« US Foreign Intervention and the Problem of "S&!#Hole" Diplomacy | Main | Folks Interview: Postscript »

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!