health – ReMarkable

I find the human brain to be endlessly fascinating. At least until the recent advent of AI’s hallucinations, it was our only known source of flights of fancy, musings, dreaming up gods and religions, and generally trying to make sense of this spinning world.

I usually take the combo of my brain and my body as being “me.” That unique combo has, with one notable exception in the early 2000’s, always more or less marched in lockstep and functioned as a singular unit. But what is the “self,” if and when the mind and body go their separate ways?

The bulk of Sacks’ work here is an exploration of cases where the mind/body fusion is broken or otherwise confused. A few sample cases: A man who doesn’t recognize his own left leg (and is disgusted by it’s presence), a woman who lost all proprioception (the ability to tell where your body parts are in time/space without needing to get visual confirmation to make that determination). A man whose brain could not process images from the left side of his field of view. A man whose very being ceased to exist at a certain point in his life, leaving him to live in a state of suspended animation from his midlife onward. A man who lost the ability to recognize faces; not just the ability to recall who was who, but literally not being able to tell the difference between a fire hydrant and a human child.

All fascinating stuff.

Coming back to my personal episode, in 2001, I was walking up our basement stairs in our little shack of a house in North Seattle when I realized that my right calf muscle wasn’t working as it should. I couldn’t do a heel lift on my right leg. There was some disconnections between my right calf muscle and brain… the message just didn’t get through. I went through a few rounds of neurological testing, got checked for Parkinson’s (not as much fun as it sounds) and, after a few weeks of doctors shrugging and giving me the “let’s wait and see” advice, the muscle slowly started to respond to signals from my brain. It was a small enough issue that I could go hours at a time without even remember the problem existed, but it was a disconcerting period in my life. What if the symptoms extended up and/or down my leg? What if it moved over to my left leg?

Aside from that weird little blip, I think the closest lack of proprioception experience I can come up happened when I went into the dentist just a few weeks ago for my routine cleaning. It was time to have a set of x-rays taken and as the dental hygienist was wedging various wheelbarrow-sized equipment into my mouth to take the pictures, I lost all sense of control and placement of my tongue. Was my tongue in the way? Was it out of the way? Was it doing something weird/slightly obscene? I don’t know, because my tongue proprioceptors seemed to check out for a few minutes. While not an exact match, that’s pretty damn close to what I felt with my calf. A part of my body just seemed to be hanging around but lacking a connection to my brain. Super weird. And the thought of having that experience extended to my entire body is simply terrifying.

If anyone has any interest in such oddities of the human experience, Sacks is a fluid, entertaining writer who is able to translate his professional neurologist expertise and package it up in a way to make it accessible to the laity.

Fact #1: Lacking some significant medical breakthroughs, if you’re reading this sometime in 2024, you’re probably going to die within a single-digit number of decades.

Fact #2: The entire medical profession has been incredibly well-trained and well-equipped to keep us from dying.

Combining Fact #1 with Fact #2 leads to a bit of conflict and unease in our society.

But first, let’s rewind the clock a generation or two and look at how we got here.

Prior to the 1930s, families provided the care and support for their elderly family members until their death. If you didn’t have a family to support you, then you had a couple of different options.

Option #1 is the best choice: have bags and bags of money lying around to hire help in old age. The folks fitting that profile were predictably well taken care of. Option #2 was considerably more bleak. This involved being placed in an asylum/poorhouse with a whole bunch of other people with no family to care for them. By all accounts, those were some dismal and dehumanizing places to live.

In a nifty confluence of events, at roughly the same time that Social Security rolled out and started providing financial support to those seniors who had no family nor funds to support them in their old age, the medical advances developed during World War II started to lap up on our shores. Old age quickly moved from being merely another stage of life with a predictably precipitous end and came to be viewed more as a medical problem that could be fixed with our newfound technologies like antibiotics and surgical techniques. The solution for old age was pretty obvious: put old people in hospitals.

That approach worked for a couple of years, but then hospitals started to realize that their beds were filling up with people who weren’t dying nor getting well. This led to a couple different efforts to addressed the problem. Effort #1 was that in the 1950s and into the 1960s, the federal government dumped billions of dollars into the construction of new hospitals across the nation. But as it became clear that hospitals couldn’t keep up with demand for their beds, in the late ’50s and into the early ’60s, a new form of care came into being: the nursing home.

As the name implies, nursing homes were designed to provide care to the sick and elderly. The structure was built around the idea of the patient being, well, a patient. The operating and business practices of nursing homes were designed to promote the efficiency of the facility and not necessarily caring so much about the needs and desires of the patients.

Enter a new idea: the assisted living facility. Assisted living, at its best, tries to hand the autonomy of life decisions back to the resident in terms of what time they shower, what time they wake up, what time they go to bed, what they eat, when they eat, who they have over as visitors and/or lovers, etc. All this just happens to occur where skilled nursing is available just down the hall.

Preserving that sense of self and independence is, in my mind, the guiding star of what medicine should be aiming to provide and what I should be asking of my health care providers now that I am, ahem… old.

With medical science now able to prolong life far beyond what had been dreamt of in years past, the question now becomes one of when scientific and technological prowess need to recognize human mortality. As Gawande points out, he was trained to fix problems. If you have cancer, do some surgery. Do some chemo. Do some radiation. And if those remedies cause some cascading series of issues and traumas, those are to be dealt with those as they come. The medical profession has gotten so good at addressing individual medical problems that human existence can get whittled down to the point where people are kept alive without actually living.

Having arrived at the ripe age of nearly 51 years old now, my takeaway from this book is that we all need to be thinking about what it is we want from our medical care. What is it that we are willing to give up to get to a certain outcome? If what gives life meaning is stripped away and a person is left as a breathing stump of a human in a bed, have we really made any progress?

That’s a trick question.

Gawande’s point is that the question above doesn’t have a single answer. The answer varies from one person to another to another. And the range of answers varies significantly. For some who are facing rounds of chemo and surgery, they just want to make it out of that process with the ability to watch football on TV and eat ice cream. That’s enough for them. For others, that outcome sounds horrific and not worth the trade.

Those conversations, as awkward as they might be, are the path forward that allows patients, families, caregivers, and doctors the ability to determine when to press ahead with treatments and when to say “What do you want out of your remaining days, however many they might be?”.