Last week for Purim I dressed as the ever lovely and ever iconic Rosie the Riveter. I can humbly say that I pulled it off and totally rocked it. It was fun to put life aside for a day and be able to channel someone else.
It was truly by irony that my costume was of someone who was attached to such and inspiring motto. I didn’t even think about it until I was getting ready to post the pictures. It was kind of apropos that it all worked out the way that it did.
Today I will be having my 5th heart catheter in a two year time span and the motto that keeps running through my mind is,
“We can do it!”
That’s the motto for trying to fight this otherwise “unbeatable” condition. The knowledge that I can do it, that I have this inner power to be strong and and try to overcome is pretty amazing.
Bringing it back to being apropos; I was planning on sharing a piece from my book with you all today as a way to mark having lived with Pulmonary Arterial Hypertension for over a year now. The whole theme within that piece was, “We can do it!” The we not only encompassing myself and my family and friends, but the most important we– G-d and I. And so it only seems fitting that last week I was Rosie.
Here is the piece about this past year, and how we’re going into year two full force:
A whole year. 12 months. 365 days. 52 weeks. 525,6000 minutes.
That’s how long I’ve had my world turned upside down, it’s how long I’ve had to process my ticking time bomb, and it’s the amount of days I’ve had such a sense of fear and relief.
A year ago, when I was diagnosed with PAH, my world came crashing down. But finally we had the ability to have a name placed with what was causing me such pain and strife, and that was the biggest blessing I could ask for. I’d been begging G-d to give us an answer, and He did. It wasn’t what we wanted or hoped for, but we got it. Sometimes your prayers are answered in ways you can’t understand.
It’s taken me every single one of those 525,600 minutes to try and process what’s going on, and I don’t think I have.
I did something on Instastories while I was in California and dubbed it #BeachTalks. It was basically me talking to the ‘world’ about this past year; the fact that there was about an 80% survival with PAH through the first year, and then statistics drop down to 30% the second year. I spoke about fighting and I spoke about faith, and I spoke about making it through. If I’m being transparent here, I must confess that it was a lot of lip services.
I am scared. My faith is strong, but when it comes to this, it’s rocky and uncertain. The idea of continuing to fight is terrifying and exhausting, and there’s a daily battle of if I want to continue or not. It never really felt like it was an option not to fight, even though my head and heart were dreading it, my body has taken the lead. When they expect one thing to occur, another thing happens. They are fascinated by this case of oddities.
I’m an anomaly they can’t figure out. While that was the coolest thing when I was younger and made me feel special, now it’s just problematic. One year later, and I still fascinate them more than ever.
Do you all know the song, “Live Like You Were Dying” by Tim McGraw? If not, go listen to it this second. No, really, drop the book and go listen to it. This song was the first song I listened to after I got my diagnosis and my prognosis and it really made me take stock of everything in my life, and what I wanted to make of it in what little time I could potentially have.
I made a bucket list, and I set out to achieve getting it all done.
Life is short, this past year has taken me through a tailspin of emotions and adventures. I’ve laughed harder, allowed myself to enjoy eating (I’m looking at you kosher places out in NY, LA, and PHX), had more #TreatYoSelf moments than my bank account and I would like to admit. I’ve cried in my best friends arms a lot (sorry about that), and started trying to see the world… or at least parts of it.
We’ve now stepped into new territory; a territory where statistics plummet and faith in G-d sky rockets.
I have no clue what the next 365 days, 12 months, 52 weeks, or 525,600 minuets will hold. I pray that I’m able to live each day to its fullest and make even more out of year two than I did out of year one.
I’m scared. I’m hopeful. I’m anxious.
This is year two. Let’s do it.