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AVM Survivors Network

Facebook asks

Facebook asks, “so what’s on your mind?” Well…

So what do you know?

What’s happening?

How are ya doing?

Lots of people ask those questions. I don’t think they really want to know the answers.

I’m not sure I know how to answer them.

What do I know? How much time do you have?

I know that we live in a very noisy world and if you can’t hear it all, you miss out. Even if you just miss the part you were supposed to hear.

I know it’s an oxymoron to be hard of hearing and overly sensitive to loud noises at.the.same.time. (But it’s true)

I know that saying, “no” is hard to do. But saying no to some things enables you to say yes to others.

I know that the kindness of strangers is a powerful thing.

I know that…

What’s happening?

My youngest started her senior year in high school. My next oldest starts college next week. How did they do that without me getting any older?

I know that “denial” is more than just a river in Egypt. :slight_smile:

Every day there are people around you and around me who are hurting. They don’t need us to solve their problems (at least not most of them), they just need someone to see them, to hear them and to say that they matter.

Kids are starting school - which means people who drive cars near schools need to be extra careful.

Kids are starting school - which means there are a lot of kids who are stressed out - be nice to someone today - they probably need it.

Unseen medical conditions often lead to misunderstood and lonely people.

Someone with a chronic illness, especially an unseen one, is more than their illness and deserves to be seen that way. Relate to them as people first, medical condition second.

If you ask “how are you doing?” Be prepared for an answer. It’s worse to ask the question and not wait for an answer than it would be to just say, “Hi!” Or “Good to see you!”

The ache to be “normal” is very strong - especially in those battling chronic illnesses.

When your “normal” is changed by a chronic illness, it’s a tough thing to have to work through.

When your answer to how you are doing includes a reference to Google, then you know that you are special - “I’ve been dealing with an AVM for 41 years.” “What’s an AVM?” “It’s a problem with the blood vessels in my shoulder, neck and up into my head. Google it if you want to know more.”

And we put one foot in front of the other…

TJ

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on most days that’s all we can do; take it at step by day-by-day.
when someone asks how I’m doing I just say I’m good whether I am or not because everybody has their issues and they probably don’t want to hear about my lengthy list of problems. and to be honest I only say hi I never ask how somebody’s doing as they might tell me… just hang in there TJ and keep fighting!

I have kind of done a bit of a mental compromise with myself. Someone asks, “Hey TJ, good to see you, how are ya doing?” “I’m doing alright. How about you?” Provides them with at least a little insight but also makes it possible for the conversation to end right there and no one is extremely uncomfortable.

As “they” say (have you ever wondered who “they” was? ) I had an English professor who claimed that “they” was the Fraternal Order of Professors based out of a small village north of London. Anyway, they say, “I’m grateful for what I have, because I could have what that guy has.”

I am. Most of the time I remember that the potential risks of not doing surgery had a 90% mortality rating with it. Now, according to the doctors, I have a greater chance of getting in a car accident than I do having a brain bleed.

I’ll take that.

One foot in front of the other…

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