On the Nobility of Incontinence
By Rick Rader, MD, FAAIDD, FAADM
When I was growing up, guys’ names had a certain ring to them. “Duke” still conjures up someone you want behind you in a schoolyard brawl, while “Spike” makes a decent back-up if Duke wimps out. You’d likely agree that “Rock” would be the one to call if you had to get your bike back from the kid who stole it; the delinquent thief’s name would probably be something like “Biff” or “Mack.”
You definitely wouldn’t feel confident with a “Stanley,” “Bernie” or “Alfred” backing you up if you had to walk through a schoolyard claimed by a gang of guys wearing black leather jackets, boasting their membership in the “Eastside Cut Throats” social club. Yeah, guys’ names have a ring about them. But sometimes, names don’t pan out. Sometimes, when you’re looking for constructive help, it doesn’t come from the place you’d expect. “Alfred” is certainly not a power name like Duke, Spike or Rock.
Yet, a guy named Alfred became synonymous with power. He, in fact, unleashed such power that the world had never known. In 1867, Alfred, a Swiss chemist, figured out that when nitroglycerin was mixed with an absorbent, inert substance, it became stable and safer to handle. Realizing he was onto something marketable, he considered naming the powerful substance “Nobel’s Safety Powder.” Instead, he came up with “dynamite,” referring to the Greek word for power. And power was indeed what he amassed—power and fortune.
Thirty years later, Alfred Nobel signed his last will and testament, giving a large share of his fortune to fund a series of prizes bearing his name, stating: “The whole of my remaining realizable estate shall be dealt with in the following way; the capital shall be invested…the interest on which shall be annually distributed in the form of prizes to those who, during the preceding year, shall have conferred the greatest benefit on mankind…one part to the person who shall have made the most important discovery within the domain of physiology or medicine.”
Thus, the Nobel Prize in Medicine was first conferred in 1901. There is no doubt that this prize has served as a testimony to the greatest medical advances and researchers the world has seen. All game changes, without doubt: Koch’s (1905) identification of the tubercle bacillus and related work on tuberculosis; Landsteiner (1930) on blood groups, and blood typing; Fleming, Chain, and Florey (1945) for penicillin; Crick, Watson, and Wilkins (1962) on the discovery of DNA; Banting and Macleod (1923) for the discovery of insulin; Murray and Thomas (1990) on organ and cell transplantation. It may be that anyone reading this has benefited, directly or indirectly, from the work related to one of the 113 Nobel Prizes awarded in medicine.
While the Nobel Prize in Medicine is certainly significant, why are we referring to it in HELEN: The Journal of Human Exceptionality, a publication dedicated to a better understanding of the disability community—and in an article about incontinence? Answer: to make an important point. Help doesn’t always come from the place you’d expect. A careful survey of the prizes reveals that not a single one has been given for any significant work in the treatment of incontinence.
While each of us hopes a cure is still on some researcher’s bucket list, to date, there has not been any Prize-worthy game-changing work on this condition. If we were to look to the big names right now—the Dukes, the Rocks, the Macks, and the Nobels—we’d find little concrete help.
But just suppose that there was a great advance. It’s not so far-fetched.
The consequence of incontinence extends far beyond embarrassment. Around 13 million people in the U.S. have been diagnosed with incontinence, according to the Agency for Healthcare Research and Quality. While older age increases the risk of this condition, there is a wide range of factors that can cause this problem in younger persons. People with disabilities often experience incontinence as a co-occurring condition. It provides a major obstacle for full participation, inclusion and engagement for people in the disability community.
Recently, Richard Craver, writing in the Winston-Salem Journal, reported that researchers at The Institute of Regenerative Medicine, Wake Forest University, produced the first functional anal sphincter in a laboratory setting. When we’re talking about a sphincter, we need to recognize we are at its mercy. Current treatments available for restoring damaged sphincters all have high complication rates and limited success. These sub-optimal treatments have included skeletal muscle grafts, injectable silicone material, or implantation for mechanical devices. No candidates here for a trip to Stockholm and a share of a $1.5 million Nobel Prize.
But now, according to Professor Khalil Bitar, one of the lead researchers involved in the work mentioned above, “In essence, we have built a replacement sphincter that we hope can one day benefit human patients. This is the first bioengineered sphincter made with both muscle and nerve cells, making it pre-wired for placement in the body.”
If, in fact, a workable and sustainable bioengineered replacement sphincter could be perfected, how would it stack up for a Nobel Prize? It is hard to tell. Would it become a named advancement? Would capturing the Nobel Prize for this achievement make a difference in people’s lives?
The fact is that we’re not where we’d like to be with the science. We’re not sure how soon we’re going to get there. So, in the meantime, this article, which originally appeared in the book Managing Life with Incontinence (The Simon Foundation for Continence) engages the reader in the reality, the mythology and the experience of living, fearing, cursing, adjusting to, and accepting the intrusion of a defiant sphincter and the prospect of adapting successfully to the “new new” that it imposes.
Incontinence and its impact are fairly complex, and I like simple. As a medical student, “simple” was my ticket to appreciating the synergy of the body’s complex systems. When we hit Chapter 26 of Guyton’s physiology text (imagine no mention of “elimination” until chapter 26), I was confronted with some heavy-duty illustrations and intense physiological principles, I needed “simple.” I quickly realized that in the physiology of elimination, the sphincter was the key. It was the body’s equivalent to the ice hockey team’s all-important goalie, with the puck representing both urine and feces. Take your eye off the puck and you’re incontinent.
The “simple” (but eloquent) explanation for the role that the sphincter plays came to me by way of an unforgettable British physiology professor who stated:
“They say man has succeeded where the animal fails because of the clever use of his hands, yet when compared to the hands, the sphincter ani (anal sphincter) is far superior. If you place into your cupped hands a mixture of fluid solid, and gas and then through an opening at the bottom, you try to let only the gas escape, you will fail. But the anal sphincter can do it. The sphincter can apparently differentiate between solid, liquid and gas. It apparently can tell whether its owner is alone or with someone, whether standing or sitting down, whether its owner has his pants on or off. No other muscle of the body is such a protector of the dignity of man, yet so ready to come to his relief.”
As quoted from Dr. Walter C. Bornemeier, protector of the dignity of man for sure, the anal sphincter, and its urinary counterpart, also have the capacity to decimate and forever change the landscape. Too bad that adverse impact hasn’t gotten more attention.
To answer the question as to whether a bio-engineered sphincter could walk away (maybe that’s asking too much of any sphincter, natural or engineered) with the Nobel Prize, we have to look at popular culture and incontinence.
Incontinence remains one of the last stigmatized targets of a dysfunctional body system. To be realistic, the working, functioning sphincter doesn’t really have an identity.” We don’t characterize it, we see it neither as an unsung hero, nor a team player. It simply exists without any persona. Perhaps its invisibility is a testimony to the hundreds of millions of lives in which it quietly goes about its business of “protecting the dignity of man.” None of us sing praises to a hearty sphincter. If anything, we praise our own self-control (so little do we know about what is happening behind the scenes) in making it to the restroom in the nick of time. Muscles, hearts, erectile dysfunction, healthy lungs all get good face time. But in our culture, the sphincter has no advance men, no PR department, and no creative department ready to pitch an unforgettable tag line, no one to give it a pop personality.
But let forget its ninja skills and it becomes not only apparent, but the center of attention. An impaired sphincter can reconfigure lives that were doing just fine before it abandoned its sentry post. It can redefine lives. Lives that never gave the darn “thing” (one does not want to personify a traitor) a thought, now must plan, scheme, schedule, prepare, anticipate, and compensate in ways that would impress Harry Potter.
In spite of the above, the unfortunate truth is that an announcement that a synthetic replaceable sphincter has been perfected would not raise an eyebrow at the Nobel Prize Nominating Committee. The simple fact is that in a world awash in information, there is no awareness, no notoriety, no celebrity spokesperson, no highly visible centers of excellence, and no visibility for the impaired sphincter and its outcomes, incontinence. Worse still, it’s that there is no mandated curriculum in medical schools, never a question on board exams for doctors, no challenges to the interns on ward rounds, and very few support groups. So, this article (and the aforementioned book), and the information that it both invites and provides, is an attempt to fill the gap and hasten the change.
The book Managing Life with Incontinence will help individuals with incontinence, their families, significant others, health care providers, policy makers, and perhaps songwriters, playwrights, and poets navigate the reconfigured lives that are possible for all of us.
As for my hope for the Nobel Prize Nominating Committee to one day recognize and celebrate either a cure or successful treatment for incontinence, I would like to refer back to the prize medal itself and its irony. The medal of the Nobel Assembly at the Karolinska Institute depicts the Genius of Medicine holding an open book in her lap, collecting the water pouring out from a rock in order to quench the thirst of a sick girl at her side. If the image of water pouring onto a girl’s lap is not reflective of incontinence, I don’t know what is. Maybe that’s what we needed all along to spur the science in this area, for the Nobel Committee to read its own subliminal message, that cures must be found for incontinence.
Finally, in support of my argument for full Nobel recognition at the time a cure is announced, I present the inscription on the Nobel Prize medal, “Inventas vitam juvat excoluisse per artes.” Loosely translated, “And they who bettered life on earth by their newly found mastery.” A fitting inscription for the person or persons who provide the definitive treatment for incontinence. Until then, it is the hope that this article and future pieces on continence will inspire robust research.