Can I get a show of hands? How many of us have been around long enough to remember the 1st Persian Gulf War? Donald Rumsfeld was the Defense Secretary under the first George Bush and he gave a speech that has been remembered by many. It goes something like this:
There are three types of information in this world.
There are the things we know we know. They aren’t up for debate. We know that Sadaam Hussein was firing Scud missiles at Israel.
There are things we know we don’t know. The known unknowns. We don’t know what someone is going to do in the future if they have their finger on the “red button” that could launch “the big one.” And we know that we don’t know what could happen with that.
There are things we don’t know we don’t know. We don’t know why this particular thing happened or why someone else got sick and you didn’t.
That speech was originally talking about war and the facts of war and the “fog of war.”
But I believe it can also describe the people around those who face significant medical challenges - like us.
I believe that most of us, as patients, as caregivers, as concerned family fall quite solidly in the known known category. We know a lot about AVMs, we know a lot about the risks with AVMs, and we know a lot about living with AVMs. This could be a fairly large group of people for some, it could be as small as 1 or 2 people.
This group expands that circle for all of us.
When I was first diagnosed with my AVM in 1978 (no that is not a typo), that circle of people was two people for me. My mom and my dad. We didn’t have anyone else in our community who could be the known knowns for us. The people who understood, the people who could stand with us, not as friends or family facing the unknown, but as friends and family who know what we’re dealing with. It was not only a scary time medically, but it was also a scary time emotionally because no one we know has been there before.
Okay, let’s step out one circle. Now we have the people who fall into the known unknowns. They know you’ve got some medical issues going on but they don’t really get what it is and they don’t really know what it means. I talked with one of those last night at a church meeting. He asked how I was doing, I gave him my standard, “eh, all right,” answer. His response, “but here you stand and I’m very glad that you are.”
And then there are the unknown unknowns. They don’t have a clue about anything that is going on in your world. They would possibly go all year and see you at church every Sunday and not notice why your right foot doesn’t walk quite the same as your left foot. They might even wonder what a 50-something is doing waiting for the elevator when I could take the stairs down and get a little exercise. If they do notice and talk to you, it’s always on the skin-deep level - never below the surface, never anything beyond sports and the weather.
If you tried to talk to them about an AVM, you might as well get out a space suit because they are going to think you are from Mars.
So this raises a couple of questions in my head (yeah, the place where they put 30 metal coils and a “ton” of super glue.") as I continue to struggle with it and continue to deal with symptoms and symptom management, I wonder:
- What can we do to be a better inner circle for each other? I tend to ask deep questions and there might not be answers, but I believe that asking, even if it doesn’t get an answer, helps for the asking.
- What can we do to bring those who are in our second circle - the people who know you are dealing with “some sort of blood vessel thing” (that was the description someone used when talking to me about it once) - what can we do to bring them closer to the circle of the known knowns? Short of sending people to med school, or maybe that’s what we need to do? What can we do to raise external awareness so that more people understand what in the heck this AVM thing is? What is it that has turned TJ from an extrovert who loved to be with people to someone who likes a quiet house and interacting with people through a computer screen?
- And then there’s the outer circle. They don’t even know they don’t know. Many of them are probably deeply caring and empathetic people, but they don’t know what’s going on. For many of them, it’s not their fault. It.is.not.their.fault. How do we change that? Because I believe the only way to make a dent in it is as “we” not as “me.”
So, back in the early '90s when the then Secretary of Defense was talking about bombs and Iraq and such, I believe he was also laying out a framework for those of us who deal with long term significant but largely unseen medical problem. And I believe that if we look at the people around us through that lens, it helps us process and work through the emotional toll that many well-meaning (but not knowledgable) people throw at us.
One of the things about calling this a rambling rather than something else is that it gives me the chance to raise hard questions and to say, “you know, this is what’s going on in my brain right now.” “How do we push back on this?” How do we make things better?
Brainstorm with me, please - because if am all by myself - I’m going to be even lonelier.