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AVM Survivors Network

Rambling Part #3 - Donald Rumsfeld and AVMs

#1

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:

  1. 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.
  2. 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?
  3. 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.

TJ

#2

TJ,

Good evening!

Very good ramble. Mr Rumsfeld is oft quoted but not often as usefully, I feel. Good set of thoughts. I think I agree with you on all points but what can I offer?

My experience to date is not as deep and difficult as yours (and I note your encouragement in another thread never to compare myself with someone worse off and think “I must be OK – look at him!” because I agree that we are all equal in this and I want everyone to be able to say what his or her pains, worries, concerns are and stand shoulder to shoulder with each other: no ranking of any kind.)

So my experience is this… When I got my diagnosis, it shot something of the bottom out of my world – same as I think it hits each of us – and some of the support I needed was just emotional, recovery from that shock, learning about it all and resetting my outlook on life a bit. I was mortal, for the first time.

I could have bottled that up, but that isn’t really me, really.it.isn’t, and so I needed to talk to people about it. Needed some means of coming to terms with it. And it was giving me some jip: it wasn’t just lying quietly in the back of my head, doing nothing, it was making me feel dizzy and weird and making washing machine sounds in my ear and a big pulse on the back of my head – one that would lift my fingers if I pressed. OMG.

So, I talked to nearly everyone about it. To the extent that I had to check with people what they already knew to avoid repetition when they asked me how I was doing. I felt safer because people around me knew I had a stroke risk. They might not all get every aspect of it but I think they got that I had an increased stroke risk and we talked about what to do if someone had a stroke – recognising symptoms and all that jazz.

So I think I’m saying that I just went straight out and evangelised about AVMs to anyone who would listen. I don’t think too many people reached the “OMG! Not him again… let me walk on this side of the road past him” but you never know. I feel people took an interest in me, in my weird condition, and tried to understand about something none of us ever believed existed. And I think a few people migrated slightly from unknown unknown to some degree of knowledge. I hope they learnt a tiny bit more about the wonders of the (anatomical) world.

I do think my work environment is very open in our relationship with each other. I was confident I could talk openly without people marking “no promotion prospects” in their little black books, as it seems some people keep; and that feels culturally different in the US to me. I tested that at my work and found it encouragingly supportive. But I would encourage people to get past that weather-and-sports level of conversation and talk about real life. Because when you do, you discover so many people with challenges of their own opening up, or who have friends or relatives who’ve been through similar things – I found two people who had made it nicely through a craniotomy, for example, and so many people over 50 have vertigo, it really is common.

So my incitement is to just try.

Talk about it with people, if they are interested. Poo poo the idea of just polite conversation and ask them about their own knowledge of long-term medical conditions. Do they know other people with long term or hidden conditions, and how they cope? Talk about people they know rather themselves. Use terms that they might recognise. I work in the gas industry, so I talked about arteries as a high pressure gas network with steel pipes, injecting gas at high pressure into a low pressure polyurethane pipe network, with no pressure reduction stations: direct connect from one to the other, with the flow being pushed the wrong way down pipes and all that. They got that.

A lot of this is about coping, isn’t it? So while we can’t usually expect to find someone who has an AVM or someone who has had a brain tumour or a stroke or anything that carries some of the same risks or issues or worries, you can ask about whether they know people who have any long term health issues that get them down, that they have to cope with (and probably do so quietly without bothering other people). How do they deal with that, whatever it may be?

I think its a positive thing. I think it has the power to create stronger relationships with people. We just have to be brave and subtle enough to start the conversation and see if that person has some experience of difficulty that can shed a little light on our own path.

And the people that veer away suddenly if they feel the conversation going into difficult places? Either need a bit more support to get there or are very, very shallow and perhaps better off as unknowns? :smile:

How’s that for a ramble back? You’re not alone.

Richard

#3

Richard,

I don’t remember exactly when, but approximately 5 or 6 years ago, my family and I switched churches. We left the church I had grown up in - white, middle class, comfortable, but never in the mood to take on the tough things of life.

We didn’t move ourselves, we just increased our commute to church and attend a multi-cultural, very diverse church in what many would consider the “edge” of the bad part of town. When we left our former church, 2/3rds of the non-white people went with us (my youngest two are Haitian Americans and they definitely are not white). At our new church (which is currently 110 years old) approximately 41% of the attendees are white - the rest are well, not white.

Spiritually, it was the best thing we ever did, well almost. And you know why? Because we went from a church where it was not okay to not be okay. Think about that a minute. It was not okay to not be okay. So if your son lost his job, it was not okay to be worried about him and the list could go on and on. The church we left was not bothered by Ferguson, or immigration struggles - those were just “news.” Our new church home lived those struggles. And they embraced each other in their struggles. And they readily admitted that they might not understand what you’re going through, the fact that you are hurting is enough for me and I will stand with you in your suffering. I have had people inquire about my health and then stop in the middle of the church lobby and in the parking lot when it was snowing - “T, I want to pray for you right now.”

It’s okay to not be okay.
You don’t need to be worried about what others think when things go wrong for you.
You don’t need to worry about whether you look “nice” enough for church - because the guys sitting in the back row came from the local homeless mission.

Now, I’m not recommending that we all acquire the dress code from the local homeless mission, but in many ways, that’s what we want here. We want it to be okay to not be okay. We want to be able to say, “What I’ve written here today is the sum total of everything I’ve accomplished because I’ve just felt too lousy.”

It’s okay to not be okay and we need to foster that feeling and that openness.

Richard - you ever make it stateside or I come across the pond, the first drink is on me - as long as it isn’t a $400 bottle of wine!

This, this is good.

TJ

#4

I completely agree. And I wouldn’t go for $400 of wine but if the place we meet is for some crazy reason rather expensive, I’ll buy the wine. Not that I’m rich. I just think you’re worth it.

I’m very “vanilla” and probably should go more out of my way to find more in life to learn, like you commuting to a church on the other side of town. As a younger man, I volunteered as a policeman in my local town for a number of years – you can do it in the UK, and not get paid, you really can – and I saw a better balance of real life by doing so. But you remind me that I’ve settled back into a very ordinary, comfortable, middle-class, perhaps not plain “white” but only freckled life, with less sight of the real world.

It is good to be a more interesting flavour.

Good nudge, thank you.

Richard