It seems impossibly cruel, and yet, this is the life I currently live. One where, by hook or by crook, by any means accessible, I have to find a way to literally beg my Congressman not to kill my family.
Let me take a step back.
Almost ten years ago, my life turned upside down. In the course of a few short hours, I became engaged to the love of my life, rushed to his bedside in a hospital emergency room, and then learned he had terminal brain cancer. I went from being a college student with a brand new job in a field I loved to being a full time caregiver, learning everything I needed to know and more about advocating for somebody with insufficient insurance and serious medical needs.
Although it might sound insane when speaking about the conditions of being engaged to a man with terminal brain cancer, we were unfathomably lucky. M’s HMO, while initially rejecting all of the claims for his care, was forced to reverse their decision and not only provide care for M, but to do it at the hospital of his choice- an out of network hospital that saved his life. And even luckier still, the medical trial that M was able to access, one that was considered a failure on the whole, due to the risks for most of the patients and the limited benefits, worked FOR HIM. He thrived. He survived. He overcame, as much as one can when there is dead and low grade tumor still occupying large chunks of your brain. We started a family.
In the years before the ACA, we somehow survived unemployment, the birth of our premature twins, and continued cancer maintenance. We did this because, every month, Congress voted to continue unemployment benefits for another month- which meant our continued access to COBRA insurance. We were unfathomably lucky, because we both had parents willing and able to sacrifice in order to keep us afloat. We never forget that this privilege is denied to millions of people, who back in those days filed for bankruptcy at higher rates than anyone else in this country. We don’t forget that “medical bankruptcy” was not only the most common form of bankruptcy, but that as I sat in waiting room after waiting room, reading endless glossy magazines from anonymous heaps, article upon article advised the caregivers of patients how best to plan for their inevitable bankruptcy. That this was NORMAL, no matter how devastating. But as I’ve said a thousand times, “normal” is not the same as “right.”
When the ACA passed, we cried with joy and relief. M was able to get a job that not only had to offer him insurance regardless of his preexisting conditions, but he wasn’t forced to wait years in order to access it- another pre-ACA problem we faced at the time.
The ACA saved us.
And then November happened.
In the last few weeks, I have managed not once, but twice to get myself into a room with my Congressman, Republican Peter Roskam, to talk to him about saving the ACA.
On Saturday, at sat directly next to him, looked directly into his eyes, and showed him pictures of my family. A family entirely composed of people with pre-existing conditions. A family that, without the ACA, would quickly fall into poverty, and for at least one of us, death.
I explained to him how deeply we need the ACA, and how deeply tens of millions of people in this country need the ACA. And how thousands of people in his own district, people like me, people like him, depend on not just glib “access,” but actually having insurance.
And this is what I have learned from twice now, literally begging my congressman to save my family:
He. Does. Not. Care.
He does not care that he has the ability to save lives. He does not care that he has the ability to provide a safety net. He is not listening, he is not interested in responding, he is not interested in being disagreed with or finding compromise or anything.
He does not care if we live or die. All he cares about, as he took the time to mention in passing, is being reelected. And here’s the thing- if the people he’s fucking over die, well, that’s easier margins for him to win by. If he helps kill off the people who oppose him, brilliant, he has fewer votes to win, fewer protesters to ignore, fewer calls for town hall meetings to glibly reject.
He does not care that his opinions shape the reality of our lives, and he does not care if those opinions mean the death of his own constituents. People like my husband, or me, or my children. He does not care what state he leaves us in, because as far as he’s concerned we simply don’t matter.
This is why he doesn’t want to do town hall meetings- because it’s easier to fein interest in twenty people at a time than to pretend to care what a thousand have to say.
This is the sort of person who represents my district.
This is the sort of person representing most Americans.
And worse, this is the sort of person in the White House.
Call me a snowflake or whatever, but I believe empathy is a good thing. I believe caring about people who have different circumstances than you matters. I believe treating others with kindness is one of the only things that matters in life. I believe that sometimes doing what is right is the highest calling of any human being.
And by that measure, Peter Roskam is a failure of a human being.
Residents of the IL 6th, residents of ANY district, hold these people accountable. Do not let up. Do not stop calling, faxing, sending postcards, demanding meetings, doing what you’ve been doing. We can’t let up. We can’t give up.
My family’s life depends on it, and I am begging you. I am begging you to do what my congressman will not.
I am begging you to do what is right.
Read more about the impact of politics on our lives here: Ted Cruz, Donald Trump, and Teaching My Kids About Yom Hashoah
Read my latest post here: Oral History of the New Colossus
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