AVM Survivors Network

Guess What Day It Is!

So how many of us can identify the TV commercial by just that line?

May we all find a little bit of that camel’s day of the week enjoyment today…

What’s Wednesday?

Some thoughts…

Does anyone else have a hard time keeping track of what day it is? When this “thing” pushed me out of the typical work world, keeping track of what day it is has been harder for me.

So I guess that guessing what day it is becomes a bit of a challenge…

Don’t ever minimize the power of your own story. You might not think it’s important or inspiring or humorous or encouraging, but you can be sure someone else does.

If you saw us sitting on a park bench, many of us would be impossible to pick out compared to the totally healthy person right next to you. Fighting an invisible “thing” requires either radical isolation or openness and vulnerability.

Speaking of vulnerability - check out Brené Brown at https://www.ted.com/talks/brene_brown_on_vulnerability Every time I hear or read her, I realize how hard it is in our world to be vulnerable and to be okay with that.

I think this group is a shining light pushing back that fear of vulnerability.

This afternoon at 3:00 PM, we have the “results” meeting with the neuro psych people to hopefully get a better picture of what’s going on in my head.

Part of me is looking forward to it under the hope that it will show things that can be treated, worked through, gotten around and I can open the door back to the pre-January 30, 2018 Me. Even if only by a little bit.

The other part of me is scared that they are going to find something that’s wrong, getting more wrong by the day and isn’t going to be able to be reversed in even small ways. Another big push into the “new me” area.

I don’t want to go there.

But every single doctor I’ve seen in the last 18 months has had something to say that moves me toward the “new me” area.

“New Me” sounds a lot better than “damaged TJ.” But…

“New me” is still in the learning stages of life,

Don’t forget about the things, even small ones, that you can do for others. They help you remember that “new me” is still valuable me.


Lots and lots and lots of Grace.

Grace given to those around us who get frustrated with how the new me has taken over.

Grace for the patience to live with limitations that aren’t going to stop.

Grace during times of grief.

Grace for the times when we try to do the “new me” and the “old me” turns it into a mess. Or as I’ve been told that it was originally used in the military to describe certain types of situations. “We’ve got a SNAFU over here.” Snafu -
Situation Normal All F______d Up.

Random switch - when son goes off to college and older daughter and wife are both working at the hospital, and there are only two people at home, a $3 meal of a hot dog and a pop ($1.50 each person) is a cheap way to spend 45 minutes hanging out with an almost 18 year old.

The talk is worth more than the hot dogs…

and without further ado, I present “Happier than a camel on Wednesday…”

And with that, it’s time to go do the “important” things of life - dishes and laundry.

Thanks all!



I love that Berne Brown Ted talk. It made me see just how brave I truly am. Everyday when I leave the house and wobble around risking a fall but getting on with my life.
Thanks for the reminder TJ

1 Like

Happy Friday, TJ! I love that talk by Brené Brown (as with many of her talks and videos on YouTube). And I agree that society does make it tough for us to be vulnerable and be okay with it. It took me until only recently to be okay with being vulnerable. I appreciate it now, because it is a part of me, and a part of what makes me human rather than the robot that I made myself by holding back.
I love your thoughts on grace. Many times people that had been through trauma knows grace and compassion having gone through what they had.
“New TJ” sounds good. As well as “The TJ that has Survived.” I wouldn’t say that you are “damaged.” Your might be living with a Rare Disease that had affected you, but it doesn’t make YOU damaged.
Have a wonderful weekend!

1 Like


This is absolutely marvellous. One of the best shares – not just the Brené link – but your message around embracing vulnerability. I completely agree.

Hope you’re doing well,


1 Like