I LAUNCH THIS ESSAY with a little trepidation. See, on the one hand you have your Charles Krauthammers. Krauthammer, as you may or may not know, has been paralyzed since an accident he had a few decades ago. Krauthammer is also the gold standard for columnists and political writers – sharp and insightful, the man practically oozes gravitas. Krauthammer hardly ever mentions his health challenges which are no doubt legion.
And then on the other hand you have your Andrew Sullivans. Like Krauthammer, Sullivan is a gifted writer. And also like Krauthammer, Sullivan has significant health issues – Sullivan has AIDS. But unlike Krauthammer, Sullivan relentlessly catalogues his health travails in an often embarrassing fashion. Sullivan’s blog, partly because of his willingness to be too personal too often, has become a tedious exercise in narcissism and writerly self-indulgence.
So, in offering what’s about to come, I want to be sure that I stay on the Krauthammer side of things.
As most of you know, I have Cystic Fibrosis (CF), a genetic lung disease. As few of you know, yesterday was my 38th birthday, which makes me pretty old for a guy with CF. Because most of my loyal readers are aware of my health issues, any unscheduled absences from the blogosphere on my part tend to trigger some concern in Soxblog nation.
I know this because I receive a small avalanche of email each day I don’t post asking me if I’m okay. I really appreciate those messages – as I’ve said many times to many different email correspondents, the best part of blogging as opposed to journalism is the relationships that you’re able to develop with members of your audience.
Anyway, I got a few letters during my most recent disappearance suggesting that I should offer my audience a fuller explanation of my health situation. Having thought about that matter at some length, I’ve decided that’s a fair request. After all, you people have endured countless tedious postings on the Daily Kos and John Kerry (an obscure Senator from Massachusetts who once ran for president). It’s fair to say a little payback is in order.
AS I SAID ABOVE, 38 IS OLD for someone with Cystic Fibrosis. Before getting to my current condition, let me talk a bit about my condition when I was a younger man. That’s a subject I like a lot more, anyway.
When I was in my 20’s, I was something to see if I do say so myself. There are over a thousand different genetic variations of CF; I was blessed with having one of the more mild ones. That meant while I wasn’t asymptomatic, my range of activities was pretty much unlimited by the disease.
Besides, I worked out like a nut. I lifted weights and jogged so hard that a friend of mine suggested my running style resembled a “man on fire.” I took great pride in “beating the disease.” I wore a size 44 suit jacket and had a 32” waist. I felt bullet-proof, and looked a little bullet-proof, too.
What I didn’t know then that I do know now is I was just lucky. Perhaps it’s normal to ascribe our good luck to hard work so we feel we deserved it or earned it; on the other hand, we ascribe our bad luck, to, well, bad luck. If so, I was very normal in that regard.
Although I thought my good condition was the just desserts of working out and taking my medicine, I was just a lucky young man. I had the lung function of typically healthy (and very fit) man of my age. Yes, the hard work I put in had a lot to do with the level of fitness I enjoyed. The typical healthy 27 year old can’t run 5 miles in 35 minutes or bench press 245 pounds six times – I could.
But the fact that I enjoyed good enough health to engage in such pursuits in the first place was lucky. The genetic variation I had of the disease meant I would be healthy through my 20’s. This was the hand I was dealt back then. Like a lot of people, I tended to credit my run of luck at the table to skill. No sin there, I guess – just garden variety narcissism.
But my luck has turned in my 30’s. Here’s the situation now as I’m closing in on 40: I have a pretty serious disease.
First, the good news – for someone who’s technically in the shape I’m in, I function at an extremely high level. I’m still able to do a few miles on the treadmill (walking now, though – running is a distant memory), lift weights, and golf as long as there’s a cart available to zip me around. If you met me, you wouldn’t take me for an ill person. If you spent a little more time with me, you’d notice I have a cough but probably wouldn’t think anything more dire than that was afoot. You might, however, notice that whenever I have to climb a flight of stairs I make a face that’s similar to the one an eight year old makes when he has to kiss his great aunt, the one who smells like mothballs.
Now the less good news – I’m awaiting a lung transplant which hopefully will extend my life. Most of you are probably unfamiliar with lung transplants, but a little Googling will tell you lung transplants really aren’t a cure for anyone’s underlying condition. What doctors routinely say is that undergoing a lung transplant is trading one disease (your old one like Emphysema or in my case CF) for a new one (the chronic challenge of avoiding rejection of the transplanted lungs). Lung transplants don’t have particularly great shelf lives. Median survival is around five years.
The upside is that a lung transplant gives you a “crack at bat.” You may live two years, you may live fifteen. There’s a strong likelihood that you’ll enjoy better health than you can remember for at least some spell of time. For me, there’s a chance that running seven minute miles isn’t only in my past. That’s very exciting.
SO HERE’S WHAT HAPPENED to make me disappear for the past couple of weeks. I’ve been on the lung transplant list for about a year, but there was no great urgency to go through the process. Like I said, I function pretty highly and immensely enjoy the life I have. Besides, there’s something about having my torso ripped open and my lungs removed that makes me want to delay the procedure for as long as possible. Call me a procrastinator – that’s long been one of my weaknesses anyway (just ask my editors).
Lungs and other organs were (and are) disbursed by a federal government program. Now, whenever the federal government involves itself in matters of life and death, you can expect monumental stupidity.
The government long ago decided that organs would be disbursed exclusively on the basis of how long the patient had spent on the waiting list. The seriousness of one’s illness or the prospects for one’s recovery were incredibly not considered. This was, needless to say, phenomenally obtuse.
First of all, it incentivized everyone involved to “game” the system. If you thought you might need a kidney in three years, your doctor would put you on the list immediately. And then when you got enough time to get to the top of the list, you would de-activate but you would still have those days “in the bank.” Then when you wanted that kidney you would re-activate and zip to the top of the list.
All of which worked out great for you if you gamed the system just right. The problem was you could re-activate yourself and jump over people who were both sicker than you and had greater recovery potential than you simply because you or your doctor had been smart enough to put those “days in the bank” a while back. Like I said, pretty dumb – your government at work.
But shockingly, at the start of this year a mere two decades after organ transplantation became common, the federal government began a new allocation system based on a formula that measured the patient’s need and his likelihood of success. Go figure- the government got something right and it only took twenty years. (Thinking of the Space Shuttle, maybe I should be thankful for this relatively rapid turnaround.)
I didn’t realize it would happen this way, but the new allocation system impacted me profoundly. I got a call three weeks ago that I had become number 5 on the local lung transplant list. That meant it was time for me to begin carrying a beeper and be available 24/7 because the next set of lungs that came up could theoretically belong to me.
This call came out of the blue and was a shock to both me and Mrs. Soxblog. In the past couple of years, if I do say so myself, I had made a pretty nimble adjustment to being physically limited. I had found new hobbies that didn’t require a surfeit of physical energy (like blogging) and had even begun to swallow my pride and admit that I had some physical problems and made appropriate adjustments like getting a handicap placard for my car (which, I might add, is virtually useless in Florida since the placards are so common you have about as much chance as winning the lottery as finding an empty handicap parking space).
The latter part, admitting my difficulties to myself and others, in particular did not come easy. To understand why, you have to know how I’ve made sort of a cottage industry of being screwed up in that regard.
No kid wants to be different than the other children, and while growing up I was normal in that way. But having CF makes you different, so I got in the habit of covering up what made me different. Unfortunately, it was a habit that I never completely got out of. When I took pills before meals, I did so surreptitiously; when a physical therapist visited our house to perform airway clearance and neighborhood friends asked who he was, I would make up something stupid. Even in college, only one friend knew I had CF (even though I had a wealth of health problems during those four years).
So I was something of an idiot. But in my defense, I was very macho and very proud. I still am. Being pitied was the worst thing imaginable to me; it still ranks pretty high on the list of things I’d like to avoid. And I never expected or wanted to be graded on a sliding scale because breathing was tougher for me than other people. If I thought a racquetball opponent was going easy on me because I was short of breath, I would have drilled him in the back of the head. Not that such a thing ever happened.
Still, my attitude was generally unhealthy. But hey, I was young – young people are allowed a little extra license when it comes to being stupid and while at times I may have abused that license, I still did my best.
In recent years, however, I’ve made some positive strides. I’ve become more forthcoming about my condition and adjusted to my physical limitations. I’ve actually been quite enjoying my new life of relative openness and limited physical activity.
Happily married, my days filled up with things I enjoy, I’m a pretty lucky guy and my wife and I are a very happy couple. And because no one knows what course a given CF patient’s disease will take, we had this hope that I could continue in my current fashion “indefinitely.” Which to some extent was true. But there are two sides to “indefinitely,” one of which we didn’t give much consideration to.
The phone call from the lung transplant clinic introduced a hard logic to the equation that had been previously lacking. In my case, the hard logic suggested that my “indefinitely” probably meant not decades but that without a transplant it was likely that I wouldn’t be around for Hilary Clinton’s inaugural and thus would not be spared the bother of turning over in my grave.
The procedure itself isn’t without risk, and while I’m assured the operation is painless that sounds like a bunch of hooey to me. A lifetime of undergoing medical procedures has taught me that most things will hurt as much as common sense dictates they will. For instance, having a tiny needle inserted into the big vein in your arm in order to suck some blood out – you’d figure that wouldn’t hurt that much. On the other hand, a large needle being inserted into a hot nerve in your gum-line to pave the way for a root canal – you’d figure that would smart quite a bit. Having one’s lungs ripped out and replaced by a stranger’s – no amount of convincing will persuade me that’s a walk in the park. But it should be worth it. That’s what the odds say.
So I’ve been preoccupied – not ill, just pre-occupied. Normally I would have been all over the busy news period we’ve had the last few weeks. I’m sure the Karl Rove thing would have especially enraptured me since it’s such a wonderful example of left wing echo chamber thinking. But it wouldn’t overstate things that much to say I just didn’t give a shit. I’ve had other stuff on my mind.
BUT LIFE GOES ON, and now I’m back. It’s time to move on with my new reality. In addition to being back on the blog, I’ve got a lengthy piece coming out on the Standard’s website tomorrow which I think you’ll love and should be pretty provocative (in a good way, not a Larry Summers sort of way).
And I’ll make you this deal – if I go in for the lung transplant I’ll let the Soxblog community know. And if there’s anything else really major that I think you need to know, I’ll post it.
But like I said at the beginning of this essay, I don’t want to become Andrew Sullivan. This will not become a diary of my health woes combined with other personal obsessions. I’d find it boring to write such a thing, and you would find it boring to read.
The letter that partly convinced me to write this essay suggested that I should do something to put everyone’s mind at ease. I have a feeling the foregoing will have the opposite effect. Sorry about that.
But if I have a core philosophical belief, it’s this – look things in the eye. Admit the reality of a situation and deal with it. Sometimes reality isn’t all that we wish it were – no news there, right?
Lord knows I haven’t always practiced my preaching. I’ve hid from the truth and put off “judgment days” with uncommon skill during my life. But those aren’t options now.
So all I can tell you is that things will be normal around here until they’re not anymore. I love doing this blog and I love interacting with my readers, even the cranky liberal ones. I’m going to keep on doing it.
Responses? Thoughts? Please email them to me at firstname.lastname@example.org