Moving toward Acceptance beyond Grief

[MDemisay]

To All of my AN friends,

It is here that we must finally come before we can let go of who we used to be and realize that if we slow down and get our bearings, and make some adjustments to our hurried lives, that there is a light at the end of the tunnel (that as much as we continue to suffer for what may seem  like a long time), there is hope.

If we (as a group )by posting and listening to each others suggestions about what to do next can actually help each other! Having the experience of having an AN is certainly frightening, having the blessing of having all of you to share the daily frustrations without being judged is something quite extraordinary!

As we all hopefully move beyond grief and into acceptance(each at our own pace), which I am acknowledging here is often frustrating and difficult, we may one day proceed toward treatment. Isn't that the goal?

I want to acknowledge  and be thankful for the many here who have helped me  through prayer and just by reading this......

I know that it maybe quite a while before the newbies get there, but each day gets a little brighter, I can assure you. I have traveled a long way since being diagnosed in the beginning of the summer of 2004. My grandmother died in the summer of 2004, quite unaware of the hell I was going through at the time!

Most of what I had found I stupidly ignored before then, let me tell you and reitterate to you that my operation in 2004 gave me everything I wanted up to and including being off balance and being SSD (Dr. Sisti went over all of this with me before the surgery) till 2012 when I discovered what many of you newbies are just now discovering that there is comfort,counsel and research galore in the ANA forum.

As most of us know here on the forum February through June 2012 were some of the longest months in my life until I finally decided to follow my gut which I am happy to say had been right all along!

Hoping that by reading this that you each move once more to a happier place.

Still waiting for signifigant changes beyond facial twinges so far!

Mike

[leapyrtwins]

Personally, the only thing I ever grieved in my entire AN Journey was the lost of my hearing - and that was until I got a BAHA.

Life is full of ups and downs, it wouldn't be life without them.

Jan

[MDemisay]

Jan,

Then you capture my point! In Elizabeth Kubler-Ross's steps one of the final steps in grief is acceptance. If you were at one point grieving a loss, you have moved beyond that now.

At one point in my AN journey (in 2004) I was saying why after so long 30 years (1974) does a brain operation have to happen to me again (I had another in 2004) and with my recent growth spurt in my AN (in 2011) I went through this again(a grieving period) on June 11 that period ended for me as I took an active role in giving Irv a massive jolt of radiation. I accepted what I had to do and did it.

Not without the good counsel and support I received here. I also wrote this post as answer and addendum to another post called Stages of Grief which appears in Cognitive/Emotional Issues section.

Mike

[jimbos]

How can you move toward acceptance when I lost my hearing and balance. I had a 12 hr surgery that took me 6-12 months to recover but I will never be the same. It has been 9 yrs. and I still have a small piece left in due to the location of the tumor that grows ever so slow. The last 3 yrs. I have had MRI"s done I been told I have white matter that spreads every MRI and I was I am more likely to have a stroke. I get headaches that are so bad I want to put my head on Ice. My wife always demeans me because I can't hear I am "retarded" now how is that for 33 yrs. of marriage. Yes I can't hear I have no direction as to where a sound is coming from. I had what they called failed back surgery with the cages and spinal stenosis from top lumbar spine to bottum. The pain gets so bad I sweet in pain when I walk. The Dr wanted to operate on my back again in NYC but what good is that I can't hear my life stinks I lost my life at the age of 44 due to my back then along came the tumor that was growing and big pushing on my brain stem I had to have a operation. Sometimes I wonder I have 3 beautiful kids not kids adults that are successful but my wife who I thought would stand by me laughs. what to do.

[Suu]

Hi Jimbos
You've got us! We know what you're going through and it's all normal.  From diagnosis to getting it out and then trying to move forward with our lives is all part of who we are today.
Our futures changed. Now we're trying to find our way in life and some of the people around us cannot possibly understand at times.
Have you sat with your wife and asked her for her support? She may not know what's going on as our feelings have sort of 'altered' and our perception of others sometimes changes and we forget that our loved ones can't read our gestures or our minds.
Maybe get her to read some of this forum to show her that your feelings are real and not imagined?

What you are living now, today, is your new normal.  The old you has gone and in his place is you. 
Please lean on us and ask us as many questions as you like and share your experience with us so people who come to this site will know that you are indeed very normal. 

Kindest and big hugs to you.

Suu ((((((()))))))

[leapyrtwins]

Jimbos -

sorry to hear you are struggling.

Have you considered something to aid your hearing - a TransEar, Sound Bite, BAHA, Phonak, hearing aid?  It might help you a lot.  I know I was miserable until I got a BAHA to help with my hearing.

Also, not to be harsh, but your wife needs a serious attitude adjustment.  Marriage counseling might be in order.  If that fails, which it sometimes does, you may want to consider divorce.  No one should be disrespected by their spouse and no doubt it's taking a toll on your children as well as you.

Everyone always says you should stay together for the children, but in some cases (more than you realize) it's better for the kids, as well as you, to be out of the situation.

I hope you don't think I'm being too forthright; I'm speaking from experience (although it was prior to my AN diagnosis). 

Jan

[skipg]

Jimbos,
I am sorry for the difficulty you are encountering. Mike and I are a rarity (according to the surgeon I consulted with) due to the AVM we both suffered years ago and now having to deal with this AN. He told me that it is almost a statistical impossibility. That made me feel better. NOT! My faith in God is strong and I never questioned my path in life. I may not like this road I am on, but this is this road I walk with His help. The questions and frustrations still arise but I always look for opportunities for my life to be an example to others. As Jan said, counseling is probably in order if your wife would go with you. If necessary please go alone for your sake. If you need to talk you can pm me. We are in this together and need each other. Thanks for opening up and being transparent. God bless and have you in my prayers tonight.
Skip

[MDemisay]

Jimbos,

Nobody said that this would be easy, certainly, depending on your fitness level and age going in to treatment is more difficult........However, I feel that there is always a bright side no matter your condition, look at us, we are still able to express our feelings here! That in itself IS something!

I certainly don't know where you are coming from with regard to your back brace difficulty! It does complicate things.

No matter where you are in AN treatment, surely, you can recognize that. Give it time or in your case extra time......as long as it takes......This maybe an overly simplistic view, but trust in God.....It is not always for us HE does things! There is a larger scheme of things.....

My wife and I just celebrated our 32 Anniversary. 20 years ago she had breast CA. 8 years ago I had a large AN, this summer I had to kill my tumor and I (with the prayers of the people on the ANA forum and some skillful radio oncologists ) did.