Thursday, March 23, 2017

this is what it feels like

This post has been bubbling around in my consciousness for months now. More than once, I've thought about writing it and then stopped myself. No, I've thought. I don't want to make people feel bad. I don't want to burn bridges. I don't want to deal with responses telling me that the way I'm feeling isn't valid. I don't have the oomph to listen to people tell me I'm wrong. I just don't have the energy.

But you know what? It's been months, and the grease-fire that is the healthcare debate in our country is just getting worse and worse. Today, the most hardline conservative members of the House of Representatives convinced the White House to strip even more protections out of an already-terrible healthcare reform bill, and they're after even more—including the piece of the law that bans insurance companies from charging more to people with chronic or genetic illnesses. Like, you know, me. And I am left with this burning desire to share these feelings, to speak plain words, to do whatever I can to give people a peek into what it feels like to be a chronically ill, disabled adult with close to half a million dollars a year in medical bills right now. And I'm posting it on my public-facing blog, because this is real. It is important. And I am done being silent about it.

I will not speak eloquently. My words will not be beautiful. They will probably be angry, and they will definitely be stark. And maybe they will make you mad. If that's the case, I'm sorry—except not that sorry, because maybe that anger will also give you understanding, offer a glimpse into the anger and fear and hurt and grief that I've been feeling these last months. Because there has been so much of all of that. So much that some days I feel like I can't function. So much that some days I sit on the couch trying to disengage from news headlines while I hide furtive tears from my daughter. So much that when I gather my nice words to post educational items about healthcare on Facebook, it feels like a Herculean effort, because all I want to do is cry and scream and rage against the world.

Because this is what it feels like, being me:

On November 8th, 2016, you start crying as election results come in and you do not stop for days. You cry in your sleep, which you didn't know was possible. You cry and you cry and you cry and you think, how could people that I know and love care for me so little as to vote in a man who has made it his life work to undo the laws that are the only reason I have healthcare right now?

In the months that follow, you have lots of days where you don't even want to go out in public, don't want to go to church, don't want to run into anybody you know, because if they ask you how you're doing you know that they don't want to hear that you're having an existential crisis over how calmly everybody is debating what your life is or isn't worth.

You have always loved your country. Independence Day is your favorite holiday. But lately, you find yourself hating living here with a passion, fantasizing about moving abroad—and not even because of the superior healthcare, but because you aren't sure you can take another day of living in a country in which people spend their days saying things like Why should I have to pay for somebody who's sick? and you know, even if they don't, that the subtext of that is Why should I care if sick people die?

You get angry sometimes, when friends gush about your adorable child. You want to take them by the shoulders and shake them and shout DON'T YOU UNDERSTAND? DON'T YOU UNDERSTAND THAT THIS CHILD, THIS BEAUTIFUL GIRL WHO DANCES IN SUNLIGHT, IS EXACTLY WHAT'S AT STAKE? Don't you understand that I am fighting so that she can grow up with a mother, fighting so that I can live long enough to hold her own babies someday, as slim as that possibility might be?

You have had setbacks in your access to insurance in the past, but never before have you genuinely thought, I could truly die because of this. But now that thought is in the back of your mind always, always, without ceasing. You tell your husband to freeze your retirement for awhile, not to buy a new car, not to do anything with your first payment from your debut novel. You spend your time thinking of contingency plan after contingency plan. You pray all day some days. And other days, you don't pray at all, because you know that sometimes God allows people to suffer and you can't even bear to think that maybe he could allow your sweet daughter to suffer without a mother.

You cry typing these words. You cry and cry and cry.

Rich men with nothing at stake debate your fate in Congress. Patronizing friends and family assure you that "it will all work out," that "they have a plan to take care of everyone," that "it won't be as bad as you think," that "you have to be positive." And you want to yell, I have ALWAYS been positive. I am an optimist. But these months have buried my optimism so deep I don't even know where it's hiding.

People complain that their healthcare is expensive, and you think: Yeah. Healthcare IS expensive. Because for you, it has never not been expensive; there has almost never been a time at which you weren't paying at least 10% of your income in medical expenses.

People say I can't afford to use the health insurance I pay for, and you think: Good for you. It's lucky that you have that choice. Because no matter how high your deductible has been in the past, you have always had to meet it, because it was between expense and death. Because, in the end, you'd rather be broke than dead.

And through it all—through all the conversations and the headlines and the long, long nights of fear, you are never allowed to forget just how little your country values bodies like yours, just how little most people genuinely care. Sure, they might care about you, objectively, because you're related or because you write funny Facebook posts or because you have interesting conversations. But as a whole, your fellow Americans care only for bodies that are whole and strong and healthy. People talk about "making wise choices" and "saving for healthcare when you need it" and "taking care of your health so you don't need interventions" and you want to rage, scream, throw things, shout about how sometimes you're not lucky enough to be born with genes that work, and sometimes you cost half a million dollars a year in medical care for conditions that are interwoven with your DNA.

You think about all the tiny aggressions you've dealt with in your life—the people who snapped at you for using a disabled placard, or the professors who tried to flunk you because you missed all those classes due to repeated hospitalizations, or all the many, many people who simply haven't understood the reality of your limited, liminal life. And you think about how you always assumed that these were the outliers, the fringe wackos who lacked compassion, the few and far between.

And about how you were clearly wrong. Because now, those who lack compassion are not at the fringe. They are everywhere. They are controlling your government. They are making passionless decisions about whether a body like yours has any value at all.

And you are not sure you have ever felt so alone.

.   .   .   .   .

(Note: I'm disabling comments on this post, and while I don't have the ability to do that when sharing on Facebook, I will summarily delete any comments that tell me that I'm overreacting, that I'm wrong, or anything at all about the ACA legislation. Because this is the very deepest, rawest part of me, laid bare, and I am heartily done debating whether or not a life like mine has value. Period.)