Standing Up For My Family

Standing Up For My Family

Two days ago, I stood in front of my Congressman's office and spoke about what the AHCA means for my family.

 

Part of me wants to pause right here and make excuses for my appearance. For not being thin enough, or pretty enough, or whatever it is I think I must be to be a visible woman. I may not look like what I think a spokesperson should look like, but I look like what I am. A mom of three, a dedicated advocate, and an American with a family in danger under the AHCA. So I'm not exactly sorry I don't look as gorgeous as I'd like to while standing up for my family. And I am definitely not sorry to take up the space to do it.

dieinroskambarrington

Thank you so much to ChicagoNow's own Kim Cavill, who organized the event, and who spoke passionately and eloquently about the need for a single payer system. I'm grateful and honored to call you a friend.


What follows is the text of my speech:

When I met Mike, I’d been raped a year before, and my rapist had spent the intervening time stalking me, and sending me death threats. I never left the house, I worked for residents of my apartment building, mending their clothes, and lived on dried beans and rice. Mike saved me. I rebuilt my life because of him, not because he asked or pushed, but because I wanted to feel like I deserved to be with the kindest, most thoughtful, most wonderful person I’d ever met. Because of him, I went back to school, I got a job that I loved and was good at. The day he proposed was the happiest of my life.

The next day, Mike had a massive seizure. An ambulance rushed him to the hospital, and what my athletic fiancé had thought was a pinched nerve in his leg turned out to be stage four, inoperable, terminal brain cancer. I quit my job and my education, because my small non-profit didn’t offer insurance. I quit to do everything I could for him to ensure that through brain surgery, through chemo and radiation, through losing motor function and though seizures, he could go to work. This was before the ACA, and if he lost his job and insurance, he could never get coverage again.

He was supposed to have eighteen months to live, and beat every odd, every expectation, and a year later we were married, another year later we were pregnant with our twins. That was when the economy collapsed, and my husband’s company failed. When my husband finally found a new one, an employer could force employees to wait years before covering them on the group plan. Even though Mike had a job, our families sacrificed every month to help us pay thousands of dollars for COBRA, so my husband and our preemie twins would keep coverage and our family would survive. The day the ACA passed, we cried. Finally, my husband could get a job that offered him insurance. Finally, we had some assurance that we could make it through the years that follow a cancer diagnosis.

I told this story to Peter Roskam myself. I put this photograph of my family in his hands and said, “This is my husband, he has brain cancer. This is my daughter, with asthma, This is my daughter, with a congenital spinal defect. If the AHCA passes, these are the people who might not survive. My husband WILL NOT survive. EVERYONE IN MY FAMILY HAS A PREEXISTING CONDITION.”

Peter Roskam thanked me. He THANKED me. And then he voted for the AHCA.

Peter Roskam thinks that “access” to healthcare means that if my husband loses his job, one based on funding from a state without a budget by the way, my family has to find $140,000 to join a high risk pool, just so my husband can get an MRI. Peter Roskam thinks “access” to healthcare means us paying out of pocket $400,000 a year for his treatment, and then getting a tax credit at the end of the year- which does nothing when you’re a working family who always files the minimum deduction. Peter Roskam toes the line with members of Congress who say “good people don’t get preexisting conditions.” Peter Roskam agrees with Donald Trump, when he says healthcare should be run like a business.

You know Peter? Maybe it should. But do you know how a business handles healthcare when a member of that business gets sick?

After the ACA, when my husband had a job and insurance, as a father of three who works every day for his paycheck and his healthcare, when his cancer CAME BACK, do you know what his company did?

His employers, his co-workers, the people who run and the people who administer his company, came together to pay the bills that come with having brain surgery and physical therapy and chemotherapy, even WITH insurance. They HELPED him.

Even in business, THAT’S WHAT YOU DO. In America, we’re not the government’s customers, we are part of the damn company. We’re the goddamn shareholders.

And we take care of each other.


Read more about my meeting with Peter Roskam here: Begging My Congressman For My Family's Lives

Read my latest post here: My Congressman Voted To Kill My Family

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