If my life were a summer block buster I would have to call it “One Day At A Time.” Yes I know that it was a television show but that is the way I live. With Chiari Malformation sometimes you are feeling great sometimes you wished you could just make everything and everyone go away.
The actress that would portray me would have to be Olivia Wilde. I say this because she is a great actress and she has the same hair, eye and skin tones as I do. My son would be portrayed by Thomas Horn from Extremely Loud and Incredibly Close, he is the perfect match for bub.
Actress Olivia Wilde on the Tron: Legacy panel at the 2010 San Diego Comic Con in San Diego, California. Please attribute to Gage Skidmore if used elsewhere. (Photo credit: Wikipedia)
Extremely Loud and Incredibly Close (film) (Photo credit: Wikipedia)
Since the show House had a situation with ACM I feel that Olivia would understand the logistics of my condition but she would have to study hard to understand exactly what it can do to a person. She would also have to understand on special needs children and how the disabilities do not always agree with each other on which issue will arise on any particular day.
We would sit down and chat about how ACM has affected not just me but my family and the struggles that we have been through trying to get help through it all. Thomas would be the perfect actor to show how children of all kinds deal with health issues. They would be proactive with the ACM community as well as be a strong advocate for ACM and other issues that ACM can bring.
Olivia would be able to watch a decompression surgery to know what the neurosurgeons do to hopefully alleviate the symptoms that go along with ACM. They would also do a public service announcement with the information and statics of how many suffer from ACM to help spread the word around the world.
What is the ending you ask? Well it is still being written so it is open ended at this point, stay tuned to see what happens next!
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14 comments
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Johannah
May 23, 2012 at 7:33 pm (UTC -4) Link to this comment
Well, whatever the ending is… I hope that’s it’s a happy one — none of that sad stuff for me!
Cristina
May 24, 2012 at 10:28 am (UTC -4) Link to this comment
I had never heard of ACM. Like so many debilitation diseases I think if it doesn’t affect us sometimes we try to think that it just doesn’t exist. I think a movie would be a great way to show what ACM is and how it can affect a family!
Heather
May 25, 2012 at 1:08 pm (UTC -4) Link to this comment
As a disabled nurse when I was in school I was never taught anything about it so I felt completely dumb when I was diagnosed!
Melody
May 24, 2012 at 4:23 pm (UTC -4) Link to this comment
I have never heard of ACM, but I hope that your ending is a happy one!
Heather
May 25, 2012 at 1:08 pm (UTC -4) Link to this comment
Thanks Melody!
Diane N - Philzendia
May 24, 2012 at 9:14 pm (UTC -4) Link to this comment
This is the first time I’m hearing about ACM. A movie would be a great way to raise awareness about this condition. I hope that the ending is a happy one!
Heather
May 25, 2012 at 1:07 pm (UTC -4) Link to this comment
ACM is rare in the fact that it gets set off, there are many people that are born with it and never have a symptom so they have no clue they have it. Raising awareness for it is one of my advocacy roles!
Becky Willis
May 25, 2012 at 12:20 am (UTC -4) Link to this comment
I also agree that your ending needs to be a good one. I also agree with Diane that a movie should be made to raise awareness.
Heather
May 25, 2012 at 1:06 pm (UTC -4) Link to this comment
It truly does need to be a happy one!
Sadie
May 25, 2012 at 8:25 am (UTC -4) Link to this comment
I’ve never heard of ACM. Thanks for sharing this post.
I was very disappointed in that Extremely Loud and Incredibly Close movie.
On a side note, I think it’d be fun to make a post like this.. with who would play me, my kids, etc.
Heather
May 25, 2012 at 1:06 pm (UTC -4) Link to this comment
I was and I wasn’t disappointed, it just depended on the scene. As a great actor to portray a child with Asperger’s Thomas did wonderful and I believe that is what I paid the closest attention to. That and How Sandra Bullock portrayed the mother comforting and knowing where/what he was doing all along since I do the same with bub!
manda
June 1, 2012 at 2:02 pm (UTC -4) Link to this comment
I love the idea of this post!! I too have never heard of ACM, but I want to educate myself on this. You are doing a great job raising awareness!! I hope your ending is a very happy one!!
Emeline
June 28, 2012 at 3:12 am (UTC -4) Link to this comment
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Cialis
August 15, 2012 at 7:54 pm (UTC -4) Link to this comment
Thanks for sharing the information with me, I will return every month to read more.