The story of my family's marathon race with chronic illness (pt 1 here) began when I was six, when my father was diagnosed with acute kidney failure. He was given ten years to live when he started on dialysis, a year after he was diagnosed, after a failed kidney transplant. Ten years of ups and downs and challenges later, he was still, within the confines of his disease, going strong.
When I think back to high school, it all seems like a mostly-pleasant if unremarkable blur. Classes, lunches, laughter, panic over forgotten term papers or pop quizzes, orchestra, football games, dances. Mom worked. Dad did house stuff and shuttled my friends and I around, unless it was dialysis night, in which case Mom got that lovely duty as well as all her other endless ones. My brother didn't start high school till the year after I started college, so there were two sets of carpools and dentist appointments and general pre- and teenage insanity to deal with all at the same time.
It's when I was in high school that I think I started noticing the pressure. How tired Mom and Dad were a lot of the time, how overworked Mom seemed, how determined they both were not to let the little things slip through the cracks in case there wasn't a chance for a do-over. I never had a real sense that we were living on borrowed time, so to speak. Most teenagers don't have the perspective on life to really understand what they might be up against. I think the biggest parenting success of my parents' lives must have been watching myself and my brother after me, both as self-absorbed as any of our friends.
Dad had to take the car to dialysis and Mom needed hers to go shopping? Let the whining ensue. Mom had to work and couldn't drive you home from school? Carp and complain. Cut the lawn (Dad couldn't)? Bitch, bitch, bitch. Couldn't do this or that or whatever because the overwhelming (but somehow, to us, mysteriously un-obvious) schedule wouldn't allow it? Moan and whine and throw a tantrum. In some ways, I suppose they did their jobs as parents too well; unless it was one of the inevitable hospitalizations, everything was just routine. There might have been some point at which they sat us down and talked to us about Dad's condition. It might have just been discussed in the course of daily life. I honestly don't remember.
The family went on a summer vacation to Boston, to look at schools (none of which I ended up going to). Get lost on the way back. I'd just got my driver's license, and I pestered my Mom to let me drive. Her Buick LeSabre. In downtown Boston. Thank God she was smarter than that!
We'd tour a school, take in some sights, drop Dad off at dialysis. It was routine. We came home. Went to a few other schools. I applied at a well-regarded local school, 45 minutes away from our house, because it seemed the thing to do. Dad had gone there for a year, I think. He seemed to like it when we checked it out. I remember being distinctly indifferent.
My indifference lasted till the envelopes started coming in. School A, wait-listed. Schools B thorugh D, rejected outright. School E, which I never wanted to go to, accepted (figures). School F, in Massachusetts, accepted. School G, my local didn't-really-care school, accepted.
School F was a really good, nationally-recognized school. I really wanted it. I got a scholarship. School G was a really good, not-so-well-known school. A lot of people I knew were going there. I got a half-scholarship. It didn't seem very tempting, not at first.
Mom and Dad told me I ought to decide on whichever school I liked more. But School F was a (then-) expensive plane ride home, and though we were comfortable, we didn't have the kind of money for monthly visits home or to school. It was a fifteen-hour drive home to Cleveland, assuming I could find a ride. And once that set in, I looked around. Realized that if something happened to Dad, I might not be able to get home in time. And John Carroll, School G, started to sound really, really attractive.
Clueless teenager though I was, I knew if Dad suspected I wasn't going to Massachusetts because of him, he'd never get over it. You'll have guessed by now, he wasn't the sort of guy who wanted special favors or people not to live their own lives just because he was sick. So I told stories about financial aid nightmares and how cold Massachusetts was and how awful it would be not to come home but for Christmas. I lied my ass off. And when, in my sophomore year, I got a call over spring break (I was at school with the rest of the softball team) telling me that Dad had been rushed to the hospital, I was able to be there in under an hour. That made it all worth it, at least to me.
Time dragged on. I graduated college. My parents got divorced. The strain of being married, on top of all the other accumulated pressures, just made staying together impossible. My brother graduated high school. That Christmas, Dad sat my brother and I down and showed us a letter he'd gotten from his doctor. He had five years left, no more than that. He couldn't actually tell us, not till we'd seen the letter. He couldn't say it out loud, because never in all his life had he accepted that he only had "X" years left. If I had to guess, I'd say it was the hardest thing he'd ever done, telling us that.
It didn't seem to make a difference in his condition. The pattern of the last seventeen years was harder to break than his doctors would have thought--he'd be rushed to the hospital, he'd be serious, he'd get better. We fooled ourselves, I think, into thinking it would go on forever.
I stayed in Cleveland. My brother went out-of-state for college, one state away. Eventually, he transferred to Ohio State for undergrad. Slowly, my parents got to be tentative friends again, then definitely friends, then good friends. They were both invited to all the same holiday gatherings, on both sides of our family. The pressure of being married had been taken out of the equation, and they both seemed easier in their own skins. Things gained an even keel, or what passed for one in our family.
But eventually, there were more hospitalizations, and the problems became more serious. After almost 20 years on dialysis, Dad was finally getting to the point where his body just couldn't take the pressure. His mind was clear when he was off painkillers, and he felt betrayed by his body. Think about it: three times a week, all the blood in your body is taken out of you by a machine and cleaned, then replaced. Think of all the minerals you lose that way, and how supplements can never really replace them. Think of how your bones get progressively more brittle, of how you're progressively more exhausted just getting up in the morning. Your immune system, after years of being compromised, starts to give up the fight. You are aware that this is going on. You're aware that, though the spirit is willing, the flesh is weaker than it's ever been. You know that your mind and heart could go on fighting forever, but that your body won't cooperate.
You once had a life millions of people would have envied, you were healthy, you had a beautiful wife and great kids and life seemed limitless in its possibilities. Now you're 54 years old. You look 10 years older. You've been sick--chronically, terminally ill--for nearly half your life. You're on so many drugs they fill a kitchen garbage bag. You can barely get to the grocery store and back without collapsing, but if you start giving up on the small things, how much longer can you fight the big battles? So you don't give up on the small stuff, and every day becomes a test of endurance, until not even the support of the woman you still feel married to, and your kids, and your family, can keep you going.
When I decided to go to law school, I went to Ohio State. My brother was there at the time. We were both at Ohio State, twenty-two years after my father's diagnosis, when the call came that we had to be there, now. We weren't ready for it, not even after twenty-two years. No one's ever ready, not really. It doesn't matter that the peace he'll find is going to be a blessing, it doesn't matter how hard you know life was for him at the end, you're never ready. But life happens, and you cope. So we did, because to do otherwise would have been the grossest kind of insult to the man who set a lifetime of examples for us.
Maybe you see the point of this whole story now. Maybe you saw it seventeen paragraphs ago, or after the first few lines of part 1. No matter, I'll spell it out.
We had the best of all worlds when it comes to chronic illness--the right condition (because had it been cancer or an aneurism or any number of other things, the fight would have been over almsot before it began), the best doctors and care available at the time, our financial situation was sound, our family was supportive, my Mom was healthy and my Dad, though not healthy, with help was able to make more than the most of a bad situation.
Can you imagine what would have happened in the world of today?
One of his doctors (who apparently is a sick man himself, as he likes to do math in his off-time) once calculated Dad's medical bills. He did this about 3 years and I'm not sure how many hospitalizations and dialysis sessions before my father passed away. He came up with (conservatively estimated) $4 million in treatment.
Do you think, in today's world, that my dad's company wouldn't have fired him outright once his condition affected his performance, rather than make the decision to retire him on disability?
Do you think he could find affordable health insurance coverage, once he was let go? Affordable health insurance that would have covered $4 million in medical treatment?
Do you think my brother and I would have had our father, or my mother her husband, for 22 years after he was diagnosed with acute kidney failure?
The easiest thing about chronic illness is bills. It's the same way for catastrophic injuries or a bad flu bug or a broken arm. The bills are the easiest part. (To clarify: I'm not saying paying them is the easiest part, but the bills themselves are simpler than worrying about your next meal or losing your job or getting to the hospital without a car to visit your sick kid or any number of things that illness/injury carries with it.)
Universal health care won't get rid of worry, or help your kids sleep at night, or help you tie your shoelaces one-handed or learn how to walk again after six months in a cast. It won't make your kidneys start working or stop your kids crying when your spouse goes to the hospital.
Universal health care won't solve all our problems, but it can make a lot of them a great deal easier to bear. It can take that one underlying and overarching problem--how to afford the care that will let you run the race at all--and remove it from the equation.
Our government isn't just by us, it's supposed to be for us. One of the best things it can do for us is to use what we give it to do right by us. My family isn't the only one that's had to run this race, but we were lucky. We didn't have the snarling dogs of the insurance companies and debt collectors and mortgage companies snapping at our heels while we ran.
It's high time the government made certain that everyone running the race against illness or injury can get as far as humanly possible.
It's long past time for universal health care.