The Government Said, “Either Lepers Or Vietcong; What Do You Want?”

Louisiana, Summer 2001
This interview is part of I Left You In The Dust, a collection of life stories told by the people of Louisiana to me. For three years I lived on the Lousiana State University campus, and only upon graduation, a few weeks before moving to the East coast, I realized I didn’t know much about Louisiana’s people. So during the time left I endeavored to meet them. I was surprised how in spite of the bad deal they had, from cancer alley to hurricanes, they loved their life, and they doggedly endured no matter what calamities. Tom, is one of them. In his youth he suffered from leprosy, also named Hansen’s Disease. In Carville, a small town nearby Baton Rouge, the National Hansen's Disease (Leprosy) Museum is located. Many years ago, before the illness had a cure, it was the National Leprosarium.
So there was plenty to inquire.

Ella: Another reason I’m using the tape recorder is because as you said I’m not an English native speaker, and I don’t wanna go home and write nonsense.
Tom: Well, don’t feel bad. I’m an English speaker but because my throat is fouled up even Americans don’t understand me.
Ella: I do.
Tom:  Okay, good! Good!
Ella: You were saying that you’re uncomfortable with journalists because we don’t keep our promises.
Tom: Oh, no, I’m uncomfortable with some journalists. Often times they want to write what they want to write. And we have had that experience many, many times. As long as you understand that I will tell you what I want to tell you, the way I want to tell you, you can ask all you want. Sure.
Ella: Okay. Then maybe we should start saying that I’m here in St.Gabriel visiting a very kind gentleman who will tell me a few things about his life and a few things about his experience here. I would like to find out how you got to Carville, if you feel comfortable telling me about your life there… [Wall clock chimes.]
Tom: In a car. [Laughs]
Mr. Eugene: I warned you.
Ella: Yeah. [Laughs] I feel like when I ask this kind of questions that you are used to hear, it’s like my son feels, my son is very bright, he’s eleven, and grown-ups when they want to start a conversation always ask him, “How old are you? What’s your name? Do you like it here?” and his image of adults now is that these people are very limited, you know. [Laughs]
Tom: Sure. I was pulling your chain. On the other side I have never been accused of being bright. So, let’s say my life started when I came here, I came here in 1946 from the military, I came here under guard, I had guards with me to come here, and that was the law then that a patient from there must not travel by himself, I came here in a car, in a railroad car, that was rented for me. Yes, and I was fed in a paper plate. And a military guard was posted outside my door. They didn’t want me to escape, I was a menace to society. I spent… I stayed in the biggest military hospital on the West Coast, Letterman Army Hospital, which is at the foot of the Golden Gate Bridge, and I was confined to one room but at times I could go exercise, if the powers at be decided that I may exercise, then two guards would accompany me, and I would walk up to the Golden Gate Bridge and look around and come back—you know, that was my exercise. I was watched, most of the time. I was in a… I’m trying to think of,--when you get old you forget what the hell the next word is,--I was in isolation in a room for four months without being told what my problem was, and that was a kind of a pain. They had some pretty nurses working there, and military officers. I think I proposed to two or three of them during the time that I was there but anyhow they treated me alright. The system didn’t know how to handle people like me. So anyhow they brought me to Carville and they said, “Okay, this is where you will now live. And you wanna change your name.” Everybody changes their name and my name was Dillinger when I changed it to what it is now. And I spent several years there, and at some point they decided that I could leave, if I made certain arrangements, and I left. And that’s the story of my life. [Laughs.] But now you ask me whatever you want to ask me.
Ella: [Laughs] Well, thank you. I love your humor, and I’m very familiar with it because in Romania, I don’t know if you were aware that we had communism there.
Tom: Yes, I am aware.
Ella: And we were watched all the time, and we were monitored, and the whole country was in quarantine at the time, we were not allowed to talk to foreigners on the street. It was scary and still we survived with a lot of humor, I think. We made the best out of the situation and we turned tables all the time.
Tom: Well, that’s my feeling that we all have a short span of time here, and you spend as much of it laughing about whatever and you spend as little time crying as you can. At some point you’ll have to cry, but hold back the tears! They’re slippery! So, yeah, we will laugh and, you know, when it’s time to go, it’s time to go. But go ahead, ask me something.
Ella: Well, I want to see if you remember what your reaction was when you saw the human scenery inside the hospital, and how did you process it…
Tom: It was scary.
Ella: It was scary?
Tom: Yeah, because I was very healthy, I thought, and I saw people who were not as healthy as I was. The medicines had not been available for them before I got there. The more modern medicine who were developed came around the time that I arrived so I had the benefit of new medicines. That was the plus side; the minus side was they had these new medicines but they didn’t know the dosage, so their attitude was: if a little bit is good for you, a lot is better, and often times the high doses of medicine were more crippling then your problem, your medical problem. So yeah, I saw people helped there, and I saw people crippled up and the medical fraternity would never admit to some of these problems. Something that was very common, the reaction to your medicine. The reaction was… because you had received so much more medication that it was killing bacilli in your body at a greater rate then you can absorb and the path of dead bacilli is through the lymph nodes, so that in time people got all crippled up and lost sensation in their hands and in their feet, but this is also common to the disease. People… the most common thing with Hansen’s Disease is that you loose sensation in your hands, in your feet and you damage them because you’re not aware, because there is no sensation, and you overdo things. You may hit yourself on the finger and say, “Well, it’s alright,” but you might have even broken it and you’ll carry on and you’ll traumatize what you’ve already hurt, even more so and that’s why people get in trouble that have a problem like mine.
I want to let you ask something or lead me in some direction.
Ella: Well, I want to lead you into the direction of seeing the bright side, the bright side, because I don’t want to sadden you, on one hand, but on the other hand, somehow I want to know more about your experience also because I want to sort out things about stigmatization.
Tom: Of what?
Ella: Stigmatization.
Tom: Oh, alright, okay.
Ella: Because me I'm a foreigner….
Tom: Right.
Ella: …and things are very tough for me…
Tom: Yes.
Ella: …at times, many people welcome me here but many people give me a hard time, the run around, you know?
Tom: Yes.
Ella: …and somehow I think that there is a common thing, you know, the stigma. And I want to hear bright things, how you turned tables around, so I’d like to find out how was life inside your community….
Tom: If you’ll excuse me: the biggest enemy to the patients at Carville were the employees. In Carville, the hospital was the only industry for this area at that time and a lot of people from the area made their living there, and they were uncomfortable in some ways with the patients being there, and they were uncomfortable…
Well, let’s take voting. Patients were not allowed to vote! They were not citizens! They were convicts, felons, inmates. They were calling them inmates, and the biggest block of voting were the neighbors and the people that worked at the station, and the fear was that if they were allowed to vote in a small community—at the time there was 400 and somewhat patients—well, the community didn’t have, maybe twice that many people, they were scared that the voting block would do things that they didn’t want to have done, so I think that was one reason that they didn’t want us to vote.
And the other was of course that you couldn’t go out. You could get a pass, like once a year, for a limited time. You had to have somewhere to go to, you couldn’t just go out and say, “Well, I’ll go get me a hotel.” They didn’t want that. You could not travel by public service carriers, meaning no trains, no buses, no airplane. You had to go by car. Private. [Coughs.] The mail that went out was sterilized before it went out. Coca Cola was in the bottle not in the can, and you could only get Coca Colas when they broke enough bottles at their factory or whoever brought these Cokes, if they chipped them or dropped them, Coca Cola would amass these bottles, and when they got enough of these they would send us say forty cases. They’d take the chipped bottles and send them to us, and they didn’t want them back. [Clock chimes.]
But since they were not giving you a pass, we would sneak out and, it was against the rules, we even used to go to L.S.U. games! What we’d do is we’d call a taxi cab and you’d talk—well, we had a contact—it would cost about 15 dollars, and four or five of us would go and we’d split the cab fare and we’d go to the game. Now the way we’d deal with the cab, we would tell the cab, “When you’re approaching the hospital, flash your lights.” We’d be hiding in the bushes, so when he’d flash the lights then we knew that was our contact and we’d expose ourselves and he’d stop, take us to town and he would get an extra few dollars and then pick us up after the game and drop us off to the same spot. We had many, many contacts.
Sometimes we’d go see Tulane play, in New Orleans, or they had two casinos in New Orleans—gambling was illegal except for Jefferson Parish—and they had two casinos in New Orleans and we’d go there, shoot dice or play blackjack, poker, whatever, and that was fun, it was different. Yes, some of us were stigmatized and I’m one of them, probably. In fact, you’ve never met an American that’s never been in a Loews, in a Wal-Mart, Home Depot, McDonald’s, Burger King. I’ve never been to one of them.
Ella: You’ve never been to one of those?
Tom: Every one that I’ve mentioned I’ve never been to.
Ella: You didn’t want to go?
Tom: Did I want to go? Not at this point; it doesn’t make any difference! Maybe at one time I did, but I’m indifferent about it. With a computer I can buy anything I want and have much fun. She went to town one day, she goes everywhere, to buy something, with our neighbor and her man worked at the hospital, and she bought something and the woman took the credit card and it was accustomed then to ask, “Where do you work?” or “Where does your husband work?” and she said, “At Carville.” “Oh, my God, how could he work there?!” I forget what she answered, she gets mad. [Laughs.] I think the woman had a bowel movement, but I’m not sure. [Silence.]
Ella: How does it feel to have people just freeze?
Tom: Well, when I was younger my tendency, then I was very strong, and my tendency was to attack, or want to attack. Now I just leave everybody alone and they leave me alone. I’ve got some neighbors who gave me some plums and I manage well—I say that because my good friend here gave me some plums—but let me say this to you, it’s very important: when we moved here we looked for a place that wasn’t far from Carville because one of the medications I was taking was the now famous Thalidomide. Thalidomide had great value, it would suppress the reaction but it would make you drowsy as hell, if you took one a day you would sleep at least twelve hours a day, if you took three a day, somebody would have to come and change your sheets for you, it’d really knock you out. So at that time they permitted me to go out, and I would come and stay here but I couldn’t drive very far ‘cause I’d get drowsy driving, so anyhow I moved here and I can’t speak for all of my neighbors but some of my neighbors were very unhappy that one of me had moved here, and the funny part about it is that their anxiety was that a beatnik, or a flower child, or a Black, or one of them would move here! I moved here and I was worst then them. So some of my neighbors were very unhappy, and I confronted one of them and I told this person that I bought this place for our comfort, and would not encroach on their space, I would not visit their house, I would not molest anyone in their family and the retort was, “Well, there’s nothing I can do about it.” So we lived with that for a few years! and I can tell you even if my friend was not here, I have the best neighbors in the world. I have never been so comfortable as I am here. And I can say that from this side to this side, and for a good distance, all of the neighbors are very warm, and receptive and, you know, I'm sure some of them may hold back a little bit, but for the most part there are no finer people living anywhere then here. [Silence.]
Ella: Maybe the hospital here helped them in a way, no? They started to read more about the disease… Be more comfortable.
Tom: Well, I think… I put myself in their shoes! You see, I said, “Okay, if I was one of them I wouldn’t want one of me here either!” See, so they might have been the most reluctant to accept and that was because they weren’t tutored about the problem, they couldn’t differentiate between… A person could be all crippled up and be negative. A friend of mine says, “Well, I’ve been cured of my disease but I still can’t hold a cup.” Well, cured of the disease means that you’re negative but that you’re crippled. That there’s damage, muscle and tissue damage. It’s just like if you have polio, it hits you and it cripples you and then you’re negative, but how do you get over the crippling?
So it was a problem in that people saw patients there first and said, “Well, they’re curing these people, but I see them still crippled!” and also the most, not all of the people, but most of the people were not intellectual giants. Some of them could not read or write, and they were working there, that made it a problem.
The most moving time for me there was we had a party. I’d never seen a party where you took the staff and the patients and they milled around together. And the celebration was that a man had worked there for 55 years and his brother had worked there for 45 years, so they totaled a hundred years of employment. They didn’t have the disease. And there was a lot of good food and goodies there, and that made people overcome some of the apprehensions that they had. “Oh, we’ll have some of this and some of this,” I think everybody partook in the cookies, in the cake, whatever it was there.
And that was a good experience for me there.
My best experience here was Halloween! Kids go around trick-‘n-treat, well, my neighbors knew who I was, and they let the kids come and get their treats. I had nothing to do with that. I didn’t buy, I didn’t give, I didn’t even scare them, I didn’t even go out, but yet they’d came to the door, to get their treats. And that was a great experience for me; kind of made me feel, [Laughs softly.] “Well, you’ve been accepted.” [Silence.]
Ella: Thank you. You were saying that you were the generation that they discovered the medicine, so they could stop it.
Tom: Yes. Yes.
Ella: So how do you feel about that, you know? Being in the right place at the right time, how do you feel about humanity, about doctors, you know, about finding a medicine?
T: Yes. Well, that’s great! You know, I’m glad that they found some things then, they might not be as effective now as they were then, because they discovered as they’re discovering now, that you become resistant to certain drugs, and they always try to keep two or three on the back burner, and so if you become resistant to one then you go do another one. And because of that, the mode of treatment now is what they call dual therapy, you get two drugs at one time, and in case the bug is getting resistant to one, the other one overcomes that. So, I’m glad, although the world doesn’t get all of the medications that are available to us here, and [Clock chimes.] if it was like the Dapsone that was the first drug used here for the disease, very effective. But there are times when a patient will have a reaction to that medication, and it might hurt him quite a bit, it might cripple, it may in fact kill him! It doesn’t happen often, but it can. So that, like in Third World countries where it’s not easy to get like Clofazimine and give it to a patient. Well, if he gets in trouble then they don’t have the back up for that. Then let’s say a Dapsone is a hundred milligrams a day, that’s a max, most of the time it’s five hundred a week. When they came out with Dapsone they would give them six hundred milligrams a day, so that people would say, “Well, I’ve been doing pretty well without that medicine, and now that medicine is making me hurt, there’s something wrong with this,” and again the aim of the physician was for you to become negative, weather you lost an arm, or were all crippled up, or lost your sight, to the physician that wasn’t important. What was important is if he took a biopsy and there were no microbes there, then you’re well. You may be a basket case, but you’re well.
That was the mentality of the time.
Ella: Do you remember any doctor that you were fond of or horrified?
Tom: There have been some fine ones here, yes, I’ve had some that I was very fond of, and I’ve had some that were terrible. I’m trying to think of the bad doctors, and I can think of some bad doctors but I can’t think of why they were bad. Mainly because they wouldn’t listen to what you were trying to tell them, what was bothering you. It was, “Well, if you hurt, here is some aspirin,” and that was it and it wasn’t much relief for pain. When we had some very warm people there, very fine doctors…. During the Vietnam War, we had a lot of young doctors. And I always laughed and told them the government said, “Either lepers or Vietcong; what do you want?” So they chose the lepers, and left the Vietcong alone. So we had some fine doctors that were scared of the Vietcong, but were nice over here. [Silence.]
Ella: I imagine that they were, having in mind the lack of information at that time, I imagine that some of them were brave, more special human beings…
Tom: I’m sure, I’m sure… You know a lot of the information that got out, we have to thank a patient for that, Stanley Stein, a patient that was there that was anxious to get some information out, that things were not as bad as they appeared and he gave his time, his knowledge, and all to get the word out. And he was recognized as having done an excellent job.
Ella: How did it feel that you were in a hospital, and at a certain moment you, the issue got so much attention, that a few of the patients turned into little celebrities?
Tom: Oh, it didn’t bother me at all. I have always been behind the scenes, I’d rather pull strings then in upfront. No, I’ve never looked for the applause, the stage. No. I was glad that somebody was doing something to help everyone. The times that I have exposed myself I was very reluctant to do it, and no one else wanted to do it or whatever and some time I have spoken to a congressional committee about problems there. But it’s not anything that I wanted to do… You know, how they say in Bulgaria: you gotta sink or swim. Well, yes to that: either you gonna paddle or you gonna go down and make bubbles. So…
Ella: I'm like that now. [Laughs.]
Tom: [Laughs.] Okay. Alright!
Ella: I’m moving to New York City and I have no connections.
Tom: Oh, no, no! I lived in New York City for years, and you’re going to make it good. You know why? I'm going to tell you why. Because you sound like a Jew.
Ella: I sound like a Jew?
Tom: Yeah.
Ella: How come?
Tom: Just believe me when you get there, you gonna see. And you just get yourself a Star of David and tell them you belong to the tribe. Yeah, you’ll have no problem! New York City is nothing but a bunch of foreigners.
Ella: A bunch of what?! [Laughs.]
Tom: Yeah, a bunch of damn foreigners! [Laughs.] You’ll do fine.
Mr. Eugene: I call them Yankees.
Tom: No, those aren’t Yankees. I know Yankees. Those people don’t know what the hell a Yankee is. If you leave New York City and go up to Connecticut, I’ll show you some Yankees, but not New York City. So many foreigners have come there that all of the natives have moved out. [Ella Laughs.] Yeah. You know, New York City has eight million people in it, but the metropolitan area has twenty million, so those that were there moved out and let some others come in. Except for Fifth Avenue and Park Avenue, they’re all foreigners, and it was really pretty much always like that. The Italians came and some moved out, the Irish came and some moved out, the Blacks came and some moved out, Puerto Ricans came, they came by the millions, and then there was other Caribbean islanders. Dominicans and all of that…
Ella: I understand that also at Carville you had a mixture of cultures…
Tom: Yes, we did.
Ella: So how did it feel?
Tom: Most unusual, I thought, there weren’t many killings. It really surprised me in that given these different cultures that people didn’t attack each other more then they did. Most of the attacks that I saw were the same culture to the same culture: Filipino to Filipino, Anglo to Anglo, most of the time. Surprising. These human ethnic groups had different lifestyles, different foods that they did so well, really, years ago you had the Chinese house, well, that was at the end, two houses around the corner that was for Blacks—all the Blacks lived there,--the next house all Chinese lived there, the next house all Filipinos lived there. The rest was a mixture, we had a lot of Acadians there, they call them Coon-asses somewhere else, but there they were called the Acadians. We had quite a few of them there. Before you came we were trying, I was trying to think and there is only one left, and he is a man about seventy eight years old, he cannot read or write. He has the mentality of probably an eight year old, a very nice person and he’s the only Cajun left there.
Ella: So they never mixed these groups?
Tom: Sure, they mixed all the time. Oh, yeah. They intermingled. You chose who you wanted to intermingle with. We had a ball team there, and we had teams come in from…. We could not go out to play; they had to bring in their teams there. We were the only White team that played Blacks, but we played Whites also. We had teams like one it was sponsored by a Black fried chicken business called Chicken Shack and they sponsored a team, and they would come there and they’d bring their own umpire, but we had no problem with that. They were terrible players that team, and I think that’s because the bad players would come, but the good players wouldn’t. But we played some very good White teams. Then we played a local team. Not that it was a lot of rivalry there, nobody ever hit someone else with a bat or anything like that.
[Second side of tape.]
Tom: The person that he’s speaking about, I knew myself very well, the staffer that supposedly had gotten the disease. He worked there and couple of other brothers worked there. George and a couple of others were his brothers, weren’t they? Yeah. And that man first-hand learned how it was to be treated badly by your fellow men, we knew how it was because we were treated badly everywhere we went. But here was a man that was a community member, worked there and a very dedicated employee. And it comes out with… They would test the staffers periodically to see if anybody had caught the disease, he came up with a test that I suspect they would call today a false positive, don’t know, but because of that they wouldn’t let him work where he was working; now they made him work only with the patients. As a matter of fact I managed the canteen at some point then, and his job was to represent the government, because he was a government employee, and be in the canteen with me at least four hours a day, and make sure that my entries from the books were correct, so that he was protecting the government, and also he was protecting the patients. So that was the job that they gave him. He was a fine individual, and I am proud to have known him. And to add to this man that was infected, he lived to be close to ninety, and he worked like a twenty-year-old when he was in his late eighties, he had two or three jobs going, he ran cows, everything. Fine individual. I’ll never forget him. He would ask me about three times a week if I wanted to buy a horse. He had about eight or nine kids, and he had bought them a horse. The horse was defective, and he wanted me to buy this horse from him that had the pox, but we won’t talk about that, but anyhow it was a defective horse and he would always laugh. I could have probably bought the horse for five or six dollars then, but I didn’t.
He was mistreated! You talk about stigmatized and ostracized: he was.
Ella: So, in the end he was ill or he was not ill?
Tom: No. He never had a problem, he just kept having children. No, no, no problem. It was, I suspect it was an error, a false positive, and because of that they did this to this man; it’s kind of like putting somebody in jail who is innocent of a crime. If you call being sick a crime… You know, the only person that thinks is a crime, is the person that’s sick. He thinks it’s a crime that God imposes on you with this sickness, you know, “Why don’t you have it? Why me? I didn’t do anything!” [Silence.] Okay…
Ella: Nowadays they do experiments on changing the DNA, so my understanding is that the basis of this is illness is the fact that very rare individuals don’t have the immunity, so now what they working are is changing the defective chromosome. So they hope that in the future they can discover how to cure, you know, hereditary illnesses like schizophrenia or other dreadful things… I was just thinking….
Tom: Well, I was one of the first patients that they tried something on called Blood Transfer Factor, and… there are three types of Hansen’s Disease. And primary it’s Lepromatous and Tuberculoid, and one kind in between. And the Lepromatous is the bad type, the Tuberculoid is a kind of a hit-and-run type, and at some point I was in trouble. And someone wanted to do some research at the University of Rochester, and I had lost fifty five pounds, and I was sickly and I was suicidal, but for a different reason…. My want of destroying myself was to keep from being a hardship on her, she was the one that took care of me and I was very hard on her when I was frustrated with my body not doing what I wanted it to do, or being in pain, and I’d pop a lot of pain pills. But anyhow, University of Rochester was doing a study on Lupus, and they needed a living body, if you want to call me that then. They wanted to see the similarity for some of the symptoms of Lupus and me. And I said, “Sure, have at it, this body is no good anyhow.” They did a little bit of research, but at the same time they tried Blood Transfer Factor, and they had to get a Tuberculoid type like me. They found one at McGill University in Canada, and I got a donor from there. And about once every other day… well, first they’d give me a drink of something to set my thyroid off, and then the morning of the treatment they’d give me a radioisotope IV. They’d lay me down on an operating table, but it wasn’t, it was more like an X-ray table and they had these things called scintillators they’d read radioactivity, and since I’d got radioisotopes, they’d put me here and they’d give me blood from the Canadian, and at the site when they had done this, they’d take a reading. And then every hour they’d take a reading to see if…. There was a fear that it would be so effective that it would kill me. So they’d come and read and, “Yeah, it’s working!” and they’re measuring in millimeters, and you know, there isn’t much room and they’d get flustered after three days that the only sign that they have gotten was one millionth of a meter of an enlargement. So, “Well, we’ll do it again!” Anyhow they did it. On two occasions I went there for three weeks at a time and they didn’t transfer anything that I know of. I think they helped me, psychologically that I had elected to die rather than come back here, and they assured me that no, this is not how it used to be. [Clock chimes.] And in the end the reason I came was I was in such pain, the snow was three feet deep outside, and I was popping pills every fifteen minutes with no relief, and just perspiring. And either I hadn’t had the nerve to kill myself or I didn’t want to splatter myself in front of her, and I had no alternative, I says, “Well, let’s go back to Carville,” and I said that’s the easy way out. Then she could go her way and I could just end it here, and the minute I got here they says, “Hey, Tom,” the minute they saw me, “you’re sulfa resistant.” Well, my doctor in New York kept calling here for guidance. The doctor that was here in charge that made all the determinations didn’t want to give them information, and he kept on saying, “Send him on down here. We’ll take care of him.” That bastard just died about four months ago, I had nothing to do with him, that doctor, okay! They’d call him Dr. Bastard… that’s a Bulgarian word.
Ella: Really?
Tom: No. [Laughs.]
Ella: I’m from Romania.
Tom: Really? Okay, then it’s Romanian. [Laughs.]
Ella: But you know you were talking about something that it’s on my mind.
Tom: Yes.
Ella: It’s a common place but now it sounds so poignant to me that, that the difference between bravery and suicidal behavior is very slim. I read this book and I couldn’t understand the psychology of the doctors that would try to infect themselves, I couldn’t tell if they do it for the sake of humanity, or because they were very unhappy and miserable and wanted to risk death.
Tom: I doubt that, but maybe there was some of them. From my experience, from the few ones that I know that had done that, were fine people and… on the positive side, if you’d look at an actuarial table of the patients there and in spite of what you hear of all these terrible things—Betty, whose book you’ve read, is alive and well. I talk to her every Tuesday, she is ninety one or ninety two and she came there in 1926. When I go, they’ve separated the hospital in that Carville houses thirty-nine patients and the rest isn’t actually Carville. The medical treatment has relocated to Baton Rouge, what’s the name of it?
Mr. Eugene: Summit Hospital.
Tom: Summit. Okay. And I go to town and pick up a man who is ninety two, who left Carville in 1949, and I take him up there for a check up and he’s ninety two. I knew two patients there. One lived to be a hundred and six, and he died because he fell of a chair. He had eaten a lot and he fell off the chair and he broke his hip, and he died. The hundred and four year old man died because the orderly dropped him when he was gonna get a bath and that was the end of him.
I’ve known several people in their 90s. A very good Chinese friend of mine died a few months ago, one of the finest people I’ve known. He was about eighty-five or eighty-six, had a garden as big as this, he had a little job on the side, and then on top of that when he’d do his little garden and all, he’d go and circle the golf course at a fast little pace, and then circle the lake, and then come home and that was his exercise and then he’d do a little of that Chinese leaning exercises you see, he’d do a little bit of that. And he died also, he fell. He went to stay for a few days with his nephew who was a doctor—his nephew’s two sons that are doctors, and the nephew’s daughter who was a doctor married to a doctor, and they lived in a ranch-style home and in the excitement of visiting with them he was talking and walking backwards and he fell one step, and he hurt his hip and they X-rayed him and everything else, and they said, “We didn’t find nothing,” and, “Go to OT,” Occupational Therapy, and “Give him the heat,” and all that crap. He put up with that pain for about a year, and finally one day I saw that he hadn’t eaten, and he hadn’t eaten for two weeks, he was in such pain, and he’d ask for help and they’d give him an aspirin. In the end they saw that he was in so much trouble that they turned him over to a specialist and what they discovered was that when he fell he broke his stomach sack, somewhere there was a little hole and the acid went onto his hip bone, and it consumed the cartilage and the bone, that’s why he was in such pain. In the end he had pain medicine, morphine, twenty-four hours a day, and he died there in pain with the morphine, because of...
It was kinda the old mentality, that we used to laugh, the patients did, if you break your arm, you go see the doctor, the doctor says, “Oh, you’ve just got leprosy, that’s all. Go on, here’s an aspirin!” and so everything was leprosy. And now, when they see you, “Oh, I don’t know what that is, that isn’t leprosy, go see somebody else.”
I’ll tell you one more story about the oddity of Carville: it was fenced. There was a guard, a twenty-four-hour guard with a pistol! Do you know what a time-clock is for a guard? Anyhow, they had stations throughout and there was a key at the station and you stick it into your clock, this was old times, and that clock would register that you had gone to that station, because each key was particular to itself and it would register the time and the station. And an old Black patient used to tell me, “Tom, they keep that fence up to keep the patients from running away.” But at the end there were people, we had a theater in there and people would come from up the road and sneak in the back, and ride the bicycles and watch the movies and all of that, and he would say, “Now they need a damn higher fence to keep the people out!” [Silence.] It’s your turn.
Ella: Well, I read in Betty’s book about the amount of vitality there, maybe you…
Tom: Are you talking about sexual vitality?
Ella: Yeah, about romance.
Tom: Romance! [Laughs.] Well, you know, I’ll tell you the truth: I knew a man and I knew this lady, and it was obvious that they had been intimate. See, years ago the nuns didn’t permit that, the men and the women to fraternize. There was a tower built on the riverside, and the tower was built to permit the patients to walkup to the tower. The tower was about three stories high and at the top was a large room about twenty by twenty, it wasn’t a room it was like a little porch. And there were fences all around but you could look at the boats go by. And an old patient that I knew told me that he had come in there in 1901, and he used to like to entertain the ladies, but there was nothing physical, just waving and smiling and all that. On Sundays he’d get a rope and tie to it a Victrola, and pull it up to the top of the tower, he’d play his records and aim the speaker towards the ladies. To me it’s kinda like the plumage on a male bird, this was his plumage, he showed them his feathers with that Victrola.
Later on, when I was there, they had one side for women, one side for men. The ratio of men and women was always at least three or four to one. Fewer women catch the disease than men for some reason. And so, the women were there and the men here, and anyhow, back to the man and the woman that I knew: it was obvious that they had been intimate because she started showing signs, and when this thing erupted, it was twins! [Ella laughs.] It was in her room, and he delivered them, so that was an oddity, I think no one else had ever done that, but immediately those kids were taken away. They weren’t left there, no! But there were some romances there, and there were some that went sour. I know that they had brought a lady there who was a, what would they call that, a liberal spirit or a… you know, a person that was...
Mr. Eugene and Tom’s Wife: A free spirit.
Tom: Okay, a free spirit. But this was her business before she came there. And when she came there she found a sugar daddy, and he would provide her with funds, and clothing and food and all of that. And he was an older man. [Clock chimes.] I think on the side she would pursue a young man, and he discovered this. And he put a butcher knife in her.
Ella: The young man?
Tom: No, the old man. No, no, the young man, this was just a relief for him, he wasn’t that interested in her. This was just a physical outlet. The old man, he was splitting the bill, she had crossed him so killed her right in his room.
Ella: He really killed her?
Tom: Oh yes, she’s dead, oh yeah.
Ella: But what did they do about it? He was a criminal!
Tom: I’m glad you asked that, you see everybody was a criminal there, because you have the disease! So what do you do with him? He’s already fenced, he’s got a guard. They sent him out, I don’t know where he went for a few months, and they sent him back. We had a fella there who came from Ohio from a prison there, and he had butchered somebody up and they sent him there! Now he was there and they turned him loose! But there was a jail on the premises. They had a man there, they called Pole Chained Mac, and he was there for years and years, and he had assaulted a nun. I don’t know if there was any damage done, but he didn’t kill her. He was there for years and years.
There was another man there for years who said to them, “I'm off my rocker.” Okay, so they put him in there. A brilliant mind, but he said he was and they said, “Well, okay.” They put him in there. There was a third man, and he knows about, called Billy Demerit, and he was always in trouble. He’d run away, mainly he’d go to Baton Rouge. One time he went to Boston. While he was there, he saw a policeman eating in a restaurant, but the motorcycle was outside. He jumped on the motorcycle and rode off with the motorcycle. They caught him and put him in jail. He says, “I’m a leper.” “Leper?! Get out of here!!” So they got him the hell out of there. He did that many times. But there was a jail there, as a matter of fact that Demerit guy that I’m talking about, spent so much time in jail that I went to see the M.O.C. there, the Medical Operations Center, to Doctor Johansen that was there back in the early forties, and I could check him out and take him fishing two or three hours a day and then bring him back. We had an understanding that if he ran off from me, he wasn’t crippled but I would cripple him, so we got along fine.
Ella: What about the nuns? How many nuns were there?
Tom: I think the maximum was eleven, I think. That’s a number that I remember. There were some nice ones and then were some that weren’t very nice, some that weren’t very nice to each other. But some that were fantastic people. They were professional. One thing you must say about them they never dumped an obligation. If you had something coming at two thirty, at two thirty you would get it. Never dumped that. So that was a big plus to those that needed whatever they needed in the way of treatment. Yeah, very dedicated people, my hat goes off to them. But I hated some of them; some of them needed squashing bad. But I guess they had good intentions, but for the most part, fine people.
Ella: I met one of the Daughters of Charity there at Carville, and she thought I write detective stories but I don’t… [Laughs.] She likes detective stories.
Tom: [Laughs.] I wonder who that was, not Sister Francis De Sales? Did you go to the museum?
Ella: Yeah.
Tom: Well, if the museum, would only be two sisters, Sister Francis De Sales from Wisconsin, and there was another one….
Ella: Well, we went around the corridors and we met her, she was taking lunch somewhere.
Tom: She was taking what?
Ella: The lunch to somebody.
Tom: Oh, lunch!
Ella: But I think her name was Francis.
Tom: No, Francis would not do that. The one that would do that was a thin nun. Her name was Sister Dorothy Bachelor. And there’s one other nun that goes there a lot, the one from New Orleans, the Italian, I can’t think of her name. She would take lunch there. There’s a nun there that’s sick right now. All of a sudden they discovered she didn’t feel good that day, and she’s one of these people that are always going, always going. And she didn’t feel good, and they did a blood test on her, and they panicked: her blood count was bonkers. They discovered that afternoon that she had blood cancer, leukemia. She had the bad one. And they really gave her only three weeks to live, and they gave her one of the new treatments. They said, “Well, if she can handle this medication, eighty percent that handle it will live for a year, but twenty percent would go beyond that.” So they think now that she’ll go beyond that, whatever she’s been taking has been dramatic. And the power of the Lord.
Ella: So my understanding is that you were married before going to Carville, no? Or, if you don’t feel comfortable talking about being married while you were suffering...
Tom: I told her, this is what I told her, “Being married to you is so good that I wonder what it would be like if I had three wives.” And she says, “Well, if they would do the ironing and the cooking it’d be alright.” [General laughter.] I didn’t answer your question I think; you might have to rephrase it.
Ella: Well, how should I rephrase it? Were you married before being diagnosed with the disease?
Tom: No, I’m not.
Ella: You’re not married at all?!
Tom: Look, we are married. We’re legally married, yes, yes, okay. We are, aren’t we? [Laughs.]
Tom’s Wife: Yes.
Ella: You read in those books how the family abandons the loved one.
Tom: Right, right. She didn’t abandon me. When I came there like I told you I was very healthy and strong, and I became very involved in the American Legion Organization and I belong to that and two or three others. One of the great helps to the patients was the American Legion and in particular the American Legion post in Baton Rouge. Post 137, and we had a post here but it couldn’t support anything, it had no money, so some wonderful people from Baton Rouge would come and they’d bring food and they’d bring drinks, Fourth of July, not Fourth of July but other holidays, they would bring spirits, Schnapps, a big bowl full of some concoction. They would even hire a band, they would have dancers and help patients in any way they could. Some of them would even,--when a patient wanted to run away he couldn’t go out through the front, they wouldn’t let him do it,--but he might have to go somewhere and it was important, or he just was tired of being there and the only way to go was to run away. Well, some of these people if they were approached, they’d say, “Okay, tell me when,” and on that evening, they would do just like the taxi cab and you would have your luggage and get on; they would take you to the bus station or to the train and you’d go where you were going. So they did that and, some of those people that did that was her sister, and her sister’s sister-in-law, and they were very involved in that, and her sister’s husband. And she would help and come with them and bring all this stuff, and I told her I wasn’t a patient, I was a staffer, [Wife laughs.] and I was very wealthy and very amorous. And all of this sounded good to her, so we got married. And I was a liar for at least three of those things. At least three I lied about. So we got married in…
Mr. Eugene: Where?
Tom: You know where we got married? In Mississippi. And you know what? We didn’t know there were no blood tests in Mississippi at that time. But yet if they took a blood test and I was positive, the test wouldn’t tell them that. The test would say positive to something, and what they would say right away? Syphilis. So anyhow, we got married, and she’s been calling me a liar since. I had a good time, we’ve been married for almost fifty two years. And I had a good time for the most part. She’s had a hard time when I was so sick. I was a son of a bitch, that’s what they say in Sophia or somewhere.
Ella: Bucharest.
Tom: Bucharest! [Laughs.] Okay.
Ella: Why do you mix it up with Bulgaria?
Tom: [Laughs.] Yeah. [Clock chimes.] I had a good time and even now as fowled up as I am, even mentally and physically… I can’t tell you enough, and not because he is here, but I have some wonderful neighbors. I have friends among the neighbors that don’t even like each other, but they like me. This man that lived here, yeah, this man that lived here, nobody liked him for some reason. But he became a friend of mine, just unbelievable.
Mr. Eugene: Do you know his nickname?
Tom: No.
Mr. Eugene: Scungilli.
Tom: But the man died. He had cancer of the lung, and I'm very proud that when he was on his death bed for a few months, and if I didn’t go there he would call me on the phone and tell me, “Hey, you haven’t been here today.” So I hope that I lightened the load on his trip.
Mr. Eugene: You’d tell him a joke or two.
Tom: Yes, I’d tell him a lot of jokes, and people want to know where you get these jokes. Women tell me these dirty jokes. [Laughs.] They’re terrible. And I just listen and repeat them; I figured they’re not bad if a woman told me that dirty joke! [Laughs.] But the nuns don’t listen to me. They go the other way, they say, “There’s a dirty little man.” They go the other way. No, I tell a joke or two.
Ask me some more. I mean you got…
Ella: I fear that you don’t realize now that this is tiresome for you. It happens to me that as the interviewee talk, they don’t realize how tired they are. But when I leave the room they realize how tired they are and they are upset on me.
Tom: No, you shouldn’t fear that with me. No, if I was tired of you I’d tell you to hit the road. I’d walk you out there. Oh, no, no, I have no problem with that. No, I’m fine and if you have some more to ask.
Ella: Well, I have a few only also my son is at Mr. Eugene’s house.
Tom: Alright.
Ella: But I’d like to be back, on Monday I plan to come back next Monday if you are in town.
Tom: Okay, you may, you may, and I should be here.
[End of tape.]

 

Well, here you have it: If you’d like to throw a bit of money my way to keep my endeavors going, and also enable me to spread the money to my various causes, witnessing democracy, freedom of speech and faith, and engineering social change thru art being one of them, I’d be grateful.

New York,
August 9th, 2013