I have a story to tell you. It's not about what insurance should cover. It's not about what insurance should do. It's about what insurance doesn't cover and what insurance can't hope to fix. Still, it's about why universal health care is so important: medical bills aren't the only result of chronic illness. They're just the easiest part for society to fix.
This isn't a story of good health, or necessarily one of good cheer. It's not a story of quick fixes or miracle cures. There aren't any magic pills, there aren't any good fairies with sparkly wands who reach down to tap anyone on the head and make them all right again.
My family plays an important role in it, but it's not the story of my family. That is a much larger story than the one I'm telling here. My dad is the main character, but it's not really his story either. His story began long before this one, and continues on though he's no longer here.
This is the story of a journey that began with a diagnosis. It began as a race my father was running. It became a marathon run by our family. Some say the finish line was crossed 8 years ago, when my father died of complications from kidney failure. I say the race is still being run, because races such as this one are never really over. The contestants may change and the track may be relocated, but until health "insurance" becomes "health care", the race will go on.
My father was about 33 in 1977, when he was diagnosed with kidney failure. He was married, with a 6-year old daughter, and a 1-1/2 year old son. He had a house in the suburbs. His job was good; his wife stayed home with the kids and they had 2 cars. He was a religious man, in the quiet and profound way of someone brought up to respect all God's gifts no matter how mysterious.
He worked for one of the baby Bells, in management, training other Ohio Bell employees to do something the company presumably found important. My memory of it all is hazy, and mostly involves the big easel paper he'd bring home sometimes when there were only a few sheets left on the pad--he never wanted it to go to waste. He was, by all accounts, well on his way to a Vice Presidency--a really, really big deal back then.
That was his life, on the day he found out he had total failure in one kidney, and partial failure in another. In 1976, this was pretty much a death sentence. You might appeal it for a few years--maybe as long as 10, if you were lucky and you didn't have any other serious health problems.
In one day, or at least in a very short period of time my father's life went from "moving forward" to "holding pattern." He went from dreams of seeing his children married with good jobs, to hoping for a miracle so that he'd live to see them graduate high school. He went from having dreams to just trying to hold on to them.
And like everything he ever did, he did that quietly, and he did it well. I was in second grade when he got his first kidney transplant. He couldn't be at my First Communion--which was, I suspect, a terrible blow for him. He couldn't be at a lot of things from that time on. He was in the hospital when the transplant was performed, and again when the kidney was rejected. He was at dialysis, four hours a day, three days a week. He was often in pain. He was often exhausted, often ill.
For a while, my parents tried dialysis at home. Furniture was shifted around, and there was a recliner beside the dialysis machine at home. It was a big machine, about the size of a good-sized entertainment center, full of dials and gauges, with a metal arm that stuck up out of the top and held the artificial kidney. There may have been another arm, too. I think it had wheels. I know that, like most important medical machines, it was more than a little scary.
The machine was brown, if my memory serves, where it wasn't metal--sort of like a really big, relentlessly tacky stereo with really odd attachments. It had long flexible plastic tubes attached to enormous needles--one set taking blood out, the other putting it back. I don't know how Mom managed to stick the needles in Dad's arm. But she did, for a long time. I'm not sure why that stopped. To be honest, even with a comfortable padding of years between now and then, I can't believe either of them had the nerve to start it at all.
My mother was, like my father, in her early thirties when this race began. Her life was shadowed by the knowledge that she would, some day all too soon, be a single parent; and by the morbid and necessary guessing game of when that time might come. She dealt with diapers and being the house alarm clock and teachers and report cards and lunch-making and all the thousands of daily chores that come with having 2 young kids. She was often exhausted, I'm sure. She was often worried, and scared, and she probably railed at fate when she had the time. She dealt with a lifetime of worry in a few short years. And she dealt with the uncertainty of life--most people are lucky enough not to learn that lesson so fully until they're older. Not so either of my parents.
Neither of my parents, in my hearing, ever showed regret for the situation fate had handed them. Neither of them ever hinted that their dreaming had been interrupted, or that reality was too harsh. I may have been an unusually unobservant kid, but I don't think so. Children who grow up with illness see too much, too soon, no matter how hard their parents try to keep all the wolves from the door. There were arguments--how could their not have been? But I never understood till much later how much they had lost. I never knew, as a child, the enormity of what they were fighting.
My father, eventually was retired on disability from the phone company--AT&T by then. Another dream fallen by the side of the road when the race got too hard. It might have been a financial disaster for our family. I can remember, with the lucky fact of a child's hazy memory for things too adult to understand, vague rumblings, vaguer concerns. But I can also remember that nothing, in my child's world, changed. I still got an allowance, new school clothes, new shoes. We ate the same food we always had. Now, I know what sort of behind-the-scenes calculations (and likely the panic) must have happened. Then, I had no clue.
My mother went back to work. This was never presented to my brother and I as necessary to make ends meet. I have no idea, to this day, whether it was. My mom sold office equipment, then moved on to fill accounts for temporary staffing agencies first at one company, then at another. She was really good at what she did--even as a kid, I remember people saying how good she was. She was never lucky enough to work for people who appreciated her talent or took care of her the way she took care of them--and of us. So she had that to fight as well.
My brother and I went through grade school in the usual pattern of kids, interested mostly in ourselves, our friends, our lives. Mom went to work every day. Dad took over some of the household stuff, and went to dialysis Monday, Wednesday, and Friday, four hours each time. From time to time the routine was interrupted by terror--a hospitalization here or there. They must have happened more often than really sticks in my mind, because by the time I was in 8th grade, I knew the floor of the Cleveland Clinic my dad was usually on, where the parking garage was, how to get from the garage to the buildings, where the cafeteria was. But kids--even really shy kids, like I was--adjust. It all seemed normal.
Somewhere along the way, my dad had an artificial heart valve put in. And when that one failed, it was replaced by a pig's heart valve. I remember thinking that was gross. There were broken bones and at least one case of pneumonia, there were sinus problems and (I think) a second fistula put in his arm (long story short, a surgeon sews a vein and an artery together; it's the only way you can be dialyzed through the arm regularly, though I still don't know exactly why). I think there was hepatitis, or maybe just a scare. A lot of it's hazy, the way you can't remember a particular day at school but you can bring back the feel of it.
By the time I was a junior in high school, Dad had hit his life expectancy on dialysis. Ten years--from when I was six to when I was sixteen. My brother was almost twelve, so maybe in sixth or seventh grade. This was as long as Dad had been expected to live--and way at the outside--from that day when dreams of promotions and better cars and fairy-tale weddings and happy ever after came crashing down.
Funny thing about people in our family, though. It's pretty rare for any of us to hear "you can't do more than this" without being inspired to go one better.
(part 2 tomorrow)