Morbid? No. And it won’t wait.

I refer you now to an old interest of mine – that is now getting at me all afresh, because it wasn’t wrong, it wasn’t frivolous, and it wasn’t unimportant. Isn’t.

My life (and not only my life) may now prove it wasn’t and isn’t.

And that fills me with fear and anger and a hectic feeling of panic, the feeling you get when you realize that you should have been harping on something more, a lot more, for years. These feelings are muted, mind you, because of the necessity of staying calm while we wait and see and do what we need to do. But they are not quiet.

“No, no, listen, don’t listen to me, listen.” – The Last Unicorn

I bounced off the idea in 2003 in my diary, with the entry Think entry: the dunebuggy question. I wrote on the occasion of reading about monkeys that could control an arm purely by thought impulses. I said that this opened up the possibility of having an active life if surgeons transferred a person’s brain (which is really transferring a person) into a mechanical life-support arrangement. The point of such a transfer, I said, was that you would reduce the number of vital organs the person depended on from many to just a single one – while the supporting machines lend themselves to direct maintenance and repair a lot better than our natural bodies.

There I wrote only about the possibility of special longevity. (What would a 400-year-old student be like? The question is subject only to the question of how well the brain itself can be maintained. The brain may not go longer than 120 on its own anyway, though. It frequently goes less than that now.)

But in comment discussions after that I made clear that I didn’t think it was only about special longevity at all, and that the other purposes were more urgent. Are more urgent.

(I must not panic myself.)

I cannot find those comment discussions, not in a hurry. (I’m on Free Open Diary again. I miss the conveniences.) But I do see that I told Arbi that it was also about saving people who were aged 10 or 20 or 30.

Listen:

There is something nasty that happens with subway trains.

Now and then, someone will fall or be pushed off the station platform in front of an oncoming train.

Yes, there is that horrid photo somewhere on the internet that is captioned “Mind The Gap.” But there is also another outcome that has happened often enough that one can almost say it happens with regularity.

The person’s lower body will get… rolled… between the wall and the train. Like a twisted bedsheet, I’ve heard it described. When the train has stopped, the person is alive and often conscious. The pressure is such that the train is acting as a tourniquet. But the damage is such that – when the train is moved – the person will “bleed out” BEYOND instantly.

What do the paramedics do?

Generally, if the person is conscious… they get the person a cell phone.

So that the person can call his or her family to say goodbye.

Then…

Well… they move the train.

They have to move the train. It’s a subway station. You can’t just have that train sit there forever. And of course the person would die in short order of those injuries regardless.

On the occasions when I have heard of a story like that, I have been stomping around the house snarling at the air for days.

Save the head. Save the head! You can get at the head. It’s right there.

There should be an emergency creche that a surgeon could move the person’s head into. Then take him or her to the hospital, to a better rig. And then… well, we have wheelchairs – we have Stephen Hawking – we have prosthetics that can go right up to robot arms controlled by the brain.

It is not written anywhere that a person must die – or must prefer to die – before living in a wheelchair or with the aid of prosthetics. Wouldn’t you want a person in the middle of his or her life, or at the beginning, to have options, to have a chance? The chance we would demand that he or she get in any other circumstance?

Is there some convention I haven’t heard of where a human being’s personhood is in the torso? No!

Save the head!

And you can generalize this to people in other sorts of accidents, people with any other grievous injury below the neck.

Or disease.

Damn it.

***

I want to finish this. I don’t want to get upset. I have to be able to see the @#$%*&* screen. BRB.

***

Okay, listen. We do not presently have this technology.

Although we may in fact have all the requisite technological bits to do it, here living in the future. For example, for anything beyond short term maintenance, two likely possibilities are that we would need to culture the person’s liver cells, say on a lattice, and maintain them, and to do the same thing with the person’s bone marrow, to produce the red blood cells and the immune cells. It may be that we can do these things now. And the other necessary things. In every respect, every other respect, medical technology has been moving along.

But we don’t have this technology as a whole and in real – and we may not be developing it or be going to get it, regardless of what the tech in general is doing.

Or: regardless of whether we have the technology in total, it’s not done now.

And maybe it won’t be done.

Why?

Well.

Here I must take us to the work of a fellow whom I greatly admire and am tremendously frustrated by. Because he did a great deal to investigate this possibility – and then he put an extra set of wheel locks on it.

I’ve actually never read Chet Fleming’s book If We Can Keep a Severed Head Alive…Discorporation and U.S. Patent 4,666,425, because it’s always been more expensive than I have the stretch for, even in used copies. But I’ve read his article in the Whole Earth Review that is a condensation of bits of it. Here is the link.

In brief, Chet Fleming is an engineer and lawyer who got interested in this and intensely researched the possibility.

He was concerned that work in this area could go forward (he thought it definitely was going to go forward) without our thinking through the moral, social, and bioethical questions first. And he wanted to make a contribution to civilization.

So, the clever fellow roughed out a design for the circulatory arrangements that such an effort would have to comprise, and he patented that design.

(I have read that the patent was at first denied but has since been upheld.)

The terms of the patent forbid anyone from working on such an arrangement without first getting the work approved by three different bioethics/medical ethics boards at three different universities.

He thought that this would be a big deal. In fact, the media and so on ignored it. I may put in something about that.

I have my problems with what he did. But, first, let Fleming establish that there has in fact been work in this area in the past…

For example, in a set of experiments done by a team of neurosurgeons in Wisconsin during the 1960s, somedog heads were severed from their bodies and placed on blood processing machinery. They continued to generate brain waves after the spinal cord was severed, but only for about four hours. During that time, the severed heads were under heavy sedation, and they never regained consciousness after the operation started. In addition, the brain waves steadily tapered off during those four hours, which effectively means that those operations didn’t prolong life; they only prolonged the process of dying. Then, in 1971, a team of neurosurgeons in Cleveland transplanted several monkey heads onto the bodies of other monkeys and then revived the transplanted heads to a state of full consciousness for up to 36 hours. People might argue over semantics and technicalities, but those severed heads were conscious and “alive” according to any reasonable definition.

You will notice that questions about the ethics of research on laboratory monkeys have just come clangingly alive, well, if you have a soul they have. Let us agree that there can be things that you would do to save a person’s life that you should probably not do just so you can see whether a monkey makes faces at you.

But the next paragraph… that is the paragraph that has me glaring at the ceiling. Actually in a couple of different ways. Let’s see if you have the same reactions:

Both of those surgical teams stopped working on intact heads (with eyes, mouths, etc.) less than a year after they started, and they turned to research on isolated brains with no sensory organs and no ability to communicate. That was an interesting decision, apparently based on several factors. On a purely technical level, it’s cleaner and more precise to study what’s going on in an isolated brain if the blood doesn’t also circulate through other types of tissue. However, the scientific factors aren’t the only reasons those teams decided to stop working on intact heads. One of the neurosurgeons told me he didn’t feel ready to address the ethical issues of keeping severed animal heads alive for sustained periods, What would happen if he proved he could keep them alive for weeks or perhaps even months? What would he do if some of his patients, who were dying with no other hope, wanted the operation? He simply didn’t want to confront those issues. Another neurosurgeon said it would be disturbing – the word he used was “creepy” – to have a severed animal head in the lab, able to look around and see what’s going on, probably in a state of bewildered discomfort if not outright pain. However, he wasn’t bothered by having isolated brains in his lab, since he thought the brains were in a deepsleep state caused by sensory deprivation, rather than feeling pain.

Let me clip out what that first neurosurgeon said:

One of the neurosurgeons told me he didn’t feel ready to address the ethical issues of keeping severed animal heads alive for sustained periods, . . . What would he do if some of his patients, who were dying with no other hope, wanted the operation? He simply didn’t want to confront those issues.

YOU SON OF A BITCH.

What that fellow felt may be the shadow reason why other doctors and medical researchers – with the role of finding options and hope for their dying, dying patients – may not go there: because they just don’t feel comfortable going there.

And going there in front of everybody? One of the grown-ups, the experts, should do it first, somewhere else…

Except they’re the grown-ups, of course. They’re the experts.

And this guy had actually been working on it, and stopped.

I must not get too ranty. I don’t want to.

What would he do if some of his patients, who were dying with no other hope, wanted the operation? He simply didn’t want to confront those issues.

Jesus.

***

Anyway, the other thing that makes me glare about that paragraph will be less obvious. However, the researchers may be less blameworthy in that respect, given the period; I want to think it’s really stunted imaginations, but really it was the state of theory. It’s this part:

However, he wasn’t bothered by having isolated brains in his lab, since he thought the brains were in a deepsleep state caused by sensory deprivation, rather than feeling pain.

The thing is, scientists used to think that an animal, or a person, who was in a state of total sensory deprivation would automatically be in a deepsleep state, because there’d be nothing to focus on or react to, so, of course. But, during this same period, John C. Lilly and others were doing experiments with putting people in isolation tanks to induce as total sensory deprivation as possible – and guess what? There’s no automatic unconsciousness when you’re deprived of sensory input.

And, of course, the isolation tanks are definitely painless.

No, you don’t avoid the disturbing implications of keeping brains alive by making sure they don’t have animal faces to grimace! Let us consider it a distinctly bad thing if you keep animal brains, by themselves, alive and active but nicely disembodied so that you can walk through the lab whistling.

Better to do heads with faces and to include pain relief in the regimen.

Better even yet to do it with the one animal that can volunteer.

And, really, now you know enough that you could probably build the rig to do its job therapeutically without having to use a head just for experiment’s sake.

Which brings us back to the important part. Isn’t it.

***

Here is what makes me mad about Chet Fleming. Not as mad as at that damned surgeon, but mad in a different way. A kinship way.

He made a mistake I’ve made a zillion times. When he got into something, and found it was important and interesting, he thought that people would be interested, had to be on the merits. He was sure of it.

And here is the crucial part of his mistake. He writes of the questions raised by the ability to keep a head alive and conscious on its own:

I don’t know the answers, but those questions won’t go away. And they’re not coming just at me. They’re coming at everybody, like a high-speed train roaring through the night. Whether anyone wants it or not, this technology will soon be here.

He was wrong.

And what he did was therefore mistaken. What he thought he was doing, what he intended to do, was to install brakes or a speed regulator on a hurtling locomotive.

What he really did…

… was to take a neglected, dust-gathering locomotive, in an obscure nook of the museum/scrap area of the yards, and hang a DO NOT TOUCH sign on it!

How many researchers or medical students or doctors, casually interested or with an aborning more serious impulse, have been dissuaded by this requirement that they would in fact have to first have the existing medical world sign off in a big way on what they wanted to do?

Most things that are tried are at first engaged with diffidently. People turned away in this fashion will have left no footprints, no record.

And, as far as I know, here we still sit.

As people fall in front of subway trains and get rolled against the side.

As people get impaled, suffer crushing injuries, are shot in the torso, stabbed, ruined in such a way that the body systems as awhole can’t be stopped from spiraling down into cessation.

As people lie in hospital beds while some part of themselves that they may never even have heard of before fails.

As people, young people, are dying of cancer spreading somewhere in their body south of the neck.

Is there an obligation to die if these things happen to you somewhere south of the neck?

Is there such an agreement?

Listen: Would I love Gwen if she was Stephen Hawking?

Should I love Gwen if she was Stephen Hawking?

What do you think?

***

(Where is the line between Stephen Hawking and this?)

***

I should note – well, you know that the uninterested think themselves brilliant, you or me or anyone. Of course you know that. I should note that I share Fleming’s frustration with the lack of social interest in his topic and what he did. Generally it was treated as just a publicity stunt. A lot of the reviews of Fleming’s book I found say it was a publicity stunt.

(People who think something is just a publicity stunt can be rendered amazingly dim about what was done. I remember a Texas TV station’s coverage of a group who, in a sting, caught the police totally red-handed breaking the law. Just a publicity stunt. Anyway.)

Fleming writes,

In May 1987, about two weeks before my patent was issued and published, I contacted several reporters in confidence to let them know that U.S. patent 4,666,425 would issue on May 19th. I contacted them because I wanted to make sure they realized (1) I had never done the operation and was not promoting the idea, and (2) 1 wanted to give the public a chance to consider and debate this line of technology before it actually happened. I was worried that if reporters heard I had a patent on a machine to keep a severed head alive but didn’t understand the facts behind it, things could get off to a very bad start.

So, to help make sure the first few stories were balanced and accurate, I called half a dozen reporters at publications with reputations for balanced reporting rather than sensationalism, such as Science and Nature, two highly respected technical journals. I also contacted an “Ethics” reporter for Time who had done a story about patenting animals, a Newsweek reporter with a biochemistry background, a medicine and biotechnology reporter for The Wall Street journal, and a science/ health reporter for The Washington Pos. And, since I couldn’t get through on the telephone to the science editor at The New York Times, I sent him a letter and left several messages asking him to call me or to have one of his reporters call me.

Every single reporter I reached on the phone was surprised And very interested. Several reacted with outright shock and amazement when I told them I was getting a patent on a machine to keep a severed head alive. They said things like”That’s impossible,”I don’t believe this,”

However, after I sent them enough information to explain my position and convince them that I was trying to guide this project toward safe and socially responsible use, every single one of them lost interest except for Larry Thompson at The Wasbington Post. As of this writing, more than five months later, not a single one of the other reporters or their publications has done a story on discorporation or patent 4,666,425.

To me, that total lack of interest on the part of the other reporters seemed every bit as bizarre as my information must have seemed to them. For several weeks, I simply could not understand it.

But then one of them explained her position to me: “We’re not interested in doing anything on this yet, but if any controversy arises, we’d be interested in reporting on that.”

Maybe my sense of proportion is mutant. Or maybe it’s that no one wants to look weird. Or maybe people look to each other to find out what’s significant. Or maybe… I’m sorry. Was there supposed to be something “nothing to see here” about this question?

There is nothing unimportant here.

***

I should say that – and I’ve already said most of why – I think Chet Fleming’s personal biases, which he scrupulously lists labeled as such, are reversed in priority. He says he’s fairly sanguine about just keeping brains alive for research benefits, but he’s worried about the issues involved in keeping animal heads alive (be as much worried about the brains, if not more so!) and in using the technique to save the terminally ill. Yes. I think those are reversed.

But he does not say, or think, that the use of the technique to save people is out of the question. And he knows there’s a place for it. In a letter response to a review of his book in BLJ (here), he writes,

In his review of my book (3 September, p 629) Professor T J Hamblin stated, “In [Fleming’s] view a device to perfuse a human head might lead to horrific consequences, and so he has developed a fiendish plan to prevent one being developed.” That is incorrect. As stated in the book, the technology for perfusing a severed head has important potential advantages, for research and for prolonging life in a conscious and communicative state with, probably, less pain than many dying people suffer today. The difficult question is whether the advantages outweigh the disadvantages and dangers. . . .

Your reviewer asks: Would anyone want the operation? I have been contacted by half a dozen people who want to know how soon the operation will be available and how much it will cost. Some are dying; others are paralysed. Most said that if the mind remains clear and the head can still think, remember, see, read, hear, and talk and if the operation leads to numbness rather than pain below the neck then they would want it.

***

Yes, this topic has been close in my thoughts.

I’ll tell you: suppose the picture, from the PET and other things, comes out really bad for Gwen.

I have been trying to imagine having a terrifying conversation with her doctors, or with other doctors at the hospitals around here. One possible outcome is that they might have another nice doctor come down and talk with me about it – a fellow who was doing rounds up in the psych ward.

I don’t know; I can’t know; I have not gone into it like Chet Fleming, nor am I a doctor, nor am I up on all the relevant things that have been developed since 1988. (Nor would I be able to pay for a damn thing. I suppose I’d be begging them to do it out of their research budget – because it would sure as hell count.)

But I have been trying to imagine their reactions… could be any number of things…

… and the possibility that drives me most crazy is that they might feel that I was ignorantly questioning their competence and full proficiency in their professions, in what they did with the state of the art to deal with cancer and to treat the gravely ill. Speaking ignorantly and irrelevantly and insultingly “out of turn.”

I think that, if a patient is going to die and doctors cannot stop it, their competence or proficiency in their profession is not relevant.

That is what I think. That is what I am thinking…

And I am unfamiliar with any reason why this is not technically possible.

***

And, in the meantime, we still don’t know; Gwen’s fatigue is frightening me, andher too, but she has not yet had her PET scan, that’s on Tuesday; the cancer team has not yet talked with us about any preliminary conclusions.

So we’re not there yet.

And I trust that Gwen understands me well enough, and we have talked enough, that she will not take the topic of this entry as a morale body-blow. :o)

We’re a pair, we are.

Yes we are.