lack of family support

[Katiedee]

I wonder how many people have found their family unable to deal with the AN and subsequent health issues.   In my case, I started to realize I was in trouble when I began to tell family members of the diagnoses and need for surgery.  I had a large AN pressing on the brain stem and causing ataxia and breathing issues.  I was falling quite a lot as my balance was shot, the last fall resulted in a concussion that got the MRI.  My sister in law, wrote an empassioned email to say "sin" is the cause of tumors and I needed to get right with God and then I never heard from her again. 

My daughter told me I was trying to guilt trip her by telling her about this and she did not return my calls, emails  I sent cheerful notes saying all would be fine, I just wanted to check in and she would not respond.  In fact, much later she irately told me "you are just sending those notes to guilt trip me"  I was not telling her of the suffering I was enduring only wishing her a merry Christmas.  In fact, she did not contact me before or for 6 months post surgery saying it was "too much" for her.  My oldest daughter, quit speaking to me and my middle daughter disappeared from contact as well.  My mother had such drama fits and badgered me stating "my life has been far harder than yours"  It wasn't a contest, but to her it was and having to be the center of attention, she resented me for having the tumor! 

They all completely abandoned me which left me to deal with this all by myself.  That was worse to me than the loss of my hearing, my balance, my graceful walk and big smile and the agony of why the emails were not returned and why no one bothered to call after my surgery and now even 7 months later.  This  has been worse than everything else I endured including the 14 hour surgery and the freakish looking face I was left with.

I can say in the end, that ultimately this was good for me because I was forced to reach out to friends.  There I did find some love and concern but it doesn't negate the grief of the loss of realizing you just don't matter.

[Kaybo]

Katiedee~
I am sorry that you had to endure all this from your family.  I CERTAINLY do not think that tumors are results of sin - we ALL sin everyday - if that were the case, everyone would be running around riddled with tumors!  Glad you were able to find your true friends and support!

K 

[sues1953]

Hi Katie

I hope I'm not posting you twice.  My first post disappeared.

Anyway I told you that it was pretty mean of your family to treat you the way they did but sometimes they don't
 not know how to react to someting as serious as this.

I found out about my tumor just before Christmas and boy did I feel like a downer.  I got through the holidays normally but every minute I was thinking BRAIN TUMOR.  People just don't like to talk about this stuff, especially at Christmas time.  I do have a sister, daughter, and brother (out of state) and of course my husband.  They don't bring it up unless I do but I make a point to fill them in and I know they will support any decisions I make.

I think we all go through the why me thing and I think personally that God is trying to get my attention ( I talk to him a lot more these days).  To be told that you are evil just because you have an illness is just wrong.  Anyone that would say that has their own issues with God.

I am glad that you found this forum because that is what we are here for.  It has been a tremendous help to me.

When did you have surgery?  How large was your tumor?  How are you doing now?

Please let us know.

Sue In Michigan

[Chitownpete]

There have been times friends did more for me than family. Sorry to hear of abandonment feelings you have. Your family will realize the error of their ways the only question is when. As far as your "Freak" sister in law is concerned, she is in worse shape overall than you are. Your sister in law has a mental disorder and those cant be fixed without a willing patient. I hope your sister-in-laws "God" doesn't invite me to his kingdom, they are beneath me in so many ways. Good luck to you.

[Lynn Mc]

Katiedee,

I am sad to hear you family responded in such a "BAD" way.  Sometimes it is really hard for them to understand what we are going through, although that is no excuse.  They will realize their mistakes sooner or later.  As far as your Sister-in-law, she is a bit off.  That is a ridicules statement on her part!!! 
I have actually found this forum  to be more support for me than my family sometimes.  At least everyone here really understands what is going on with us. 
Hang in there, it will get better.

Happy Trails,
Lynn

[leapyrtwins]

Sin is the cause of tumors 

Now there's one I haven't heard before 

Sorry you're having to deal with this sh*t Katiedee.

Hang tough and visit us often; we're here to support you.

Where are you from?  Perhaps there's a local ANA support group in your area or someone on the Forum you can connect with.

Jan

[Jim Scott]

Katie ~

Unfortunately, this is not the first time we've seen posts about family members reacting in bizarre ways after learning that another family member has been diagnosed with an acoustic neuroma and will be having surgery.  There have been dozens of messages relating to this phenomena but the reality is that there is no precise explanation for this type of behavior and the only option you really have is to surmount it as best you can.  However, it is , to be delicate, unsettling when family acts as if you've insulted them by being diagnosed with a benign brain tumor. My heart goes out to you in your despair but I'm encouraged by the fact that you've apparently moved on although not without emotional scarring, which is perfectly understandable. 

I'm not a psychiatrist but I can surmise (from your comments) that your family was somewhat dysfunctional well before your AN diagnosis, which is fairly typical.  Thus, their weird, sometimes hostile reactions are somewhat understandable, if not excusable.  Your mother is obviously somewhat of a narcissist and her reaction doesn't seem out of character, just selfish and wrong.  Your daughters seem to have some 'issues' with you that your AN diagnosis brought out in the worst way possible.  That is truly regrettable but somewhat beyond your control, even though you apparently tried to bridge the divide between you and your children.  Your sister-in-law is an idiot.  I state this as a Deacon in an evangelical church that doesn't sugar-coat sin issues.  When I was about to undergo my AN debulking surgery, 4 Elders from my church were at my side, praying for me.  Christians around the country prayed for me, thanks to my wife's connections with national Christian woman's groups that responded to her e-mails asking for prayer for me.  None of these Godly people ever said something as idiotic as your sister-in-law.  They certainly didn't believe that 'tumors are caused by sin'.  Sadly, those are the words of a person who is wildly misinformed on spiritual matters and totally irresponsible, to boot.  Ignore this person until they demonstrate they have regained control of their mental faculties. 

I'm very pleased and relieved to learn that you were able to overcome the hurtful, selfish reactions of your family by reaching out to friends.  That is a testament to your indomitable spirit and the goodness of your friends.  Of course you realize that having your family basically reject you because you dared to develop a brain tumor is disheartening, to put it mildly.   Who wouldn't feel bad in the face of that kind of self-centered rejection?  I would.  However, you are loved by God and of course, the many folks that frequent these ANA forums are completely on your side and eager to support you as you make you way back to normalcy.  Katie, know this, if nothing else: you do matter. 

Jim

[pjb]

So sorry for all that you are going through and never say you do not matter here at this forum you do matter and anytime you need to vent we are all here for you.

Best Wishes,

Pat

[saralynn143]

Katiedee - I have, unfortunately, come across people, like your sister-in-law, who are mistaken in their belief that illnesses are caused by sin. As a Christian, I have been taught that disease is a consequence of the original sin in the Garden of Eden. That however, is not the same as a punishment for individual sin.

There is a story in the Bible where the disciples ask Jesus if a man's blindness was caused by his sin or those of his parents. Jesus replied that it was not caused by sin, but that the glory of God might be displayed in his life. Then He cured the man.

I think Jesus knows better than your sister-in-law.

Sara

[petgroomer]

Katiedee:
I am very happy you have found support in your friends!!! 
My common-law (Still don't know what to call him) is very supportive.  I mean, just like Katie, he listens when I talk, he asks very few questions, but he is there for me.  It is really cute tho, as I leave my email open on purpose and in his own time, he reads any thing tumour related and learns that way.  He also reads my website I made for Vagal Schwannomas and learns about the schwannoma that way and my feelings and frusterations on my blogs.  Later during the day he'll say something like "I love you, I care about ur feelings and didn't know blahhh blahhhh blllaahhhh.  Don't think I am not there for you or think of you any differently"... BINGO, got my message through to him!
My family is very distant (I keep them that way), BUT my common-laws family is excellent!
My friends are amazing also and have even resourced their skills and talents to come up with a fund raiser should I need one.  We live up in cottage country on the lake, so most people up here are from Toronto or the States and come up here as a retreat.  They have alot to offer as in talent!  One being nominated for "Female Country Recording Artist" of the year on Country Music Awards.  She is amazing and willing to do a concert up here for me!  Most of the people I have met up here is because I groom their dogs.  Dogs are their family and since I take care of their family, they take care of me.
Here is the thing.. it is still a lonely road as far as knowledge.  Getting people to understand exactly what it is and how we deal with it is next to impossible.  What we go through on a daily basis they will never know.  Katiedee, the family here on ANAUSA site will never let you down.  Will always be here for you!  Best of all, they have been where you are and can empathize with anything . 
There is never an hour you are alone as this is world wide!!!

[G_Man]

Katiedee
     I'm sorry to hear about your family.  This type of behavior makes me so MADD!!!  Here is my GUESS on this.  It's not about GOD or SIN.  Usually when people act this way it's more about SELFISHNESS!!!  They are so afraid that they might have to stop living in their own little worlds and having their "good times" and help somebody.  The thought of taking someone to a hospital or even going to visit someone appals them.  They don't want to miss:
     *  The party
     *  The nail appointment
     *  Time at work
     *   A day's pay (God Forbid)
     *  Sitting in the house watching cartoons.
    ---  Whatever.
     It's awful and too familiar I might add.  Don't let it get you down.  You have friends who care about you.  They probably know you a lot better than your family does.
     Ask yourself this.  When you are with these family members is it all about THEM?  What they can get in a situation?  Where they went?  What they did?  How much they have?

Stay Strong.
G_Man

[michelle d.]

Hi Katie Family is tough-- sometimes, it's just best not to expect too much from them....I know it shouldn't be that way but people are sometimes caught up in their own worlds and can be cruel, not even realizing it. I don't think we realize what other people are going through until we go through something traumatic ourselves! I know for myself, having just come through AN surgery 3+ months ago, I'm more aware of other people's suffering everywhere I go, and I try to be more helpful.  As for the "sin" statement, I had something to add...I was helping to plan a spiritual retreat when I first learned about my AN and what my treatment would be. At one of the first teams together with other women who were helping, I asked one of the pastors if my recent diagnosis of AN was a result of sin. The pastor said no. Later on, a verse from the Bible came to me--it is where Jesus' disciples, after seeing a blind man asked him, "Rabbi, who sinned, this man or his parents?" Jesus' answer:"Neither this man nor his parents sinned but this happened so that the work of God might be displayed in his life."(John 9:1-3)   ....just something to think about...I guess people have always been confused about sin, even in Jesus day!   You will (and probably already have) found people that DO care and that WILL help, so try to be around those people more, if you can because it's good to have support. The people here in this forum are great--I don't really know any of them but when I read their letters, I feel like I do know them and I can tell that they do care and would do whatever they could to help. You don't say where you're from and that might help to get you to connected with some good tangible support, if you'd like that. Take care--stay in touch...michelle d.

[lori67]

Katiedee,

Welcome to the forum family!  If your sister-in-law, who, by the way, sounds like she's got a few screws loose herself, is right, then you're in good company with a whole bunch of sinners here!     Who knew?  Everyone seems so nice and kind around here!   

I have been fortunate that the majority of my family has been supportive and understanding.  Every now and then, even they need a gentle reminder of the fact that it was brain surgery I had, and not a manicure.  I think it's hard for them to accept the fact that I'm not exactly the way I was before.  For some reason, it bothers them more than it bothers me.  At any rate, I can't imagine how hard it must be to not have them there for you.  Perhaps the fear of losing you has caused them to step back a bit?

You've come to the right place though.  This family is big enough that you will always have plenty of people around you for support and encouragement.  Not quite the same as your real family, but at least you don't have to buy us all Christmas and birthday gifts!   

Stay strong!
Lori

[b91221b]

Hi, Katiedee...

I'm so sorry to hear about the abandonment of your family during a time when you need the encouragement of loved ones.  However... I believe not all members of my family understand just exactly what's going on.  Sometimes when I tell them what's happening that particular day, they just "don't get it".  Balance issues, hearing issues, tinnitus, emotional stuff...I find for me, that it's sometimes better to just keep it between myself and God.  Even my wonderful hubby doesn't fully understand, although he is very supportive.  The AN site has been the most helpful "family" of all, even though I only visit from time to time.  I have found more support, encouragement, and helpful information here than anywhere else.  When I think I am all alone out here, I connect with my AN family, and find much companionship.  Stay close to this group.  We truly DO understand.

As far as the "sin" is concerned, I stand in agreement with many of our AN family, that sometimes God uses different things to bring Glory to Himself in our lives.  The tumor is not caused by any individual "sin"...and God will help you through this time, as you lean on Him.