Survivor guilt

Some days. Bad one yesterday. Tough to stay positive. Angry at the "you’re lucky to be alive " words. Really? Why? I’m not who I used to be. Where did I go? Why the pain, depression, fatigue?
Three coilings- one more to come. Not sure next ones worth fixing.
Eight year old child in my small town didn’t survive a rupture. Why did I?

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Tacoma...the best I can say is "welcome" to this site for support...

Many members have stated the "new me"... I have refused that...

I have done tremendous research...and, these past several months have been tremendous for me in finally able to comprehend some data...Each time, I learn something it sort of opens/repairs portions of my hippocampal area to memory...which is amazing...because I am sooo disappointed (right words?) in the limited recovery procedures that should be available...as it is in numerous associations/foundations...related to brain injury/disease... and it is not defined here...

My chapter is getting too long... to 'why a child and not an adult'.. that is in every disease (cancers and and and)...some are saved and some are not...I have had personal friends and work associates involved in much of these issues...in impacts/loss of their children... and/or a grandchild/ others of other family members/in-laws...and/or neighbors, etc...

The only time we can save another is usually if saving from a fire, car accident and are unable to the bigger issues...floods, quakes, other storms ... a slide...you may remember Oso and the 42 we lost a few years ago...we could not have stopped that slide until it stopped...regardless of any age....more recently 9 injured firefighters...blessed to be alive...as we all are, any age, to still have them...

As for children and aneurysms...there is a Group here...and, in time connection with that Group may help you...I really do not know its activity.

Prayers you will get your next aneurysm completed...and, get through your recovery to look forward to what you may want to pursue to help others...possibly connecting w/the parents /family of the 8 year old

Tacoma, it always saddens me when a child dies, for any reason. It’s something I never got used to working with children. But death, like life, is what we make of it. I learned from the Heltons who lost their daughter, Ellie, that children’s aneurysms are often on the brain stem. They also see and focus on all the lives their young teen touched, and it was many. There’s not much research on children. But different foundations are focusing some energy on those studies. My grandmother would tell me there are no guarantees to how long our life will be, make it a good one, do no harm, respect others and self, have meaning. From what I have learned about Ellie, she did all those things and had never met my grandmother.

I agree with patioplans, I am still me. Not the me when I was 5, 25, or 45. Life brings experiences and through experiences we adapt and change or we don’t. It’s a choice. I would encourage you to focus on goals, make them simple and build from there. Perhaps getting a therapist. Depression is real but there are things people can do both behaviorally and for some, medicinally. Depression is a spiral. I have never met a good therapist who didn’t ask a patient to change their behaviors even if taking medicine. So what can you do for yourself? Clean one area of a room? Get with friends? Go outside? Get a hobby? See a therapist? If it gets bad, use the hotline number on the front page. Good luck!

Tacoma

Of course, the next one is worth fixing. We were saved for a reason. My guess would be the help that you could give to others. I was feeling the same as you for a very long time. Once I was able to walk and talk better, I started going to this church in my neighborhood. Was out walking(therapy) with my walker. Although, I was walking much better, I fell on the lawn of a church I didnt know. I decided to visit this church the following Sunday since I could walk to it. The people in this church were the friendliest people I had ever met and continued to go there. This church has helped me in so many ways. I ended up becoming a Deacon and began visiting sick and elderly people. I had no idea that my story could give so much encouragement to so many others. Doing this not only helped all those I visit but it gave me positive outlook which is very rewarding. I still struggle a bit with the survivors guilt. I struggle when anyone passes away even though I strongly feel they went to a better place. I felt like I lost everything at beginning: A wonderful career, ability to ever drive again, my home, friends. Once I came to terms, I realized I have also gained a great deal expecially all the wonderful p eople in my court supporting me. Still have my daily struggles with pain, fatigue, and depression at times(not often), still cant read, or understand anything to do with numbers, writing is the worse but i Still work at all of it.

I wish you all the best and reach out to us whenever needed.

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Thank you Kimberly,
I’ve read your story over and over. Your words are an inspiration to me. I thank you for sharing your journey.
I’m so glad this support page is here. All three of the responses I received are special to me. Gratefully,
Tacoma



Kimberly DiNoia said:

Tacoma

Of course, the next one is worth fixing. We were saved for a reason. My guess would be the help that you could give to others. I was feeling the same as you for a very long time. Once I was able to walk and talk better, I started going to this church in my neighborhood. Was out walking(therapy) with my walker. Although, I was walking much better, I fell on the lawn of a church I didnt know. I decided to visit this church the following Sunday since I could walk to it. The people in this church were the friendliest people I had ever met and continued to go there. This church has helped me in so many ways. I ended up becoming a Deacon and began visiting sick and elderly people. I had no idea that my story could give so much encouragement to so many others. Doing this not only helped all those I visit but it gave me positive outlook which is very rewarding. I still struggle a bit with the survivors guilt. I struggle when anyone passes away even though I strongly feel they went to a better place. I felt like I lost everything at beginning: A wonderful career, ability to ever drive again, my home, friends. Once I came to terms, I realized I have also gained a great deal expecially all the wonderful p eople in my court supporting me. Still have my daily struggles with pain, fatigue, and depression at times(not often), still cant read, or understand anything to do with numbers, writing is the worse but i Still work at all of it.

I wish you all the best and reach out to us whenever needed.

Hey Tacoma,

That guilt is nasty. I had a couple of real nasties. Prior to all this I was working with people with disabilities. Teaching them independent livings skills. How to cook, clean and look after themselves in the community. Many of my clients were brain injury clients so I knew the impacts that BI can have. After my first incident of '13 I pushed myself to rehabilitate to recover and I pushed hard. I did return to work part time, but had this guilt of why could I recover but others didn't. Then later in '13 I had a further incident resulting in 2 further operations. These 2 really screwed me up and I haven't been able to(and been told I probably never will)return to work. Then I had the guilts because I couldn't return. TSK. Recently I've had further neurosurgery and this has stopped me completely, so OK I'm now back to recovery mode again but each recovery keeps taking longer and l o n g e r. Pain and frustration are my bedfellows. Now the guilt is on me, maybe if I'd taken it easier, maybe if I hadn't done somethings, maybe if I'd done others, maybe I'd be better. I seem to internalise things and that just messes with my head even more (as if it's not enough of a mess already)

The dr's talk of simple things like acceptance. Simple? they reckon. There is nothing simple about it at all. For many of us what we had has gone, so all those life plans POOF gone. All those skills we'd developed, vanished. I too go thru those days of "OK, let's move on" but then have days "stop the world, I want to get off". Admitted, over time the 'stop the world days' have become less, but I still wouldn't say I've accepted fully the situation. As I've said before, all I can do from here is manage. Manage symptoms, manage medication and manage me.

I do still have days when I think maybe I could return to my job. I found it very rewarding using my skills and knowledge to help others and I miss it badly. OK, so maybe returning is a 'pipe dream' but even in a volunteer capacity maybe a future option. Volunteering maybe an option. I try to keep what little avenues I have left open.

Merl

Yes, you get it. Thank you so much for sharing some of your thought processes. I think I am doing better at the “managing me” that you mentioned. Besides this support site, I felt the need to see a professional to help me. The combination has truly been helpful. Thank you dear.




Merl said:

Hey Tacoma,

That guilt is nasty. I had a couple of real nasties. Prior to all this I was working with people with disabilities. Teaching them independent livings skills. How to cook, clean and look after themselves in the community. Many of my clients were brain injury clients so I knew the impacts that BI can have. After my first incident of '13 I pushed myself to rehabilitate to recover and I pushed hard. I did return to work part time, but had this guilt of why could I recover but others didn’t. Then later in '13 I had a further incident resulting in 2 further operations. These 2 really screwed me up and I haven’t been able to(and been told I probably never will)return to work. Then I had the guilts because I couldn’t return. TSK. Recently I’ve had further neurosurgery and this has stopped me completely, so OK I’m now back to recovery mode again but each recovery keeps taking longer and l o n g e r. Pain and frustration are my bedfellows. Now the guilt is on me, maybe if I’d taken it easier, maybe if I hadn’t done somethings, maybe if I’d done others, maybe I’d be better. I seem to internalise things and that just messes with my head even more (as if it’s not enough of a mess already)

The dr’s talk of simple things like acceptance. Simple? they reckon. There is nothing simple about it at all. For many of us what we had has gone, so all those life plans POOF gone. All those skills we’d developed, vanished. I too go thru those days of “OK, let’s move on” but then have days “stop the world, I want to get off”. Admitted, over time the ‘stop the world days’ have become less, but I still wouldn’t say I’ve accepted fully the situation. As I’ve said before, all I can do from here is manage. Manage symptoms, manage medication and manage me.

I do still have days when I think maybe I could return to my job. I found it very rewarding using my skills and knowledge to help others and I miss it badly. OK, so maybe returning is a ‘pipe dream’ but even in a volunteer capacity maybe a future option. Volunteering maybe an option. I try to keep what little avenues I have left open.

Merl

Hey Tacoma,

If you can identify you need external help I think that is a massive step in itself. It took me quite sometime to say "Hey, I need help with this..." I'm a typical male " I don't need help, I can do this all by myself..." then get so burnt out trying to manage by self. It would have been so much easier if I'd just simply admitted it from the start, but being as pigheaded as I am, I couldn't ask for help until I was a the point of falling apart. Silly really. I worked with people who needed help, I could identify where, what areas of their lives they needed that help, then I'd assist them to obtain or provide the required help. But when it came to myself rather than identify it, I pushed it away. I'm the helper, not the person that needs help. Bury my head in the ground, then wonder why I'm feeling so burnt out. Pretty bloody obvious when I think about it. But its much easier to identify a need in others than to identify a need in self. So big congrats to you for identifying it.

Merl

Tacoma, survivor guilt is very real and I completely get every word in your post. A friend died the day my aneurysm was clipped. On subsequent bad days I would compare the reasons why I should have died and she should have lived. She had more to offer, was more talented, was worthy...all dangerous mental games. I started helping out at the Habitat for Humanity by making calls for building materials. I've since joined the Board and am involved in quite a bit more. Now when the guilt hits it's not as strong since I'm helping others. In turn the work has improved my mental capacity. As time passes I notice improvements in what and how much I can do. Recently I've discovered that the hypnotherapy sessions on youtube do a good job at quieting the chatter in my brain that used to keep me awake. We learn new things and we move forward and make new impacts in life.

Hi, I'm 8 year post rupture. I still get bad headache. I had a massive bleed and was only given a 10% chance of surviving the surgery. I often wonder myself why I did. I have a lot of cognitive issue and a seizure disorder now. I am grateful I did but when I am really low I have doubts. I am for sure not the person I used to be and that is very hard to come to terms with!!

hi Tacoma! Many reasons why we survive but thats not for us to know just yet, i have strong suspicions why and all seem to be to help others == work undone our work is not yet finished here on earth. I know how you feel tho, i was in church and a lady stood up and asked for prayer re her 5 yr old w a b/a, i felt about 2" tall having just survived a sah!! My Dads favorite saying was "Everything happens for a reason" I truly believe this. Please know that these are stages, one of many guilt is and we must work our way thru them. Others are denial, avoidance, acceptance and progression. Iam 7 yrs post almost and im amidst the aceptance stage i believe? Hang in there, things will progress to a better stage, tc prayers for you and yours~~

Wow I thought no one else’s life has changed, mine like night and day . All I say is I want my life back. It’s been almost 6 years and I have lost so much .