother the 2 days before Rob’s surgery on his birthday – in Hawaii!!
So while yes – it’s hard for some people to cope – others are just too self absorbed with their own lives to consider anyone else.
Then there were those folks I didn’t expect much from – and to my surprise – they were there by my side in the waiting room through much of Rob’s 12-hour surgery.
My brother finally admitted during the surgery that he felt like an idiot because he had no idea how serious this was and he apologized. That meant more to me than anything. Finally – someone who believed what I was saying rather than making me feel like I was just being a drama queen when I would tell them what we might expect after the surgery.
So – rather than dwelling on the friends I thought I had and lost…I’m concentrating on the friends I never really considered true friends – but ended up being there the most for me. And of course those I knew would be there - and were!
If I've learned nothing through this experience - I've learned to not just 'think' of people - but let them know I'm thinking of them. A card - an email - a phone call - just acknowledge when someone is going through a difficult time means more than you ever realize - until you go through it yourself.
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Couldn't have said it better myself!
I've found out strangers are closer to me than my own family. Of course I've always been there to help them at thier times of need but I didn't even get a phone call from my step sisters (we've been together over 25 years). When my sister had surgery (minor) everyone flocked to her house with soup and cheer....No one even came to see me but my sister in law and she's the farthest one away. Put her up a several notches above the rest. One of my sisters just had a birthday and everyone of course went to her bday party...the only reason my son and I went was to see my brother and his wife and my niece. So sad but reality for me.
I feel much more closer to my cyber family than I do my own!
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battyPrincess - I always wanted a sister...Wanna be my cybersister?
matti
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I'm an only child with a VERY small family, and I am always looking to enlarge my "family", so anyone that wants to join me in that is IN!!! I value true friends as family for that reason. You guys all rock!!!!
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A wise friend of ours had told us at the onset of Chet's AN journey that among all of the people we both knew, that there would be six people that would be there for us. He also stated that not all would be the persons that I would expect. As it turns out 3 were on my list and 3 just stepped in. each filled a need and almost 8 years later I remain thankful to these people for choosing to walk with us during a difficult time.
We also learned that for those that turned away, it had less to do with us. As stated in others postings it's difficult for some to accept the reality of our mortality. For others it was dealing with there own personal fears, perhaps it brings them back to another time of personal loss or illness. For others it was the reality that as a couple we could not do the things together that we did before. Others are just insensitive. ( I bet we could start a long thread with a list of the most insensitive remarks made by so called friends) What i do know is that while we have lost friends, we have gained friends both within our community and the cyber community I am thankful for each person on this board, for the wisdom, compassion, understanding and just being there when answers are difficult to find. Blessings to all of you!
Raydean
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This is a good topic. Although I filed for divorce on the same day as I found out about my AN, one had nothing to do with the other. Long after everything was said and done, my mom made the statement that my "ex" wouldn't have dealt with my "impairments" well. I've had many back surgeries(getting ready for another) and he didn't deal with them well. I think someone hit the nail on the head when they said that most of the people that can't deal with someone else's serious illness are very needy people themselves. I found many, many true friends through the 7 months I went through recovery from surgery as well as my divorce.It's a very good thing we have this board! Since I live alone, and my children are busy with their lives, a computer with unknown fellow ANers have become good friends and the best source of support.Thanks Everybody!!! luv2teachsped
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awww you guys made me cry!
matti and Genny's mom you guys are now my oficial family!
Matti I've always wanted a sister that would treat me like a sister! I classify myself as the invisible one in my family. >:(
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BattyP - Now you are making me cry... I am so sorry that your family has made you feel that way. You have been through way too much. We will always be here for you, you're not invisible.
I think you MUST be my long lost twin sister... we're both addicted to reality tv, enjoy the same eye candy, and we are both pirate wenches that had left sided AN's and oh ya, the chocolate thing too!
I'll do the sisterly thing and Yes! I will share Sean with you. ;)
matti
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I have four sisters. Two older, two younger. One of my older sisters, my mom and dad came to be with me last year during my surgery. My sister Debbie, never left my side during my stay at the hospital and in rehab. She stayed with me until I went to bed at night, and sometimes was there before I woke up the next morning. She went to all my physical and occupational therapy appts. The nurses knew her almost as well as they knew me. She did alot of things for me during my stay in the hospital, that I am not sure I could have done had our roles been reversed. I cannot believe how wonderful and supportive she has been and continues to be. She even came back for another two weeks in June when I had surgery for a CSF leak. When I came out of surgery she was there. She lives in Tennessee and I live in Minnesota. When we were growing up we hated each other, we fought like cats and dogs. We couldn't stand each other. We are only 15 months apart. Once we became adults and matured a little we have gotten closer. My parents also live in Tennessee, I knew they would not hesitate to come. It was hard though because my Dad has dementia and he kept asking my mom who was having surgery and why. I have seen my parents twice since my initial surgery and he asks me who hit me, because he can't remember I had an AN. It is very sad. My younger sisters have not called nor do they call and check on my progress. My second to the youngest sister Dee, she calls, but only talks about herself, she doesn't even ask how I am, just goes into what is happening with her. My baby sister doesn't call at all.
I know this was a shock to everyone in my family and to my friends. But I also have friends that i thought would be there for me and haven't and I have some friends who I never would have thought would be so great. My best friend and I have gotten together twice since my surgery. She has no time for me. I am not trying to have a pity party. It really bothers me and I feel that if I looked like my old normal and not my new normal, she would make time for me.
I guess what i am trying to say is human nature is so unpredictable and its sad that we have to have a crisis in our lives to find out who is and will be there for us.
Denise
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Hi All,
I have been following this post with interest. I found my AN in Oct 2005 by accident, and have since had treatment. After the inital shock of being told about my tumor - most family and friends went on with life as usual. Most thought it wasn't a big deal because it could be treated and wasn't cancerous. Some became mildly interested again when it was time for my CK treatments. But most didn't remember when exactly I was having it. And now they assume I am "cured". Hopefully they are right. I think they just don't understand. I think they hold on to the security of "it can be treated" and move on. So I have decided not to go to them for support - I come here instead. Where everyone understands. I would by lying if I said I wasn't disappointed by some of my family and friends but all of this has taught me who I can trust to be there for me.
So I am thankful for all of you and your stories - they have gotten me through some hard days, weeks, months. :-*
Wishing you all the very best! Suz
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I'm thinking we need one big &^% gitls night out! We sure deserve it!
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I find this to be an interesting topic. My experiences with friends and family have been mostly positive. I only found my AN because of a slight hearing problem. My doctor called me after the MRI and told me that I had a benign brain tumor. My first thought was what do I do about it? My husband has been my biggest support in all of this. My family has been really great. My sister and her husband came to the hospital with me. They camped nearby (in the city) and that gave my husband a place to stay. In the beginning because of my facial paralysis my sister was the only one who could understand me. My brother in law ended up staying for my whole hospital stay, even after my sister had to go back to work. When I returned home, my other sister came to stay with me for a couple of days. Then my mom spent a week staying with me. I also had a lot of support from friends at work. They accepted me back, even with my crooked smile. I really appreciate the fact that they still treated me as a fellow teacher and not as someone with a problem. I thought that I would have a lot of support from friends and family and I was lucky enough to get it. Now I feel really bad that I wasn't there more for my sister when she was going through radiation and chemo 18 years ago. She actually had a chance of dying. I never knew how serious it was.
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I'm adopting Jean's family!
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I really do feel as if our experiences have been most positive, too. When my husband was diagnosed and our minister announced it briefly at church, people sent us cards. We kept all of the cards. They offered to help with our kids -- people we didn't even know!! Our Sunday school class collected $400 and gave it to us the day before we left for the hospital. That made me bawl like a baby!!! It wasn't needed, but it was nice, and it helped cover all my lodging expenses during the week at Duke. Most of these people, we don't even know all that well. Our neighbor mowed the lawn. My husband's mom, who is good with kids, kept our kids for a week and my parents and hubby's dad came to the hospital and supported me. OUr minister came to the hospital, too, and waited with me during the 12-hour wait -- he left for the 3-hour drive home at 10 p.m., even though I told him he could go home earlier, as I knew he was tired and he's also a diabetic!!!!! The church developed an e-mail system to provide daily updates to everyone about Ken's condition!! Our siblings had to work and couldn't be there, but we were constantly in touch by phone. My cell phone was beeping like crazy the whole week with people calling me. When my hubby was sick after discharge and we moved into a hotel for a few days, one member offered to FLY HIS PLANE UP and fly my husband home so he could avoid the 3-hour car ride!!!!!! In the end it wasn't necessary, but I was FLOORED just FLOORED. Several people made the 3-hour drive to the hospital to visit us, and others called regularly. They brought us food for a long time, too. Even now, I still see people who ask about him and how he's doing -- just this morning at the gym, someone asked me about my husband and how he is. I think part of the thing if people are insensitive is they don't really understand the seriousness. They think it's benign and treatable, so you'll be OK. When I told my best friend why the surgery was serious (delicate nerves, sticky tumor, brain stem involvement) she immediately become more concerned. She said, I had no idea, I thought they just cut him open and the tumor would pop out. It is very complicated, and people really don't understand everything. Still, I thought our experience with support was the most amazing thing I"ve ever been through and I will never, ever forget it. I still take the cards we got out and look at them and think how great people were to us. :)
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I feel I should respond with our positive experiences too – most were wonderful.. We had hundreds of cards, letters and prayer chains from churches everywhere. We had so many prayers from people literally coast to coast – from people I didn’t even know - I know that played a huge part in my husband’s outcome
During the 12-hours surgery – it was like a family reunion in the waiting room – at one point there were at least 20 people from our family there. I spent most of the day during surgery either answering our cell phones or sending text messages to tons of folks giving them updates.
Two ladies that use to work with Rob’s aunt (we didn’t know them) drove the 3 hrs (turned into 6 hr drive after getting stuck in traffic) to drop off a huge laundry basket of goodies for us while we were waiting. They just dropped it off – said hi and returned for the 3 hrs drive home. Although I had been strong the entire time – and I didn’t even know them – I just hugged her and cried. Complete strangers doing something like that was very touching!
Our Sunday school class brought dinner over several times during the next week and our preacher (who is brand new – and hadn’t even meet us before) came twice to the hospital, along with several of our friends. The night before we were going home – our dear friends brought me a bottle of my favorite wine to the hospital – just for me.
So – we had wonderful support and I’m very grateful. While there were a couple of people I expected more from – it’s just one of those life lessons. It’s not like this was the first time they didn't quite live up to my expectations….so I’ve learned that maybe my expectations of them are too high.
We are very blessed to have a very close family – on both sides – and neither of us could have made it through this without them.
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Some touching and sad stories in this thread.
I am pretty lucky with a very supportive family and friends. Although i must say, some of my so called friends are really now in the acquaintence category.
My younger daughter who is now 20 (well in 2 weeks anyway) has Bulimia which is a rather serious illness in its own right. She is fighting it very hard and she is a wonderful support to me. She puts her own issues aside for mine which i find hard to handle sometimes coz I know what she is going through. I am a fairly private person and don't like my medical issues to be the centre of discussion so i move on from it fairly quickly. Although when those headaches come on, its pretty hard to disguise.
I must also add though, its through the tough times like having an AN, where you really find out who your friends and "true family" are. I classify a true friend as someone that will go out of their way to help you.
Anyway, this Cyber family is pretty special to me and I feel very privaledged to be part of it (excusing the main reason for having to join it of course).
Larry
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My AN journey has been filled with many positives. My friends and family were very supportive during my decision making process.
The day before we left to go to the hospital our church blessed us with a love offering.Our pastor, my parents, my mother in law,my brother, his girlfriend, 2 sister in laws, a neice, my children and granddaughter drove the four hours to the hospital for my surgery.My sister came the next day and stayed until I came home. I am very blessed!!!
I was readmitted to the hospital for meningitis and my family stayed with me around the clock. My first hospital stay was for 6 days and the next was for 10. After two weeks my husband returned to work. He works at night but my family stayed with me at night for 6 weeks. They also prepared meals for us during that time.
We received many cards and calls during this time. My Sunday school class made cards for me and my sister put them up in each hospital room I was in. I met a wonderful doctor during this difficult time. Dr. Calvin Cunningham.He is my primary doctor and he has been wonderful. He continues to check on me.God has placed many special people along this journey and I will be forever grateful.This has been my first experience with support from cyber friends but you guys are great and have really been there for me. You will never know how special you are.Thanks!!!
Lynn
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I have to admit that the "lonely" feeling has been of late for me but I know I am certainly not "alone" (ah, there is a true difference between the 2!). My phones and such may be quiet at home, but knowing you all are here, well, hell... I am FAR from alone! I can't thank you all enough!
Phyl :)
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Strangely, I see the disappearances of those people as a blessing in disguise...there were only a few. I had to ask myself, are they really my true friends? I thought they were until this happened and then I was forced to realize they were not. People have difficulty confronting illness/mortality- the interesting thing for me was that my best friend had the most fear of all things hospital...and she NEVER left my side- even for blood draws (she's a fainter)...she stood through it. The best part...so many people came out of the woodwork in support, the caring was incredible. I now know my TRUE friends...I wish the best of luck to those that disappeared on me, I wouldn't want them around anyway.
Almost two years post-op and I see more positives from the experience than negatives. Don't get me wrong, I NEVER want to have to do it again...but I can look at all the changes, friends and life directions as extremely good.
Best wishes to all of you,
Rory
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I had the same thing happen to me. A man I had been seeing made it clear we were just friends (although I never heard another word from him other than the occasional HI if I saw him at lunch).
Certain relatives who I believed I was close to never contacted me once during my recovery and some friends expected me to do all the work to keep the relationship going. They never visited or called to see how I was - they called so I could help them with their problems.
HOWEVER, I received support from people I barely knew or from whom I least expected. They became such blessings in my life. For example, clients from my office sent cards, plants, called, etc. Friends of my parents sent cards. And, women I was in college with at the time became a constant source of support and encouragement. I was also blessed to have one of my sisters and one of my friends go through the entire ordeal with me - no matter how bad it got.
The blessing far outweighed what I lost and I have become a better person because of it.
Jules
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I had to share with you all what I did today.
There was a "friend" in my life for over 20 years... we've been through so much together in that time.
Last year when I got my AN diagnosis, I told her in person what was going on. Now, understand that when a friend is in crisis mode, she is always the first to jump in, lend a hand, take control of the minute things to off-load the person in crisis.
Not a phone call.. nothing. I tell her and not a word.
Anyway, we sent each other holiday cards in December. Nice.... still no phone calls. Now, should I feel guilty about not picking up the phone sooner? Mebbe.
Anyway, I've stopped by her place of employment (retail store) many times over the past months but never caught her there. So, today, I try again. She's there.
Someone goes to get her for me... she comes out and sees me... minor smile. I go to her and give her a BIG hug, tell her how much I have missed her. She proceeds to tell me that she has called (has all 5 of my phone numbers but never got a message or "missed call" from her). She said she sent email... no emails rec'd. Many here have learned about me is that I always answer my phone.. and if buisy, I explain and always call back. I always call back.
Her son is there. Now, I've known him since he was 3 years old.. .he's now in his late 20's. He sees me, BIG old hug, kisses, etc. He sees me with my cane for the very first time.. asks how I am. I ask him if his mom told him, he knows nothing. Seems he has moved out of his folks home. I give him my business card and ask him to call sometime. I'll take him to dinner. He's always, always been dear to me.
She says the phone calls go both ways. I agree with her. I ask about her mum (who I've been VERY close to over the years) and she proceeds to tell me about her recent health issues. I ask about her husband and work... not a question back to me about me. I give her my card with all updated info (phone, mobile numbers, emails, etc). I hug her tight again, tell her how much I have missed her. The hug truly wasn't reciprocated.
I'm hurt. Just hurt... but I'll live.
I know that I tried. I know that I was sincere with her. If I never hear again, I know now I have closure as I tried my best to reach out.ÂÂ
It's ok... I'll be fine... it just hurts. Tomorrow is a new day.
Phyl
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I was pretty much left for dead by some people I thought were friends. I still have a hard time believing people could be like that. The crazy thing is, after everything I went through, I was and still am in better physical condition than they'll ever be in! Wow........
Paul
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Phyl,
Admire you for putting yourself out there. Takes alot of courage to reachout to those who have seemed to disappeared for whatever reason. I haven't know you very long but you are an absolute sweetheart. Your "friend" should be ashamed of herself. She should be lucky to have you and I am certain someday she will realize it.
Chin up! :-*
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I understand your pain. I went through something very similar a couple of years ago. Still hurts when I think about it all. Some things we will never really know the answers to. Maybe your friend was caught off guard today...who knows, but hopefully she will think about your visit today and realize what she is losing. You are a such wonderful person Phyl and most people would not have done what you did today, they would have written her off long ago. Your friend has to see by your visit how important she is to you.
I think she knows she dropped the ball from the beginning, the deeper you get into something, the harder it is to get out.
Phyl I really think you have given it all you can at this point. I am so sorry this has happend to you, you have been through way too much this year.
Take care and hugs to you
Cheryl
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It is human nature.
"Laugh and the world laughs with you,
Weep and you weep alone,
for the world must borrow its mirth,
but has problems enough of its own."
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thanks all for the nice words... I recently tried the same with phone messages with another friend of over 15 years.... Kate (my best friend) sees her on occassion. Told Kate I've left a couple of phone messages and no call backs. Kate can't figure it either. Oh, well. I've tried, I have to admit that I cried myself to sleep last night. I guess it's all part of the "mourning" process of when you lose (what you think to be) important folks in your life. But, hey... it's another day, my CB called me first thing to say good morning and the sun is bright here in Boston. I'll take it! :)
You all rawk and your words are TRULY appreciated. Onward and upward!
xoxoxoo to you all!
Phyl
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Being a "victim" of other peoples thoughtlessness sucks and you just released yourself from that role--Bravo Phyll. Don't think you have that "victim" role in your psychological repertoir at all. Lots of people don't know about releasing themselves from that role. You are definitely a survivor, not a victim!
Hugs and Kissies
Capt Deb 8)
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thanks our fearless Pirate Wench! I really do appreciate it... doing better today and just moving on.. all I can do, right?
xoxoxoxox
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YIKES!!!!
I just joined the ranks of the Superwenches, Phyll and Batty!!! I AM NOW A HERO!!!!! ;D ;D ;D
Capt Deb ;D
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Yeah Capt Deb...quick someone order more super wench super spandex!
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Do we have to bow or something now?
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Lar..on your knees!
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I know that this is off topic of this thread, but it brings up memories of my best friend.  I was lucky enough to have Marlinda for a best friend for 15 years, wasn't anything we couldn't share, and together we were  both stronger then we were individually. truthfully she was closer to me, then family members, she was a sister of my heart. She was a amazing lady and I was blessed to have her as a friend. Marlinda was a nurse so over the years I knew i always could count on her to stear me in the right direction when health issues would come up.
2 weeks before discovery of the tumor Marlinda unexpectedly died.  She had this syndrome thing and over the years it had tossed all of the worse things it was capable of at Marlinda, from heart, vision, blood clot to the brain and she bounced back, like I said she was amazing. ÂÂ
There's never a good time to say good bye to a friend and her death touched me deeply.  2 weeks after her death we heard the words  'My God, he has a large mass"  I know she was with me in spirit, but I can't tell you how much I missed her during those early days of Chet's  AN journey.  Eight years later I still miss her.  I'm lucky, I still catch glimpses of her when I see her son who grew up to be  just like his Mom, a wonderful person.
Best to all
Raydean
ÂÂ
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More like genuflect.
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Raydean,
Really sorry to hear that. What kind of tumor was it? Was it an A.N.?
Paul
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Hi Paul
My husband's tumor was 6cm AN accompanied by advanced hydrocepahus. Was immediately hospitalized with placement of the vp shunt, followed by tumor surgery 6 days later. In reading your posts Chet shares a similar AN journey as yours. Since Chet had prior existing tumor side hearing loss dating back to childhood and was in extremely good health in the time period leading up to the accident 6 weeks prior to discovery of the tumor and the fact that we live in a very rural area and this was just a GP doctor talking as he viewed the scans for the first time in front of us, it was unknown at the time as to the exact type of tumor.
By sharing the above post i wanted to remind everyone to be thankful for the friends they have, especially for the ones that stayed with them as the moved forward with the AN. I was blessed to have Marlinda as a friend, and missed her beyond words. I was so lucky to have her as a friend. Someday ,I'll catch up with her. There were days when I would of given anything to have her here. Can't tell you how many times i picked up the phone to call.
Best to you
Raydean
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Raydean,
Thanks so much for the response!
How is Chet doing today? I was wondering, also, what kind of growth did Marlinda have? Was it also an A.N.?
Paul
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Oh......she didn't have a growth like we had. It was something else? It was Chet who had the A.N. - and yes we do have a lot in common!!
Paul
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Raydean
Thank you hun. I am so so sorry to hear of your loss and know how very much you must miss her. Sending you huggles for those times you think back with fond memories and smile in your heart.
xo
Phyl
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well, this post has not been touched in almost 1 year (to the day).. and the cycle continues... just received contact from one that disappeared from my life after finding out about my AN and all I go through.. and once again, she is trying to clear her conscience as she is leaving the state for other whereabouts..... and once again, my emotions are roller coaster for each time someone does this to me. I've decided not to ride this roller coaster again as life must move forward and I refuse to let others drag me back down.
I feel this is an important topic, especially for the newly diagnosed, as this is very much a reality for many of us.. not just for AN'ers but anyone confronted by life-changing illness.
I had to dig deep today to regain my mental strength as this cycle happened again, by one I wrote about in this post a long time ago... I still do not understand why they do this... as I may never have my answer to it... but I know I'm stronger now and can move forward...
thanks for letting me share this with you all again. For the newbies reading this... many wonderful insights here, in case you need it. My hope is that you don't.
Phyl
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I see it as those that claimed to be friends and leave :::poof:::: when there is something wrong with YOU. Weren't there for you to begin with. They were they for themselves. The idea of having to nuture, support, care for another human being outside of themselves is way to far fetch. It is sad and hurtful, but mostly I think they just do not know how to care give.
True friends will share, support, nuture, love and care.... they will be there YEAH for Friends!!!!! TRUE FRIENDS
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Hi Phyll,
I think this topic is one that is hard for us to talk about? Maybe that's why it was lying fallow for this time?
I don't like to think about the "friends" who disappeared over my health issues. It's sad thinking really. No matter how true the "disappearances" are....
Like a death without a funeral probably. (the lost "friendship")... what to do with it....
Move on....
My first serious health issue left me in a wheelchair, with questions about when I would walk again. I was engaged at the time. He walked. ( he had lost a bro to MS and his dad in the six months prior to my situation, and he himself had a heart attack two weeks after his brother died.)
I moved on.
Friends, co -workers too, dropped off a year and a half later after my viral attack which left me with vesitibular problems. And, yes, as already mentioned in this thread, i later found out it was a fear of "catching" something. )and look what happened to me already that's so "rare" was the thinking by them).
A few more health issues grabbed me and I saw even fewer who hung in there and "stayed friends". Oh I was out of that wheelchair by then and had forged a few precious friendships that were new.
Then I got the An diagnosis... and in the midst of fledgling-making some more new friends, I actually told about my An ( in my mind it was like oh , I have a diagnosis and we can do something about this one)... well, the "friendships were too new perhaps.... i haven't heard from them beyond the first call or two once they knew about my An....
Through all this I have one friend of a few decades who is still around. The rest are new. Some from sites like this. Rays of light in my stumbling in the darkness.
So despite disappointments, we move on.
Make a new life.
And move through whatever pain we experience and look forward.
Life improves and so do friendships. Sometimes from unexpected places.
Hugs all,
W.
Hi all,
I've seen this slightly discussed around here in some other threads. I've discussed this with family, coworkers and some friends/acquaintances. I figured that this would be a good topic of conversation....so, here goes.
Why is it that when some in your life find out what is going on physically with you, they disappear from your life?
Example:
-A man I was dating for almost 2 years found out last May of my AN. Boom... never heard from him again.
-A dear friend of over 20 years was told last May. Now, she's always the one to hear of an illness, jumps right in, always there. I tell her about me... boom, no phone calls, nothing. Did get a holiday card from her in December, but nothing more.
My best friend of over 40 years (Kate) and I were discussing it in the car yesterday. She reminded me that she will ALWAYS be there for me. (you have no idea the tears I shed when she said that). A coworker and I discussed it this am. My coworker couldn't understand why people would do that? Her comment was... were they scared that we would "infect" them or are they that heartless? My only comment to her was... "well, I guess it's all part of human nature". I have no clue if I'm right or wrong on that but, I wanted to throw this all out at you.
Some of the folks here and I have also discussed this and what an isolating feeling when someone we always held as dear in our lives, does this to us.
Are many of you in the same shoes as this? Do you find that others (in your private lives) have disappeared or when you try to call or such, don't even both to return the call or check up on you? How do you deal with it?
I know this doesn't just apply to AN patients but cancer patients, etc as well. Has always been a sore spot with me that folks will do this but just trying to understand the human nature behind this kind of action.
Phyllis
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you all rawk.. and I thank you so very much for sharing your thoughts on this... W, I am at a loss on what to say. Your journey mirrors mine in many ways and for you... or anyone here... if I could take away the let down that others have caused us, trust me... I would.
I told this person "Bye". I replied to her email that my past is done and I have moved forward. She tried to clear her conscience in her reply to me, but all I replied back was "Bye"... I think that last email of one word told her exactly how I felt... I'm hoping it wasn't too bitter a pill, but the bitter pill she gave me has discipated from my system and I have moved on.
I know this thread lay dormant for a while..... and sometimes, folks such as myself, need to vocalize these emotions as what this journey (or any other life changing illnesses) brings. I am so blessed you all are here and give of your shoulders and good ears.. and most of all, your hearts... as we band together, hand in hand while we endure this.
Yep, I am truly blessed.
Thanks again,
Phyl
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I think those that leave us weren't meant to walk along the same life's path as we're on; those that 'hang in there' thru the good, the bad, & the ugly are still on the same path as us - granted we experience different things even though we're on the same road, but those are the 'true family/friends'.... I wouldn't give them up for the world, I don't have to, they're the ones who stick by you & vice versa, still on the same road, whether smooth or bumpy. When I look at it this way, it doesn't hurt so bad; it is what it is, reality.
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SIGH! I read all the pages of this and the emotions came back. I too experienced the loss of people I thought would be there and shocked me when they turned their backs--not really though. My story is embarrasing to me, but when I think back over the years about the personality of these people I'm not surprised, just disappointed in myself for not wanting it to be true and never seeing it clearly.
I saw what my husband had known all along, I was in denial as it was family that showed their real colors. When I was diagnosed I did not hear from my father, mother or sister rather I heard from my husbands family and my two brothers--bless them! Before my surgery my father had emergency surgery, I was there to visit after as I was in school and had already used up my hours so had limited time to get away. Then my mother had her surgery for breast cancer, I was unable to be there the day of surgery, in school then, but called to wish her well on her special day and did arrive to stay at her home to cook, shop and clean for a few days. My sister and brother were there for her as they live down the street from my parents, I live 2 hours away from them.
A few weeks before my surgery we were at my parents for Christmas dinner and my sister loudly announced to everyone at the table how awful her life is...blah, blah, boyfriend, alone, blah, blah. My sister has a way of turning everyones attention to her. After her tirade I quietly said, "Yeah, life sucks then you get a brain tumor!" Brought the whole table to a screeching halt and back to perspective. Even after my statement no one talked about my upcoming surgery or asked how I felt about this. I, my husband, daughter, son and soon to be son-in-law (we put his photo on a dummy body and brought him with to meet the family as he was serving his time in Iraq) had a wry smile going on inside ourselves and shared our laughter on the car ride home.
Boy, I thought my statement would've got them to rally round me, but no. I did not receive phone calls from mom, dad or sister before surgery, after and still nothing when I returned home with a few weeks of PT under my belt! SIGH. I did get the phone call from my mom saying how wonderful it would be to see Flaminco dancing that was coming to my town, "Could you get tickets for me and you?" "Sure mom, but I won't be able to drive or walk properly in the dark." "What? You can't drive and why can't you walk in the dark? I was up and running around after my surgery?"...SIGH! Silently I say to this, "Okay mom you're right, you're stronger, it's all about you--NOT!"
A friend of mine, and I use the term lightly, couldn't even pick up the phone, but profusly apologized when I called her weeks later to say "Hi, how are you?". She managed to show up for a dinner party my girlfriend gave and sent me an invite to come to her Christmas party--I still don't get phone calls from her?! Yes, it's all about you too. Anyway, I am rambling and my point is, it hurts the same if they are family or friends that leave you. Now when I am around them I feel more in control of my life as I see them more clearly, I am liberated and not afraid to admit these are my parents and sister, they are self-centered and selfish. They need the attention more than I and that's why they are the way they are!
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Karen,
I'm sorry if this drudged up memories for you and thank you for sharing that with us (and taking the time to write it... as I'm sure it was difficult to do so).. and Nancyann is so right... as are you. In heinsight, I would not have done anything different, said anything different in the way I announced to my friends and family. I took all of their feelings and personalities into mind when I tried to figure out the best way to tell them (esp. my folks, when they found out a 2nd daughter had a brain tumor, although benign).
I didn't mean to bring up any bad memories... my hope in re-bumping this thread, for me, what to show that through this AN journey, we remain strong. We learn many things the hard way but in the end, we are stronger for it. I remain strong and hope that others will gain strength from this as well. Strength in numbers... well.. it just rawks :)
Phyl
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There was and is a very good reason you brought this subject up and I am glad. Funny how this made me feel better knowing we don't walk alone on our AN path and share many "things". Thank you Phyl. As I re-read the title ".....,do "they" leave your life?" well, no they don't, we do! Our paths went thata way! Never looked at it this way, hmmmmmm.
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I believe that some people come into our life for a season, a reason, or forever... We learn from them...and they learn from us...although the lessons may not be apparent at this time.
We were all meant to go through what we are now endouring, why...I don't know, but one day we will.
GM
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Ah, now I get it! I use to wonder if it was just me or should I say just my imagination. I broke my leg a month before my Facial Nerve surgery and the cards, phone calls, visits and offers of help came pouring in. Then I had the Facial Nerve Surgery and the attention I received diminished greatly even though the news of my tumor surgery came a week before I broke my leg. I always told myself that everyone rallied around me when I broke my leg and added a BIT of support when I had the Tumor surgery and then got back to their own lives. When I look back I think that most people are uneasy when it comes to dealing with cancer, tumors, MS, etc. but they can deal with broken legs, minor accidents, etc. I gave them an easy out, they were able to show support and concern over my leg and hoped it would also show they cared about me in general.
I read quite a few of the posts but nowhere near all of them in this thread, but from what I did read I can definitely identify with. Luckily for me I don't understand how your family could treat some of you the way they did. I was lucky, my Mom & Dad despite being divorced, both came to my surgery. My Mom who was in a wheelchair made certain that she got a ride to the hospital. My husbands parents were both there as were my 2 sisters and my husbands brother. My husband has 3 sisters as well, one called long distance to see how I was doing before the surgery, we had a really good caring talk. One sister came to see me and the other was busy with little ones. The part that bothered me was that they were all there for my surgery but my MOM (her caregiver brought her to the hospital) was the only one I saw or should I say "SAW" me after the surgery. (This is hard for me to write even after 15 years) I was really glad they were there for my surgery and understood that they had to get back to their jobs once they found out I was ok but where were the phone calls? Most lived 2 to 10 hours away from me. My Dad came to visit but that was it.
My brother called me when I broke my leg because he heard from a friend of his that I needed his support, the friend didn’t know about my leg just my tumor. When I told my brother about the tumor I didn’t hear from him again. He called me 6 months later on Christmas Day, I told him I didn’t want to talk to him, as he didn’t care enough to call me after my surgery. He said he called and the nurse said I was doing fine. I told him since he didn’t take the time to let ME know he cared about me then I wasn’t going to take the time to talk to him and when he decided if he truly cared about me he could call me again and I hung up. I didn’t talk to him for a few years, and then I decided to accept him as he is so I would feel better!
One very important thing we need to remember is that while we were or are going through a really rough time our family and friend’s lives continue and they have problems as well. A few days after my surgery one of my sisters told me about an accident she was in a week before my surgery. I didn’t get the whole story until about 10 years after my surgery. She was on the freeway going home after work when a guy in the oncoming lanes was going so fast he became airborne and crossed over the medium hit the car in front of my sisters and then flipped over so my sister could see his face as he flew past her, hit the back of her car and sheared of the bumper. For some unknown reason she was able to keep control of the car and pulled it off the road. When the police arrived they told her they had never seen someone walk away from an accident like she had. The others were severely injured but no one died.
Two days before my surgery my other sister found out that her husband was having an affair. She had spent the last two days crying her eyes out while her friends took care of her children. She pulled herself out of bed so she could be there for my surgery. That’s when I finally found out why neither of them brought my MOM to the hospital.
Karen, I’m so sorry that your Dad, Mom & sister weren’t there for you. You were there for your Dad & Mom so you did all you could. Hopefully one day they will be able to understand what you have gone through, if not, then as you say, you will continue to accept them as they are.
Your sister is like some of the people I work with, they complain about the little things. I worry a bit about the big things, getting another tumor, loosing the hearing in my other ear, having a bad “eye� day but the little things make me smile and laugh.
How is your son-in-law doing? Our youngest son was in Iraq in 2004-2005, we almost lost him do to Bacterial Meningitis he contracted there. He’s doing fine now.
Hang in there, Jill :)
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All of this information is so incredibly true about the lack of empathy and/or attention ,to us once diagnsed, treated and then suffer setbacks. I too have a family that was/is forever not present. Not one of them did an ounce of research for me(and they are all very well educated), none of them came for or after my radiosurgery. Not one of my "friends" who live in the same town came. And my ' best friend" here has never even offered to drive me anywhere, she has never once even offered to come and share a cup of tea. I guess she really never was my friend. One thing I have noted though is that cancer is treated much differently and I beleve this is true because there is a diagnosis, a treatment and an end to treatment, which is then celebrated by all family and friends. I have seen this way too many times. And I say that because people with brain tumors have many detours in the road to recovery and sometimes the recovery is difficult and incomplete. People like order and cancer has an order even if the last in order is death. People love to make dinners, drive kids, do errands, sit in chemo and radiation treatments believing that they are part of a successful treatment pool. But when it comes to a more chronic type of illness, disease, brain tumor etc. there is not a defining course and people are not comfortable with that, cannot get their arms around it and so do nothing! I turned 50 the week of my radiosurgery and not one person came to celebrate my birthday. Oh, they sent flowers but that was like a funeral, sharing a cake would have felt more like a celebration. I recently asked a "good friend" if she could meet me for coffee once a week and she tole me that maybe I needed a different kind of friend because seh didn't ahve time for that, although she doesn't work and her children are older. She wasn't really my friend and I had to address the issue and let her go. I heard that she just made chicken soup this week for a friend of ours who has cancer. Do you see what I mean? It is a sad truth. This being said I want to tell you that my real best friend who doesn't live in my town had a meningioma removed in January and I called her every day for several weeks, sent her cards, pajamas and food. I wanted her to feel how important she was to me, still is and always will be. She was my best friend at 12 and at 52 we are still best friends and if she lived in my town she and I would take a cabtogether to have coffee.
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I commend the ANA in recognizing this as an issue, as they are offering a workshop at the July Symposium dedicated to the Emotional Impact of an AN Diagnosis. I hope the speakers will note this in the discussions and will be interested to hear what they say about dealing with our diagnosis and how others around us deal with it (regardless if positive or negative).
Thank you all so very much for sharing this. It's good to know that we are not alone when running into this situation... and that we are all here for each other! :)
Phyl
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I thank you for this thread. If you are working it has got to be a little better than being on disability from surgery. I went back to work for about 8 months and had so many friends and business contacts while working and once I was put on disability, it all changed. Several long term friends of 20 + years are just now a yearly Christmas card. I have one friend of 36 years who sat with my wife through surgery (drove from Minnesota to Atlanta) and who has been a friend indeed. But until last year when he had a fall and a concussion and was confined to bed rest for two weeks, did he fully appreciate, (if any one can), what we go through. I figured the workforce friends just didn't know what to say after awhile. Today represents my 5 year anniversary since my surgery, and it is a difficult day, as I remember how good it was before to have balance, total hearing, no major head pain or headaches, and be part of a career. No longer.....all gone. The disability insurance company sent me through a FTC (functional capacity test) at the end of February and this Tuesday they have me seeing there "independent" doctor for evaluation. He is not a neurologist, not a pain managment specialist, not a neurosurgeon, no experience with AN, but a pshycotherapist to determine if I suffer from memory loss and cognitive skills, which I feel I do to some degree, especially short term memory loss and some normal skills I had before like retaining what I read. The phone rang the other night and I answered it and had a ten minute conversation. My wife came in from the office and asked who was on the phone..I told her I honestly could not remember the conversation or who had called. It took me about an hour of serious thinking to remember the conversation. It may be just the medications, hopefully I will find out more on Tuesday. The best to you all, while I don't post often, I read the forum often and feel there is a strong family because of what we or our families have been through with our AN experience.
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I have been following this thread for sometime. My AN was diagnosed in April 2005. For at least a week my co-workers were concerned. I was assured I could have all the time off I wanted to take care of this.
Now, everyone looks at me in a strange mannor if I need to go to the doctor. I haven't had time off for just myself in all of this time. Somehow more is expected of me just to prove I am OK.
My own mother told my cousin I was milking this for all it was worth. This because I didn't have surgery and the "thing" as she calls it is gone,never mind that I also have AIED and will lose all of my hearing at some point. I have never had a great relationship with my mother. I am an only chld and she needs me now and I just can't bring myself to overlook a lot of the thousand and one hurtful things she has done to me. I find I only have so much engergy and don't give it to people who drain me.
My best friend told me she would alway be there for me. If I ask for anything, like meeting me instead of me picking her up she can't be bothered. Now she is out of work and wants me to help her with her resume. Fat chance. We had a friend who had a heart transplant. This firend saw her 6 times in 2 years and then went to the funeral and hit on the womans husband. I kind of knew she would never be there for me.
A former friend that I had lost contact with found out and has really been there for me. She does not understand the deafness, she does understand the hurt. She even came to my house today to put in a fountain that I had bought.
I have found so many friends on this and the Cyberknfe site that I talk to and call, it is like I hve truly found honest true friends and we have a great bond and a lot of laughts.
I have always been a strong independent person and this is a blow to me. Even my sweet daughter can only admit that she was worried for a short while. She said she knew I would be OK. Great faith on her part I think. I sure didn't know that I would be OK> I read an article in a autoimmune mag. I think it was called "If you look so good why are you sick" all about illness that doesn't show.
I just came from a Home Deppt.. I ask if someone could carry out the pavers and put them in my suv. Everyone walked away. I was so furious I yelled "Brain Tumor here" I do have a ACLU attorney that has nothing to do and is looking for a cause. The manager was called. Poor man!!! I sure vented on him. He carred the pavers to my vehicle and ask if I really intened to pursue this. I just laughed. Let them wonder. There are some really funny things that come out and some hurts also.
I think this thread should be kept alive. It is not all bad, some very good things have come out of my journey. Venting is probably the best thing we can do. Saves the family and the few friends we might have left.
Sandy
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well, it seems to have happened again.... 2 that were in my life pre-AN diagnosis.... they find out about my diagnosis and *poof*. I called them both recently to say hellos.... one actually met me and my best friend for dinner.... one I got on the phone. Both tell me they think of me often.... both say they will always be there for me..... and again, *poof*... not another word. I just don't get it. I read what you all share here and I keep each response in mind while I deal with this.... each is right and there is no wrong answer. I think I give up trying to find out answers to this question. I guess it's just time (for me) to "deal" and move on... not that I'm trying to hold onto the past, but to try to understand why folks react this way.....
I just don't get it.
Phyl
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Phyl,
I'm sorry that happened to you again...that just sucks. You are fortunate in that you have dealt with a pretty large medical problem and have come out on top. Unfortunately, there are people out there that have not yet dealt with such a medical problem. Maybe they are afraid of they're reaction to it...so avoidance is their defense. This doesn't make it right. But, all you can do is try to understand their rudeness.
Keep being strong, positive, and know that you have a whole web site of people that will never leave you, or let you down. ;)
Gary
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Hi,
I find at work people can very cruel. I found out I had AN Oct 2006 after surgery. I still get unbearable headaches and some of my "young" (under 30) co-workers had a gay old time talking about me behind my back after I went home. I was back to work 2 weeks after I had surgery, for me to go home I was in an extreme amount of pain. I still need another surgery with a nerve graft. This is a great support joining this siteand informative!!
Anne Marie (Yardtick)
P.S. Anyone from the Toronto Canada area?
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Hi Anne Marie,
I saw your post and wanted to welcome you. Sorry to hear you have an An. I am near Toronto. Did you have An surgery last year and is this operation you mention now a nerve graft for the facial nerve? I myself had radiation treatment so I can't comment on surgery, but I know there are a few here who had surgery and also a nerve graft later ( Kathleen from To) so maybe they will see your post and answer too. If you haven't had an operation but are about to have it then i apologize. I wasn't sure from your post you see.
wishing you all the best, take care,
Windsong
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She wouldn't stand by me. She wouldn't fulfill her marital vows, BUT, she promises to come to my funeral, has a cemetery plot next to mine and wants to share a marker.
She will be Power of Attorney, BUT, she will not give up her married man with lots of money and empty rhetoric about her relationship to God and the church.
My ex wife, hypocrite... God knows and sees.
NF-2 and it's stressors, emotional, physical, and financial were too much for her to deal with.
NF-2er
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Hi Windsong,
I had surgery Fri Sept 6/06. The ENT went in because he thought my ear drum was bulging. Had a CT scan done early May and it showed the 3rd bone in my middle ear had thinned. He wasn't going to operate but I complained about the stabbing pain in my left ear and above the ear that shot across to my eye. The operation was suppose to be 1hr & 15mins, it was 3hrs & 30 mins long. I had a huge bruise in the middle of my chest from the facial monitor. Of course the nurses in recovery had no idea why the surgery was so long. One was actually nasty to me. I went home that afternoon on was back in the ENT's office Mon morning. He found a pulp like substance and it wiped out all the bones in my middle ear and my eardrum. He has something in there holding it together. Two weeks later he had the lab results in and I'm told it won't kill me but I have Scwann's. I had to research the internet to understand what was happening to me.
I had another CT scan early Dec and two MRI's within a week in early Jan. I was than referred to a neurosurgeon. This guy blow me away. He told me I have an Acoustic Neuroma, again it won't kill me, but it has to be removed. He said a lot to me and I don't remember everything. I'm seeing him again on Tues. It was the neurologist who told me more. The AN is on my facial nerve in a boney tunnel. At the time after the surgery it was 9mm. They are concerned about the room in the tunnel. All of the other cranial nerves run into this tunnel. I've had so much pain, numbness and fatigue and none of my DR's could explain why. I'm on tegratol and it has helped, but I still have really bas episodes of pain, numbness and dizziness
After reading most of the threads I now know it is a common complaint amoungst AN people. I have a list of questions for the neurosurgeon. I am prepared. If my husband cannnot get off of work my cousin will be attending the appointment with me. From what I remember from the first visit he said he wants to remove the facial nerve, graft another and give me a mini face lift. I was blown away. I'm 47 but I do not look it. God gave me great skin, and I've been fighting this old age thing tooth and nail. I know I'm vain. I know my health is more important. I've been thinking about getting a referral to the US. I live in Ontario Canada.
So that's my story.
Anne Marie
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I've been reading this thread, and find it quite interesting. Thought I'd add my 2 cents. (sorry I have not been active on the forum in quite a while) I had some of what you are describing happen but quite a bit of the opposite. I lended up letting go of who I thought was a dear friend because as you all have described, She couldn't/wouldn't deal. I ended up sending her a letter the week before surgery forgiving her, as I realized she is the type of person who it's always all about her and she clearly didn't have room withion her to be supportive to another because it would remove the drama focus from herself. Then my in-laws,upon hearing the news, offered to come help with the kids etc after surgery. We accepted their offer and planned that my folks would come the first 3 weeks and they would come for the second 2-3 weeks depending on how I was doing, mainly expecting I would need help with the kids by then. A few days before my surgery, they announced they had come acroww a great deal on a 28 day Mediteranian cruise and would be leaving the day of my surgery. But suggested after they returned 4 weeks later, and spend a week resting at home and then would need to visit their other grandson, they could come to help by mid November. (my surgery was end of Sept) My husband and I were so hurt and stunned, and then of course I became very angry, that I told them the crisis would be over by then, so no thanks. They proceeded to tell the rest of the family they had offered to help us but we refused. To this day, I do not forgive them for what they did to not so much me, but their son ad grand daughters who were counting on them.
But the upshot of this is..... The outpouring of support I got from my friends and aquaintences, and even people I didn';t know from the community was incredible. The days prior to the surgery was a steady flow of well wishers bringing little gifts and hugs of support, After a while It made me feel kind of weird, like they were coming to say goodby, just in case it may be the last time. I had a few of my closest friends at my side at the hospital along with my folks, and then after I got home, flowers from everyone the first few days, a few visitors as they didn't know if I was up to visiting yet. The meals started coming in and my mom asked them to hold off until she had to leave some 3 weeks later.Apparently they had set up a scheduel for meals to be brought. Once she went home, I had meals delivered every dnight for over a month. My husband got the kids ready and dropped them off at school every morning, but I had people picking them up everyday and bringing them home so he could geta full days in at work. They have 1/2 days at school on Fridays, so every Friday they were picked up and taken care of the rest of the afternoon. This kind of stuff went on for months. I later found out that a prayer chain had been set up and I had some 200 people praying at the same time for me and my doctors as I went into surgery. Thinking about this brings tears to my eyes as it di when it was going on. SO YOU SEE, NOT EVERYONE ABANDONS US.
But the most incredible supporter was a woman I only kew from seeing her around school. Her daughter was in my daughters class at the time. I had heard she had had a brain tumor some years before. I mentioned to her my diagnosis and inquired about her experience. Turns out she had had 2 craniotomy's 2 AN's (1 was regrowth) and 1 meniginoma. This womderful woman jumped right in as my biggest advocate and supporter. Some 2 1/2+ yrs later, she and I have never really become "close" friends, we run in different circles of friends, but we always stay in touch every few months or so. I try and chekc in with her as she has many problems from all her surgeries and gets fairly frequent MRI's. Unfortunately, She called me yesterday with some very bad news. She has 2 more tumors, opne on each side of her head. She ahs so much scar tissue, they mad go at it with radiation this time, but she is scared of loosing the hearing in her only good ear. Now it's my turn to be supportive for her. After going through all this I have found I am much more compassionate to others and find myself reaching out to people with medical issues. I have 3 new friends now who are battling breast cancer. I find we seem to find eachother. while sitting in the dentist chair recently, the assistant couldn't get the xray thing in my mouth, in explaining I had had brain surgery which cut throught the jaw muscle (middle fosa) I now couldn't open my mouth very wide. She immediately started telling me about her breast cancer, that her hair was a wig etc. It makes me look back on the how and the why, when I had heard through the grapevine this woman had had tumors, I never asked her how she was or reached out to her. Kind of like us, we look OK, so people just figure we are.
As someone else said here, I think it's just human nature to shy away from things that are uncomfortable, unless you have been through something like this, then it's easy to see the need for compassion and reach out to others.
Patti UT
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thanks for the understanding and kind words Bruce. I just looked over my post, guess I need to do a spell check to catch all my type errors. LOL
There is a book I was given by a friend after my surgery called "small Miricles" little short stories of fate and faith. One was about a little ole blind lady trying to cross a busy street. She waited until someone offered to help her across. While walking across, she discovered the man holding her arm helping her was also blind. It told how right when you need it, God will send you a "twin". I often thought the woman who came to my aid was my God Sent Twin. Time for me to be hers as she faces 2 new tumors. God Bless her. And all of you on this forum.
patti UT
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Hi,
I find at work people can very cruel. I found out I had AN Oct 2006 after surgery. I still get unbearable headaches and some of my "young" (under 30) co-workers had a gay old time talking about me behind my back after I went home. I was back to work 2 weeks after I had surgery, for me to go home I was in an extreme amount of pain. I still need another surgery with a nerve graft. This is a great support joining this siteand informative!!
Anne Marie (Yardtick)
P.S. Anyone from the Toronto Canada area?
I'm from Toronto. What nerve grafting are you having done? I have had a 7 to 12 as well as nerve taken from my leg used to repair my face? Who is doing this surgery?
Kathleen
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Hi Kathleen,
I'm seeing Dr Rutka at Toronto General. I have a facial neuroma.
How long was your surgery? How are you doing?
Anne Marie
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Hi Kathleen,
I'm seeing Dr Rutka at Toronto General. I have a facial neuroma.
How long was your surgery? How are you doing?
Anne Marie
Anne Marie: do you mean my first AN surgery? That was 15 or 16 hours and that was 18 years ago...... the surgery for the regrowth was only 5 hours (I think) and that was 3 years ago......
Kathleen
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Wow - a lot of Toronto area women on this board.
Interesting - I left a post for 'AMD' because she shares my initials - Kathleen Mc - you share the name and obviously similar last name (Mc) to my eldest. I do think you find similarities in the oddest places.
Kathleen - where was your surgery, ENT, neurosurgeon - it appears a few of the other gals all go to the same ENT practice as me (TGH).
*** on topic though, can't imagine anyone in my family leaving my life. I am sure my husband wants it gone gone gone so he would never need to hear about it or have to deal with hospitals - but obviously, that isn't going to happen
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one of the people I noted in the beginning of this thread tried to contact me.... I couldn't do it... I couldn't respond back. Is is fair of me to hold a "grudge" on this, after so long a time period or to try to find the goodness in one and let it go?
thoughts? Is it wrong of me to continue to hold the grudge after so long? I don't know if there is a true motive for her to try to reach me, other than to try to help cleanse her own soul/erase the self-guilt for treating me like she did....
I dunno.
Phyl
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Well Phyl, this person's behavior was bad enough to have caused the strife. So, do you want this person back in your life ?
Do you think it would be positive for you ? I have held grudges with a few, & would not want them in my life because of the
behavior, it just wouldn't be healthy for me - & keeping the grudge doesn't eat at me at all, I know it's the right decision.
Just give it a little thought, then decide. You will do the right thing for you.
Always good thoughts, Nancy
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One of the people I noted in the beginning of this thread tried to contact me.... I couldn't do it... I couldn't respond back. Is is fair of me to hold a "grudge" on this, after so long a time period or to try to find the goodness in one and let it go?
Thoughts? Is it wrong of me to continue to hold the grudge after so long? I don't know if there is a true motive for her to try to reach me, other than to try to help cleanse her own soul/erase the self-guilt for treating me like she did.... I dunno.
Phyl ~
Well, since you asked....of course you should let 'it' go but that doesn't mean you have to be this person's best friend, either. Simply being civil and polite (no snide remarks) is sufficient as a response. No need to say how much you missed them (unless you really did, which I doubt). Just that you hope they are well, etc. Any attempt by the person in question to re-open old 'wounds' should be cut off with the comment 'that was then, this is now' - and you don't intend to go back there. Be honest but do so with grace and civility, retaining control of the situation and not allowing this person to use your response as an opening to rehash old stuff or attempt to pretend it never happened and that you're both friends. You're acquaintances, at best and while I don't recommend dragging out old hurts, I don't expect you - or anyone in this kind of situation - to pretend to be this person's buddy and confidant. Keep it concise and civil, no more.
Jim
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Wow. How do I answer this one? And to Phyl, no less.
Sometimes, people learn too late that the path they were taking was not the one that leads to where they wanted to go. The path was the easy one, all down hill, no sharp turns. After a long while, they realize their mistake and turn around. Guess what. The path now is all uphill, with no alternate paths available. One of the uphill battles is having the courage to reach out to people who you (they) have hurt in the past. Yes, part of the motive may be to make themselves feel more at peace, but perhaps it's more than that. They can't make the journey back to the right path without re-tracing their previous path.
Phyl, maybe trying to put yourself in their shoes would help? Reach out to them and offer support and understanding. Forgive them for the past, and see what happens from there. At least then you will know you did what you could to reconcile. If you don't give them a chance, will you end up regretting it later, wondering if maybe you should have tried?
Ernie
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NancyAnn :-*, Jim and Ernie... truly.. thank you. Each one of you providing very appreciated insight. I have to give this thought...
thank you again!
Phyl
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I listened to a stress management person a little while ago and she provided a terrific example.
She referenced road rage and if someone cuts youoff or takes your park when you were first or doesn't like something you did, rather than acknowledge the swearing that they will do to you, respond by waving and saying "have a great day".
i did this the other day when a very angry guy tried to take my park and he swore black and blue at me. As it turns out he got a park nearby anyway and as we both approached the shop front he started yelling at me saying he's been driving around for 20 minutes etc etc (I'll exclude the words that would otherwise be censored). he was angry. Sio i responded in a calm voice and just told him that life is too short, enjoy the rest of the day there is so much to look forward to.
Granted it won't work all the time but if you are calm back, the other party will stop their ranting.
I guess Phyl, I'm saying, be at peace with yourself, try and make contact and move forward. All posties on this site have had past issues that we wouldn't like to go through again - we all need to look forward coz life is too short. Take the stress away from yourself.
Laz
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I haven't been on this thread in a while....it is a good one. I think this issue is prevalent in all of our lives at somepoint. It's sad,lonely..........very difficult. I have a mix of people that behave in similar ways....some are family, some are friends......some aquaintences etc. The ones I expected to "be there" aren't....ones I never expected are. Yesterday, I was blessed with special blessings. My neighbor of 38 years ( we live on acerage...in the country)called to say he hadn't seen me out for a few days..."was I okay?"( he lost his wife last year and suffers from serious heart ailment) I replied no I'm not. He got in his car....picked up my mail of 4 days and drove to a nearby smoothie place then drove to my home and delivered the stuff, carrying his oxygen bottle, in the hope it would help. It did....his caring was special. His ailments are far more serious than mine. When my husband died suddenly 14 years ago,he and his wife had 2 fried chikens,macaroni salad and a cake here in 2 hours. He has come to my aid sooooo many times to fix things, let me hook up to his water when my pump failed.....he has always been a gentleman....never infringing on neigbor to neighbor relationship. A friends husband is coming today to prune my roses....( suffering from severe back pain and complications himself) and another woman friend stopped by just to chat in the evening and see how I was doing. A VERY blessed day. Those that one wouldn't seem to care DO....those that one would expect to care DON"T. Sometimes it is shocking to see how self absorbed people are. It's my feeling that it is their issues that bind them to their behavior. We are so fortunately blessed to have this site and the love and sharing that goes on here. As Larry posted.....Life IS to short to waste 1 minute on anger..........Judy
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AMEN.
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Thank you for this post Phyl. Like you and everyone else here, I've been intrigued by this topic for along time. Really since my first cranial surgery happened and various family and so-called friends shifted their relationship away from me ----all while I desperately attempted to get to know the new me, making it doubly scary. I get it wasn't pretty and a bit traumatic to watch. Maybe its a bit like rubber necking on the road where folks want to know what up but don't exacty want to be involved in the wreckage and clean up. Its been full of disappointments for sure. Its ugly to find out 'our people' don't exactly care to invest what it takes to also get to know the new us. The mortality thing is certainly a factor. And maybe this economic crisis will soften some edges and help towards relationship building. I read somewhere we all are walking on a tightrope and a few of us are forced to look down! Perhaps its too scary to look down if you don't have to!
Its now been about 5 years since my initial crisis. (4 craniotomies in 7 months) At the point everything was so raw this issue was a really big deal and painful to me. Today I'm not bitter or full of grief like I was. A lot of healing has gone on. Still, I'm permanently changed by the experience. I've been forced to try to make sense of my own pain and now more easily connect and understand others pain whatever that might be.
At one point I was faced with re-kindling with a group of woman who seemed to consciously shift away from me during my crisis. In our reentry into one anothers lives I did not shame or blame for the past indifferences and made a real effort to re-connect. Unfortunately, I beleive because this group of individuals had not taken time to get to know the "new me" (deaf, chronic pain, less active at times) more then superficialy they made the mistake of categorizing me as a hyperchondriac etc. Oddly I did not discuss my health but of course I would have to ask them to repeat in a noisy restaurant etc. I believe this gave 'em an excuse or took them off the hook during the original situation. Its now been a year since I re-let go of this group of women I've known for 20 years.
Its not all sad. Out of ashes.....I've rebuilt my support network.
(I've gotta go, cont later)
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Hi Bridgie, I and I'm sure almost everyone else on this board can identify with what you have gone through. When you mentioned getting to know the new me, it really hit home. When I came home from the hospital my husband not being sure what to bring with us brought everything from the bowl I threw up in to the hanger & garmet bag I put my clothes in before surgery. About a month after my surgery when no one was home I went into the spare bedroom where he put everything from my surgery and started going through things. I had a cast on my leg from another surgery and was limited in what I could do so I decided to clean up the room. I soon found myself in tears as I broke/busted into small pieces everything from the hospital, last but not least I tore/cut up the garmet bag. That is where I hung up the old me, it was like burying the old me. Since then I have built a new me and as you say, I'm permanently changed. One of the bright spots as you have discovered is that we are more compassionate towards others.
I often wonder what I would be like if not for the surgery. How much of my personality has changed because of it and how much because I'm older. There are so many other major factors in my life that have influenced me too!
As for the others in your life, those that truly care will continue to be in your life no matter what happens to you. Some may falter for a while until they figure out how to deal with their feelings about what has happened to you but then they will be there for you. Those that can't understand what you have gone through can be replaced with those that can. Post more when you can, Jill
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I only want to say that I am glad this thread lives on and that others are gaining from what has been shared here.. and know that I continue to also gain from what has been shared here.... as I still try to come to grips with those that have disappeared in my life over time, since my diagnosis. thank you all for sharing what you do. Truly!
Phyl
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I was just diagnosed two weeks ago and I sent out an fyi email with some questions (Ie. anyone know anyone who has gone through this, etc) I have been overwhelmed by the responses. Friends of friends of friends including a dr. from Germany have sent me advice, referrals, etc. However, one of my closest friends (my maid of honor, no less) never called or replied to my email. I just spoke with her on the phone two days ago and she never even asked about it. All she did was talk about herself. Then I mentioned what I was dealing with after about fifteen minutes about talking about her (I kept waiting for her to say something) and she said she had no idea it was so serious. She said she thought it was nothing even though her husband had been telling her to call me everyday ....but she was busy (she was moving at the time so she was truly busy) but even so, she never read my email. I was VERY hurt and have really questioned our relationship. I have a feeling this journey is going to highlight a number of friendships that seem to be a bit lop-sided. I do believe that it isn't really a true friendship if they are not there for you in times like this but it still hurts alot.
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Hey NY newbie: Either your friend is quite self centered or she doesn't know how to respond to the bad news/ doesn't want to think of you with a serious situation.
In any case, it is what it is - you will find as time goes on who will be there for you through thick or thin, I did.
Always good thoughts, Nancy
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My problem seems to be the opposite. I'm avoiding others in my life, and that's not good! Now what? :-\
Unfortunately Cheri, unless you have a very dedicated, diplomatic and persistent friend or relative who simply won't accept your distancing actions, eventually, you're going to be pretty lonely. Most people won't push too hard if you indicate a lack of interest or desire to socialize with them. They'll simply 'cross you off their list' of available friends and move on to other people they want to socialize with. They'll tell others that "it's too bad Cheri has gotten so anti-social", and acquaintances will nod their assent and mummer "she's been through so much". Then they'll move on to other subjects. Anyone who is really concerned about you will hope you 'come out of it' but at some point, they'll just let you withdraw and accept that as your right. The reality is that everyone has their own problems and can't or won't spend a lot of time trying to draw out someone - even someone they like and care about - who doesn't seem to want to socialize anymore.
You know withdrawing isn't emotionally healthy. What to do? Well, it's pretty much on you, Cheri. Frankly, you have to make the first move. It doesn't have to be attending an 'event', like a party or big family dinner. Inviting a good friend that you know cares about you for a 'cup of coffee' (and some sharing on your part) is a good start. This can be done at a coffee house, restaurant or in your kitchen, where you might feel more comfortable. You can keep it light and short or stretch the 'cup of coffee' out to as long as the friend can stay and talk. The telephone is always a good tool to stay in touch. My wife uses it to great advantage when she doesn't feel like going out too see people. E-mail works, too. At least as a start. You can use the phone or e-mail to re-establish a connection to a friend or favorite relative and perhaps plan a low-key 'outing', like shopping or lunch. The point is that you have to reach out. Whether or not those you reach out to, respond, is up to them. Don't set unrealistic expectations and you stand less chance of being disappointed. Remember - everyone has their own problems they're dealing with. Of course, doing volunteer work (charity, church, school, arts center,, an AN support group, etc) is a great way to get out, meet folks with a shared interest and take your mind off of yourself for awhile, which we all need to do sometimes, no matter our situation. As you noted, avoiding other people in your life is never a good idea.
I don't mean to be presumptuous, Cheri. I'm no councilor and I have no idea if anything I've offered is even feasible for you or germane to your situation. Just a few practical thoughts that I wanted to send your way, Cheri. You seem like a vibrant person and I was dismayed to see you post that you're avoiding others in your life. I anticipate you changing that, soon. Of course, you have to take the first step. I hope you do.
Jim
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I am sorry some important people in your life have stepped back. I sympathize. After my surgery, I did not lose any friends or anyone else, in fact, seveal people i didn't know very well wanted to help, so they called or came by the house or made meals, etc. I do think that sometimes people feel awkward when someone they know has an illness or injury - they don't know quite what to do, or how they should help, or if the ailing person even wants help. Possibly they make think an AN is cancerous, so they may not know exactly what you need. I have probably let down some people over the years because they were ill or had family that was ill, but I was not sure if they wanted me to speak to them about it or to help, so I did nothing. That was probably a mistake. But sometimes it is hard to tell if someone else wants or needs support.
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That's been a huge part of my frustration. I 'look' just fine on the outside but people have no idea what's going on on the inside, even people who know about my AN journey.
Cheri (and others).
I know I've mentioned it a while back, in passing, but I'm going to suggest a book....
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor
http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product
My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.
Hang in there. Hugglez to you all!
Phyl
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Cheri,
Hoping it helps. I will note this... some of you may know that I was appointed by my town to the Commission for Disabilities. When I joined the commission, there was a lot of activity for those with "outward" disabilities and I had to remind them about those of us with "inward" disabilities (ie; hearing loss, chronic/dibilitating pain, etc) and am thrilled to see how much more they are recognizing it. To try to have others understand disabilities that are not on the outside is truly difficult, esp. when we can look "normal" to many, when they have no clue what is going on from within. My hope is that the book will help with an understanding of living with "hidden" disabilities and ways to address it. Let me know your thoughts on it if you do, by chance, read it.
Hang tough, m'dear!
xo
Phyl