Existing or Living

Just wondering if other individuals feel as if they have a different outlook on life now.
Do you find yourself appreciating things now, that perhaps you did not appreciate previously? Do you feel down and out, feeling as if you are missing out on life?

Please share your thoughts. I would love to read about them. Besides, this is a good way for us to help each other, as well as let the new comers to the support group, really learn the difference(s) it has made in other individuals life. How sometimes you might feel down about it for a while, but then again, there might be times in which you really feel as if you are really starting to live real life…experience things…little things.

Definitely LIVING and Loving Harder!

The AVM made us realize that having each other, family, and friends was the most important. The rest of it is small stuff–we now don’t sweat the small stuff (or at least as much). If you came to my house and looked close, you might find dust on the bookshelfs and the carpet might need vaccuming, but we would sit down and really talk, or sit and share a meal.

With or without an AVM, no one knows how much time they have here. Having an AVM just makes you realize reality a little faster!

Yes, you can get down focusing on your medical issues. But Ithink it’s a lot healthier to have a good purpose.

Ron, KS

Yes…definitly this made my realized that I have to appreciated life. Also when I had the craniotomy done between those weeks… I had a car accident due to a seizure and that make realized that my life had change that Its not gonna be the same like I was before …I have to appreciated more Husband, my baby, My mom, sisters,and friends. Life is short I just to get mad for everything not anymore life is short.

julie,
my avm journey…haS CHANGED MY LIFE COMPLETLEY… i can say having to learn to walk and talk again has changed me into the person i could have only ever dreamed of being…i know know the secret of life i am a more compassonate and understanding person who doesnt stress over the little things any more…i know wht i am here and i will now achieve those goals with my new outlook…as hard as my journey has been and as far as i still have to go …i can actually say i am grateful to have travelled this journey because if i hadnt i never would be the person i am today

Hello Julie,
Since the operation in 03’ my outlook on life has changed quite a bit. I have tryed many things to help to change things such as ( to name a few), hate, unusefulness. To conquer all this negative feeling, did the following: Prayer, EFT,made a strong effort to keep in contact with family and friends,and brain health upkeep. Presently I now remember dreams- mostly good ones, Man! what a insightful experiece. To be honest, it’s tuff living day to day, in the past my life was very active, phy/mental, now, it is harder cause of body balance and poor Executive Function. Thru extensive rehap for phy. I 'm able to walk, but on the Executive Function part haven’t inproved. Do you or anyone out there have any ideas on this matter? As you all know there is not much research on brain issues. BUT! at least there exist this support group.

Thank you alot!

Oh wow, I am going to have to look up Executive Function and find out what it means. I lost memory, etc., but with it also went things such a remembering a variety of words, hard to learn by way of reading, etc. Can you help me understand what this is please? The words “Executive Function” that is. Would really like to learn, but I need words in a very very simply 6th grade language.

Gerardo (David) Barriga said:

Hello Julie,
Since the operation in 03’ my outlook on life has changed quite a bit. I have tryed many things to help to change things such as ( to name a few), hate, unusefulness. To conquer all this negative feeling, did the following: Prayer, EFT,made a strong effort to keep in contact with family and friends,and brain health upkeep. Presently I now remember dreams- mostly good ones, Man! what a insightful experiece. To be honest, it’s tuff living day to day, in the past my life was very active, phy/mental, now, it is harder cause of body balance and poor Executive Function. Thru extensive rehap for phy. I 'm able to walk, but on the Executive Function part haven’t inproved. Do you or anyone out there have any ideas on this matter? As you all know there is not much research on brain issues. BUT! at least there exist this support group.

Thank you alot!

Ditto !!!

Ron, KS said:

Definitely LIVING and Loving Harder!

The AVM made us realize that having each other, family, and friends was the most important. The rest of it is small stuff–we now don’t sweat the small stuff (or at least as much). If you came to my house and looked close, you might find dust on the bookshelfs and the carpet might need vaccuming, but we would sit down and really talk, or sit and share a meal.

With or without an AVM, no one knows how much time they have here. Having an AVM just makes you realize reality a little faster!

Yes, you can get down focusing on your medical issues. But Ithink it’s a lot healthier to have a good purpose.

Ron, KS

I don’t have an AVM, but my son had a stroke at 6 months of age and is a very complicated case. My heart goes out to all of you and we pray for all with AVMs frequently. I truly feel that Ashton is here for a reason and that there is a purpose to his having AVMs. He has taught me and many others more about life in his 4 short years than my 30 years. I could live in fear everyday of the possibiliters and I have my days, but I really try to not be fearful and enjoy every moment. Every day truly is a gift from God. I could have lost him 4 years ago, but I didn’t and I praise god for that. It’s hard being a parent because we are the ones that have to make medical decisions at this point. We brought him into this world and we have to raise him as normally as possible eventhough he has delays and problems. My wish for him and for all of you is that you take one day at a time, don’t live in fear and realize that there is a reason for everything. We may not see it now or understandi t, but one day it will all make sence. Prayers and strength to all of you and may today be better than yesterday!!

I definitely have an different outlook on life. I think all of us who came close to dying will tell you that. We all too at certain times feel down and out. I think for many of us whose deficits are debilitating it’s hard not to sometimes. For me I have a deeper love for my family, especially my husband who really has been so fantastic over the last year and a half. My girls give me such joy it’s hard to put into words. I don’t get angry nearly as much, I truly don’t stress over stupid things, in fact, I hardly stress at all. Life’s just too short not to be happy, so I believe that you need to do what makes you happy. I will not allow negative energy around me, it’s just not healthy.

Living, definitely!

Mine was an ‘everything changes’ experience. I found the road since 2004 to be magical and horrendous. The good parts are amazing. The bad parts were devastating. I find it impossible to explain to friends/families b/c if you haven’t been through it, you really do appreciate the stuff you used to take for granted. I see how much my friends and family complain about the ‘little challenges’ of life, realizing i was just as silly as they are. We all have good jobs, good lives, but tend to see what we want, not what we have. Such a gift to see the blessings of your life. I thank God that Ben started this site, I would have loved this community when I went through the rough times. Such a gift from Ben to make something wonderful from his own challenge. In rehab, I had a visit from someone who’d had an aneurysm in her 30’s, and it was VERY helpful. She had many challenges, but rebuilt a great life for herself. That’s hopeful. Like this site, sharing can be powerful. Waking up from a massive bleed is impossibly hard. For me, there are, in the big picture, minor challenges now, less challenges than many of you face. i was lucky enough to have a ‘remarkable recovery’, and i really try not to forget that. When it’s 3pm and my energy dives down, I’m cranky, but I grab some protein or coffee and make it through or rest when i can’t. But, I still don’t have my old energy, which was so strong and can’t quite bike or ski yet (bummer). But, I’m so close, those goals will come sometime, but not on my timetable, I’ve learned.

Good discussion topic! I had so many DOWN AND OUT times during my journey, that I am glad that I kept getting up and moving forward. People ask me how to did it, and I always think that my parents always worked hard, sacrificed and used humor to get through the toughest times. In my family, you work hard and never quit trying. I think we all have the strenth within us, just need to tap it and keep trying.

Not quite able to work FT, but incredibly close. That’ll come, hopefully. If not, I’ll handle it. i’ve handled much worse. But, I have much more energy than even two yrs ago. I’m much calmer now, and even finding that in my journey to become a tranquil person, my friends, family and even society are so out-of-control stressed over the small stuff, i’m sometimes even grateful for the anxiety. It forced me to learn to relax, deeply. My brain doesn’t like stress, so i’m forced into tranquility, but i kind of like it now. I’m also eating very healthy, no junk food, less sugar. I was healthy before, but in a fast food/delisort of way. Good choices, but everything was frozen or ordered. sodas, quick food.I like those changes a lot, wish I’d done it yrs ago. Since i was critical, not expected to live, it does change your perspective. It’s no fun to take medication, to cancel plans because you’re too tired, or to have more limits than before. But I fill my life with much more of what really matters to me, and less the trivial stuff. Rather spend the day hanging out with freinds than buying stuff at the mall. People matter, stuff is just stuff. I really embrace the concept that you can’t control what happens, you control how you react to it. I wish i’d learned that yrs ago too! If you’re in a hard time, try to remind yourself of anything you’re grateful for. It really does help to keep the spirits up!

looking forward to reading the postings, it’s such an interesting group of folks on the site, I find it very inspring to read the postings. So many similar, yet different journeys and perspectives.