I made a tough decision the other day. But first, some context.
I am totally deaf on my right side, the result of a lifetime of ear problems. As a kid, I had myriad ear infections, with fluid behind the ear which necessitated puncturing the ear drum to allow the fluid to drain (the medical term for this is a myringotomy). I underwent this painful procedure a number of times, never, to my memory, with any anesthetic.
By the time I was 11, I saw a specialist who recommended surgery to remove the destroyed middle ear bones and replace them with tissue and skin grafts. Being prudent and thoughtful parents, mine decided to get a second opinion. That doctor thought he might be able to clear this up in a few visits without resorting to surgery. Thus, I took the bus from our town in New Jersey to New York City, where my dad, who worked in Manhattan, met me at Port Authority and took me to see Dr. S once a month for some months. To “clear this up” Dr. S poured something into my ear to loosen stuff up and then suction it out. Now, this is the mid-60s and the “something” was carbon tetrachloride, now outlawed in the USA as a carcinogen. After the course of treatment did not work, we went the surgical route. A first surgery to scoop it out and then a second surgery to put stuff back in.
It didn’t work for long, and one more ear infection blew out the grafts. Result was I could not hear out of that ear. After a few years, after I went to college, my ear occasionally drained some nasty stuff, but I ignored it through college, through my first two years of work, and two years of business school.
Then, in my first post-business school job while flying with my boss, I got a terrible ear ache as the plane descended. My boss noticed and referred me to his ENT who took one look at my ear and said that there was no way to clean that up except surgery. He told me it would take about 90 minutes.
I was in my mid-twenties and had lived in this city for less than 6 months, so my mother came to stay with me through the process, a 90-minute surgery and a couple of days recovery.
Long story short, I was on the operating table for 14 hours. Somewhere around the half-way point, the surgeon came out and told my mom it wasn’t going well. Turns out what I had was a benign, self-generating tumor called a cholesteatoma which had pretty much destroyed my middle ear, mastoid, and had eaten through the brain wall. (The surgeon told me later this was the first time he saw brain during an ear surgery.) Neurosurgeons were called in; they took some muscle from my leg and used it to patch the hole in my braincase and I eventually healed up and went back to work.
Yes, there are many who believe that this episode explains quite a bit about me.
Two years later, I am sitting in a meeting, and I feel something drip on my neck. Happens a few more times and I keep looking up and seeing no ceiling drip. Finally, I realize that a clear liquid is dripping from my ear. Because I am a bit weird, I taste the liquid. It is sweet. I called a physician friend (who I, to this day, I adore and still call Doc) and I asked her if it was possible to leak spinal fluid from your ear. Go ahead, ask me how I knew that spinal fluid was sweet. Must have read it somewhere.
Now Doc had been around for the first 14-hour brain-revealing ear surgery so she says, Dan, get in your car and drive to the ER NOW. I followed her instructions and told the ER intern (this was a teaching hospital) that I think I am leaking spinal fluid from my ear. Said intern says that is impossible. I insist. Intern hands me a test tube and I fill about 1/3 of the test tube in 15 minutes. He takes the test tube and returns about 30 minutes later white as a sheet and admits me.
I spent a very long time getting my head CT scanned. The chief neurosurgery resident spends like 20 hours in a room with my hundreds of CT pictures and finally comes to tell me that she found the leak. I asked what my options were. She looked at me incredulously and said surgery is the only option. And she added, also, you should already be dead from meningitis. Doc already knew this because she talked to the neurosurgery team. But what she didn’t tell me at the time (and not until years later) was that no one was very confident about the outcome. Risks included brain injury, facial paralysis, and other equally appealing possibilities.
So, I underwent another 14-hour neurosurgery, recovered and returned to work. A bit too early, but that is a story for another time.
Two years later, I went through it all over again. This time I saw a new ENT surgeon who says he had seen one of these before (yup, just one). He says he knows what to do, which is plug the leak and then obliterate the ear canal so that no moisture, no air, no bacteria can get in and start this thing up again.
Another 14 hours later, I am deaf as a doornail on the right side but it worked. I have had no ear problems for the last 40 years. My right ear is a bit out of symmetry (if you want to know what that looks like, check out Steven Colbert — he had the same thing I did without the brain involvment). Needless to say, I owe Doc, that fabulous (but unfortunately nameless) neurosurgery resident, and the ENT surgeon a whole hell of a lot.
I spent the past 40 years living with my limited hearing. I can’t hear much when there is significant background noise, especially at large dinner parties where I can only hear the person to my left. I can’t hear the person in the passenger seat when I am driving. I talk too loud. I play music too loud. But with no middle ear, traditional hearing aids could not solve my problem. And to be honest, I got used to it. The best part? At night, with my good ear down on the pillow, the world disappears, and everything is quiet. (My wife has thoughts about my inability to hear a crying baby at night, but that too is a story for another day.)
Then bone conduction headphones came out and when I figured out how to apply pressure to the right side of the headset against my skull, I could hear out of that side.
Then a couple of years ago, I met a hearing-impaired guy who told me that hearing technology had advanced so much that I should give it a look.
Intrigued, I saw my ENT who referred me to a specialist who, after some testing and CAT scans, said I was a perfect candidate for a bone conduction implant. I was so taken with this that I said yes and scheduled a surgery date.
Then, I read the materials. The procedure implants a magnetic gadget just under the skin, that is connected to a “spike” drilled into the bone which will conduct sound waves from the inner ear, through the bone, to an external magnetic receiver. It will work just like the bone conduction headphones (actually, much, much better) and I will not have to keep my finger on it all the time to maintain contact with my skull.
Wait, what? “Drilling?” Into my 6+ times surgically repaired head? So that I can hear better in social situations? If I count it up, I have been in surgery more than 15 times – ear, adenoids, tonsils (twice), hernia, elbow, shoulders, cataracts (love getting old, eh?). Do I really want to do this now at the age of 67 when I already see shoulder and knee surgery in my future? And, besides, haven’t I been complaining about how noisy the world is?
After running through this thought cycle a couple hundred times, I decided that I want nothing to do with another surgery. I will explore non-invasive alternatives that have much improved outcomes due to advances in technology. So, I cancelled the surgery.
The very next day, I received a message from the hospital informing me that the total cost of this procedure would be $58,433.05 and that my Medicare and Anthem supplemental insurance will cover $20,451.57 leaving me a $37,981.48 bill.
Never have I felt so good about a decision. WTF? I know I should have asked the price before scheduling the surgery, but this was so out of the range I could even possibly imagine.
Then it hit me. The only people that could have this done are rich people. The kids with malfunctioning inner ears only get their cochlear implants if their parents cash in their savings or 401K or they get the someone else to pay for it. Those with employee-based insurance cannot afford this. The Marketplace insurance certainly won’t cover this. This is completely nuts. If I was completely deaf, sure, I’d find a way or if I was a kid, my parents might be able to find a way even if it wiped them out financially. But anyone without substantial resources would be shit out of luck. I know now for certain that Medicare does not cover this adequately.
And then I reflected on my past. Without really excellent and affordable employer-provided insurance coverage (first, my father’s, then my own) , what would my personal surgical history have cost? I am guessing millions.
But as one of the most sophisticated, technologically advanced and generally liberal (note the lower-case letter l) societies on the planet I must ask — is this right? Is this how it needs to be or should be? Would it not be better to create the largest risk pool imaginable and ensure everyone is included to reduce the risk?
If they had had to pay for all of my medical care, my parents would have been bankrupt. I would probably also be bankrupt, but I would not care because I would also probably be dead.
The United States – the largest, most productive society in human history – has the highest healthcare costs among developed nations and nowhere near the highest longevity nor happiness. The real question is what should medical care cost? And who should pay for it?
The answer of “what should it cost” is unknowable, but I am willing to bet that there is no one reading this who doesn’t think it would be some very significant amount less. That is certainly what I think.
And as for who should pay for it, why is the United States the only developed country where healthcare is not a right? Yeah, I know that the Canadian and UK healthcare systems have major issues with availability, but this is the good old USA…..we can send people to the moon, take pictures of the first stars, help 1-pound babies to survive, and help old guys have erections. Surely we can figure out how to provide health care, can’t we? How can places like Germany, Japan, Norway, and Sweden have longer life expectancy at half the cost that we do?
I think the real answer is part and parcel due to the basic attitudes fueling the culture wars we are suffering thought right now. We do not solve the problem because too many politicians have convinced too many unthoughtful people that “universal health care” is “socialism.” And while it is never spoken out loud, these politicians really think “socialism” is “free stuff” for people they don’t like because of their color, their national origin, their religion, their abilities, or their lousy luck.
The optimist in me says someday, this will change. The pessimist in me says Americans’ demonstrated lack of critical thinking skills (think January 6, Fox News, Pizzagate, Jewish space lasers, anti-“wokeness”, etc.) makes that someday a long way off. And that is a God-damned shame.
Adult Language Is Possible 