Oh, and by the way, I think there is real value in being a bit “arbitrary” / different. Imagine if everyone believed the same thing, did the same things, painted the same way or played just one style of music? What would the world be like?
I’d rather have more colour than that.
Definitely respect the honesty on the subject @GregF! And I definitely agree with @DickD that although we may feel some shame, I would love to meet someone who could go through something like this and not be a little “arbitrary”. This difference will become a problem when we attempt to hide it or fight it.
I know it sounds like a weird question, but if anything I guess the biggest thing I was looking for when I posted this was just to hear other peoples perspectives on having an AVM and how they have approached this situation.
I can’t thank everyone enough for sharing their story! You have no idea what it has meant to me to hear first hand from people who are going through this or have already gone through it!
You guys are amazing! And I certainly hope that people will continue sharing their stories if they come across this thread in the future.
As for an update on my current situation, I’ve certainly been thinking about who I want to be as a result of this and have definitely found a new source of inspiration, upon acting on the suggestions that were made and from reading the stories and ideas of everyone that has posted so far!(long sentence 
)
Thank you once again!
Jack,
The longer I’m hanging out with him, the more I’m finding that it’s a good thing to agree with @DickD…
I’m not sure I understand the use of the word arbitrary, but I know that someone who goes through an AVM and it doesn’t change them is fooling themselves. When I look back at 1978, 1986, 1987, 2009, and now 2018, The first one I was able to fool myself because, well, middle school and high school - there’s a lot of “fool yourself” stuff going on anyway. Every time I went into an additional embolization etc., I knew that I was going to come back with a better situation but with probably bigger problems to go with it. Does that make sense? Finally, this lengthy 3-year process has brought me to the social security disability trying to keep it all together on 1 1/3 incomes when we were used to 2 1/2 incomes. But we didn’t have the extra income and it’s been an adjustment. There was something else I was going to say----- but I couldn’t remember it…
Oh wait, I do. Does anyone have people, particularly people in their own family, articularly ones they might have said things like “’ Until Death Do Us Part” who have an extremely hard time accepting you for the new you? Where wife will come home from work and comment on something that she’d like to do, “We really should repaint the back porch and replace the two screens with rips in them big enough to fit a honey bee through.” Me: “I will put it on my list of things to do, but there’s a number of things on that are higher up.” “Oh, I know, just some day when you get to it.” So what did we accomplish in that conversation?
How do you bridge the gap between those? #nothypothetical #askingforafriend
I’m convinced it is a situation where she doesn’t realize that saying things that way have a negative stress on emotional well being.
How do you address that??
Arbitrary isn’t a helpful word. “Diverse”, maybe “different” are better things to say what I think Greg’s family were saying.
TJ, I’m quite sure most people’s wives are the same. And the thing is, is that it is just a matter that they’ve had quite a day at work and come home and say things rather more unguardedly than we would like.
I’ve got just as many jobs in the list as you (and I’m almost certainly more able to get on with some of them than you) but really, the important thing we need to get done this week is her tax return, in case we forget about it and go over the deadline. I’ve nagged several times but it’s not her favourite activity so (like some of my jobs) it gets put off. I also need my car fixed as the cabin blower has started to get temperamental and that’s really unhelpful in the winter.
Between us, we just need to know that actually, we love each other, never mean to bite when it feels like a bite or get the other person down by putting another thing in the worry list. I think for me, it’s a matter of deciding which are the things that really matter; the rest has to go further down the list. Then, I do need to make some progress against the things at the top of the list, or if it isn’t me to do, nag a bit to get it done.
I’ve no idea the right answer but you’re definitely not alone 
Richard
@TJ127 I definitely agree that change is inevitable!
(Part 2)That’s a tough one! Maybe she’s just been under a lot of pressure lately and is just thinking that she won’t have time to do what’s on her list. It’s really impossible to understand what is going on inside the minds of other people. I know that doesn’t help whatsoever, but you definitely can control your reaction, in the sense that you can try to see maybe why she’s is acting the way she is. There’s a good chance that the misunderstanding goes both ways. I by no means want to sound callous, I just think that you can never go wrong hearing more about their perspective. It might not solve the issue exactly but at least you gain an understanding of exactly what might be going on in their head. I guess this is just a long way to say talk to her about it. (You probably already knew that but it definitely isn’t the easiest way to go about things, think of this as a push 
)
Jack and Richard (@DickD,
Thank you both. I don’t know if I said it but she’s an RN in a Neonatal ICU at one of the two best NICU in our state. Babies get helicoptered from 4 or 5 hours away to get the care that is provided on her floor. That’s me.
She said she figured it out one weekend and collectively, the babies that she took care of in a Saturday/Sunday work schedule had a combined weight of just under 8 lbs. That’s three babies all weighing in at slightly under 3 lbs a piece. I am damn proud of the work she and her friends do there (and yes, they are a close knit bunch - to deal with the kind of stress they have…)
Dearly beloved women in the group, please don’t get mad at me for saying this. Also, anyone who’s roots come through the country of the Netherlands (my grandpa and grandma on my Dad’s side came over from the old country) you are probably familiar with the term, “Stubborn Dutchman?” I don’t remember when my wife’s family came over but it was longer ago than that. So we have, between the two of us, probably 6 of 8 grand parents who are from “the old country.” Stubbornness and refusal to see things someone else’s way is a family trait.
Oh and my significantly better and first born half is much more of a control person than I am. And you know how they described middle children as the ones who want to keep the piece? That’s me.
She said she figured it out one weekend and collectively, the babies that she took care of in a Saturday/Sunday work schedule had a combined weight of just under 8 lbs. That’s three babies all weighing in at slightly under 3 lbs a piece.
Not that any of this solves anything, but it helps knowing that people know and can relate…
tips hat in your directions. (Picture me tipping my hat while turning in a circle and getting even more disoriented…)
TJ
TJ
I don’t know if I’ve let on but I have some Norwegian and Danish relatives (proper Viking folk). At the other end of the scale from the babies that your wife looks after, my two Norwegian nephews weighed so much when they were born that, even if weighed in pounds, would have been a good weight but in Norway they are weighed in kilos. I think one of them was about 5kg! It’s enough to make anyone’s eyes water, that! Mind you, he’s a big fellow.
Lots of love to your missus. She’s amazing, just like mine.
Richard
TJ, my wife is an NP and has worked all over, spending a great deal of time in the northern remote nursing stations…she now has a great affinity for roads! She’s moved on to other clinical and teaching since getting her PhD…we have firmly established who the academic is, I can carry stuff if needed!
I have so much respect for those in NICU. My son spent several days in NICU water birth due to having Hirschsprungs Disease. He had a resection at 6 1/2 months. He was taken in by Life Flight, we drove the 3 hours. We were feeling really sorry and hard done by, that outlook changed dramatically once we got there. He was by far, not even close, the healthiest baby there. He was 7 lbs 13 and no two others added up anywhere near that. He was only a couple days, then one on the ward and home to await surgery. The love and caring those nurses and staff provided to those infants was unreal. Please pass a thank you to your wife for all she has done for so many! John.
Up until he “retired” at the age of 66 which means he went to work at the church’s seminary - and worked there for a paltry 15 years - it was really kind of funny, the seminary has a sabbatical staff for the ministers on staff where, after I think it was 10 years, they would get a 2 week paid leave to attend a conference etc. to give them an opportunity to catch their breath. Apparentlly they had to get the board of trustees involved because no one knew what to do with giving sabaticals to ministers who were still working and leading classes and writing books and doing student evaluations almost full time at the age of 76. As it was, he was working two weeks prior to when God called him home. It will be 3 years in March and with all of this Covid and political crap, I would loved to be able to sit down and talk with him about it. My Mom has a more realistic view, “I’ll see him when I move past the pearly gates, but I don’t want to watch him struggle with all of this chaos and anger.”
Okay, done being off topic. There’s a couple in our church where he makes me feel small. A couple of inches taller (I’m 6’2’ and a bit wider than I should be). He’s got me by around 3 inches and easily 100 lbs. Rumor has it that when he and his wife (both just a little younger than my wife and I) had their baby boy, my dad announced it from the pulpit, "And we want to give thanks with John and Joanny as they celelbrate the birth of their son Jacob. Jacob was born at the rather petite weight of 12 lbs 4 ounces and rumor has it that when it was time to come back to “their room” he asked them for a bike and wanted to ride back to their room. To the day when we left that church and gave our black children the privilege of worshiping with people who look l ike them, he was the only person in that church who I could not sit behind. He had the height and the width to be too big to sit behind.
On the other side of it, my youngest daughter, from Haiti, malnourished, was 20 months old and weighed 12 lbs when we first met her. Stunned didn’t describe it.
She didn’t start walking until she was almost 2, didn’t start talking until almost three and hasn’t stopped since. She was not happy when, 12 years later (don’t quote me on the exact age) her doctor (the one who watched her for her scoliosis) told her that she was full grown at 4’10".
Never a dull moment…
TJ2
Wow. 
That has to be so stressful somedays and so great the next!
My mom is an oncology nurse and always has so many stories that go both ways. (Though she never has to preform any emergency help.)
My mom is definitely a hero and so is your wife! Truly amazing!
Hey Guys, Here’s an example of arbitrary Greg. My take on the issue: Never do today what you can put off until tomorrow. Instead of making a to do list for the weekend, I make a things not to do list.
My niece was frustrated by school. I told her that Cs are good enough. Getting an A is not worth it if you have a miserable experience at school. (I hope my brother doesn’t find out I said it.)
In short, I’m trying consciously to lower my expectations. I was always a driven person and frequently disappointed when my plans did not come to fruition.
But I would never say a lie or hurt your wife’s feelings. Rather, I’d say, “I promise to fix the screen before a grizzly bear can squeeze in.” Thanks for your help here.
Greg, this does seem quite unusual. Does it help in any way or is it more an illustration of something else?!
It’s an interesting thing about encouraging kids one way or the other re school. If you told my son not to aim for the A grades, I’d be quite annoyed: he’s a very capable kid (like ridiculously so) and should achieve far more than I’ve ever done. However, not everyone is in that space, so it can be good to set more appropriate targets. Difficult, though, when you’re not the parent 
Hope you’re doing well,
Richard
One of the best things I’ve learnt in the last 12 months and has made life so much better was similar
Expect the unexpected… But not in the traditional way
I always had high expectations of others as I held myself to a very high and reliable standard
Now with this saying I incorporate it into ALL aspects of my life
When someone says they are going to message or call… I expect they won’t
When someone says they will be here at 10am, I expect (if they show up) that they will be late
This is kind of hard to explain in words but this isn’t negative thinking and it only has made me very happy
What I’m trying to say is I don’t expect the worst to happen in any situation or think negative of any situation. I’m very positive! I just keep my expectations of people and life low so when bad things happen, I’m not disappointed. When good things happen, I’m ecstatic!
When someone does call or arrive on time or do what they say they would do, I’m excited and very happy. When they don’t, I expected it and I’m not disappointed at all. No bad feelings at all.
I said the other day after lots went wrong including my uncle’s stroke, I don’t think the words “disappointed or upset” even exist in my vocabulary anymore. And it’s great! I’m an extremely caring person and i still care about life and people with a passion. But I’ve changed my way of thinking.
Hope that helps someone anyway 
Just to chime in, I remember a tag line “if you’re early, you’re on time. If you’re on time you’re late. If you’re late you’re in trouble.” I really almost believed that until I started my brain injury journey. Now having had 4 AVMs rupture. I get it. AVMs force you to reconsider what’s important. I shoulda died in 2000. Instead by the grace of God in my view I finished undergrad. Got married, had a child, and then in 2010 had another bleed. Thinking I was done I had another bleed in 2017/18…
All I’m saying is, we don’t know what will happen tomorrow. For that matter we don’t know what will happen in an hour! The fact is, my AVM journey has been jarring, difficult, rather than make plans for disney world for the kiddos, i have had to make preparations for burial.
As a former pastor, who served for 5 years, had another kid, until I stepped down for further education only to have another brain injury, I believe Jesus has a plan for us all. But I also believe that we have a responsibility to make an effort to share with others the hope we find in Him. I hope you all have a wonderful 2021 and if you ever are so inclined, you can find out more about what I believe is true by reading the brief book of John in the New Testament. Not trying to preach but I have found hope in the promises of Him. Blessings as you continue!
That’s definitely how I am starting to see things. I can only control what it is in my power, there is no use getting emotionally affected by the actions of other people. I certainly believe there is wisdom in that view! Thank you!!
That is a very poignant story! Thank you for sharing!
Do you know what the causes for your AVM to re-rupture? That is definitely a fear of mine.
Life has definitely become much shorter! (Philosophical sense? ) And this path of recovery has certainly been testing! Thank you for sharing your story and views!!
As far as I know, I’m not sure they rebleed or I had another AVM. I have had 4 separate AVM I believe. But that’s when seen by 5+ doctors in three different states with three different medical systems over a span on 20+ years. So based on my nonmeducally educated knowledge, you only have a set number of AVM in your head at birth. As you grow blood flow grows too and the leaky portions of the AVM sometimes rupture, usually during puberty. But those of us “lucky” enough to not have them bleed “discover” an AVM during times of high blood flow (exercise, stress, sexual activity, etc.). But again wanna check with your doctor on the whole rebleed thing cause I’m not sure if even they know! Blessings as you continue!
Very interesting! Thank you once again! Don’t worry I’m definitely goin to consult with my doctor when I go down for an angiogram in March!
Hi Jack!
I mean, I’ve always been kinda spiritual but when I first got to know about my AVM (non-ruptured) I was 19 and the doctor scared me so much sounding like I could drop dead any second!
That really left me broken and questioning life. First I was “paralysed” and I don’t even remember much of that time, partly for being in a very unhealthy relationship as well. Then, at another checkup the doctor told me that we have to do something about the avm (they left it untreated cause of its size and bad position in the brain close to the motorics and senses of my left side) I got another wake up call.
“Why am I so sad of possibly dying when I don’t even like my life, nor live it as I want?”
So yeah, I took off. Lived on a island in Asia for almost a year. Camped and cruised around in Australia another year, visited California and South America (I’m from Sweden so it’s kinda always been a dream to visit Cali). And boy, have I lived, laughed and cried!
For me, now, I see my AVM as a blessing in disguise. I found my peace and I know who I am now. I believe in something higher, I believe in us humans (we just need to wake up and believe in ourselves, in Source/God/our creator cause we are all micros of our macro). I found happiness, I found perspectives of life and how blessed I am. I’m an empath and feel so much for all humans and animals around the world, just wanting a good, peaceful life. We are all worthy that. I lived out my dream of travelling the world and I have no plans of stoping that (just a pause now… you know, covid and all…) so I’m studying at uni right now. The quarantining (which isn’t that much of a quarantine here in Sweden but Yeah…) gave me time to dive further into spirituality and finding peace. I’ll recommend “the Celestine prophecy”, a book I first read, if you resonate with all of this.
I know what you mean when you say that you don’t like the same things as before. Believe me, I was such a different person before all of this. Partying, fashion, high paid (and oh, so boring) job. I’ve left all of that behind me cause it doesn’t make me happy. It never did. You will find new interests that are far more… important and valuable I’ll assure you! It’s very lonely sometimes, being on the spiritual journey. But I’ll tell you, when you meet likeminded people - it’s so much more… real and pure than anything before.
… what I wanted to say was that I think that I partly healed myself because I’ve done a 360 turn and live a completely different life than before. I’m eating clean and healthy, I take time for my yoga and gym practice even if it’s a slow progress (radiaton therapy messed with my left side, but hey, the doctor said I would be in a wheelchair and I’m certainly not!) my relationships are way better and I try to think positive of myself and everything around me every single day, but most importantly - being grateful for my health and all that I have!
Sending you lots of hugs and prayers! Follow your dreams and take care.
Mia you and your story are amazing! Thank you so much for sharing!