Thursday, July 22, 2010

The Cure of Extraordinary Measures

The Cure by Geeta Anand was such a good book.  The movie, Extraordinary Measures, is such a compacted, Hollywood-ized, watered down version of the true story it’s based on.  The screen writers took an amazing story and simplified and fictionalized the major storyline tying up the conflict and resolution with a neat little bow.  Except for the Crowley family, there is not a single character in the movie cast that I recognize from the book.  The movie characters are actually several people all smooshed into one fictional character.  I’m surprised that John Crowley and his daughter Megan were filmed for short behind the scenes clips for the movie’s bonus material.  The movie is so loosely based on the truth it’s disappointing. 

Most movies are a disappointment compared to the book.  This is not newsworthy.  So let’s move on. 

The book was written by a reporter for the Wall Street Journal.  The story is so amazing it writes itself into a bestseller.  But even then I was very impressed with how well it was written.  She didn’t focus only on the heroism of John and Aileen Crowley.  She painted a full picture of what a struggle their lives have been.  My favorite scenes were the ones where she showed John and Aileen’s meltdowns.  That’s real.  Getting up in your 4 year old’s face in a store screaming that you don’t care she’s on a ventilator, she’s not getting the cards she doesn’t need – that’s real. 

Maybe that sounds weird to like that part of the storytelling.  The story could have been told much differently.  Anand could have showed how difficult and time consuming it was to keep the kids alive every day and that Aileen did it, with the help of nurses, day in and day out.  Then show how hard John worked at building a business to find a cure or at least a treatment for the disease threatening his children’s lives.  It would read like a fairy tale.  Instead Anand showed more reality.  She shared the stories where perfect Aileen lost it in the store and perfect John was too preoccupied to wait until he got to the locker room before removing his wet bathing suit.  She showed their jealousy of “perfect families” and jealousy of other children receiving treatment before their own did. 

Aileen’s dream was to be a mother and nothing, not even an incurable fatal childhood disease affecting two of her kids was going to stop her from just being a mom.  She packed up her kids with their ventilators and took them to the park.  She made vacation arrangements.  She bought parenting books when she was frustrated by her kids’ personalities.  She did everything a normal mother would do.  She also happened to know how to reattach their breathing tubes when there was a problem. 

The kids almost didn’t realize their disabilities because everyone around them treated them like any other kid.  This is how I was raised.  To focus more on ability than disability. 

What I was most impressed with was John.  Everyone thought of him as this self centered arrogant jerk.  For one reason or another people finally saw him for who he really was.  A goal oriented father racing the clock to save his children.  In those ah-ha moments they would realize that they would do the same thing in the same situation.  He was so selfless.  The carrot of a clinical trial was held in front of John for years.  In all that time his efforts paid off for other children and other families and John quietly waited for his own children’s chance. 

This is when I get all religious on this story.  After reading the book and getting a feel for who John and Aileen are, I believe that God had His hand all over this one.  I found it interesting that in the beginning of the book John didn’t believe that God handpicked people for specific challenges.  He was referring to the idea that God never gives more than one can handle.  John believed that challenges were simply a part of life.  God had nothing to do with it.  I disagree. 

I think John and Aileen were specifically chosen to have the children they have with the challenges they face because nobody else could have done what John did to jump start treatment for Pompe disease.  Nobody else could have waited the way he did.  But it was because he had to wait for his children to receive the Special Medicine that he stayed motivated enough to keep the company going.  Amazing things came out of that waiting game and the push to get the science just right.  It worked out the way it was supposed to.  That’s what I believe.  I believe that God wants us to discover solutions to problems.  He picks the right people to get the ball rolling. 

I’m still on the fence as to whether or not I believe insurance companies and the medical community overcharge patients.  It can be frustrating when the very things a person needs to survive are out of reach financially.  Sometimes people will not be compliant with their treatments because they can’t afford it.  My mom is an RN and she sees this every day.  I live it every day.  Being diabetic is not cheap.  It was very interesting to see the other side of the story by reading The Cure.  I had no idea how difficult and expensive it was to make something that would extend a person’s life and ease suffering.  It all comes down to money.  Everyone wants a piece of the pie so costs go up.  That’s life.  I don’t think that will end any time soon. 

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