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The Heart Problem Chapter
— The Diagnosis
In the late summer of ’09, I passed out in a class. (I was super tired that morning. I’d rolled out of bed without even taking out my retainer. When I opened my eyes to people crowded around me, it was double embarrassing.)
At the hospital, they took en EKG three times. I knew it probably wasn’t great news when they said, “Ummm, no big deal. We just need to take it again.” Uh oh.
I had a really rare congenital heart defect called Wolff-Parkinson-White. I had an extra pathway on my heart that wasn’t supposed to be there. Depending on where the pathway is located and how strong it is, WPW can be a very serious or less series problem. Mine was closer to the serious side.
This question often comes up:
1) How did they not find this when you were younger?
Wolff-Parkinson-White is something you find on an EKG – which is usually not done on younger people. I was told multiple times that they way it’s most often found is in an autopsy. Someone’s heart beats way too fast because their extra pathway starts messing with things. They have a sudden death, and in the autopsy it’s revealed that they had a secret, silent heart problem.
— The Treatments
My pathway was extremely stubborn and in a very hard to reach place. Because of that, a couple of different doctors took a shot at ablating it. 3 ablations – no success. After three, they move on to other methods.
(An ablation is a procedure in which doctors thread a catheter up from a vein in your groin area into your heart. You’re awake during this, and they try to zap out your extra pathway.)
They tried three ablations, having to space them out a little because a heart needs time to get over the burning that’s been done on it.
They had me try medicines which weren’t necessarily the most pleasant. I got an ulcer, etc.
In December I had an epicardial ablation. That’s where they put you under, and you spend the night in the hospital. (I’d already spend multiple nights there during diagnosis and mild complications, but this was the first planned one due to surgery.)
My epicardial ablation was unsuccessful. (I also got a blood clot on my heart and spent some time in the ICU.) With all other options exhausted, open-heart surgery was next.
In March – as soon as my heart was healthy enough for open-heart surgery, the chief cardiac surgeon at Massachusetts General Hospital went in and beautifully fixed my heart. He stopped my heart for about four hours (hence the title of the blog) as a machine pumped my blood through my body.
I recovered really quite well for the most part. I’ve had a couple of hiccups here and there, but nothing serious. Everyone at Massachusetts General took absolutely amazing care of me.
The Post-Heart Chapter
— Moving to L.A. (The First Time)
I was cleared to exercise again and do whatever I good and well pleased in late June. So, after pretty much a year of in and outs of the hospital, my life was mine again… My life that was a bit in shambles.
During that time, I’d sort of been in and out of school. I had to quit all the various jobs I’d been working. I was having a rough time. I decided to take a break from school (an indefinite break as I have not returned).
A) I was kind of known as the “heart girl.” Though no one ever meant that in a mean way, I didn’t like carrying that around – being known for being sick instead of being me.
B) I was offered a job on America’s Got Talent in Los Angeles. My lease was about up in Boston, so I just went.
I floated for a while. I had a hard time in L.A. I wasn’t getting rich as a four-day-a-week production assistant, but I was making it. I didn’t sign a lease. With a job that only lasted three months, I didn’t want to do more than sublet.
When the show ended, I wasn’t finding much work. I went back to the east coast where I got a job on a cooking show.
— Struggling Financially
Once that show ended, I looked for more work, but no luck. I squeezed every penny, but I couldn’t afford to pay rent plus all of my bills.
I had some medical bills I was paying off. (I had insurance, but my bills in total racked up to well over $400,000. Even though insurance paid a humongous portion of that, I had some things to pay.)
I had credit card bills from not having any steady income for close to a year since I had to quit the four different jobs I was working in Boston when I’d gotten sick.
I started transitioning to living in a shelter. I started filling out the paperwork and sleeping in a shelter. (You sleep there first, then they process you. (Although that may not be the case for all shelters.))
The day after I started sleeping in a shelter, I got a call from a friend offering me a job with housing and food as part of the package. I was in Vegas the next day.
— Getting My Life Back Together
Once I had the Vegas job, I’ve been working consistently. I got another job offer in L.A., followed by another one, and another one, etc.
I signed a lease on an amazing apartment where I got a super deal.
By the time I final signed a lease, got a longer-term job, and started settling into a life, it was around October 2011.
— Struggling With My Running Life
I’d been a runner before I knew I’d had a heart problem. I desperately wanted to run again. I knew how good it made me feel. In this whole 15-ish months from being cleared to exercised to being settled in a life I’d try running every now and then. But I’d get SO frustrated. I’d only started running in 2008! I’d gone form a complete couch potato to being able to jog an entire 13.1 miles! It was a truly magical experience when I ran my first half and saw the kind of progress I’d made.
All of that training had been taken away from me. To start back at square one – heck, square zero – was extremely hard. Soon after open-heart surgery I’d get winded walking half a mile. I kept telling myself, “You’re strong. You worked up to being a runner once. You can do it again.” Ultimately, every time I’d been too worried about other things in my life or too generally frustrated to really keep going and improve.
Finally, after over a year – once I knew where I’d be sleeping each night, and I knew I’d have lunch and dinner ’cause I could afford more than enough food for one meal – I thought, “Aurora, you are out of excuses. Get off your butt and start back doing this! You are not a victim unless you decide to be one.”
— Running Again
I signed up for a 5k. I knew if I had an event, it’d be more fun. And it was. I had an absolutely amazing time at the Say No to Drugs race in the Universal Studios backlot. I was euphoric after that race!
I started doing a small race every weekend. The people at work thought it was pretty cool. Some said, “Hey, you should think about doing this every weekend.” That kind of snowballed into “every weekend for a year.” As that snowballing was happening, I was getting back into half marathons.
I thought, “Why not?”
“52 half marathons in 52 weeks sounds like a great time. Let’s do this.”
I decided on a whim and started by the seat of my pants. And I’ve been having an excellent time.
The Running For Charity Chapter
— How Does Marriage Equality Fit Into All This?
The worst part of all the ins and outs of the hospital and having this crazy health problem was not having my sternum cracked open or random wires and tubes and things being stuck in various places on my body. (Awkwardly worded sentence, much?)
The worst part was the lack of freedom – having to drop out of school for a semester once I’d missed something like 6 or 7 weeks, having to take a major break from running which was something I loved, having to quit jobs I loved (and missing out on the money that came along with them).
I got to see people playing in the snow when I was stuck in a hospital room. I got to see people going to class when I was hooked up to an IV. (Wah, wah, wah. Poor me, right?)
For a short time, I had some choices taken away from me. There are people in our country who don’t have certain choices available to them – who don’t have the same rights that others have.
My struggle is not the same. Mine was much easier. Though a year felt like forever (and the year went on to affect me for longer than a year (and still is affecting me in some respects)) – it still had an end. There still came a point where I was free to do whatever I wanted. There came a point when my hospital visits were done.
But for a short time, on a very, very small scale, I got a glimpse into what it was like to have options available to others not available to me.
How is it possible that a segment of our population is not granted the same civil rights as everyone else?
How You Can Take Action
If somehow you’ve made it to the end of this, thank you so much! If you can give to my fundraising page for Broadway Impact supporting marriage equality, that would be amazing – www.BroadwayCares.org/Aurora
If you can’t give (or even if you can) and you could share on Facebook, Twitter – whatever you share on, that would be wonderful.
And whether or not you can give or share, if you’d like to just say hi or anything, you can always comment here or send me an email. Thanks so much for reading!