On May 4th 2013, I delivered the eulogy for my 33-year-old brother. I’m not sure that our political representatives understand what this feels like when they make decisions to take healthcare away from people.
When innocent civilians are killed for political reasons we usually consider it an act of terrorism or a crime against humanity, but, inexplicably, when political leaders make decisions that only happen to cause those deaths why is it so easy to look away? This week the process of killing countless Americans is beginning, and it is happening because humanity and political gain are not always in concert. Nothing is literally life and death more than healthcare.
This week the process of killing countless Americans is beginning, and it is happening because humanity and political gain are not always in concert.
My brother went to the hospital so many times we lost count of the number of times we had lost count. Was it because idiopathic conditions are hard to treat? Was it because the insurance guarantor declined to do the tests that could have helped doctors establish an effective treatment? Was it just bad luck?
One of the worst nights I sat with him in a waiting room. I can’t tell you what was wrong with him—nobody could—but I can’t forget the symptoms. He would eat something, and sometimes “it didn’t agree with him” and he would vomit and it wouldn’t stop. Maybe like contractions while giving birth the cramping of the muscles would lead to severe abdominal pain, but the wrenching pain was just pain. Sometimes there was blood. Sometimes he had ulcers, other times he’d get tears in his esophagus. We waited because it wasn’t life threatening.
On this night we were told to wait, no idea how long it would be, and no idea where we were on the list. The hours pass and the pain got worse. Two or three times I went to the counter and asked questions like “is there anything that can be done for the pain? He is afraid he is going to pass out, what then?” After about six hours, I started calling other ERs and found one that did not have a wait. I called the ambulance and discovered they couldn’t deliver a patient from one hospital to another. With help I was able to get my brother into the car and to some treatment… Watching someone you love suffer is one of the worst things that can ever happen to you.
Years earlier my brother had a great job; he was working for a small family business. When he went to urgent care for his bad cough, they took an x-ray and discovered he had a collapsed lung, and he was hospitalized. He didn’t want to miss any work, or to let anyone down, because he was so happy to be working. He had toughed his way through something much more serious than a cold. His lung collapsed because he’d gotten Valley Fever, it isn’t an illness that sounds like its name. It is a spore that you inhale, which usually lies dormant, but sometimes (like in my brother’s case) it grows. The fungal infection in his lung caused a hole and the collapse. Anything that disturbs the soil (like the local agriculture or strong winds) can put the coccidioides spore in the air, and if you breathe it you could end up sick.
He was hospitalized more than a month. He was released but ended up readmitted because he got a staph infection in his chest cavity (likely from the chest tube). In total he was in the hospital about three months. He never returned to work.
When I’d take him to the emergency room or make hospital visits with him I couldn’t help but ask questions or speculate. He did it, the whole family did it, aided, in part, by the knowledge of our father, who was a medical doctor and our mother, who was a registered nurse. Any improvement was cause for celebration and each return to the ER was demoralizing.
A few weeks later, after hanging out with friends, he fell asleep. He didn’t wake up.
I’ve left details out of the story, but I hope at least two things are clear: 1. It wasn’t his fault he got sick—it could happen to anyone—it does happen to anyone. And 2. It was an extremely painful process. My challenge is this: I will never know what could have been. I teach political science, the day after my brother died I walked into my classroom and told them something like this:
Politics is real, and it is life and death. I took trip to the emergency room with my brother, and I watched him suffer, but I’ll never get to know if things could have turned out differently. I’ll never get to know if the Republican foot dragging on the Affordable Care Act made my brother’s care worse. I can speculate that it could have worked better …
At the time he died there had been 57 votes to repeal Obamacare. The Congressman from my hometown has openly admitted that the Republican Congress went out of their way to make all Obama’s policies fail. Better care might have made all the difference, but all we can do is speculate, because political vengeance was more important than saving lives.
One of my dreams would be recognizing the role of healthcare in peace and social justice. I can’t tell you what I would do, or give up, to have my healthy brother back. Don’t get me wrong, I know he had it better than most of planet, he got medical treatment, and asking “could the treatment have been better?” is worlds better than “could a doctor have made a difference?” The Universal Declaration of Human Rights says this:
Article 25. (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.
It is a dream for peace and justice around the world, and I wonder if the U.S. couldn’t aim for goals like these for its own citizens if not the whole world?
Republicans have the football and are driving for the political victory; fully prepared to gut the legislation responsible for bringing healthcare and medical protections to millions of American families. This is what predatory politics does, and no alternative has been prepared. How many of those millions are getting a de facto death sentence?
Please believe me; it the most painful thing you can ever watch.