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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!