Replies to This Discussion

Permalink Reply by Kellie on February 15, 2012 at 9:07pm

Erin - my response to that remark would be to tell your former coach that every AVM is different and in a different location, meaning that it affects different areas in different ways. No two people with the dx are the same.

For people that really do not understand what an AVM is, I tell them I had a stroke. Ask the coach how soon she would be flipping through the air and moving quickly on the floor after she had a stroke.

And i wonder what her opinion would be if the football player dies next week? She might change her view.

Keep your chin up, the questions will get easier to field.

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Permalink Reply by Wendy T on February 15, 2012 at 9:23pm

I wouldn't have been so nice. I would have told her she is an idiot.

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Permalink Reply by emschi3 on February 16, 2012 at 8:11am

I agree with Wendy!!! Sometimes it easy for people who are not living with this to make silly statements like that; you should have asked her would she like to trade places?

Leo

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Permalink Reply by Anita Hopson on February 22, 2012 at 5:38pm

Same here!! I use that word alot!

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Permalink Reply by JH on February 15, 2012 at 10:02pm

I agree with Kellie--try saying AVMs are all different, and you have to go by what your doctors say. The brain's very delicate for a VERY long time after any kind of operation, so you're absolutely right that you don't need any hits on the head right now.

I hope the coach was trying to "inspire" you instead of to pressure you, but it sounds like you're doing a good job of taking care of yourself without that kind of "help"!

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Permalink Reply by Armand on February 15, 2012 at 10:32pm

I've learned to take it easy on trying to convince someone else of something they don't agree on. This can be a lot of wasted effort. If someone is so casual about my health that they take information learned on the TV, I'd like to put a little more space between me and them.

On the other hand, now you can work with other people and use your learning from the cheerleading to help you. I've always found it amazing how my knowledge of gymnastics helped me deal with people in other areas. I've found that knowledge to help me in dealing with people in China or in factories in the US. You could use that knowledge in other areas also.

Maybe some day in the future, that person will think of you as a human and ask how you are doing instead of just treating you like one of their team members. I'm learning to go ahead and move into my new world with my AVM. It's not always easy, but it's the only way I can go.

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Permalink Reply by Manux on February 16, 2012 at 3:29am

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ModeratorPermalink Reply by Lesley S, Queensland on February 16, 2012 at 4:24am

Hello Erin, I have found that those who haven't "been there, done that", (or going through it) have absolutely no idea about AVM's. As others here have said, every AVM is different and of course your former coach has only listened to what she has heard on T.V. and thinks she knows about your AVM!!
I have met only a very few people who have asked me about what has happened to me and even fewer who have wanted to listen. Over the 2 and a half years since my surgery & brain damage, I have learnt to do what I can, when I can, and if others don't care and have a problem with my injury, it is their problem, not mine my young friend. Keep on "keeping on" Erin and all the very best to you.xx

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Permalink Reply by Lisa on February 16, 2012 at 6:56am

So much I could say. However to preserve my integrity I will only say, "Consider the source!"

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ModeratorPermalink Reply by Trish on February 16, 2012 at 9:19am

That's the most ridiculous article I've ever seen! No wonder people don't take us seriously! Comments like "it's good to know this condition won't affect his life or career" Are you kidding me?!! I always try to educate anyone that asks me about AVMs. Usually it's met with blank stares, but every once in a while some little piece of information will get through and there's a big "Oh Wow" moment. This article on Patterson certainly doesn't help.

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Permalink Reply by Erin Kamery on February 16, 2012 at 9:20am

Thank everyone I'm glad I'm not the only one to get these questions. This was more than a vent than anything and as my mom said consider the source. Just to clarify she only owns the team (does the business end) doesn't coach, if she was the coach I probably wouldn't have stayed as long as I have, her and I have always had a love hate relationship even before I started dancing and cheering at the studio she opened.

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ModeratorPermalink Reply by Louisa on February 16, 2012 at 10:05am

Dearest Erin...What I was going write was already said by your AVM friends. Every AVM is different, every treatment is different, every recovery is different...My thought is to just ignore her ignorance...and just have faith in your neurosurgen! Stay strong, Erin!

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