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.

Get Out and Vote! (Or Stay in and Vote!)

This weekend I was having too rough of a symptom time to go partake in Halloweekend activities with friends –– but sitting on my couch watching The Craft started to get a little old around hour twelve or so. So I decided if I had nothing else to show for my weekend, I’d go vote. Early.

Illinois (where I live) is one of many states that allows early voting. Since I’m only 24, I’d never actually voted in person for a presidential election before. I’d voted in the primaries, and some local elections, so I think I underestimated how crazy election day would be. That underestimation was clearly evidenced in the fact that when I got to the library on a random day of early voting, there was a line out the door.

Aside from a blip on the radar of this weekend, my symptoms have been mostly improving, so I hunkered down in line with a book and waited. As I was waiting, I started to think about how other chronically ill people (who aren’t as lucky to be “on an upswing” like me) might deal with long lines at the polls. Disabled people are a hugely important voting block –– because duh, we have a lot at stake here. But standing in an hour long line isn’t exactly sick-kid friendly for a lot of people.

Instead of giving out stickers, Chicago gives you a wristband so you can feel like you're at a weird, political Coachella

That’s where it becomes exceedingly important to know your options. Know whether your state has early voting, where lines are likely to be shorter and more manageable. Know that employers legally have to give full-time employees time off in which to cast their ballots, so you don’t need to create a crazy hectic day for yourself trying to get your vote in. Know your state’s rules on absentee ballots –– for people who are ill, these are a freaking godsend. When you can barely leave your house for doctor’s appointments, leaving to go struggle around a crowded polling place is probably out of the question. As it were, though, you can vote from your couch!

There’s a lot at stake for disabled people this election (which is why #CripTheVote has become so popular). People’s access to healthcare depends upon it. Funding to the government for things like disability benefits depends on votes. Having a president who respects you as a person (and doesn’t mock disabled people in public) depends on it.

Everyday life is harder for people who are ill, and life comes at us fast. Don’t let that get in the way of making your voice heard. Don’t let an unplanned trip to the ER or a horrible symptom day keep you away from the polls –– vote now, if you can. Because while a lot of healthy, upper-middle-class white dudes can afford to sit this one out because their rights aren’t at stake here, we definitely can’t.

Not sure where to go to find out where, when, and how you can vote? Head over to IWillVote.com and find your early (and Election Day) polling places. You can also check out each state’s absentee voting rules on Vote.org.

Do it for your rights, the rights of patients like you, and for the sweet “I Voted” sticker Instagram post.