This day was full of information...and nerves. We were given a list of four asks to work our story around, and the one that called my name was ACA mandates. If you follow me on FB, I generally avoid politics with the exception of healthcare.
Here's the deal. When Trump ran on a campaign to repeal ACA, I was terrified. I know the ACA isn't perfect, but there are specific mandates that provides those with cancer some much needed relief. And it wasn't until weeks after the election Trump stated he would keep the mandate on pre-existing conditions. That provided some relief; but when you're fighting chronic cancer, the mandate on lifetime and annual caps starts looking like your own personal expiration date. Real. Talk.
To be clear, we have fabulous insurance. Blue Cross Blue Shield even assigned a case worker after each major surgery to call and setup home healthcare if/when needed. It's great...as long as Fred is never laid off or wants to find a new job. And that is why I feel like such a burden. Because finding a job becomes all the more difficult. Say he finds a dream job, but they don't offer fabulous insurance...he'd be giving up a dream, for me.
The other reason I "get rowdy" about healthcare is for you - your family - your children. Because I have the perspective of the great big scary c-word, and no one thinks it could happen to them...until it does. Because when facing a scary diagnosis, whatever it may be, your energy should be focused on healing. And if it takes my chemo brained bald head going to the Capitol to advocate and improve even one life, I'm going to do that. I love you! You are worth my time and energy!
Okay, stepping off the soapbox...
While the ACA asks called my name, I had trouble wrapping my head around it and getting my story out. We practiced, I flailed. Not fail...flail! But I did get emotional. The tears come so easily now. When I tell our story, images from my dad's diagnosis to my own flash through my mind. The incredible kindness we have seen and received because cancer. The hurts. The beauty. The triumph. Yeah...emotion comes easily, in a good way. I wear my heart on the outside now.
Just when I thought we were getting down to business, and the tears had ended...they got me again. It was called "Sparks of Strength" a luminary event. I should have known from the name. For this event one-by-one we speak the names of who we are fighting for, and light a candle. My goodness the snot. By the time my turn came it was pouring out of my nose. (One of the post-chemo effects, runny nose...add tears and it's like a fountain.)
My dad.
Myself.
And Patsy.
I haven't spoken of Patsy Petzold in a while. In fact, when she passed, I didn't even mention it on Facebook. I couldn't. I was heartbroken. Patsy was the first colon cancer survivor I reached out to through email. As my first cycle of chemo came to an end, amid my celebration, she learned her maintenance chemo stopped doing its job. I initially reached out to Patsy because of how similar our stories were, from birthday to diagnosis dates, our stories matched exactly two years apart. In the very brief time I knew her, she mentioned her work with FightCRC, and her plan to attend Call-on Congress. She was unable to make that trip.
My story was unique, and based on the election results (and my fears previously discussed), I was ready to tell my story and fight to improve the lives of others. So when I saw the scholarship opportunity, I jumped.
I am here because of Patsy. I'm here because daddy gave me a story worth telling. I am here because my Knight gives me the love and energy to fight, every day. I am here because God isn't done with my story, and my goodness, what a beautiful story He is writing!
To Patsy's family, I hope you find comfort in knowing even a brief conversation with Patsy left a lasting impact. Her light was that strong! And I promise, as long as I have breath, I will carry her light with me as I advocate to improve lives.
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