Movie-Thoughts.com was fortunate enough to hold an interview with Pulitzer Prize-winning writer Geeta Anand, who works as an investigative journalist for The Wall Street Journal and is the author of the book “The Cure.” Her book was the inspiration for the new movie Extraordinary Measures starring Harrison Ford and Brendan Fraser, and details the incredible story of how John Crowley, a husband and father of three, was able to help find a treatment for his two youngest children Megan and Patrick, who suffer from a deadly muscular disorder called Pompe disease. Geeta herself is a devoted wife and loving mother of two young daughters.
1) How did you come across the Crowleys and their story, and how and when did you become so involved?
I came across the story in 2001 when I was covering the biotechnology beat as a reporter for the Wall Street Journal. A person representing Novazyme, John Crowley’s biotech firm, called me and asked if I’d be interested in telling the story of a father’s quest to develop a medicine to save his kids. I was interested in the human drama and decided to look further.
2) Can one assume that your intense interest and involvement with the Crowleys’ story is somewhat due to you having two children of your own? And if so, in what ways if any did this affect your research or writing?
We are all influenced by the stories of our own lives, so I am sure that having children similar in ages to Megan and Patrick influenced me. But at the same time, I think that the story of a dad moving mountains to save his kids resonates with all ages so I would probably have been interested if I were younger, or older, or childless!
3) What is your current relationship with John and the family? Do you still stay close?
Yes, I am still in close touch with the Crowley family. We have become friends in the course of my writing about their lives.
4) What is the status of Megan and Patrick nowadays?
Megan and Patrick’s hearts are much stronger because of the drug they take that their dad helped develop. This drug doesn’t get into the skeletal muscle cells in a big way so the children’s muscles haven’t gained strength. They are still in wheelchairs and on ventilators, but they continue to lead very full lives by going to the public schools in Princeton, having playdates and sleepovers, and seeing the latest movies.
5) What kind of snags did you run into during your research of the Crowley’s story, if any?
I can’t think of any, or recall any snags if I had them. My biggest challenge was fairly and completely representing Aileen in the book. She’s the mom who dedicated herself to making her children’s lives fun and full at home. In the book, I show the tension between John and Aileen as they pursue very different approaches to trying to save their kids – John going out and trying to build a company, Aileen staying home with the kids day after day and organizing birthday parties and trips to the mall. Showing the struggle of a mom at home with the kids is much harder than showing the drama in the science lab or at a business meeting. Aileen also doesn’t like to talk about herself, where John does so with ease. So I had to work hard with Aileen and her friends and relatives to get them to describe the times when she struggled at home (the times when she was despondent) or else the book wouldn’t have resonated with her struggle and her suffering, and her ultimate joy in her children getting treated.
6) Considering it must have been very emotional for John and Aileen to tell their stories to you so vividly, what was it like witnessing their relationship as you interviewed them?
It was very emotional for them to tell their stories to me. John would look completely wiped out some days after spending a few hours telling the story of Megan nearly dying in a hospital ICU or his venture capital board wanting to fire him. Aileen, too, who is an incredibly upbeat person, broke down once when describing a particularly trying time. I felt badly making them relive such an incredibly tough time in their lives, but it was critical that they do so for me to write a powerful, detailed narrative. By the time I was writing the book, they had overcome the most strained time in their marriage and learned to appreciate each of their very different roles in the family.
7) Early in your book you briefly explain John Crowley’s motivation for wanting to teach his children to have great respect for those who serve in the armed forces, being that John attended the Naval Academy and his father was a Marine. Do you think this message serves to say more about John as a person or as a relevant, albeit tangential, suggestion concerning the time Americans currently live in?
I think both of these things you mention are true – John has great respect for the military, being the son of a Marine and being in the Naval Reserve. And in the times we live in, people don’t always show respect for those who are sacrificing their lives elsewhere and John wanted to be sure his kids understood and appreciated the sacrifice soldiers are making.
8) One quote in your book that I feel sums up the Crowley’s predicament is when John recalls someone saying that “nature isn’t cruel, it’s just brutally random.” Could you elaborate on your personal feelings regarding these words?
I couldn’t agree with this more, and the fact that the Crowleys ended up with two children who suffer such serious disabilities illustrates the truth in this quote. It is just by chance that the parents, two people with the same genetic mutation, had kids – which gives each child a 25% chance of having Pompe. I don’t believe the hand we are dealt has anything to do with making up for sins in a past life, as Hinduism would suggest, or God in heaven deciding that we need to be given a particularly hard or easy ride, as other religions might suggest! I believe our role as human beings is to try to bring happiness into the circumstances we are randomly dealt. This is where religion comes in for me – in telling us how to find meaning and joy in the hand we have been dealt, however easy or hard that may be.
9) At times throughout the book, John notes the ease with which he and his wife are able to communicate with other parents with kids who have severe illnesses. With knowing the Crowleys as well as you do, can you maybe give us your own explanation for this strange connection?
I may have missed the real reason for this connection since I don’t have disabled kids, but the way I saw it people are often connected to others who have similar experiences. Because of their similar experiences, they can more easily empathize with the other person’s predicament and jump in to help.
10) John Crowley seems to have been lucky that he had so many useful connections in his efforts to raise money for research and move his family all over the country. Although I would say you allude to the idea of such coincidences being part of some divine plan, what is your take on John’s fortuitous ability to have a hand in saving his children?
There are so many reasons, as I see it. John has an expansive personality – he reaches out and touches a lot of people around him, so a lot of people in the many places he lived and studied felt a personal connection to him. He’s also smart and hardworking and ambitious, and so he studied at the top academic institutions in the country. In these institutions, he reached out to a vast number of people, many of whom rushed in to try to help when they learned of his enormous struggle.
11) Pharmaceutical companies are often scolded for their focus on the bottom line and viewing their human test subjects so objectively as to convey a coldness regarding their sometimes dire situations. Meanwhile surgeons, say, are relied upon to view their patients objectively because it allows them to focus and deal with pressure. In your opinion, do pharmaceutical companies get too much flak or do you think that their bad PR is more or less deserved?
Sometimes, their bad PR is deserved, sometimes it isn’t. I don’t think it’s possible to generalize.
12) John often reiterates his motto that it is better to ask for forgiveness than permission, and this stance explains many of the things he does in your book. Can you put into words how valuable this credo turned out to be for John and his family? What are your personal thoughts on living by such a cavalier dogma?
Living by that motto worked for John because it meant he was extremely pro-active. I think it was the fact that his kids were dying that gave this motto special resonance. I don’t want to make any particular judgment on this dogma. When people are fighting for survival, I think this dogma becomes life-defining-and sometimes life-saving, as it was for Megan and Patrick.
13) In your Afterword you make the claim that “As human beings, we are defined at our core by how we respond to hardship.” When exactly did you come to this conclusion and, considering it true, how would you define yourself?
This thought occurred to me as I wrote this “afterword,” striving to understand the larger meaning of the book I had just written. My life has been far less difficult than the Crowley’s, but I think this conclusion still applies to me. I don’t have any interesting enough hardship to briefly describe here, but my experience in meeting and interviewing people is that those who are spiritually and emotionally more developed are those who have encountered and somehow managed to overcome extreme hardship.
14) With your book being adapted into a major motion picture titled Extraordinary Measures, what would you like to say to film audiences who are wondering what makes this story either as or more inspirational and incredible than this year’s earlier popular releases The Blind Side or Invictus?
Alas, I haven’t seen these two movies so I don’t know whether Extraordinary Measures is more or less inspirational. I have now seen Extraordinary Measures twice and I think it is truly inspirational in illustrating a family’s struggle in the face of extraordinarily difficult circumstances.