I'm Done Begging The GOP To See Me as a Person.

Jokey is my default setting. I very much subscribe to Sara Benincasa’s notion that if you can laugh at the worst moments in your life, you can transcend them. Even when the going has gotten really tough, I’ve maintained a certain level of sarcastic detachment about it all.

There have been a few occasions in life where putting on the humor mask hasn’t worked for me. One of those times was on election night. Another one of those times was this afternoon.

I have a lot of problems with the current political administration. I abhor their treatment of immigrants, I am frightened by their attitudes towards women, I fundamentally reject their loose grasp of science. There’s one issue, though, that gets really personal for me, even more than all of the rest. That issue is healthcare.

I’ve been especially angry lately, because sick people like myself have a lot to worry about from day to day. We have short term worries, like whether or not our blood work will come back okay or how we’re going to pay for groceries and this month’s prescriptions. We have long term worries, like whether or not our disease will take away our ability to have kids, or whether the meds we’re on for one condition might end up causing another.

But for the 217 members of the House GOP who voted today to strip millions of people of their access to affordable healthcare, those worries are not enough. They want you to worry that you’ll lose your house paying for your sick kid’s procedures. They want you to worry that you’ll die because you can’t afford your medication. I don’t find it one bit dramatic to say that if this legislation passes through the senate, people will die. A lot of people will die. They want you to know that because you got sick, even if it was entirely random and out of your control, that you don’t deserve your life. And they want all of this because it will get them tax breaks and a pat on the back from a president who barely knows basic geography.

Making pre-existing conditions uninsurable is turning non-lethal diagnoses into death sentences. It’s keeping diabetics from affording insulin, asthmatics from paying for their inhalers, and autoimmune patients out of reach of life-saving biologics. It’s telling me, a fairly accomplished young woman who happens to have a disease, that my life matters less than tax cuts. It’s telling a 5 year-old with cancer that even when they beat the tumors, they’ll spend the rest of their lives battling to keep a roof over their heads because they hit their lifetime benefits cap before they were old enough to drive.

But as angry as all of this makes me, I think today, an overwhelming feeling over despair took the place of anger. I truly believed in the last few days that this wouldn’t happen, because at least a few of those 217 people who voted yes would realize that they were harming real people. But then they didn’t, and I sat at my desk watching a livestream of politicians cheering as they sent millions of families to bankruptcy and patients to their death beds.

I’ve never felt more dehumanized than I have by this administration. They’ve made it perfectly clear, from their votes to their celebratory, “we just ruined the life of sick kids!” beers, that people with illnesses and disabilities are not worthy of life. They’ve made me beg to be seen as a whole person, and even then, they told me “we disagree, you are not.” They’ve gone on TV spouting narratives that sick people are lazy, that we’ve done this to ourselves by not taking better care of our bodies, that paying to keep your fellow humans alive “isn’t their problem.” And no matter how many good people you know exist in the world, I don’t have a humor mask to hide the way it feels to be told by your country that you are sick, and you are therefore not worthy of the basic right to life.

Tomorrow I’m going to try to re-channel the anger, because that’s what we need right now –– anger that fuels action. I’ll send every Republican who voted “yes” a picture of my diseased intestines. I’ll knock on doors, and write strongly worded letters, and donate to 2018 campaigns. Because angry me really wants them to know that if they’re coming for my health, I’ll spend every last drop of energy I have coming for their jobs.

iPhones, Choices, and Clueless Men from Utah

Early this morning, while I was taking my pills, House Oversight Committee Chairman Jason Chaffetz went on television to talk up the GOP’s new plan for healthcare.

If, like me, you have a chronic illness, you’ve probably been on the edge of your seat watching the news unfurl about the new Republican healthcare plan that some are deeming Trumpcare. And after an early look at the plan, it seems we’ve had good reason to be worried. It’s a lengthy document, but Vox has a really handy explainer here.

There are a number of things about this plan that frighten me, but before I even had a chance to examine it in full, I watched the now Twitter-notorious Chaffetz interview in which he said something that I haven’t stopped thinking about all day.

“Americans have choices, and they've got to make a choice. So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care.”

I immediately balked. Dude may as well have said "Let them eat cake." I’ve known Chaffetz to say some pretty offensive things in the past, but was this man honestly comparing the cost of healthcare to the cost of a fun new tech gadget? And furthermore, was he implying that the people like myself who are struggling to pay their medical bills are simply fiscally irresponsible?

The only explanation I can think of for such a completely callous lack of compassion for the sick and disabled is that Jason Chaffetz is superhuman. He has never gotten ill, or broken a bone, or had a loved one suffer from an unexpected heart attack. He’s never contracted a virus, and he wasn’t born with a lifelong, incurable illness with expensive medications.

And to that I say, good for you, Jason! I hope you live forever like the family in Tuck Everlasting and you never have to pay a single medical bill and you can use all that superfluous cash to buy thousands and thousands of iPhones and put them in designer cases. But for the rest of us, compassion would be nice. And nicer than that? Some sign that you’re in touch with reality.

Because reality is this: people who are struggling to pay their healthcare aren’t lazy. They aren’t spending their money on the wrong things. It absolutely does not compute to say that because you have made other purchases in your life that you don’t deserve to live, and to live with a reasonably good quality of life.

It’s probably easy if you’re healthy and your family and friends are healthy to think it’s as simple as Jason thinks it is. But here’s the thing: health is a privilege, and it’s one that can be snatched away from you at a moment’s notice and without clear reason. I’d challenge any healthy person to imagine what they might do if they were told tomorrow that they have a lifelong illness that costs $30,000 a month to treat –– because trading in your iPhone isn’t going to cut it.

Anger is a Productive Emotion and You're Allowed to Feel It.

Anger is a productive emotion and you’re allowed to feel it.

If I could, I would stitch that on a pillow and give it to everyone I know. I would also put said pillows in every room of my house.

That’s how important a reminder I think it is. I’m a big believer in letting yourself feel your emotions–– acknowledging when life is great and you’re happy, letting yourself wallow for a few hours if you need to when you’re sad. But anger is a tougher emotion for me. It’s not as palatable to the general public, so sometimes I stray from it and pretend not to feel it.

I have the opposite of “resting bitch face.” This is to say that even if I’m in a terrible mood, you’d probably never know, because the face I’m showing the world is at best, happy, and at worst, neutral. Never angry. Never upset. Never impatient. Never an emotion that might inconvenience.

So what happens when you have every reason and right to be angry? There’s such a push for positivity, which I think is great. Positivity gets me through 99% of my days. But what about the other 1%? The days where you wake up and your symptoms are so bad you can’t get out of bed? The days where your steroid-induced tremors cause you to drop a cupcake in your own lap at a family party? The days when it feels like life is one step forward and five steps back?

Do you push yourself to look on the bright side and be more positive? I’ve tried that, but in my experience trying to force yourself to feel feelings that aren’t authentic to you at the moment will generally just make you feel worse. So I’m trying something new. I’m giving myself permission to just be angry.

I’m giving myself permission to vent, whether it’s to my best friends or my mom or my journal (or this blog). I’m giving myself permission to eat a really big piece of cake and listen to “Don’t Hurt Yourself” on repeat and channel my inner-scorned-Beyonce. I’m giving myself permission to lean into the anger and truly feel it. Because when you’re young and sick and feel like you’re missing out on real life, you’ve got some stuff to be angry about. I don’t carry it around on a daily basis and let it define me, but on the particularly bad days when anger rears its ugly head, I no longer try to force it back down into a neat little box. I let it out, and it feels good.

So if you’re angry at the world on a given day–– because you haven’t gotten the promotion you deserve, or because you’re feeling underappreciated in your relationship, or because a sexual predator just won the presidency and you can’t even win a freaking sweepstakes–– really feel it. And use that anger to fuel something else, whether it’s a creative pursuit, or a foray into political advocacy, or just a really great shower sing-a-long to Alanis Morissette (the ultimate “angry and not sorry about it” woman of our time). Anger, when harnessed correctly, can make us powerful little storms, as long as we know how to control it without letting it control us. So be happy, be sad, be mad–– be whatever it is you are today, and know that it’s okay.

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.