You need it the most when you have it the least

I go to my neurologist and say that my back still hurts like hell 73-days after I crushed my first lumbar vertebra, and I ask him what I should do. He proposes a kind of operation called a kyphoplasty in which a balloon is stuffed inside the vertebra, inflated with air, and filled with quick-hardening cement. Now, I know that the AAOS (American Association of Orthopedic Surgeons) doesn’t much like kyphoplasty, but I also know it’s commonly done because there aren’t a lot of great alternatives, and because it’s a low-risk moneymaker that doesn’t require a high degree of doctorly skill and intelligence. Still, it is surgery, and no surgery is so minor but what it can’t mess you up.

So, I ask him if maybe he could he hold off on the surgery for awhile and send me to physical therapy first, and he says that, yeah, that might work, and he gives me a PT referral. I then ask him whether an AAOS-recommended drug named Calcitonin might help, and he says it might, and he gives me a prescription. He no doubt realizes by now that I’ve been reading about my problem on the Internet, and a lot of doctors hate it when that happens because it’s ever so much easier and more profitable when sick people keep their mouths shut and do as they’re told.

Next, I ask him what he thinks of radio frequency ablation as a less invasive alternative to kyphoplasty, that is if it turns out that PT and Calcitonin aren’t enough to get me back on track, and as soon as I say this, he groans and puts his head in his hands. I’ve never seen a doctor do that before, so I just sit there looking at him and wondering what his next trick will be. Not a very good one as it turns out, because all he does is to change the subject. I don’t remember what he changed it to, because I’m thinking, wait just a damn minute here, there’s a question on the floor, so I interrupt him as gently as I can (doctors tend to be childish and fragile) by saying, “From your reaction, I assume you consider RFA too absurd to discuss, but before I consent to surgery, I very much want to investigate less invasive options, and from what little I know of RFA, it sounds promising, plus it’s a whole lot less scary than having my vertebra stuffed with a cement that might escape and wreak havoc with my spinal cord and surrounding vertebra.” He says, “I have two colleagues who perform the procedure, and I will refer you to one of them if you would like.” You will note that, if I hadn’t made some suggestions, only one treatment would have been proposed, and it wouldn’t have been the preferred one. He showed no empathy, volunteered little information, and became impatient with questions. In other words, he behaved like a typical doctor except for the groaning and head-holding part, idiosyncrasies that brought his grade for the visit down to a D+.

If you’re new to being a patient, you need to know that you can get better treatment if you take an active role in researching every aspect of your problem. Here’s why:

1) You will better understand what your doctor is talking about, and you will know what questions to ask in response.

2) Your doctor will take you more seriously even if he resents your unwillingness to treat him like a demigod.

3) Doctors sometimes fall behind on the latest research, so it's possible that they might learn from you.

4) Doctors like to stay within the confines of a limited number of well-beaten paths that they can walk without thinking, and this means that they tend to employ a surprisingly limited number of drugs, tests, and procedures.

5) Doctors tend to know little about treatments that fall outside their area of expertise.

6) You’ll be less likely to submit to a dangerous and expensive procedure that offers little if any promise of helping you.

7) If you run into an authoritarian doctor who takes the attitude that, “I AM A DOCTOR. How DARE you learn on your own; how DARE you question anything I say; and how DARE you suggest other treatment possibilities,” it will enable you to find a good doctor sooner.

8) You will feel strong, smart, and in control.

9) You will gain interesting knowledge that you can use to your own benefit and the benefit of others.

On the downside, it’s emotionally difficult to assume what verges on an adversarial relationship with your doctor, but, sad to say, the alternative is oftentimes to allow your doctor to run all over you by treating you like you’re worthless and stupid. Obviously, not all doctors are callous, arrogant, unsupportive assholes, but based upon my experiences with scores—at least—of them, I can but observe that most are. Yet, you need them, so the trick is to find a way to relate to them that is as beneficial to you as possible. I’ve learned that this means taking an active role in your own care even if they don’t like it, and being willing to find another doctor if they dislike it enough that it’s impossible to work with them. If this should happen, it won’t be your fault. You will simply be doing what your doctor gets rich from charging hurting people for, which is to see that they get the care they need.

A relative named Patsy broke her back at the same time I broke mine, only her break seems to have left her in considerably more pain. Her doctor prescribed Vicodin, a weak painkiller, that would have been adequate even if it had worked, which it didn’t due to the fact that it made her too sick to take it. So, what does her doctor do when she tells him she can’t take her medicine? Nothing. Despite the fact that he had myriad painkillers to choose from, he left her in pain for no fucking reason. If he had been my doctor, I could have proposed a half-dozen alternatives off the top of my head, but because Patsy knows nothing about pain control, or medicine in general, or how doctors tend to behave, she went home assuming that this man whom she had gone to for help when she was frightened and in pain, had done his best to help her and was out of options. This is what happens to people who are ignorant or passive, and Patsy was both. I can find a lot of reasons to mistrust and despise doctors and very few to regard them positively. So, yet again, I will tell you that you have to look out for yourself. Ironically, you need strength the most when you have it the least.

Two days

The first day

If the number of hours that the average believer prays for himself and his loved ones was stacked-up against the time spent praying for world peace and an end to hunger, which stack would be higher? It was a funny question to wake up to, but it’s the one I had after a horrific night last night, a night spent, frankly, looking forward to death. I thought I would have beaten this broken back problem by now—just as I once thought I would beat my shoulder problems—but this is the two month anniversary of my fall, and I’m nowhere near well, and it scares me so much that I’ve shed tears over it, this being the first time in my life that I cried because I was afraid.

In America, at least, when you complain of pain to whomever you see before you see your doctor, you’re asked to rate it on a scale of one to ten with ten being the worst pain imaginable and none of the other numbers being defined. If you ask your questioner to define the difference between, say, a pain level of four and a pain level of six, what do you think she (it’s always a she) will say? “Well, six is two points worse than four.” The query becomes a game in which the patient tries to guess which number he needs to give in order to have his problem taken seriously while avoiding any suspicion on the doctor’s part that he might be exaggerating. I realized last night that I’m no longer going to answer the question because it’s bullshit, and I’m sick of bullshit. I put up with way more of it than would seem necessary, and I’m sure you do too.

I prayed last night—my situation being that desperate—not to some supernatural entity but to a place within myself that I used to visit when I needed guidance, but the existence of which I have come to doubt. My prayer went, “Wisdom be in my head, and in my understanding. Wisdom be in my eyes, and in my seeing. Wisdom be in my mouth and in my speaking. Wisdom be in my heart and in my thinking. Wisdom be at my death, and at my departing,” these being close to the words that I loved when Father Hale said them every Sunday at Redeemer Episcopal forty years ago. Last night, they came from my lips like a stillborn baby so decayed that it disintegrated in the hands of the midwife. I was shocked, even horrified. I had expected little of good from the ancient words—a momentary connection with peace, youth, health, safety, community, idealism, and the beauty of morning light through stained glass, perhaps—but I didn’t foresee disgust, and it hurt me to realize how hardened I’ve become. I’ve tried to hold, at least metaphorically, to that which I once found beautiful, while gently letting go of the ugliness, but I have failed.

Then a song about heaven (from my fundamentalist childhood) came to mind, but I can’t remember which one. Christian music touches me more than spoken prayers, even really old and quaint spoken prayers like the one I had just said. Who wouldn’t want to go to a place where everyday is a picnic with your loved ones in resplendent surroundings? Singing holy, holy, holy forever-and-ever-and-ever might sound like a complete bore, but having your every dream realized would be okay, or at least I thought so when I was a child who loved to run for joy well past dark and had no desire whatsoever to “get things done.” Like the pain scale, church is a game with serious overtones, or at least it became that way for me. As for how it affects other people, I can only take their words and compare them to their actions, and on that basis, church appears to do more harm than good.

Of course, that is religion. God is another matter. I don’t know why I think about God more, I suspect, than almost anyone who believes in God. I have often said that I too would like to believe in God, and so here I stand, ripe for conversion, so convert me. Show me the error of my ways, so that I too can hold a happy view, a view that gives meaning to a life of pain, a life from which I will be extricated within twenty years or so as if I had never lived, all this pain for nothing, and with the sure knowledge that nothing I did in life will have mattered except to a very few people who will also be dead soon if they’re not already dead. Like the believer, I would like to wake up in the morning to see God peeping lovingly through my window, instead of awakening to a universe of insensate matter and energy that rumbles through the hallways of time and space, knocking against one another for no reason while creating and destroying an endless succession of worlds in the cold, dark void of space. All I ask is that you make your God consistent with the facts. Not a perfect God who nonetheless created an imperfect universe and was forced to die so that he could forgive its imperfection, but a God who provides answers rather than provocations, a God who is both worthy of worship and consistent—as opposed to oxymoronic—with reality. 

The next day

Yesterday, I became so desperate to escape the pain and fear that I put on a great big Fentanyl patch (big for Fentanyl is about an inch square), and it left me wide awake and deliriously happy last night, not every moment of the night, but most moments of the night. How am I to wrap my mind around the fact that the things that I think make me happy or sad have no power except inasmuch as they stimulate various parts of my brain, and that no person or event can stimulate those parts quite so profoundly as drugs? I love nothing and no one like I love Peggy, yet even my happiest moments with her are accompanied by the crushing knowledge that, before too many more years, one of us will die and leave the other alone. After enough Fentanyl, I can say with the apostle:

“Where, O death, is your victory? Where, O death, is your sting?”

Drugs make the universe into a toy that was put here for my pleasure. Why then, am I not an addict? I don’t think I have any choice in the matter. Flip one chromosomal switch, and I’m one way; flip another, and I’m the opposite. Maybe this is why 5% of people are atheists, but even if we’re right about the irrationality of theism, how much credit can we take for our insight? 

Brewsky was behind me as I finished this post, so I took his picture. As you can see, he is sitting on a small ladder, and, yes, I have been using that ladder as well as the ladder that I fell from two months ago. I re-floored and repainted this room just before my fall.

How like Nigeria

I know a former missionary to Nigeria, a country infamous for its Internet scams. She describes it as a land in which honor is nonexistent, money counts for everything, and people learn to cheat one another from the cradle. I didn’t believe her because, as I imagined, societal cohesion depends upon trust more than law, so if you create an environment in which no one can trust anyone, you destroy the possibility of a cohesive society. She stood her ground, saying that the kind of greed and manipulation that people in this country associate with the worst of the worst—Wall Street bankers and hedge fund managers—is status quo in Nigeria where to be honest is to be a sucker. I’ve since come to wonder how different America is from Nigeria. I’ll outline the reasons for my concern by sharing a few news items and personal experiences from the past couple of weeks.

1) The number of people imprisoned in the US has risen by 800% in the past 30 years making us the world’s leader in locking up our own people. One reason for the increase is that US prisons have increasingly come under private management, and before a company will agree to manage a prison, the government must agree to maintain an occupancy rate of 90%. Rehabilitation hell! We need people in prisons, or at least Prison, Inc. and the government officials who negotiate the contracts do, and they’re the ones in charge. Why else would 60% of the prison population have been locked away for non-violent crimes?

2) Next month, I’ll be eligible for Medicare, which is government-run health insurance for people who are old or disabled (taxpayers pay into the system throughout their working lives in order to benefit from it when they need it). Because Medicare isn’t sufficient to keep a person from going bankrupt due to medical expenses, the government works with private insurers whose job it is step in where Medicare leaves off. There are dozens of these insurers, and they offer dozens of different plans that cover various things and include various extras. Determining which insurer and which plan is best is impossible unless you have a staff of lawyers who are versed in alphabet soup and willing to read through one 150-page policy book after another, each of which is meant to defy comprehension. Why, if the goal is to provide health care to those whose minds and bodies are growing weaker due to age and/or disability, doesn’t the government create a simple system under which the policies of these private insurers can be easily understood and compared or, better yet, eliminated altogether? My guess is that such a system would defeat the goal, which is to make money for private insurers.

“But why,” you might ask, “does the government care about making money for private insurers?” Because those insurers provide politicians with massive campaign contributions, expensive gifts, and private sector sinecures. “But why does selling incomprehensible insurance policies to Medicare recipients enable insurance companies to make more money?” Because it eliminates cost-versus-quality competition. It’s like when you go to buy a mattress, and every store has a different name for the same product. By making it impossible for customers to compare prices, stores can compete on the basis of window-dressing rather than cost or quality, and this means more money for everyone, except the consumer. What makes this obfuscation especially immoral in the case of Medicare—and keeping people in prison—is that it harms those who are the least able to protect themselves—the ignorant, the impoverished, the mentally challenged, and the taxpayer.

3) There was a time when only loan sharks charged 30% interest, but the fools didn’t know enough to buy the government so that they could do it legally. Who do you turn to when you can’t pay your medical bills or you’re facing foreclosure? Chase and Citibank are there for you when you think things can’t get any worse, but what happens when things do get worse, when the medical bills keep coming, the bank keeps threatening your home, and you can no longer use your credit cards to juggle your bills because you can no longer afford the minimum monthly payments? Maybe it’s the time to remind yourself that America is “the land of opportunity,” the land that every politician calls the fairest, the most generous, and the most compassionate nation on earth?

4) When the bills came in for my latest round of physical therapy, I noticed that I had never once received what I was charged for—entire series of 15-minute ultrasound sessions, 15-minute manual manipulation sessions, 15-minute exercise sessions, and 15-minute cervical traction sessions. When I finally found someone other than the therapist to complain to, he responded as follows about Oregon Medical Group’s billing policy: “…the Physical Therapist can provide anywhere from 8 minutes to 22 minutes and bill for 15 minutes of therapy.” No session ever ran over 8 minutes.

  

5) Reminisce Magazine. Its writers receive no compensation for their stories and photos, and the company that owns Reminisce owns a slew of other quaint publications. Peggy likes Reminisce because it takes her back to the ‘50s when she believed her parents could protect her from serious harm, when—as she remembers it—people were kind and noble, and America was admirable. I want Peggy to have a magazine that brings her such joy, and I wish in retrospect that I had kept its ugly little secret to myself, its secret being that, as soon as you subscribe—and Reminisce encourages its readers to subscribe for years at a time—it starts sending renewal notices that begin with “This is your last chance to keep Reminisce coming…” but don’t give you a clue as to when your current subscription expires. Like most cheats, Reminisce preys on a vulnerable population. 

6) But what of the rest of us? Is it even possible to be an ethical American? I’ve focused on those who get rich by hurting people, but what of the millions who work as cogs in the rich people’s wheels, the ones who staff the magazine subscription centers; who administer the “Medicare Advantage Plans;” who work in the prisons; who turn people away because they can’t afford medical care; who, in order to have a secure retirement, invest in companies whose policy is profit before all; all these plus the 300-million people whose taxes finance America’s wars and war crimes, its profit-driven destruction of our environment, its arrogance, its greed?

That which I wondered about Nigeria, I now wonder about my own country. What cohesion binds a nation of people who equate morality with doing the legal minimum, who elect conservative politicians for the purpose of abolishing such legal protections as still stand between big business and the consumer, and between the patient and the healthcare industry? How far do we have to go before we’re like Nigeria, and what will be the cost when we are? I think Peggy is right about the old days in that, despite some significant human rights gains, too many of the gains America has made have been technological, and too many of the losses have been in such areas as trust, idealism, and community. Pay attention to the news and current culture. Look at the filth that is on TV; observe the isolation of people on cellphones; note the abuse that is commonplace in Internet discussion forums; listen to the venom of talk radio. Things which once would have been unspeakably rude, tacky, vulgar, trashy, mean-spirited, greedy, self-abasing, and self-centered, are now the norm. The biggest difference between today and much of my life is that Americans used to be optimists. Even during the darkest days of the ‘60s, the feeling was that positive change could and would come. When was the last time you heard anyone but a politician say that? 

I know that this post proves nothing, but for those of us who remember an era when houses were seldom locked and bicycles didn't even have locks, experience means a lot, and twenty years of dropping crime rates matters but little. I pity those who have never known this country to be any way but what it now is because, despite its former faults, there was a time when I could say with a straight face that America stood for that which was good.