So, you see, there’s this thing…..

(Putting aside the Haiti part of the story and moving to other things)

It’s a thing I’ve known about for 40 years. If you’re counting, that was when I was in 8th grade.

When it was first found that I had “this thing,” really no one in our area of Michigan knew what it was. So we had to go to other places, other parts of the country to find people who knew what it was and how to deal with it.

This “thing” is called an Arterio-Venous malformation. What does that mean? Google
AVM if you really want to know the details of what it is. But here’s the short version of it. There is basically a four lane highway of blood vessels between your heart and your brain. One way carries oxygen to your brain, the other way carries blood from your brain back to your heart.

An AVM is when there are a lot of little vessels running back and forth between the two. They are sort of like the “turn arounds” that are on the highway. I find it kind of ironic that the best example of what an AVM is are gravel roads that say, “Authorized personnel only.”

So what is an AVM? Or more accurately, what difference does an AVM make? In a worst case scenario, an AVM – or more accurately – one or more of the blood vessels (the turnarounds) could rupture and that would be a bad thing. A really bad thing.

The more common symptoms have to do with blood vessels and pressure on nerves. Depending on where those nerves go, it can cause a wide range of different symptoms. Tremors, hearing loss, headaches, vision loss are just some of the type of symptoms that people with AVMs might have to deal with. Oh and it is possible to have an AVM for almost your entire life and never have any symptoms.

Where do these AVMs show up? They can be pretty much anywhere in the body, but they are most commonly known to be in the head and neck because that is where they are most likely to cause the most problems and do the most damage. There are most likely a lot of AVMs in arms and legs that never get noticed and never bother someone.

So, I’ve got one of those things. It first showed up just above my collar bone in my left neck and shoulder. In 8th grade, I ended up having to go to Mayo Clinic (the closest and one of the only places in the country who knew what an AVM was, let alone how to deal with it.) Depending on whether you ask my mom or my dad, it was either a 6 or an 11 hour surgery where they went in and…….. Oh, wait you probably don’t want to know the details of that.

I came home, recovered and went back to life as normal. That was 8th grade, in 11th grade, I met this girl, fell in love and she’s still the best thing that ever happened to me.

I wish I could say that my story with this “thing,” this AVM thing, is done as of 1978. It’s not.

1986

2009

And now 2018

Additional chapters of the story. The story that hasn’t been completely written.

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