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Thursday, November 10, 2016

This is Illness in Trump's America.

I am never allowed to forget my illness. I am never allowed to turn away. Every day when I wake up and walk over to my painstakingly organized pill box, I am reminded. Every time I have to plan life around a different specialized doctor’s appointment, I am reminded. Every time a happy occasion or a night out with my friends is ruined by extreme pain, I am reminded.

And now, every time I turn on the news and see our new president-elect, I am reminded.

I am reminded that (half of) the American people chose to elect a bigot. A man who mocks disabled people, who speaks about people from other countries in a way that is terrifyingly similar to Hitler, who has sexually assaulted women. And a man who has stated again and again that one of his first acts in office will be to repeal the Affordable Care Act.

While the term “Obamacare” gets thrown around a lot, I’ve found that in conversation many people don’t actually seem to know what it means. While I am not on Obamacare, I do benefit immensely from some of the law’s major tenets. “Benefit” feels like a funny word for it, though –– benefit implies I’m getting something fun and extra, like a cupcake or a 401k. The “benefits” I receive from the ACA keep me alive and well enough to live a life that most people take for granted.

Thanks to Obamacare, companies can’t discriminate against me for my pre-existing condition. Without this aspect of American healthcare, I could easily be refused insurance by any company simply because I am actually sick. Obamacare also bans providers from instituting lifetime caps on benefits. Under the previous system, insurance companies would cover you up to a certain dollar amount, and then you were on your own. Spoiler alert: short of actual millionaires, I don’t know of any chronically ill or disabled people who can afford to be on their own.

So on election night, after they announced Pennsylvania, I cried. I cried openly and without abandon, and I haven’t stopped much since. I cried for women’s right to choose. I cried for gay couples who will have people trying to invalidate their love. I cried for Muslims, and for Mexicans, and for black communities everywhere. And I cried for my future.

I cried because I was the first kid in my class to learn how to read. I cried because I was the one who won the spelling bees, and kicked the ACT’s ass, and stayed up past my bedtime reading about presidential history and how we invented peanut butter. I cried because I have never stopped working hard, whether it was getting a 4.0 my senior year on 19 credit hours or beating out thousands of other young writers to secure an internship with a national news publication. I cried because I am 24 years-old working in a great job that I love and am good at.

I cried because all of that could be for nothing.

If the ACA is repealed and replaced with what the Republican Party says they want (which seems to be either a. nothing, or b., a plan without the concessions that chronically ill people need), I will hit my lifetime cap. I will hit my lifetime cap faster than you can say “pre-existing condition.” In addition to the expensive tests and procedures I get on a regular basis, I am on a medication that costs upwards of $30,000 every 8 weeks. It’s not hard to hit a benefits cap when that’s what you’re working with.

In Trump’s America, I have to pay $15,000 a month out of pocket. I cannot do that, as most people can’t. My only choice is to go off of my medication. Without my medication, I am not well enough to work. I become bedridden and have to go on disability. The little girl who raised her hand too much and always did the extra credit becomes the adult woman who can’t work. This is Trump’s America.

The past few days I’ve been thinking about what I want for myself in life. It’s not a long list anymore. I want the opportunity to be well. I want to opportunity to work hard, and save my money, and be financially free and independent. I want to be able to support my own children someday. I want the same things that everyone else has the opportunity to have. I don’t think I’m asking for much.

So while the past few days have been spent mourning the progressive and inspiring next-four-years we could have had, I no longer have time to cry. I have to work. I have to talk to people, and tell them what’s at stake.

I have to make sure I don’t let down the little girl who won the spelling bee. She still has work to do.

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