Megan Crowley: Living the Good Life
A few months ago (during my blog hiatus), Jack told me to listen to a Tim Ferriss podcast about John Crowley. I’m more of a true crime podcast girl, but I managed to pull myself away from Crime Junkies for three or four commutes.
If you’ve never heard of John Crowley, Google will do the trick, but he can tell you much more eloquently in this podcast. He’s pretty much a real-life Superman. He founded his own biotech company, has a Pulitzer Prize winning book written about him, the movie Extraordinary Measures was based on his life, he’s written his own book and served in the military. He has awards, degrees and a story clearly everyone wants to hear.
But this blog is about the not-so-little-girl who calls him Dad.
Megan Crowley is a 22-year-old senior at Notre Dame. She’s sassy, determined and incredibly fearless. You may recognize her. She was the guest of honor at President Trump’s first address to Congress a few years back.
Megan has Pompe disease and when I asked her how it affected her daily life, well, her personality shone through in her response.
“What does Pompe not affect? I can’t walk. I can’t breathe on my own. I can’t eat. I can’t do simple things like brushing my teeth, scratch an itch, or re-position myself for comfort.”
Pompe disease is a metabolic disorder that causes a build-up of glycogen and damages muscles and nerves throughout the body. Basically, too much sugar builds up in the body and makes muscles really weak and makes it hard to breath. Megan and her younger brother, Patrick, both have Pompe and both were given a short time to live when they were diagnosed as toddlers.
In comes dad to the rescue. This is when John Crowley took matters into his own hands and started working with researchers to find a treatment, which he did.
“My dad went above and beyond to be the driving force of the medicine that saved my life. I literally owe my life to him,” Megan said.
I asked Megan many questions about the struggle of daily life with Pompe, but she just doesn’t see it that way. Yeah, so she can’t brush her teeth on her own, but she’s still here, living.
“I do not remember not being on a ventilator or being wheelchair free,” she said. “This is my normal. This is my life.”
Megan’s determination is unique and inspiring because she’s dependent on the help of others. She has a special way of rallying those around her to help her reach her goals and brings out the best in people.
Notre Dame is not exactly close to home for Megan who's from Princeton, New Jersey. It required a bit of extra effort to make sure Megan has the help she needs living in the dorms, but her heart was set.
“[During the visit] I loved the overwhelming feeling of acceptance…Many of the students are the main reason why I now refer to my dorm as my second home.”
Her freshman year, her parents had set up a nursing schedule and had a hospital bed moved into the dorm. With the whirlwind of sending Megan off to college, her parents came to realize that one nurse was not enough to move Megan in and out of her wheelchair. They needed another person to help and didn’t know if they could find someone in time.
When they went back to the dorm about a week later, next to the nurse’s schedule on the wall was another schedule. The girls on Megan’s floor took it upon themselves to be that extra person. They signed up for seven time slots throughout the day to help Megan in and out of her wheelchair.
Her dad describes this in the podcast and thought this was just incredible. Megan has this ability to bring out the best in others. They support her. They learn from her. Her dad gives more examples in the podcast that she’s been doing this her whole life. It’s natural.
Megan is the president of the Make-A-Wish foundation on the Notre Dame campus. She writes her own blog, High Heeled Wheels, and hopes to write and publish her own book one day. After graduation, she hopes to work for Make-A-Wish, the Muscular Dystrophy Association, or Disney.
“Like most women, I have dreams of marrying the love of my life and hopefully creating a family of our own,” she added.
Megan is comfortable in her own skin. A feeling most women in their twenties can’t say they’re familiar with these days. She knows who she is, what she is capable of and is excited for what life has in store for her next.
“Yes, I have Pompe that’s not a secret, but I don’t want it to be a secret,” she said. “I am a typical 22-year-old girl who loves my life and doesn’t want to change anything.”
**All photos are from Megan's blog