Author Topic: Guilt Rant  (Read 9196 times)

MDemisay

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Guilt Rant
« on: February 15, 2012, 07:22:36 am »
Do any of you feel guilty? I do! I don't know why, perhaps it is because of my Catholic upbringing. I was always taught think of others first, yourself is less important.

I took so much time away from my family in 2004 when I was dealing with my initial AN diagnosis . I became severely depressed underwent the operation and had some major issues with transportation going to and from rehabilitation and work, my daughter was 14 at that time. I regret that I became depressed at that time. I became less of a strong Dad and more pitiful in not only her eyes but my wife's as well!

I can't afford to let that happen again 8 years later. I must muster up all the courage and fortitude I have with all of your help and resources and fight this crazy recurrent nightmare.

I have lost my families respect because of the depression I went into the first time, I am not ready to lose it again!

Please answer, are any of you feeling guilty for the time you aretaking away from your families and caregivers? How do you cope with it? It's enough to crush me some mornings!


I have felt like I have missed major portions of my daughters life as well as my own marriage. I was just getting used to a no growth debulked tumor.

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Tod

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Re: Guilt Rant
« Reply #1 on: February 15, 2012, 08:27:36 am »
I wrote in another topic that I felt a lot of guilt when I was conscious enough after surgery to understand what had happened (32 hours of surgery). I felt guilt for efforts of the surgical teams to help me. (I have often said afterward, that given the efforts they went to on my behalf, that to not to do everything I could to get better and get on with life would be, at the very least, rude.) I felt tremendous guilt for what my family and friends went through during that long day and a half of waiting.

But it was not my fault. It was simply life. And it was my time to be the focus of attention for a change.

As you have already learned, this stuff is simply not easy. It affects each of us differently, and much of it is completely beyond our control. It is key to good mental health to learn to recognize and accept that we have very little control of our lives. For many they find help with that in their relationship with their God. Others find support in other ways.

I spent many years with a severely depressed wife who had all but opted out of daily living. At the same time, we had incredibly disturbed teenage son that wound up in residential treatment and corrections. And our youngest had his own health issues to watch and his own anger problems from not getting all the attention and support he needed at the time. Family and friends kept asking how I dealt with all of that on a daily basis.

I had my own problems, but in the end,  I did the only thing I could: I got up each and every day. I made the choice to live, to be a part of things, and to accept that I had precious little control of anything. I did what was required and did not give up. I let friends, family, and church family support me emotionally.

After surgery, I did the same thing. I got up each everyday. I marked progress by things such as the number of times I climbed the stairs, the number of circles I walked in the cul de sac, or the minutes I played Wii Fitness.

I don't know what the answers are for you, but I do know you should not feel guilty for what is not within your control. You have a brain tumor unfortunately. Surgery was hard. You thought it was past, now it is growing again. That is a lot to deal with...but it IS NOT YOUR FAULT.

You can get through this, and you will likely need help, but that is what friends and family are for. Plus, one of the things that IS in your control is how much effort you make on your behalf. If you keep making the choice to get up, to do what you need to, you will feel better and so will your caregivers. What bothered me as a caregiver was/is when the person I was caring for did not seem to make the least effort. (If they don't care, why should I?)

Clearly, you care. Keep caring, keep making an effort, and don't give up. Talk to us here that understand, after all, you don't have to be alone.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

TP

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Re: Guilt Rant
« Reply #2 on: February 15, 2012, 08:29:17 am »
First I want to say I am so sorry you have battled depression. I hope you are getting counseling and I hope your family may consider getting counseling as well to help them in dealing with what all you have gone thru.

My AN was diagnosed the end of my daughter's junior year in high school. I missed several of her college visits over the summer and felt bad that I could not go but I must say never felt guilty. I believe that we all can learn from situations (both bad and good) in our life and my daughter learned that life is precious and hopefully will take that experience I went thru to help her as she handles and copes with being an adult and maybe someday a spouse/parent.

We don't asked for illnesses like this to hit us but these are bumps in the road. My faith is very strong and I knew if worse case happened I would end up in a beautiful place so I never was scared or worried during my surgery and recovery period. However, I am ticked off that I have facial paralysis, SSD, dry mouth and had double vision and even with surgery to correct my vision I have eye issues. But that is what it is and I have learned to make the best of it.

My suggestion (I am not a therapist) to sit down with your family and be as strong as you can and talk to them about how you feel. Ask them how they feel and ask for their suggestions. Also, many church's offer Celebrate Recovery Ministry. This ministry allows folks who have suffered all types of issues and illnesses to share their feelings with other folks who listen and provide support.

I will keep you in my prayers!

4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

leapyrtwins

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Re: Guilt Rant
« Reply #3 on: February 15, 2012, 12:22:01 pm »
I was raised Catholic too, but never felt guilty about anything related to my AN.

Bottomline, sh*t happens and it's up to you to do the best with what you're given.

Depression related to ANs is very common, the main thing is to get help if you need it.

There are a lot of regrets in life - I could write a book - but don't beat yourself up; it's not worth it.

Chin up!

Jan

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

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

Jim Scott

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Re: Guilt Rant
« Reply #4 on: February 15, 2012, 01:14:08 pm »
Mike ~

I'm sorry to learn of your internal struggle and the problems your previous AN surgery generated.  As you well know, everyone handles their AN experience differently and some of us are less than nobel about it.  I never had any guilt about my diagnosis and I had supported my wife through serious spinal surgeries a few years earlier and some lesser medical challenges, so she was eager to help me through this AN business.  In fact, she stayed at the hospital for two full days during and immediately following my 9-hour surgery.  However, although my surgery went well and my recovery was excellent, I do regret that because I like to be in control and had to give that up for awhile during my AN experience, I was quite grumpy during my initial recovery period and snapped at my wife if she tried to do anything for me that I hadn't asked her to do.  On reflection, not only did I resent the temporary loss of control during my testing, hospitalization and immediate recovery period but the sense of being dependent really upset me and I was determined to stake out my resumed independence, even if that meant acting as if my (very patient) wife were insulting me by asking if I would like a drink of water (or something equally innocuous). 

Fortunately, as my recovery progressed and I was able to resume just about all of my normal activities (no work to deal with because I was retired) my normal charming disposition returned.  My wife later told me that she was quite alarmed at my 'personality change' and thought our life was going to be quite difficult if the change proved to be permanent.  Of course I apologized to her (more than once) for (temporarily) being a jerk and we laugh about that period in our lives, now, but inwardly, I still feel a bit of guilt over being so obnoxious to the woman I love when she was simply trying to help me.  However, we can't change the past.  We can only learn from it and move on, not only older but, one hopes, wiser. You have an opportunity to handle this correctly and I'm sure that you'll be able to surmount your guilt feelings and, with determination, do much better, this time.  You do have control over how you respond to this situation and it's up to you not to allow your fears to drive you into a melancholy state.  I'm confident that you won't allow yourself to slip into depression, again.  I'm sure you'll be in the prayers of many, which is always a good thing.  :)   

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

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

MDemisay

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Re: Guilt Rant
« Reply #5 on: February 15, 2012, 01:28:12 pm »
Dear Tod, TP and Jan,

I sincerely appreciate your getting back to me ;D! I am a happy guy in most instances, really I am!

It's just that I have been dealing with brain issues since I was 10! Back then I had an anyurism that was misdiagnosed as a concussion, then when was 13 (1970)I had a CVA which they were unable to operate on, then in 1973 I had another which they were able to get the 3 blood clots out at once. I realize that God only gives people things that they can handle, but in 2004, He gave me an AN which was a great test of my faith, now it seems that I will be under going another test.

I have a great deal of faith, I also realize that my AN has nothing whatever to do with my AVM's!

I guess, I'm super lucky in a negative way! I just have been dealing with brain issues for a long time now and I guess I feel guilty (even though there is nothing I can do).

I seem to be getting this attention from everyone again, all of which is necessary, I know. But once more makes me feel guilty, I am sorry! Enough attention already! Which makes me want to get it over with all the more quickly, but I have to do more research! I am not trying to prolong things really. There are just a lot of options!

Thank you all for letting me vent!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: Guilt Rant
« Reply #6 on: February 15, 2012, 04:18:19 pm »
 ;D  ;DH ;D ;D. Jim,

I am totally aware that I was depressed last time, and I do not want to repeat it!
I am firmly convinced that this time, I will not backslide into depression! Knowing
What I know now, in fact, this time I intend to visualize the tumor shrinking and have already
begun with naming the tumor "Irv" in an attempt to gain control over it.

Is this crazy? Not in my book! This time I'm bound and determined to kill it by dosing it with radiation! While everybody has a different approach at it, I find that if I name a semi-repulsive name I can get rid of the thing and be more aggressive with how I eventually kill it! After all it is eating up valuable acreage up there! I just wish that my neurosurgeon would get back to me!

Thank you for seeing my point.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

chloes mema

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Re: Guilt Rant
« Reply #7 on: February 16, 2012, 11:39:41 am »
  I intend to visualize the tumor shrinking

I, too, am taking this approach.  It will be interesting to see how it comes out (play on words, no pun intended)    ;D

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

leapyrtwins

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Re: Guilt Rant
« Reply #8 on: February 16, 2012, 03:14:06 pm »
Venting on the Forum is perfectly acceptable.  We've all vented here at one time or another.  It's what makes it "home" for a lot of us  ;D

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

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

MDemisay

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Re: Guilt Rant
« Reply #9 on: February 20, 2012, 11:01:58 pm »
Good news! I'm moving forward with my selection process, at least in Patient Advocates and I'm sleeping more peacefully and am less anxious about this. I finally found a way to let the pressure off and I partially have you all  to thank for that.

See in some cases procrastination works against you time wise, because I didn't tell my parents because of a big change(happy) going on in their lives, I was postponing even thinking about my growing tumor!

Something I hadn't thought about, (my growing tumor) was becoming more significant in my life again.....But I was doing my best to deny it access to my consciousness! I know realize why I had nearly 3 weeks of nightmares and sleeplessness! Eureka!!


Now, I can finally have a good nights sleep! I realize now that the power was in my hands all along.


I no longer feel guilty, I have released the guilt!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Guilt Rant
« Reply #10 on: February 21, 2012, 01:03:18 pm »
Good news! I'm moving forward with my selection process, at least in Patient Advocates and I'm sleeping more peacefully and am less anxious about this. I finally found a way to let the pressure off and I partially have you all  to thank for that.

See in some cases procrastination works against you time wise, because I didn't tell my parents because of a big change(happy) going on in their lives, I was postponing even thinking about my growing tumor!

Something I hadn't thought about, (my growing tumor) was becoming more significant in my life again.....But I was doing my best to deny it access to my consciousness! I know realize why I had nearly 3 weeks of nightmares and sleeplessness! Eureka!!


Now, I can finally have a good nights sleep! I realize now that the power was in my hands all along.


I no longer feel guilty, I have released the guilt!

Mike

Congratulations, Mike!

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

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

chloes mema

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Re: Guilt Rant
« Reply #11 on: February 21, 2012, 03:42:36 pm »
Good results Mike.  Wish you the best down this path.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back