Random Thoughts from a Restless Mind

It’s still winter here in northeast Ohio, regardless of what the calendar may be saying. We don’t have weather right now, we just have shades of grey. My son, Randy: “I don’t know, Dad, seems like every day is either light grey or dark grey right now.”

I find it harder, and longer, and more of a conscious struggle to soldier on in the face of the obstacles and set-backs of daily life at this time of year. Tiny, insignificant inconveniences take on a wholly unreasonable level of importance (a series of dropped cell calls yesterday, for instance), making whatever shade of grey at least momentarily darker. The medical term for this is “Seasonal Affective Disorder”, and man, I’ve got it in spades. The effect is different on any affect I’m sure, but it makes me dark and edgy, on the verge of eruption, the trigger hair and phasers set on annihilate.

And yet, while my challenges and obstacles may or may not subside as grey FINALLY slides into Spring, I know that for me this is just a seasonal effect, born of geography, and borne as a consequence of geographical choice. With some 5 major moves behind me I have managed to land each time at the same latitude, plus or minus the same relative number of cloud-covered days, covered in mud and shivering.

There live among us souls for whom grey is not a seasonal phenomenon, who struggle each and every day to lighten the internal weather as they soldier on. For them even the lightest days are dark, and the best days are those that have the least pain. The darkest days are down right frightening, unknown and unknowable to the rest of us, where there may be only a speck of light somewhere on the far horizon, with consequences and choices that are more frightening, still. These individuals live in a world not of their choosing, shades of grey surrounding them always and everywhere.

Depression, real depression that descends upon a person and declines to leave of its own accord, is fundamentally different from sadness, from unhappiness. It is organic. It comes from within. While one may be able to pinpoint an event or time that might be a trigger, depression once it sets in is not reactive to any one aspect of a life. It is not present in response to something or someone bad. True depression, as well as its close cousin anxiety, gurgles and bubbles and flows from a toxic well within, a cold weather front that arrives and stays.

We live, or fancy that we live, in a country with “up by your bootstrap” values. “Come ON…get OVER it” is a mantra ingrained in our national psyche. Frankly, that actually works very well, eventually, for the sadness or unhappiness one feels in reaction to unpleasantness. Depression, however, is as unresponsive to platitude as this Cleveland season of Grey, and depression has no calendar to eventually force away the Grey.

People who inhabit this world in which shades of grey are all that exist have a problem which is as serious and life-threatening as any other “invisible” problem. Think diabetes: there is no outward manifestation of diabetes, no stigmata to alert the observer to its presence, and yet without insulin the diabetic will die. So, too, the soul afflicted with depression must be treated for what is organic and internal. Voluminous research has shown that a combination of “Talk Therapy” and medicine is necessary, and that for most it is necessary for the better part of a lifetime. Without this lives are lost. We’d not deprive the diabetic of insulin, would we? And yet…

Various medicines for “depression” are rampantly prescribed for varying degrees of sadness, unhappiness, even ennui. I confess to being conflicted about this. Who am I to deprive anyone of additional happiness, or less sadness, or even less time in the middle of life’s  great Bell Curve of emotion. But these medicines are expensive, and the “market” effects of their broader use affects the conversation about treating organic depression as the medical entity that it is. This is a hard conversation; where is the line?

Smarter people than I have failed to find a bright dividing line, to be sure, but there IS a difference. We lose people we love who live only in a world with shades of grey. At some point, for some, only the grey remains. No light is visible, and only one question exists in that world of grey. Do I live with the pain, or is today the day the pain ends? Grey descends into dark. The weather becomes deadly.

Every now and then, through any number or routes, a light begins to glow in one of these people. Nurtured, caressed, husbanded and encouraged, it grows steadily and slowly. To be sure, it waxes and it wanes; there are setbacks wherein the light may be rendered not more than a tiny ember. But in these fortunate ones it never goes out; it continues to grow, bringing light as surely as Spring lights the grey.

To witness this can be as thrilling and monumental as a sunrise in the mountains, or as subtle and delicate as the opening of an orchid. But oh ho, to be there to SEE this, to be a spectator to this, to see light where there was only dark, brilliant color where there was only grey. One night, in a darkened car on a grey, starless night, I drove home bathed in this light emanating from the back seat, so long in coming but now so bright and so strong. The obstacles and the challenges remain, as they always will, but they will seem so much smaller and more manageable in this light. It was hard to drive, so brilliant was that light as it shone through my tears.

So brilliant is that light as it awakens me each morning, still the father of not two, but three children.

It took exactly one week. One whole week before we had our first adverse reaction to the not-so-new new generic eyedrop. Not a one of us was surprised because we’d been here before. The branded version of this particular medicine, version 1.0, did the same exact thing. Thankfully, branded version 2.0 and 3.0 worked like a charm with pretty much no side effects. Yup…one week forward to end up 7 years in the past. Our own little front row seat for the spectacle of the subtle, cynical rationing of “good enough”.

We’ll see more, of that I am sure.

Let me share the back story here before I expand and move on. In eye surgery, specifically cataract surgery, there is a very inconvenient complication called “Cystoid Macular Edema”, swelling of the center of the retina also known as CME. As a natural phenomenon it occurs in 6-9% of cataract surgeries, and unfortunately it occurs even in people without any risk factors who had perfect, uncomplicated surgery. However, if you treat cataract surgery patients with a Non-Steroidal Anti-Inflammatory Drug (NSAID), kind of like Motrin in a drop form, you decrease the likelihood of CME by a factor of 10, down to 0.6-0.9%. Wild, huh? A real no-brainer. A classic example of that chic and trendy outcome-based medicine thing, especially since CME is costly to treat and very scary for the patient.

This 10X decrease originally came with a cost, however. The original versions of these NSAID drops stung and burned, and some 30% of patients had swelling and inflammation in their cornea which caused a temporary DECREASE in vision. So, stinging and burning which reduced the number of people who actually took the medicine, and an inflammatory side effect that decreased vision and forced you to stop the medicine. Tough call. But we live in America. Lo and behold out come versions 2.0 and 3.0 which still have a 10 times decrease in CME, only this time without any stinging or burning, and without any inflammation and decreased vision. BINGO! Another no-brainer, right? Same benefit with pretty much no side effects. Sure. Easy. Right up until a generic of version 1.0 comes out. It took exactly one week to be reminded why 1.0 was bumped by 2.0 and 3.0.

It’s like they used to say in Amish country when my wife was a kid: it’s good enough for who it’s for.

And there’s the rub, of course. Right now it’s for “them others”, but eventually it’ll be good enough for YOU. That’s the whole name of the game with this rationing stuff, you know. All you have to get to is “good enough” and then the only thing that matters is cost. No consideration for compliance, convenience, or quality of life, the only consideration on the board is cost.

Why does this matter? Isn’t the cost of medical care in the United States the single greatest fiscal challenge facing our local, state, and federal governments? Simply put, yes, the cost of caring for an increasingly unhealthy population is, indeed, getting out of hand. Rationing based on “good enough” is based on a very superficial analysis of this problem, however. This is part of the cynical aspect of this type of rationing, because a true effort at cost containment demands a deeper root–cause analysis of the “why” it’s getting so expensive. “Good enough”, by its very nature, brings healthcare to at best a standstill, and as I noted above generally involves rolling back the clock.

Reasonable people have asked why this isn’t actually, truly, good enough. In truth, what we have available to treat diseases today, or even stuff available in 2003, is at least one full order of magnitude better than that which is available in second and third world countries today, or available in first world countries in 1975. Why WOULDN’T this be good enough? Well, how do you think we got where we are today? We did so, of course, by always seeking BETTER. Not only that, but at least in America we did so by always seeking better for EVERYONE. Even “them others”.

Rationing is the great chameleon of health care cost reduction. It’s not just the forced use of generic medications (some are actually exactly equivalent to their branded counterparts) but it takes many other forms as well. The effective denial of access to both primary and specialty care for those individuals “covered” by Medicaid. The myriad, byzantine rules and regulations that are so opaque that individuals throw their hands up in disgust and dismay and fail to seek care for fear of the financial consequences of doing so. Scarcity of resources which is either real (there is an inadequate number of neurologists practicing in the United States), bureaucratic (operating room privileges for specialty surgeons are limited by governmentfFiat in Canada), regulatory (exciting new uses for established medications go undiscovered because of FDA gag rules). or arbitrary ( payment for cataract surgery is denied if the visual acuity is not decreased to a particular level regardless of how it is affecting an individual’s life). Seriously, I could go on and on.

“Good enough” is okay, I suppose, if it is used as the floor beneath which we will not allow healthcare to fall. It’s okay if that floor is constructed by carpenters whose only consideration is the real “boots on the ground” outcome from that healthcare, NOT people whose major concern is cost alone. Finally, it’s really only okay if that floor is actually the floor of an elevator, always and ever moving upward, because even “good enough” has to get better. Every example of “good enough” is actually the result of some yesterday’s healthcare breakthrough. Some yesterday’s effort at achieving “better.” Every version of “good enough” is actually trickle-down “better”.

“It’s good enough for who it’s for” is all well and good as long as you remember that, eventually, who it’s for is you.