Published on 2017, May 4
The House of Representatives passed a bill that would significantly alter healthcare law in America. I wrote about some of my family’s experience with medicine. The Senate rejected the bill a month later.
I’ll be perfectly honest I don’t have a full grasp of what’s in the text for this bill. But then again, judging by the news coming from the capitol, neither do our lawmakers.
Doesn’t really matter. I’m neither a lawyer nor a politician and don’t really have the background necessary to speak with authority on the American Health Care Act as a matter of policy, and I don’t intend to.
I just want to tell an extremely personal story.
I’m currently 23. I remember the turn of the millenium; I was 6 and a half and that was the first night I was up at midnight with my parents’ blessing. I was in first grade.
Shortly afterwards, President Bush was sworn in. I was six and a half. I knew it
happened, but nobody cared. It was just a presidential changeover, and I was far
too young to know anything about politics or events in President Clinton’s term.
A far more important event, in my first grade mind, was that February didn’t
have a 29th and also I figured out how to pronounce the
My first real political memory came a year and a half later, when I was eight years old and starting third grade.
Where Were You When…
I’m in the tail end of people who have an answer to this for 9/11. My brother would turn six a month later. I’m not sure how well he remembers it; we don’t really swap those stories because our family all knows each other’s.
Dad was driving us to school. We were about halfway there, when the radio stopped playing music and started saying a plane had hit a tower. This was at 7:50 AM (I lived in Minnesota, in Central Time).
We thought they meant, like, someone had driven their Cessna into a radio antenna. Dad dropped us off at school, and we went about our mornings.
In library hour, we talked about it some more. That’s when I found out that it was not a local event, but in New York; that it was not some hick in a Cessna, but two commercial airliners; it was not a radio mast, but the World Trade Center. I’d seen them when I visited Grandma in New York in first grade, for Grandpa Charlie’s funeral.
We went about our day. Class happened. I don’t remember anything out of the ordinary. Looking back, it’s probably because our teachers got to school before it happened, and then we didn’t have much news input.
At lunch, my princial told me my parents were coming to take my brother and me home, and asked if I knew why. I guessed it was for Cub Scouts.
We owned a TV. It rarely worked. We lived out in farm country, with an antenna that filled half our attic. We got PBS, ABC, CBS, and NBC. Sometimes we got channels up in the 40-70 range. If they showed up, they were in black-and-white as often as color.
This was the first time I remember using it to watch the news rather than a VHS. We changed channels when one got fuzzy, which didn’t matter. They were all showing the same thing.
I remember watching the collisions happen. Over and over. Crash, smoke, fire; other crash, more smoke, more fire. Talking heads. Rinse and repeat. Then our news station received footage of the Pentagon and Pennsylvania events, and added those to the loop.
What I remember most about that afternoon wasn’t sorrow at the loss or anger at the attack. It was fear. It was the dawning realization that these people had stolen airplanes and killed everyone on board, including the pilots and flight attendants, and that my mom had been a flight attendant, and that my dad was an active pilot. I’d never even considered that Dad might leave on a trip, and not come back. I was in third grade! No third grader thinks about that! And then we did.
Where was I on 9/11? I was at home in Minnesota, with no relatives in New York City, and yet in my own small way, my solid idea of the world had cracked.
The Middle, Part One
So there I was, eight years old, attempting to wrestle with the concept of mortality. I was used to Dad leaving for days at a time for flights. For the next few months, I grew more and more afraid that this might be the trip where he didn’t come back. But Dad flew for Northwest, and they weren’t hijacked.
Then the furloughs started.
We had family friends in the industry. Some got furloughed. Dad was worried he would, but he was senior enough to not be at the front of the line.
Then we didn’t worry about furloughs anymore.
That winter, Dad was diagnosed with colon cancer, and was placed on medical leave. Northwest’s medical leave program provided reduced pay and significant insurance. I didn’t know any of that at the time; all I knew was that I got to skip school in February to go spend Dad’s 50th birthday with him at the Mayo Clinic. We lived an hour and change from one of the best hospitals in the world, and we’d never have afforded it on our own dime.
He had surgery, recovered, and came home. The FAA rules kept him on medical leave for the next year or so, and the law mandated that Northwest continue to pay him. By the time he recovered, the airline industry had as well, and he went back to work.
Dad did his absolute best to keep my brother and I from knowing what was going on with him medically. We knew he was sick, we knew he was at the hospital, and we never ever saw him admit to pain or weakness. When he came home, he wore a smile and went back to the household chores and our old lives, except now he was home full-time and I wasn’t afraid anymore.
The Middle, Part Two
Fast forward six years. We moved to Michigan, Dad was working again, everything was fine. I hadn’t thought about third grade in a while.
Dad was getting cancer screenings every year now, as mandated by law (FAA regulations), and I think we paid out-of-pocket, because they cost just under our deductable.
And it came back. This time, in the lung.
Dad went back on medical leave, went back to the Mayo, and had a portion of his lung removed. I remember they gave him something to use for exercising his lung and measuring his breathing capacity, and he would spend an hour or so each day breathing into and out of that thing, trying to tick the numbers back up enough so he could go play racquetball again.
Except he didn’t, because his doctor recommended a course of chemotherapy to be sure that none of the cancer was missed, and to prevent a second metastasis.
One of my most vivid memories of that year is that shortly after he had a shunt emplaced in his chest to permit delivery of the chemotherapy directly to his heart for rapid distribution, I accidentally jostled it, just a bit, and it nudged against his heart.
Nothing prepares you for the moment when you accidentally punch your dad directly, literally, in the heart. His doesn’t stop, but yours does.
Nothing prepares you for driving your dad to and from his chemotherapy sessions because you’re thirteen now and Mom still has to run the house and take care of your brother and as much as Dad wants to be stoic and take the chemo alone, that has a psychological cost and it’s actually better for him if he has someone there.
Nothing prepares you for watching him slowly but noticeably lose hair. Lose weight. Watch as he struggles to eat Mom’s food about which he’s never had cause to complain but now tastes like ashes because the poison’s in his tongue. Watch as he loses sensation in his feet, has more and more trouble walking, because it’s killing his nerves.
I’m thirteen. My brother is ten. Our dad is fifty-six and fighting for his life a second time as we watch, and we don’t know if the cure is worse than the disease.
Delta buys Northwest. The staffs are merged. Some pilots are laid off. Dad is on medical leave and so it is illegal for Delta to drop him without a severance package that would cost more than letting him recover and come back to work. We are grateful for our continued existence and non-bankruptcy.
Dad makes a full recovery. A year after the chemotherapy ends and he is still clean, he goes back to work. Over the next several years, he regains his weight and learns to walk on numb feet. He even plays racquetball again. He even wins.
I go to college. My family is not bankrupt from medical bills. I am not saddled with student debt because even with these two emergencies and the recession, we set enough aside to pay for the tuition not covered by my scholarship.
We are not broke. We are not homeless. All in all, we were extraordinarily lucky. Unbelievably so. I don’t know if the word “blessed” is overused but it must surely be applicable here. The angel of death passed over us and did not look down.
My doctor tells me that I have to start getting full-body cancer screenings when I’m thirty-five. Dad’s cancer was not determined to be environmentally caused. His mother died of breast cancer. Two of his sisters developed it; one died. One of his brothers has cancer, likely terminal. His brother did not share my dad’s career path. His brother cannot afford the Mayo.
I am a genetic risk for cancer. It is presumed that I will develop it around the age of fifty. The bottom end of my life expectancy is 60. My dad is currently 65 and going strong. I hope that’s an accurate prediction of my life.
If we did not have employer-provided health insurance, I would not have gone to college. My family would have been rendered destitute in 2003.
If we did not have employer-provided health insurance, I would not have my dad. He would have died in 2009.
I cannot possibly overstate the importance of having my father with me for my whole life. I would not have my job, my education, or my character without him. I don’t know where I would be.
I know that my family have been extraordinarily lucky here. We had a good employer. We had enough money to weather the three years without work. We had good doctors. We had each other, and I know my dad absolutely credits his need to see my brother and I grow up for the drive necessary to endure the chemotherapy. Years and years later, he told me that in 2002, after his surgery, he was on morphine to combat the pain of recovery but the morphine would also prevent a full return. He could either suffer slightly for months, endure what I’m told was brutal agony for a week by refusing the morphine entirely, or die in that ward.
Mom kept us home for a week, and then we went and got him. The other two options were unacceptable. None of us knew about that until at least ten years later.
Having my dad be alive and my family not being bankrupt shouldn’t be an extraordinary circumstance. It shouldn’t be a reward of a virtuous life, or dumb good luck, or for having played our cards right. It should be the baseline, the default, the obvious path for everyone in our society.
If and when I develop cancer, I shouldn’t survive it with my finances intact just because I have a well-paying job and am the perfect intersection of every single category the GOP claims to like.
I have the life I do in large part because of employer-provided health insurance mandated by law. The AHCA will remove this requirement, and many people will lose coverage from work. Their salaries will probably not increase by a commensurate amount.
Many families who were not as fortunate as mine were able to receive care thanks to the ACA. The AHCA will remove this.
Most senior citizens live on Medicare and Medicaid. The AHCA will pillage these.
The AHCA is systematic, slow euthanasia for our society. It will allow our citizens to die, or to live in poverty, for utterly no reason. Even my rather successful story will be a mere dream going forward.
Passage of this bill is a death knell to millions of American citizens. Much as the immigration stance about which I’ve previously written, this is a fate I have dodged solely by accident of timeliness, and I cannot imagine the suffering of those who will be affected as a result of these acts.
We were supposed to be better than this. We still can be, I hope.
But for now, I’m going to try to deal with the fact that I now have one foot in the grave, and can see my end approaching. I hope the best for all those who will reach their untimely end before me.