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AVM Survivors Network

If you can't cook it.... Part 2

#1

TJ here - since I don’t know anything about any of your religious views, I’m going to write this under the assumption that most of us have some sort of religious/church affiliation.

About 5 years ago, I was in an Elder’s meeting at church(think City Council but for church) we were having a discussion about how to help those who are suffering because of illness, injury or something like that. My friend RB said something very thought provoking - “If we can’t serve it up in a casserole (large dish with everything in it), then we don’t want anything to do with it.”

The general mood of the discussion is that that was more of a true picture than what we wanted it to be and than we were willing to admit it was. A broken leg, a car accident, road rash and a concussion from a motorcycle crash - those can be seen. So it’s easy to be willing to help and willing to sit with and support those with visible injuries. But what about a guy like or like me? You walk past me in the grocery store, you would think I’m fine. Maybe with less hair than 2 years ago and paler than two years ago, but that’s it.

So what? So two things:

  1. You and your family need to be your primary advocate. You need to take control as much as you can and let people know what you want them to know and when. The same thing for “stuff to do” to help. We all agreed (see part about helping) that the majority of the people in our comunities would like to help, but most of them don’t know how or where or what to to help with.
  2. While way more people know what AVM’s are than they did when I was first diagnosed with it in 1978, let’s be honest, there are very few people who know what they are and how they get treated. This site is a huge help with that. But we all need to be willing to tell our stories and pave the road for those behind us. (Ugh, I just used a blacktop reference in a section that starts about food.) Oops. At least I’m pretty sure Professor VDB isn’t on this site.

So what do we have here?
We have you and me, we have each other.
We have the six degrees of separation? Yeah, that theory/belief that everyone is only 6 degrees away from any one important person (or any normal/regular people!)

Let me demonstrate:

  • I know my daughter and the pastor
  • they know the music director at their church.
  • their music director is from Ireland and performed at numerous weddings and other gatherings.
  • there’s a high school that she went to, she played in the school band.
  • She got to know this guy in her high school.
  • He asked her to play at his wedding.
    Later on, this guy would become known as Bono and his group “U2.”

Dad to daughter (1), daughter to music director (2), music director to Bono (3).

Why am I telling you this? Because I believe that each of us can make the world a better place. A better place for someone - A better place for someone in your 6 degree circle. We can help, because we’ve been there - heck, we are there.

I am. “Stuck in the Middle”. (Extra credit points if you can name the title, date and performer of the song without using Google)

If you read all the way to the bottom, thank you.

TJ

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#2

You definitely have to be your own advocate; my family has been through this with me since my AVM rupture and even they don’t always understand what I’m going through. it’s frustrating and it’s difficult to explain.
to them I act fairly normal in most social settings but in certain situations when my brain just quits working. ( try to explain constructional apraxia to someone and they’ll usually just give you a blank stare). You either just have to be patient and try to explain that to them or just let it go and realize they won’t understand and not have it hurt your feelings as most people think if you look fine on the outside you must be fine on the inside… and yes I think we have to be open to helping somebody in our 6 degrees of separation though I’m glad that outside of this forum I haven’t run into anybody that has to deal with this as I wouldn’t wish this on anyone!

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#3

I understand you. Thank you that you wrote this because it was just another sign for me to follow my idea I have, and my heart :heavy_heart_exclamation:

I wish you a wonderful weekend!
We’re here for your support and I love to read clever thoughts like this. Keep sharing!

I’ll share a wonderful story like that as well, yet different.

~ when I was young, grandma passed away in cancer
~ years later, mom and dad had a surprise wedding in France, all of my family was there. (We are Swedish)
~ the Swedish priest they got in contact with and who held the ceremony talked to my grandpa after the ceremony in sunny France
~ it turns out that it was the same priest whom buried my beloved grandma, and my parents had no idea about that! :two_hearts:

So… I think there’s more to life than we know of. Call me spiritual, religious or whatever. I do believe in something! :heart:
I believe in love, it’s the most powerful energy there is.

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#4

Thank you, TJ127 for the inspiration and the smile this afternoon! One thing is for certain: those of us here all believe in each other, and in the power of human care and kindness.

Love the six degrees stories: I often wonder how many of those short chains exist in my life! Fascinating to think about, and there’s no way of every knowing.

Seenie

#5

Absolutely!

And you know what? The world is a better place for you and Mia and Mike and everyone else here who shares a bit of support, a bit of love.

I think this place is just great.

Richard