Getting people to understand

Over my winter vacation from college i decided to go to one of the local cheerleading competitions that my old team was competing at. As many of you here might know when I was diagnosed my neurosurgeon told me no physical activity especially cheerleading because being a base for the stunts I used to get hit in the head on a regular basis. While I was at the competition I got alot of question, as I expected. I don't really like getting asked all the questions, but I've learned to get used to it. The only question that really bothered me came from the person who owns the team i used to dance and cheer for who is also my friends mom and my moms friend. Her question was, "So Erin, are you ready to come back?" I responded by reminding her I wasn't supposed to be doing any physical activity. Her response, "well a football player did it." I think the publicity Mike Patterson the Eagles player that was diagnosed with an AVM at the beginning of the season has caused more confusion and misinformation among the public than anything. How do you go about telling someone, "Well the news is wrong, an AVM is a serious condition" when everyone is so influenced by the media.

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.

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

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"!

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.

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

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

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?


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.

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.

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!

Dealing with the media is an uphill battle. Rather, the question and following statement (while ignorant) seems an oppotunity for AVM awareness. It's is frustrating. Yes, it is tempting to say the first thing that comes to your mind. It's perfectly ok to feel that way.

Every AVM is different and we don't really know all the circumstances surrounding Patterson's AVM. (Thanks JH) No, I don't agree that he should still play with the AVM still there. I mean football involves hitting, right? But, in presenting your story and the reasons you are not coming back serve only to educate. The media will eventually catch on (or not) But I also agree with Trish, this article on Patterson doesn't help... suggestion...there is a suggestion to respond at the bottom of the article...just a thought. :)

I tried to respond to the article but I couldn't find a place to do that. I did however cllick on the author's name which gave me his email address. So, I sent him an email pointing out his ignorance and inviting him to learn more about AVMs through the TAAF and this website. I don't know if I'll ever get a response but I felt better in doing it!

Let me know if the author responds

Hi Erin. I was shocked that the doctors have given him the green light to go back to football. I sincerely hope he does not have a bleed. Yes…having an AVM is a serious life threatening condition.

Erin, the author did email me back. This article is the last of a series of articles written about Mike Patterson. In the others he does go in to a bit more detail about what AVMs are and some of the various treatments. The others say more about what his neurosurgeons are saying about his specific case. If you're interested I'll post the links to the other articles.

Hey, I just read the first post, and the posts about Trish's email (thanks!). I would be very interested in reading these other articles you mentioned.

My first thought on this: Although Mike Patterson might make it hard for people to understand how serious AVM can be, the global situation will still lead to more people knowing about the disease in general - which is a good thing. I will watch the development of this story with curiosity. Is he a famous person in the US ?

You're a Lakers fan so I guess not a Philadelphia Eagles fan, no? He plays for the Eagles.

no, it is a pseudonym. I know nothing about basketball.

edit: or american football.