To The Best Of Our Knowledge; In Pain

From Wisconsin Public Radio and PRI, Public Radio International, it's to the best of our knowledge on Jim Fleming. Pinch me, we say, I must be dreaming. But why? Well, we don't feel pain in our dreams. Physical pain is an inescapable part of the real world. This hour, we'll explore pain, its realities and its myths, even its market value. We'll get the perspective of Jimmy Palmieri, a man with bashed syndrome. He lives a life of constant, unimaginable pain. I was told as a young child that there was someone that I could meet, but they didn't have a chin, because the ulcers had eaten away at their skin, and I didn't want to see that. I didn't want to be friends with this person. I did not want to see what could be. We'll also consider why we laugh when someone falls down. In the audience, you are able to laugh because it's not happening to you for once. And why should anyone choose to hurt themselves in a bid to find God? But first, pain in the name of science.

Justin Schmidt has been stung by nearly every insect with a stinger. He's a research biologist and professor at the University of Arizona's School of Entomology. He's graded the sting of every insect he could find, from the benign honeybee to the terrible tarantula hawk wasp. He tells Steve Paulson about his creation, the Schmidt Sting Pain Index. A sweat bee and a fire ant are both one. They're sharp and we kind of have an explotive and say, oh rats and go on with what we're doing. But they're not like a honeybee, which is clearly a lot more tension grabbing than say a sweat bee. And then it goes up to four. Yeah, four you don't want to experience. And fortunately there aren't very many of them. And there's only really one that's in the US. It's the tarantula hawk. It's a huge wasp. It's usually gunmetal blue black on the body. And it often has fiery,

bright orange wings. And this thing is about two inches long. As their name says, they sting and paralyze permanently tarantulas. They actually sting a tarantula. Yeah, that was one of the fascinating aspects. You say, wow, tarantula is such a fierce, strong animal, much bigger than the tarantula hawk. Why can't it win? And we don't really have answers for that. The tarantula almost seems to be paralyzed mentally before it's paralyzed physically. So I have to ask, have you been stung by a tarantula hawk? Unfortunately, yes. My initial feeling was, oh my goodness, it's like that power line. It was above my head where we were intrigued by a side of the road. Had snapped off and landed on my finger. And you just sort of scream and this is public form. So I can't describe some of the words that I use, but you can well imagine.

My sense is that that's actually not the most painful stinging insect out there. It's actually the bullet ant of Brazil. Exactly. And the reason is they're roughly the same acute pain. The tarantula hawk hurts that way for about two minutes, maybe three. And if you have a social audience around, you may be able to milk it for a few more minutes. But it comes on almost like an electric shock. And then it goes away the same way. It just all of a sudden, two minutes here. Oh, I'm fine. I'm dripping wet sweating every single hormone in my body was purged out into the bloodstream. And I'm exhausted. But I don't feel any pain anymore. The bullet ant, unfortunately, is rather different. It's about the same pain, except that it comes in waves. They come and they go a little less. They don't go. They go a little less. And this continues on for, are you ready? 12 to 24 hours. Wow. And there's nothing that I know of that can make it go away. I tried. You know, I was

just the young postdoctoral student first time. I got stung. And so we went to the local canteen in Northeastern Brazilis in Belling. And they have good food and they have very good beer. And they have ice. And I was trying all three of those. And it didn't work. I may have gained some weight, but I didn't make the pain go away. But it sounds like it didn't stop your research. Well, I've tried very hard not to get stung by them since. And many people have done whole career, or good chunk of their career, working on. Bullet ants have never been stung. What I have to do is collect them and collect their venom, which means I have to get live one. I've got to get them into containers. Got to keep them in the container. And meanwhile, this is a colony of all one to 3 ,000. And they are very fast and very agile with very sharp stings and very sticky feet. So you can see you're up against a pretty formidable

opponent. I grew up hearing that if a bee stung you, it was bad for you. But actually much worse for the bee, the bee would die once the stinger came out. Is that true? Do most bees actually die after stinging you? That's right, all of them in the apis, that's the honey bees. And all of them can lose their stinger in you. And that was one of the problems that Darwin grappled with. He says, you know, how on earth can natural selection favor somebody who's committing suicide? Well, if this benefits the bee's mother, if you kill the queen, well, that's pretty much the end of the colony, the reproductive unit is gone, like a little city is gone. It's worth sacrificing yourself to protect her. And then you say, well, why do you have to die? And the reason is that you're pretty big. You know, think of a honey bee as being little. But compared to its stinger, it's a good 100 times bigger. So you sting something and it takes a while to get all that venom into you. But if you

lose the stinger in there and you got the nerves and the muscles to keep it going, then they knocked you away and they don't know that, oh, I only got 10 % of the dose. Well, guess what? Here's 90%. It allows them to get a rare impact on you where they can do some damage to deliver the full whammy. You've written that from the human perspective, from getting stung, a sting is actually kind of like false advertising that they tend to hurt far more than they really harm you. Exactly. I realized when I got into this area that it was actually human psychology as much or more than it was insect venom and pain. We are psychologically intimidated and frightened by this. It's one of these phenomena where the sting itself really isn't that bad. But boy, our reaction to it is much more serious than the actual sting itself. What's been your worst experience, your greatest pain of getting stung? Probably the worst was in Costa Rica.

And it was this little black wasp that I didn't actually even know what it was. And it was in a colony and I was away from where I usually was. So I had minimal equipment and I was determined that whatever this thing was, pure black is intriguing because black is one of those warning things telling you that I'm advertising that I'm nasty. I mean, and you don't want to mess with me. So are you lying or are you telling the truth to me? So that means in order to answer that, I have to catch them. When I put on my B veil and I scooted up and I was going to bag it and but you scooted up as in you were shitting up a tree or something? No, just up a steep hill. And I tried to do that and they came out just exploded and oh, I didn't realize they can crawl through B keeper veil. So I retreated back down quickly and I have to get in, I don't know, five or six stings. And I said, well, we got to fix

that. So I just happened to have a mosquito veil, the kind that you, where if you ever go to Alaska or the Northeast and you're a mosquito season, these swarms come to you. So I put that underneath and said, aha, we'll get them this time. So I went back up there and well, they went through the veil and that was fine. They couldn't get through the mosquito thing, but oh, they were pretty good crawlers. And so they dug their way underneath the elastic on the mosquito veil. And there was another batch of stings on fleeing back down and had my sister and I said, look, we've got a problem here. You know, these things are getting the better of me. And so this time we used half a rule of duct tape and we taped up all of the elastic areas all around where my gloves were all around everything around where my bee suit was connected to my boots and everything else. And wow, I finally got it. But in the meantime, I had, I know, eight, you know, ten stings. And these things really smart.

They're a polyby, I think satanis is what the name. But you know, that's pretty much what they were. They were truth in advertising. They sure were. Justin Schmidt is a professor and research biologist at the University of Arizona School of Entomology. He talked with Steve Paulson. Oh, this music evokes the antics of Buster Keaton, Charlie Chaplin, Harold Lloyd, all the greats of silent film slapstick. But why do we laugh when someone slips on a banana peel? Well, Jerry Lewis once said, I do not know that I have a carefully thought out theory on exactly what makes people laugh. But the premise of all comedy is a man in trouble. That remark gave Ellen Dale the title of his book, comedy is a man in trouble. Dale told Anne Strangehems how he came to love physical comedy. My mother preferred English comedy. So she she showed us kind hearts and coordinates and she played Gilbert and Sullivan

operett as for us. But my father was more interested in American slapstick comedy. So he showed us the Marx brothers and Charlie Chaplin and Laurel and Hardy. And in fact, used to work out the Laurel and Hardy routines that we just watched. He would sort of play them out with me and my sister. That's how I got into it. It just I don't know that I ever got into it. I feel more that I was born into it. Just a way of seeing the world of being aware of a certain strand of experience. That's happening to everybody every day. And my father's family was big laughers. My grandmother was a big laugher and she used to tell she would regale us with every little slapstick incident that had happened to her. So when you went back as an adult and began looking seriously at slapstick comedy from its beginnings

all the way into the current day, what did you think about what holds all slapstick together? I mean, what is slapstick? What makes a piece of comedy slapstick? Well, I think the minimal qualification is that it is about our physical frustration with existence. I mean, existence is physical and yet it's not very cooperative with the physical aspect of existence. And when a moviemaker will say portrays that in a way that makes the audience laugh and you have slapstick. But the fact is it's rooted in something much more pervasive in the culture generally. And you can see, for instance, the Olympics, I think, represent a similar need to overcome the physical limitations. With the Olympics, you have this heroic

version of overcoming the physical limitations of existence. And with slapstick, you have the banana peel. Exactly. It's more like you don't overcome the physical frustration. You give into it. But didn't you ever wonder, I mean, why does that make us laugh? Why does it make us laugh to watch another human being in pain? It's funny because it represents in an exaggerated form the sort of thing you survive every day. It happens to you all the time, and yet you survive it. And I think at the root, there's something common about survival. It's highly improbable. The world is not that hospitable. It's very difficult to get what you want. It's plus other people's bodies or inanimate objects. Do you have some favorite slapstick movies or practitioners? I think Buster Keaton. My favorite one

is sort of a refinement on slapstick. It's Stimba Bill Jr. from 1928. He and the girl are, it's a Romeo and Juliet story, basically, where the fathers are antagonistic boat owners. And so at night, Buster is sneaking out of bed across his father's boat to meet the girl who will come to the end of her father's boat and this sort of talk or whatever across the ends of the boats. And he's on an upper deck and he doesn't, it's night. So he doesn't realize he's come to the end of any falls ten feet and lands on his ear and he does it. I mean, you can see he does it. There isn't a stunt double. He didn't need one. So he lands on his ear and then he stands up and shakes his head and he's clearly days, but he wants to get to the girl. So he continues across the deck and there's a piece of row lying on the deck, which of course, normally he would just step over, but instead what he does is he picks it up and dupes under and then lays it back down on the deck

and then he stops and looks back at it as if somehow somewhere in his mind he knows that he didn't quite need to and then just shakes his head and runs off to meet the girl. So that's my favorite. Some of the best slapstick it seems to me is funny because it plays on recurring common nightmares, you know, showing up at a party without your pants on. Having them fall off at the party because they aren't sewn properly, which is a herald Lloyd routine in the freshman. Or running, you know, your legs pumping furiously, but you're not getting anywhere. Yeah, no, that's exactly right. And that's the thing about pain with respect to slapstick in a sense they had to suppress the awareness of pain that the accidents in real life would cause or the audience would feel uncomfortable and where they go instead maybe is dread so that it's sort of the social dimension of falling down. It's not only the falling down, but it's the fact that there are a bunch of people around you who saw it.

And that's a thing in the audience you are able to laugh because it's not happening to you for once, but at the same time you're identifying with the clown to whom it is happening and who is being laughed at by the people surrounding. So you're free from it in a sense and yet you go right back into it by identifying with it and it does create that nightmarish feeling of just the worst thing possible always happening. I wonder whether that's why slapstick movies in particular I think kind of you kind of don't want to watch them alone, you know, that I think they're really best enjoyed with other people, you know, or an audience or something because it's it's a very social kind of comedy in the sense that we're all laughing together at our human limitations and our failures. Yes, I think that's really really important in slapstick that it's a group response to

what is a common experience of us as physical beings. In fact, it even partakes of ritual, I think. For instance, I've always noticed that I actually watch it from watching movies with my grandmother. It doesn't matter if you know what's happening or if you know what is about to happen. The joke will be planted. You can see it coming. You know what's going to happen and that doesn't kill the joke. My grandmother would start laughing as soon as the plant came on. The plant didn't keep her from laughing the way people complain about mysteries if they can guess who did it. Well, in slapstick comedy people will start laughing as soon as they can guess what's going on. My grandmother used to say, oh no. And as appraile to laughing, as hard as if she'd never seen the joke in her life. And I think it has that sort of ritual quality. I really think part of it is that you're sitting down very little can happen to you in the slapstick vein if you're sitting down.

And then it's all transposed or projected literally, I guess, onto the screen and you and the group. Get to vent, basically. You're relieved that it's not happening to you. Ellen Dale, the author of Comedy as a Man in Trouble, Slapstick in American Movies, talked for then -Strain Chimps. Late of this hour, 9 out of 10 doctors prefer. And you can't take a more potent pain reliever without a prescription. The history of aspirin advertising. There is a saturation advertising campaigns that were like none other seen before or since. There are literally millions of commercials of one sort or another for aspirin in Latin America. But just ahead, seeking God through self -hurting. Pain has not disappeared from the religious life. You still see people hurting for the sake of that intimate encounter with something greater. I'm Jim Fleming. It's to the best of our knowledge from

PRI Public Radio International. It seems counterintuitive, inconsistent with common sense. Someone actually seeking out the very thing that most of us avoid. Physical pain. But rituals of self -punishment are common in the religions of the world. Aerogooklick, author of Sacred Pain, hurting the body for the sake of the soul, tries to help us understand this seeking out of pain in the search for God. On the conscious level, there's this desired B1 with something that is somehow greater than your own

personal ego. Broadening your identity in the Christlike community, the monastic community. But that's on the conscious level. What is happening at a semi -conscious level is a systemic dissolution or dissolving of your sense of personal identity. The gradual application of pain over time has the effect for neuronatomical reasons of weakening your sense of being an integrated self. The literature indicates that the sense of identity of the self -hurter dissolves. And then states of transcendence are enhanced when the right belief is also present, belief in something greater than yourself. In the more archaic communities, agency or self wasn't valued as an ideal, and the divine wasn't necessarily imagined as a person in quite the same way. So this dissolution of identity was valued. But I should say,

I should say, as the person who has disappeared from the religious life, in the context of pilgrimages above all else, you still see people hurting for the sake of that intimate encounter with something greater. I suppose that's not so much different from the runner who runs through the pain or any of us who exercise you. When you start you know that it's going to hurt, but you think that you'll feel better as a result. Yes, exactly. In fact, the more successful runner is the one who somehow values the end more and is willing to put up with more pain. Of course, there's genetics and talent and so forth, but the desire to overcome, go through the pain threshold, is usually associated with motivation towards a certain kind of goal. When did the attitude toward this kind of thing begin to change? You talked about how in modern days we are more interested in self. Do you note in

in looking back into the history of this, that a time when it began to switch and the choice of pain became less common -sensical? Absolutely. It's actually possible to pinpoint the decade. The 1840s were very pivotal here. The invention of surgical anesthetics and obstetric anesthetics suddenly made pain optional in the medical world. You now could choose whether you wanted to hurt when you went to the dentist or when you had a child. At that point, once given the option of not hurting the vast majority of patients obviously opted to not hurt. With the loss of that option, very, very quickly, we forgot what value there was in pain before. You find that the American Midwives Association suggests that pain

during childbirth is a valuable ideological, psychological, and emotional experience. The same type of ideology that prevailed before vis -a -vis pain as something meaningful, a signal from God or a way of connecting with community, all that still persists in some limited medical context such as the Midwives' statement on pain. In these days, of course, our hospitals are often filled with people whom we've declared mentally unbalanced because they inflict pain on themselves. You see people who cut themselves with razors, people who have tried to kill themselves, but generally speaking, it's short of that. This is not related to people actually trying to die. Not only that, but the pain doesn't involve major brutalization of the body. In cases where a patient bangs his head or her head, severely injuring themselves, there is definitely a call for hospitalization or some kind of treatment. The nuns and the monks over the

century who systematically hurt themselves never really went beyond the point of having the pain gradually ratcheted up. So it's a different sort of thing. But even among those, say, teenage or young adult women who, for instance, we hear slashing their bodies with razor blades, sometimes as a result of having been maybe molested, abused, too much stress and so forth. When you read their personal accounts, their personal narratives, the pain itself is often described as actually empowering and not a torture at all. How do they justify it? How does it become an empowering pain? Is this simply because it's self -inflicted and therefore controlled? Yes, the name of the game is controlled by hurting yourself, you control your own body. There's also at times an identification with the abuser who had started this cycle, so you now become the

abusive parent as well as the victim, and there's a sense of empowerment in becoming the abusive parent yourself, identifying with that agent. And thereby the pain that you're inflicting yourself is experienced as a source of power and sometimes in a strange paradoxical way almost as pleasurable. Is this kind of, I suppose you should call that a ritual inflection of pain on yourself? Is that the same sort of thing as the choice of pain in religious communities? In some ways, it's the same. I believe that the biological foundations of both are virtually identical. The difference is that in a cultural religious context, there are certain well -conceptualized ideological goals. There's God on the cross and you want to be like God, or a relative died and the morning ritual calls for self -hurting in a very carefully designed way and so forth. And so it isn't

spontaneous in the closet type of slashing. It's a cultural, well -recognized ritual. Are there even in modern times accepted uses of pain? You talked about midwives saying that there can be a value to a potential mother experiencing the pain of child birth. Are there other examples of things in which we look at it and say, yes, it's all right, you should have pain in those circumstances? Yes, I believe so. You mentioned the example of the athlete who has to go through the pain threshold to become successful. There's also the military context, basic training in which the new recruit is expected to hurt and suffer this great discomfort in order to, in a sense, lose his sense of individual identity, the teenager that he was and become part of a greater collective identity, the unit, the Marines. How much of this is a Western concept? Other cultures view the use of pain differently, don't

they? Yes, this concept, by the way, of pain in the military is very similar to initiatory pain or deals in which boys, sometimes girls as well, are initiated into the society of adults in many tribes and cultures around the world and Africa, South America, and Native Americans, and so forth. You become a warrior and an adult through going through these various rituals. Do you think that things would be different if we, in the West, viewed pain as a gift instead of as a pain? Well, I believe that to some extent we still do, but as a cultural thing, we have basically abandoned any recognition in the value of pain from our cultural life. We've banished it starting in the 1840s and I feel that it's irrevocable and it's not that we need to remember the pain is intrinsically good. That's not what I'm saying, but what I'm saying is that the ideology in

which the individual biological self reigns supreme, that kind of thing I think has gone a bit too far and what came before the self and relationship to other selves, an identity with some greater value, the loss of that I think is something of a loss. I real, glücklich, author of Sacred Pain, hurting the body for the sake of the soul. Americans spend billions of dollars a year on over -the -counter pain relievers. In fact, all over the world, easing pain is big business and aspirants one of the top sellers. Why? Charles Mann, author of the aspirin wars, tells Steve Paulson what happened when a German company called buyer came to America. Buyer made just an enormous amount of money selling this drug. It became famous, actually, for this and because it was so popular, there were counterfeit

all over the place and the buyer company then attempted to fight them in one of the ways it did is by putting its name on the product and trying to advertise it as buyer aspirin and of course Americanize itself to bear. Then what happened during the First World War is that the American branch of buyer was seized by the American government because it was belonged to a German company and was nationalized and became the bear company which was owned by some quack medicine makers from a company called Sterling Products. As a result, there was this bizarre situation for decades in which there were two companies that made bear aspirin, one here and one in Germany. And they were both called the same thing. Of course, the same thing had the same trademark and in business terms, this is an aberration. This is like one of those astronomical things where they see something that couldn't possibly be the case. Nowhere do you find two companies with the same name, the same trademark, selling the same product. Now when you say they had the same trademark, aspirin itself, the word was trademarked. Aspirin

itself, the word was trademarked and in this country long and complex legal proceeding, the American branch lost the trademark on aspirin but it kept the trademark on bear, both the name bear and then what they call the bear cross which is the word bear written out horizontally and vertically crossing at the Y and that's the symbol of bear and was sort of stamped into the tablets. So is the word aspirin still trademarked? Still trademarked much of the world, not in the United States. In the United States if anybody who makes acetylicellic acid or ASA as it's called by the chemist can call it aspirin. But they face a lot of complex restrictions on where they can sell their aspirin under that name. So if you make aspirin in the United States who wants to sell it in Germany, you have to call it ASA and in fact in most of Europe it is called ASA. Now given the revolutionary nature of aspirin, this new reliable pain reliever, you would think the company or the companies would want to market it like crazy but there were restrictions and it was kind

of a taboo among doctors at least to really advertise drugs. Yeah it was considered a taboo for the medical profession for you know serious professionals doing real medicine to advertise it all. This was considered to be the vulgar domain of patent medicine makers and they are absolutely furious when buyer began advertising this heavily putting you know the name bear aspirin in magazines and newspapers and they attempted through a variety of regulatory and legal proceedings to block this but it really actually wasn't against the law. Now aspirin was not just sold in the United States or in Europe it was also sold in Latin America and there was a huge marketing campaign there wasn't there. Aspirin in Latin America there's some kind of resonance there because sales of aspirin in Latin America were just extraordinary. People stocked up on it in this absolutely amazing way. Partly because marketing was cheap there an American or European company could buy extraordinary numbers of radio commercials or newspaper advertisements were very little.

There is these saturation advertising campaigns that were like none other seen before or since. Then peculiarly enough during the Second World War the German and American companies battled it out in an attempt to show their patriotism to their respective causes leading to excesses of aspirin marketing that are just amazing to contemplate. There are literally millions of commercials of one sort or another for aspirin in Latin America. Good kinds of things were said in these commercials. You know it's the same claims as before but they were in fact as a historical footnote Eva Perone got one of her starts singing aspirin commercials in this extolling how this would put the woman in mind for love that kind of stuff and it would make men quote unquote strong. That was a very common theme but really they traveled with these kind of medicine shows into the remote back woods and they would the aspirin salesman would show up in town with movies and people would gather around and he could have his stacks of aspirin and they would show propaganda

films from Third Reich or from the United States sort of mixed in with industrial documentaries and the message somehow would be that you would learn to dive or to make cars in a factory or become extremely strong or something if you took aspirin. So the marketing campaign was actually a lot more intense or more outrageous in Latin America than it had been in the US. Yeah I would say even more outrageous. You know after all in this country you had Anison which spent decades advertising that it was made not out of aspirin and caffeine but out of some sort of miraculous substance called Anison right that was somehow distinct from aspirin. Is it distinct? There must be some difference. Well this is the kind of thing that drives the examiners of the FDA into their dotage and to gray hairs because there's claims that somehow if you take a little bit of caffeine it potentiates or you know increases the effect of the aspirin. This is never I think it's fair to say that despite decades of effort this has never been shown to the FDA's

satisfaction and many doctors when we wrote the book The Aspirin Wars told us there was their private suspicion that the reason that this worked is that a lot of headaches are caused by people not having enough coffee in the morning and so when they took their Anison in words you know cutting the gourd in out of the problem very quickly. Well then some new drugs came along acetaminophen better known as Tylenol. How did that affect the aspirin industry? Oh it was a terrible thing for the aspirin industry because acetaminophen was advertised as being gentler on your stomach. One of the interesting things about this is that aspirin is in fact tougher on the stomach than acetaminophen but for the vast majority of people the slight abrasion caused by aspirin stomach lining is just simply not noticeable but because some psychology is such an important part of pain and you know the way you feel that people seized on this and the Tylenol people Johnson and Johnson were able to capitalize on this and to build this image of this you know safe but powerful

and effective and soothing pain reliever. They also came up with this marvelous advertising campaign that went on for you know decades which was that hospitals prefer Tylenol and more hospitals used Tylenol and they would get a soap opera actress and put her in a medical setting and she would explain this and it was all true in fact more hospitals did use Tylenol well that's because Johnson Johnson gave it to them. Well they also had this ingenious line about extra strength Tylenol you can't buy a more potent pain reliever without a prescription which if you actually think about that line you can't buy a more potent it's the it means it's exactly the same yes exactly yeah now but obviously nobody would buy it if you said extra strength Tylenol just as effective as everything else exactly the same as everything else so they say you can't buy a more potent one I'll tell you these people are geniuses what's interesting is that these drugs are incredibly cheap to produce so that even though you buy them for five or six bucks at the supermarket since the cost to the ingredients is so low these are enormous profit centers this is a very good business to be in

Charles Mann author of the aspirin war is money medicine at a hundred years of rampant competition he spoke with Steve Paulson from doctor's office is across the country comes survey replies of what doctors recommend for headache neuritis neurology pain three out of four doctors recommend the ingredients in anison only anison of the four leading headache remedies has special ingredients to relieve pain fast help overcome depression fast relax tension fast coming up next one man's Odyssey of illness and pain he said to me we just did not expect you to live beyond 25 I'm getting into my fourth decade pretty soon there's no reason as to why I should be here I'm Jim Fleming it's to the best of our knowledge from PRI public radio international it is

Jimi Pomenieri is in constant physical pain. He has beset syndrome, a rare disease that affects only about 15 ,000 people in the United States. It's an autoimmune disorder that causes a host of other symptoms, including chronic headaches, fever, nausea, severe joint pain, ulcerations, and skin lesions. There is no cure. Pomenieri tells Anne Strange -Shamps about living with bishops. My symptoms started three weeks after I was born, and my fevers would go up to about 106. They just didn't know what was happening. I would vomit every day. My mother's father were married very young, and they

had a child that was enormously ill, and they had no clue on what to do, and doctors had no clue on how to treat me. So they treated every symptom, never really getting to the base of the matter, and I was around 10 or 11, and my mom and dad had taken me to a plethora of doctors, basically getting the same information that I should be institutionalized, that this basically was in my head, that I was having some type of emotional problem and was preferring to be ill rather than to live a life. Did you do this even past infancy, like are your memories of being, I don't know, six, seven, eight, ten? Up to 20. I mean, this was constant, and at the age of about 16 or 17, my mom had the, I don't know how you would say it, the audacity or the brains to call the Pastor Institute in France, and they directed her to a doctor in New York, and one visit to him, and he said to us, he has one of three things,

and within two months, they knew what I had, and I began treatment. Did the treatment help at all? Was there anything to do? It was very archaic at the time. What they were doing was they were taking blood from family members and spinning it in a plasma -phoresis machine and giving me the parts of the blood that I needed, which was fine and good, but it was a band -aid, it wasn't helping. It would keep me well for a period, and then they invented something called transfer factor, which I don't know if is used anymore or not, and I believe it took about four pints of blood to make a 10cc needle, which was extraordinarily painful when I would receive a needle, my arm would be in a sling for about a week later. That, you know, either did or didn't work, it was not a long -term solution. I, in my travels of doctors, came across the most wonderful doctor in the world is Dr. James Oleski, and he's a pioneer in pediatric aids at this point. And he suggested that we try intravenous gamma -globulin, and that is what I've been

on for approximately 26 years, and every 21 days I have a transfusion of gamma -globulin. Isn't gamma -globulin supposed to be something incredibly painful to receive? Intramuscularly, it's beyond painful. Intravenously, you have reactions in the beginning, very similar, I imagine, to a chemotherapy type thing, where you vomit, you are very tired, massive headaches, and then one day suddenly you are used to it. You know, I'm very thankful. I call it the horror show, you know, the 21st day, because I get it every 21 days. When in actuality, I know in my heart that I'm glad that I'm able to get it. What would happen to you if you didn't get it? You know, if I didn't get it, my body wouldn't hold up. My body would wear itself out. I become so ill that I don't know how to explain it to you, but every part of my body shuts down. You know, and although the

gamma -globulin keeps me alive and keeps me able to live a life, I still endure many of the ramifications of bishops syndrome, but to me I guess their second nature. Like what? I have constant oral ulcerations, I have neuropathy, which is a nerve damage in your fingers and your hands, and your feet. I have epiditomylus, which is testicular pain. I have it constantly. I have central nervous involvement, which is racking with my balance at this point. I just tend to overcome a lot of these things, so I don't know how I just tend to. But are you telling me that you're in pain all the time every day? You know, it's funny. I don't look at it this way. I realize that I am in pain. I'm not playing mortar here. I do realize that I am in a level of pain. I realize that some days it is worst in others. I realize there are days that I cannot get out of bed. And I realize that there are days where I can just deal with it. And it says though, you know, someone having blond or black hair, it's what they know.

I don't take pain medication. And there's a very clear reason why I don't. I don't know what the future holds. And I don't want to be immune to any pain medication. So what I do is pray a lot of it away. And this is going to sound so trite to you. But I do something that I didn't know was not normal. And when I wake up in the morning, I do something called would I term prayaways? And they're just, you know, I got to can't deal with this today. Take it away. I have a lot to do today. I didn't realize that most people don't do that. And I know that sounds trite. And I know it sounds simplistic. It's just part of my life. I just pray the pain away. And you know, I'll take it Friday. You know, I have stuff to do today. So I'll do it Friday. For people who don't know what it is. What is Bichet syndrome? Bichet syndrome is an autoimmune disease that is a disease that's hyper immune. So rather than having not enough immunities, Bichet patients tend to overreact to some type of illness or

any type of infection. In doing so, it wears your body out by fighting so hard. So therefore, it depletes any energy that you have left to continue on. I suppose, I mean, there must be people who would say, it's amazing that you're alive. I mean, how could a child survive that much pain, those fevers, all the vomiting day after day after day for an entire childhood? It's pretty amazing. I went back to see my doctor in New York and he said to me, we just did not expect you to live beyond 25. He said, so we are at a loss. We have no data on you. We have no data on people at this age. He said, and there's a collection of you that have survived and endured this. And we're now collecting data. So there's really no precedent. There's no reason as to why I should be here. But I'm a very spiteful, tough man from New York. And I'm imagining that's why I'm still here. I'm not sure that it has

anything to do with bravery. I'm thinking it has to do with a lot of spite. Were you able to go to school as a child? I went to school. I most years would have a third of the year in illness days. I was very lucky that studies came relatively easy to me. So I was always able to catch up. I also went to college. I went to the Culinary Institute of America because my passion was for cooking. And I was denied entry because of my illness. And of course, it was just another fight for me. And I fought it. Naturally, we won. It's illegal to eliminate someone because of an illness. I think they strongly suggested that I may not be able to do this. I did have to take 11 leaves of absence, but I did get through it. And I did get my degree. Well, you didn't just get your degree. You're a very accomplished chef. And you've maintained a professional career. You're a chef to stars in Hollywood, right? The day that I graduated school, I was told that there was an executive for Universal Studios that was interested in hiring a personal chef. And it was a blind interview. I didn't know who it was for.

And I was told that it was a casual interview. It was in New York. And I was going to the museum that day. So I was dressed in jeans and a Mickey Mouse sweatshirt and a backpack. And I showed up and there was about six men in three -piece suits. They were the style at the time and they were waiting for their interview. And I literally thought, well, I blew it. I thought it was a casual interview. And a secretary came out and looked. And I was the last person to arrive. The secretary came out and looked around and said, you are the only one that listened to the word casual. So I'll take you first. And I imagine if these men had guns, I'd be filled with holes at this point. And I had my interview and she said, I'll be back with you in two days. I had no clue on who it was for. Two or three days later, it was dinner time and a phone call came and it was for Steven Spielberg and Amy Irving when they were married. And I was hired for them. And that was my first job. How have you managed to live with daily pain? And from time to time, it sounds like incredibly acute pain and work as a professional chef. I mean, being a chef

is one of the most demanding jobs there is. You know, I look at my surroundings and I say, you know, who gets to see the celebrities that I get to see or who gets to be in these wonderful homes with these beautiful views. And today I'll look at the ocean and I won't feel my back hurting. There are periods where I don't work six months longer, where I've not been able to do something. But those periods pass. Having an illness, this severe and with this many different, you know, sort of ramifications, different body systems involved, you must have to get an awful lot of medical care. What about medical bills? My medical bills are astronomical. I mean, astronomical. I was dropped from my insurance company because of it. And I have gratefully been able to get on a state program. So could I ask how much a year? You know, it could be in the hundreds of thousands of dollars every year. And,

you know, that's what it takes to keep me around. Have you ever met anybody else with the same disease? I've avoided it. Why? I've avoided it probably for selfish reasons. I did not want to see what could be. I didn't want to see someone in a wheelchair. I was told as a young child that there was someone that I could meet, but they didn't have a chin because the ulcers had eaten away at their skin. And I didn't want to see that. I didn't want to be friends with this person. I know what my life is like. And I can deal with that. I don't want to premeditate what might happen. But I did come across someone in LA. And the comical thing is, or the irony of this situation is, he was diagnosed by the same doctors in New York and New Jersey at the same time that I was. What was that like to meet somebody who has the same disease? And did you have a feeling of kinship or a feeling that each of you, this might be the one person in the world who would understand what you live with?

Absolutely. To meet someone that I don't have to explain anything to. And to just be able to hug them and know that they know was beyond. It was so cathartic for me. I've read that one of the reasons so many people who have the sheds die so young. I mean, the average, as you said, is 25 years old, is due to the level of pain. And people just can't take it. And so a lot of them commit suicide. Have you ever been tempted in that direction? No, no, absolutely not. You know what? I had such a great support system. I'm blessed with a family that I have. And I'm surrounded by friends. Many people isolate. That's not been my case. So there's really no thought on that. It's not an option for me. I don't judge anyone that it was an option for. You said earlier that one of the ways you deal with the pain is praying, meditating. I'm assuming that living with this kind of

disease and this much pain has made you a more spiritual person. I'm wondering if it's helped you find any kind of explanation. Absolutely, absolutely. I went to one of the religious leaders in our community. And I asked or I said, why am I being tested again? I don't know what why I'm tested. My faith never, never dwindles. She said something so smart. She said, why would the devil test people with no faith? He already has them. He needs to test the most faithful. She says, this is why you're being tested. You'll always be tested because your faith never dwindles. And I believe that to be true. And my faith doesn't dwindle. It only gets stronger. And my prayers are answered every single one of them, one at a time, maybe not at the speed that I want them at, but they are answered. Jimi Pumieri spoke with Anne Strange Shamps.

It's to the best of our knowledge. I'm Jim Fleming. You can stream to the best of our knowledge at our website, ttbook .org, where you'll also find a wealth of past interviews with great thinkers, creators, and agitators. If you want to keep an eye on what's on our minds, follow us on Facebook. If you want a CD of this hour, contact the radio store at 1 -800 -747 -7444 and ask for the pain show. To the best of our knowledge is produced at Wisconsin Public Radio. This hour was produced by Sarah Nyx with the help of Charles Monroe Kane, Doug Gordon, Anne Strange Shamps, and Veronica Rickard. Thanks to FreeSound .org. Our executive producer is Steve Paulson. Our technical director is Carillo Wynn.