January 21, 2018

Folks Interview: Postscript

I have been utterly overwhelmed by the public and private response to the Robert Lerose-conducted interview of me that appeared in Folks magazine here, which has already had over 160 shares from the Folks page alone (and climbing rapidly). [Ed.: As of the morning of 11 February 2018, it has 276 shares! Will update when appropriate.]

I've also had scores of questions that have been asked of me about the 60+ surgical procedures I've had through the years. Without putting my entire medical history online, let me just give a more detailed picture of the effects of Superior Mesenteric Artery Syndrome (SMAS), and the intestinal by-pass surgery that was required in order to save my life. The "blind-loop" or so called "dumping" syndrome that can sometimes result from such a procedure has caused side effects that nobody could have quite predicted. Obviously, I do not regret having had the surgery; I would not be here today to talk about any of this, if I had not had the initial operation at age 14.

But to give a very brief summary of some of what this has led to, I'll provide a checklist:

o Chronic dehydration from the condition led to the chronic formation of kidney stones, which has required countless lithotripsies over the years to break up the stones. (In my very first lithotripsy, back in 1995, a stone fragment got lodged in the ureter and after a week of being in utter agony, despite a morphine drip, a stent was placed within to dilate the ureter---under general anesthesia---and was later removed under local anesthesia. NOTHING on earth compares to the pain of a lodged kidney stone or the medieval removal of a stent. Passing such a stone is like giving birth to the planet Jupiter through a pin hole. Hmmm... I see some of you folks crossing your legs. So, end of story!)

o Chronic internal bleeding led to such severe anemia and iron deficiency, that I was required to undergo countless blood transfusions and IV iron supplementations, before I underwent more than two dozen ligation procedures to stop the bleeding. I am no longer anemic.

o Intestinal strain has led to many hernias requiring surgical repair.

o Bouts of everything from impactions to minor perforations to acute diverticulitis, all outgrowths of the condition, have required treatment.

I have used all of the tools of Western medicine and Eastern medicine (including biofeedback, meditation, herbal and nutritional supplements, acupuncture, "energy" meridians, you name it!) to combat these side effects. No stone has been left unturned. I exercise to the best of my ability and try to maintain a healthy diet (but all restrictions be damned, for pizza will always be a part of the special "Brooklyn" diet I practice!). I also surround myself with a positive support network.

Ultimately, however, as so many doctors have said, it is less about "what" I eat, than the fact that I eat, because this is a motility problem, and everything ingested is going to go through the same screwed up mechanics. Fortunately, there are ways of combating the side effects; unfortunately, the underlying cause of all those side effects, rooted in the initial SMAS condition and the by-pass created to save my life, is something for which there remains no cure.

Some folks, with other medical conditions, including both mental and physical health problems (we are integrated beings of mind and body, after all), have debated in various Facebook threads, who has it worse?---folks with gastro-vascular issues or neurological issues or cancer or countless number of other health problems.

Let me just be a little theoretical at this point. As I stated in one of the Facebook threads, this is not about "I've got it worse than you." Economics teaches us that there can be no interpersonal comparisons of utility or disutility---that is, in this context, there is no single scale upon which to measure one person's problems versus another. Or in more philosophical language: everything is agent-relative. Everything is embedded in our personal contexts. Most folks on this planet have some "cross to bear," to use an old metaphor. That's the nature of life, which is why Ayn Rand once claimed that life is the standard of moral values. But this is not a matter of merely taking those actions that further one's survival; it is about surviving and flourishing as human beings---with all that goes into the very definition of being human.

What matters is that you do not lay down and crucify yourself on any cross you might bear. What matters is how you rise to the occasion to combat it---how well you deal with it, using all the medical and personal resources at your disposal, including the nourishing of social networks of support.

If the interview at Folks does anything to bring attention to the SMAS condition that nearly killed me, that's great. But the message was more universal than that: it is that we all have to develop survival skills that emphasize our personal worth and that nurture a healthy sense of self-esteem. For me, the works of the late novelist and philosopher Ayn Rand and the late psychologist Nathaniel Branden, articulated in a more detailed fashion that which I understood on a "gut" level, if one can pardon the pun.

I no longer have a terminal disease; I'm still kickin', and I'm a warrior. I allow myself the grace of owning my condition, but not allowing it to define who and what I am. I own my emotions, and allow myself to be happy, to be sad, to laugh, to cry, but mostly to revel in the fact that where there is life, there is hope. Celebrate the fact that you are alive, and focus on all those things that help you not merely to survive, but to flourish. Celebrate your individual creativity and productivity. Celebrate your connections to all things that are living on this wonderful planet.

Once again, I want to thank each and every person, probably more than a hundred "folks", who have responded with such support, admiration, and affection. It's not about sympathy. It's all about embracing and nourishing life-affirming values---values that both sustain life and are reflections of a life worth living.

A big Brooklyn hug to all!

January 20, 2018

Folks Interview: "How the Queen of Selfishness Taught Me to Accept My Disability"

Freelance writer Robert Lerose recently interviewed me for Folks, an online magazine "dedicated to telling the stories of remarkable people who refuse to be defined by their health issues." The interview is featured in this week's edition and can be read here---though for some reason, it also appears here. (Disclaimer: I am not responsible for the title of the essay or the accompanying links provided at either site.)

The piece focuses on my lifelong medical adventures with the congenital gastro-vascular disorder, Superior Mesenteric Artery Syndrome (SMAS); an intestinal by-pass (known as a duodenojejunostomy), performed by the gifted surgeon, Dr. Bochetto, saved my life at the age of 14.

I was diagnosed with this extremely rare condition when I was literally near death. It was my family physician, Dr. Karounos, who did a GI Series in his office (they did that back then!), and who suggested after years of misdiagnosis, that I might have SMAS. It was the great Japanese doctor, Hiromi Shinya, who nailed the diagnosis with an upper tract endoscopic procedure known as an esaphagogastroduodenoscopy. As the pioneer of gastrointestinal endoscopic and colonoscopic techniques, Dr. Shinya developed and taught its most fundamental principles to a whole generation of doctors who, to this day, stand on his "Atlas"-like shoulders (including the utterly brilliant, affable, terrific, musical[!], Dr. Mark Cwern, one of Dr. Shinya's proteges, who has supervised so much of my quality healthcare for nearly three decades now).

There have been severe complications caused by this condition and the body's manner of coping with the surgical changes that were necessary to my survival. Today, on the eve of my 58th birthday, with 60+ surgical procedures since that 1974 surgery, I am alive and kickin', thanks to the efforts of so many wonderful physicians and the love and support of family and friends.

Interestingly, in all my years on this planet, I have never heard this condition mentioned anywhere. It was only recently that I saw its potentially devastating effects dramatized in Episode 2 of the first season of "The Good Doctor," starring Freddie Highmore as Dr. Shaun Murphy, a brilliant surgical resident at San Jose St. Bonaventure Hospital, who just so happens to have autism and savant syndrome. In the episode, Murphy is able to visualize in his mind certain troubling symptoms present in one of his young patients. It sends him running to the child’s house, banging on the door in the middle of the night to the consternation of the child’s parents. He refuses to leave unless he can see the child to make sure she is okay. As it turns out, he saves the child’s life because he correctly diagnoses her as having a terminal condition in which the small intestine is twisted around the Superior Mesenteric Artery.

This was the first time in my entire life that I ever saw anyone in any medium—be it film, television, radio, or literature—even mention or suggest the condition known as Superior Mesenteric Artery Syndrome. The disorder is that rare. It is my hope that the mere mention of SMAS on national television might bring more attention to its causes, treatment, and perhaps, someday, to its complete eradication from the human condition.

My deepest appreciation to Robert Lerose for making "folks" aware of this medical problem---and of the possibility that individuals can survive and flourish despite the limitations that they may face from health issues. Again, check out the interview at Folks.

I'd also like to express my gratitude to my friend Don Hauptman, who thought my story was worth telling, and who put Robert Lerose in touch with me. (Only once before this interview, back in 2005, had I discussed the impact of Ayn Rand on my capacity to deal with---and transcend some of the limitations of---a lifelong disability. See here.)

Postscript: Various folks shared my Facebook post of this interview, and there have been so many wonderful comments from so many caring people. Some of the comments have been hilarious. My friend Steve Horwitz, for example, picked up on one of the phrases in my interview and said: "I am amused that Chris Matthew Sciabarra chose this turn of phrase to describe his inner life: 'I am constitutionally incapable of keeping anything in.'" As I remarked in my reply to Steve, I chose that phrase quite consciously. I guess my inner life or my way of dealing with things emotionally is a reflection, in part, of, uh, the nature of my physical disability.

But one comment that I found interesting came from a discussion with regard to an individual who, like Dr. Shaun Murphy in "The Good Doctor" (mentioned above) is on the autism spectrum. Some folks think there is just no comparison between a person suffering a neurological disorder versus a person like myself, who has had 60+ surgeries for a congenital gastro-vascular condition. I responded:

I've learned one thing about the nature of disability, and perhaps it is a lesson that comes from economics: one cannot make interpersonal comparisons of utility or disutility. If you have a disability, the nature of that disability is almost irrelevant, from the perspective of "Mine is worse than yours." If it is your disability, it is something you must come to terms with, and it is as much a 'burden' for a person who has a gastro-vascular disorder as it is for a person who has a neurological one.
I would like to think that my interview has a more universal message: that it is possible to accept oneself as a bundle of possibilities, regardless of the limitations that one faces, and to make the most of them.

I emphasized that point of "interpersonal comparisons of utility" in another comment in the same Facebook thread, where I declared that there was no room for shame in thinking that one's problems seem to be minute in comparison to the problems faced by others:

We all can be Stoic in the face of life's difficulties, but no amount of pretending can cover the real pain each of us feels carrying the burdens of health and other problems that are unique to each of us in our own lives. To use an old metaphor, we all seem to have some cross that we are carrying---the trick is not to allow yourself to be crucified on it. But as long as it is your cross that you're carrying, it is still your cross---and each person knows how heavy the burdens can be. Economists are correct: No room for interpersonal comparisons of utility or disutility; let us just be happy that we can have friends and build a community around the idea that there is something heroic about celebrating that which is good, creative, and productive inside each of us. That's one of the gifts I got from Rand's work.
As I said in another thread, I'm, uh, constitutionally incapable of keeping anything in, including the words that come flowing out of my own mouth! Best to get it off your chest, your gut, your mind, whatever! It's positively unhealthy to hold back, especially with those who can be empathetic and supportive.

The Facebook post has been shared by quite a few people, and the Folks story has over 150 shares already. My friend David Boaz remarked: "I am amused to discover that my good friend Chris Sciabarra first encountered the work of Ayn Rand in his days at John Dewey High School. This is an interesting interview about how Rand and Nathaniel Branden helped him deal with a congenital illness that has plagued him throughout his very productive life." I replied:

I chuckled at your opening remark. :)
Regarding having discovered Rand at John Dewey High School (and we all know how much Rand loved Dewey as a pragmatist philosopher), I do have to say that the school was truly the embodiment of individualism in education---we were able to construct our major around five 6-week cycle semesters, which were specialized courses in virtually every discipline, with vigorous independent study. Back then, it was truly one of the gems of the NYC public school system!

January 14, 2018

RIFI: The New Great Connections

The Reason, Individualism, Freedom Institute (RIFI), on which I serve as one of the members of the Board of Advisors, has launched its dynamic new website. As the Founder and President of the Great Connections Seminars, Marsha Familaro Enright tells us:

When we think of free societies, we often think of industry, free markets, and minimal government. But real freedom starts within, with self-understanding, self-responsibility, self-direction, determination, and a nimble ability to adapt to life’s challenges. Autonomous people do not easily tolerate being ruled.
Yet, the modern classroom, from grade school to graduate school, relies heavily on a top-down structure of a single arbiter of knowledge, often in the position of lecturer and discussion leader as well as knowledge and moral authority. This structure embodies collectivist ideals of social control and strongly helps to foist their ideas and values onto students, such as: social justice, moral relativism, and limiting free speech. By controlling the ideas and the way they are taught to young people, the collectivists have come to control the ideas in the culture.
This educational structure needs to be examined, questioned---and overthrown. . . . where do individuals learn how to live autonomously and use that information in their lives? The free future requires an educational---a psychological---technology that suits the needs and reflects the aims of the free human being.
The Reason, Individualism, Freedom Institute (RIFI) has developed and implemented such a psychological technology in our Great Connections programs.

Take a tour of this new exciting "Great Connections" website, starting here.

September 22, 2005

Teaching from Your Textbooks

There's a raging debate going on at Liberty and Power Group Blog and the Volokh Conspiracy (discussion here). Aeon Skoble posted a very thoughtful discussion entitled, "A Textbook of Cluelessness," in which he criticizes Law Professor Ian Ayres, who argues that it is "borderline unethical for profs to assign textbooks they have produced."

Here is how I replied to this assertion today on L&P:

My, my, I've just looked at all these comments and the ones at Volokh too! Some are calling for Aeon's prosecution now for "profiting" from the pittance he makes in royalties if he assigns his books to his students.
Frankly, I'm at a loss.
If you teach a course on Marx's concept of alienation, and you happen to have written the book on Marx's concept of alienation, what's wrong with assigning the book to the class? That's what Professor Bertell Ollman did when I took his course on Marxism. And I profited enormously.
And when I teach cyberseminars on my own work, I have to assign my books. I'm teaching them! In a sense, what could be more fulfilling than reading and studying a text that your own professor has written? If you have questions about the book, what better source to ask?
I realize this is not the issue at hand: People are just ticked off that somebody somewhere might be making 4 cents in royalties. Clearly those who are upset over this have no clue about the standard academic contracts that require an author to sell 1000 or 5000 books before even making a dime on anything, on a sliding scale that nets you a couple of hundred dollars a year if you are lucky! (There are exceptions to this, of course, but they are exceptions). If some think we're in this for the money, well... we picked the wrong profession, folks!
As an aside, I've done some work on pre-Bolshevik education in Russia, prior to the Communist takeover. One of the things that really irritated Narkompros (the "Commissariat of Enlightenment") [once the Bolsheviks took over] was the fact that Old Guard professors were... HORRORS!... lecturing and using their own books as texts in their classes. Such books projected the individual professor's interpretation of history or philosophy, rather than the politically correct and approved version. As the Old Guard was exiled or shot, the requisite PC texts slowly replaced everything else. If you happen to have been an approved Marxist, you could teach your own PC text at that point. Otherwise, fuhgedaboudit!

Comments welcome.

August 18, 2005

My Interview at Sunni's Salon

The tenth anniversary celebrations continue this afternoon with the publication of my interview at Sunni's Salon. I have known Sunni Maravillosa for a long time, and she's a total sweetheart. Her interview of me is comprehensive, wide-ranging, sometimes intimate, and always entertaining.

The 8-page interview starts here.

Comments welcome.

August 04, 2005

The Art of Cyber-Pedagogy

Yesterday, I read a really interesting article by Michael J. Bugeja in The Chronicle of Higher Education, entitled "Master (or Mistress) of Your Domain" (shades of Jerry), with the descriptive subtitle: "Creating a Web site for your latest book can showcase the work and aid your case for tenure and promotion."

I'll put aside the issue of aiding one's case for tenure and promotion. I'd like to suggest that it might actually aid one's cause (which might not actually aid one's tenure or promotion). And I think more classical liberal and libertarian scholars should consider doing it.

First, let's take a look at Bugeja's points. He writes:

For better or worse, the Internet is playing a larger role in editorial decisions about books and in promotion and tenure evaluations. It is commonplace for external reviewers to Google Web sites or troll databases before rendering their decisions on behalf of publishing houses and institutions.
Search committees also are using the Web to evaluate the writing or scholarship of job applicants before inviting them to on-campus interviews. ...

I advise authors to create a Web site with the title of their texts as the domain name and to assemble other sites with domain names identifying their scholarship. ... Authors are responsible for getting their books reviewed, purchased by libraries, and adopted by professors for use in research or in the classroom. In the past, that required an author to fill out a questionnaire for the publisher, identifying editors, book reviewers, and colleagues who might have interest in the work. The Internet has changed that.

Bugeja explains how he marshalled his own resources to promote his own work. Who is a better salesperson than the person who authors the work and knows it, inside-out? He "e-mailed reviewers and technology columnists, directing them to the Web site" he had established for his book, "asking if they would like a copy. Several said yes, generating reviews and citations that I added to my site under 'latest news.' Without the site, the book would have died along with the trees that gave it life at the printing press. Instead, it went on to win a research award with reviews in top publications. That's the benefit of a book site."

Bugeja tells us that his book site boosted classroom sales too. He reminds us that those who surf the web expect some things for free. The Internet may not be a "medium for professors concerned about copyright issues or intellectual property," but Bugeja encourages authors "to share [their] pedagogies or methodologies," giving readers, potential teachers and students alike, "all manner of free information, including lectures for each chapter; sample syllabi for large, middle-range, senior, master's, and doctoral classes; end-of-chapter materials; forms for paper assignments, journal exercises, and presentations; sample midterms and final exams; a bibliography; and an index." He even provides

a 103-page instructor's manual in both Word and PDF formats. Online manuals save the publisher printing costs and allow potential users to manipulate syllabi, lectures, and other downloads. The most popular free feature on my site is a twice-monthly teaching module meant to stimulate classroom discussion. To date, I've added more than two dozen such modules to the site on content too topical to include in a new edition but nonetheless related to the concept of the work.

I especially like Bugeja's suggestion that authors archive "reviews, recent articles, and information about" themselves. I've been doing such things for over ten years now on my own site, and I've had URL forwarding for the titles of all of my books. Just try typing or, more simply,, and see where that takes you. I'll never forget how my pal and colleague, Lester Hunt, once characterized my site. Linking to it from his site, he wrote: "Chris is a true liberal. In the interest of provoking dialogue, he puts some very adverse criticisms of his controversial work on his site, together with his replies." I think that's actually very important. And I think more liberal/libertarian scholars should be doing it precisely because it documents the history of a discussion of a particular work, while also providing the basis for future dialogue.

The one thing authors should not supply, of course, is: the book. But links to services where you can order the book online are always helpful. As Bugeja puts it: "That's the point of the site, and all links lead to that outcome."

I've not yet put a syllabus for my books online, but I do have one available for use in a cyberseminar that I give now and then on my "Dialectics and Liberty" trilogy. But Bugeja has given me a good idea about developing more study guides and syllabi for my various publications so as to facilitate their use in the classroom.

It would be a good idea, I think, if those in the liberal/libertarian academy do more to develop these kinds of web resources in a more formal manner. It is one way to develop a "parallel institution" of learning, while at the same time providing a blueprint for the use of such materials in established institutions of learning. Additionally, it gives each of us, as authors of the works, a chance to frame the discussion in a way that is most likely to generate further interest in our own contributions and the contributions of our colleagues in the libertarian academy. I've seen some development of this model on the sites of some of my colleagues; in the light of Bugeja's essay, I think this is something that can benefit each of us individually and the cause of liberty more generally.

Comments welcome. Cross-posted to L&P, where comments are posted here.