Life, Liberty, and Pursuit of Affordable Health Care

On January 3rd of 2014 I was seven hours away from my home of Adams New York, visiting my girlfriend on Long Island. My sister called, clearly upset, she told me to sit down. Then she laid it on me: “Mom has a brain tumor”.

Unless something like this has happened to you, it is hard to understand the sinking feeling in your chest that doesn’t quite ever find a bottom. A feeling that seems to fall through you, and with it, any kind of impression or hope of normalcy.

On January 3rd, she got an MRI, where they spotted the tumor. The hospital told her to go to the emergency room where she was then transferred to Upstate Medical Center in Syracuse. We have a saying in the North Country (A part of New York that has more in common politically and otherwise with Wisconsin than it does NYC); “Anything North of Syracuse is a Veterinary hospital.” In other words, if it’s serious, go south.

This tumor was in the lining of her brain. It is called a Meningioma which is a highly documented type of tumor that is usually benign and usually asymptomatic — they often go unnoticed. Unfortunately, hers was atypical: it had a faster growth rate than that of the benign category to cover a large area of her right frontal and parietal lobes. It had grown too fast, and the pressure of the tumor impacted her motor system, resulting in limited control over her left limbs.

Before a surgery of this nature you must face all the possible outcomes. My dad told me he “didn’t know what he would do without her”, and in that moment, I realized, neither did I. This was coming from a man who has had his own catastrophic event. It was only a year and a half before that he had to face his own mortality. A young woman fell asleep at the wheel and collided with my family’s crappy little 2000 Hyundai Elantra. That car did very little in protecting him from shattering his ankle on the brake and having multiple 8” long lacerations. He spent his whole life working blue collar jobs as a dairy farmer, garbage man, and lumber yard worker. He now walks with a serious limp, and will never recover.

That is when I told my mom, “We need you, you are the cat herder that rounds us all up together.” If you have ever tried to herd a group of cats, you know what I mean.

The surgery on the following Friday lasted 9 hours when it was supposed to last 8.

After the surgery, my Mom was reading the Newspaper at 11pm that night when I am finally allowed to visit her in recovery. She is wounded but just as feisty as well as mildly brash as always. The nurses said they had never seen anything like it. No one has brain surgery and acts like nothing happened hours later. But my mom is the strongest person I know, she spent her whole life as a dairy farmer and a self-employed house cleaner. You absolutely cannot survive in the North Country by being weak or having a poor work ethic.

My mom had radiation for the next 6 weeks. She will never gain full control of her left side again (her dominant side), as she has a hemiparesis.

This can happen to anyone. She was covered by the affordable care act for only two days when they found the tumor. The medicine, surgery, and subsequent radiation racked up to be $250,000. She hadn’t had health insurance for 20 years prior.

When I was a kid I asked her why she didn’t have health insurance and she told me it was for people who could afford it. Do not forget, that before the Affordable Care Act, healthcare was for the rich (in relative terms) and not for the low-income people like us. Now my mom, my dad, and I all have health insurance under the affordable care act. I am from a Republican family in a Republican county within a blue state.

Right now, we face a huge step backward with the potential repeal of the Affordable Care Act, without a solution to replace. Frankly, I refuse to go back to the times when health insurance was only for the rich. No platitude is going to change my mind. Everyone has a right to live a healthy life in pursuit of happiness. Don’t let anyone tell you differently.