One day I was healthy…until I wasn’t. Eighteen years old was a pretty fresh age to have a doctor look you in the face and say, “It’s terminal, and you maybe have two years to live.” Twenty four is a pretty fresh age also to have a central line jammed into your chest (permanently) only to be bonded to a machine that pumps 24/7 medication into your system. When your life literally depends on a pump, medication, pharmacies, hospitals, and now a government that see’s “pre-existing conditions” (AKA –  YOU!) as a financial loss, your mind just kind of drifts off into a wasteland…where your life is being thrown.

My life doesn’t matter to our government. Its true. I’m allowed to say that. I have put my hand over my heart for years singing the national anthem, pledges in school, or wearing flag printed bullshit on the fourth of July having it jammed into my head that I need to be grateful where I live. “The land of the free” they say.  When I feel the tug of the tube that sticks out above my right breast, or glance down at the literal piles of medical bills that I owe for a shitty body I didn’t ask for (and quite frankly can’t afford) I feel not a bit of freedom. When I scroll through my trending topics and see that our “leaders” of America call people like me a “burned down house” (Senator Pat Toomey) and that basically our life is already over, or people like Joe Walsh tweeting back to Jimmy Kimmel that he doesn’t feel obligated to pay anyone else’s healthcare needs. This is the country I live in. These are how the leaders of this country feel about “my kind.”

centralline

So, here I stand somewhere in the middle alongside a country of haters who believe that because I am terminally ill my life is not as important (it’s just expensive) and others who call me insensitive and stupid for not wanting to accept a lung and heart transplant. I mean really people, who has the money for that? Our “leaders” do, but enough about those sorry excuse for humans. I have done everything I can to live my life (despite my diagnosis) and strive to have a productive time while I’m here. I have taught school, mentored kids, wrote and educated about my disease, lived my life in the mountains, and finally this year opened my boutique. Yet all of my efforts, my dreams, my fantasies, my aspirations i look to are thrown into a category of “burned down house.”

I have spent seven years since my diagnosis fighting for my life, whether that be through pills, oxygen therapy, surgeries, hundreds and hundreds of doctor office visits, and now IV therapy. I have spent seven years, mentally, trying to convince myself that my life is worth saving, and that maybe despite my failing lungs and heart that life is possibly beautiful. I feel defeated to look onto our nations people and learn that my life is indeed too expensive to save. That’s America right now. Land of the Free, for an exceptional few.

-haley.

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