Taming the wolf: an interview with Barbara Cleaver


Taming the wolf: an interview with Barbara Cleaver

Barbara Cleaver was diagnosed by a physician she can't remember. But she remembers what he called her disease: lupus. The word derives from Latin, and it means "wolf". Lupus patients in the full swing of symptoms can have trouble remembering things because they may be experiencing life as though through a veil, indistinctly, even indirectly, like an inexperienced moviegoer lost in the midst of a foreign film fest. For the lupus patient in search of a first diagnosis, medical characters come and go as frequently as lupus fevers, specialists dressed alike in clinical whites, speaking in a strange tongue, and disappearing from the screen as well as from memory. Lupus, systemic lupus erythematosus (SLE) is a disease with no clearly pathogenic agent, sort of like AIDS. It isn't caused by an infectious agent (remember, positive HIV tests do not diagnose AIDS in the absence of symptoms), SLE isn't even something really visible until its damages show on the skin. SLE is a grab bag of symptoms and signs, eleven to be precise. Any four will earn the label. It is theoretically possible for three SLE patients sitting in the same room to have almost completely different pathologies; only two of the three patients need to share even one of eleven diagnostic criteria.

Lupus can make life miserable. It can shorten life. In a few cases, it will be so aggressive that it becomes what little life is left, replacing everything else with its symptoms. If one is unfortunate enough to speak with the wrong people, know-it-all types who orchestrate support groups with "lupus" in the title, one can be misinformed and become anxious, desperate, because they say "lupus never goes away. You will always have lupus. You will never be well. You must learn to live with it."

But, it is not necessary to live with lupus, at least not with its symptoms. For practical purposes, and frequently without immune suppressing medications, it is possible to greatly reduce, or even completely eliminate most or all of the symptoms of the disease, even when it has become rather entrenched in an advanced stage. This can be done through dietotherapy, a clinical therapeutic application of the combined sciences of dietetics and nutrition. Only when nutritional control has been achieved is it possible to prevent recurrence of symptoms. Methotrexate, indomethacin, and prednisone will never bring about the physiological stability needed to obviate their continued use. The nutritionally uncontrolled patient will always require more and more drugs. And these drugs, which can be lifesaving, can also cause irreparable damage over time, and can, indeed, shorten life and diminish its quality.

lt has been many years since a sick and miserable Barbara Cleaver admitted herself to the old Hospital La Gloria, now Centro Hospitalario Internacional del Pacifico, S.A. (CHIPSA). She was treated by physicians prescribing the Gerson diet therapy. She is no longer a lupus patient. She is a practicing and productive artist. I called her as part of the Gerson Institute's follow-up program, and decided that hers was an interesting and important story, and that her views are important as one who has wrestled and tamed the wolf. I asked her for an interview.

- Gar Hildenbrand

September 26, 1992

Hildenbrand: Did you have any luck locating any of your early medical records?

Barbara: Not yet. I found one of the boxes where I thought it might be, but all it had in it was all this stuff from the Lupus Lifeline.

Hildenbrand: Well, it sounds like you're getting close. We'll just trust the process. One of these times, you'll uncover a clue that will lead us to one of the treatment centers. From there, retracing gets really easy. I've retrospectively cataloged a whole bunch of cases, and it's a pain in the neck.

Barbara: I'm a little annoyed at myself for not having it, but what I realized was that I didn't value any of it. I would look at it for my own information and kind of toss it to one side, because I didn't value it.

Hildenbrand: Barbara, I was the same way. I don't even remember the name of the doctor who first told me I had lupus.

Barbara: That makes me feel better.

Hildenbrand: I remember what he looked like, but I don't remember where it was. I know it was in St. Paul somewhere. I don't even remember how I made the contact.

Barbara: (laughs) Well, I don't feel so bad now. That's the way I am. Robin and I were talking last night. People call me who hear about this. I remember a woman calling me a year ago. She was real sick with lupus. She just wouldn't do (the diet therapy). She just wouldn't do it. I heard about her recently, and she is totally on cortisone and sick. It's so distressing. It's so frustrating to know that you have a key in your hands that can help them, and then the people won't do it. They just want to put themselves in the hands of the doctors and forget about it. They don't want to do anything themselves.

Hildenbrand: You're productive and healthy now, but all of us have our down moments. To a lupus patient, the first low level symptoms spell an incoming invasion, an unavoidable attack. Early symptoms signal the arrival of more serious symptoms, a downward spiral. One keeps getting sicker and sicker. Then it's on to steroids and nonsteroidal anti-inflammatory drugs (NSAIDs). But to me, now many years after I learned the dietary management, vague early symptoms that used to warn me "All hell's gonna break loose," those same symptoms, are markers that tell me to get my act together.

Barbara: As I told you, I have episodes when I don't feel as well, when I've been eating really badly, and when I'm under a lot of stress. I consider that I have to take care of myself. I would love to go back on the modified therapy for a few months just because I think its good for you, and I happen to love the food.

Hildenbrand: Me too.

Barbara: It's just hard to enact the discipline in order to do it. But most of the time, I have a very outgoing personality, I'm out there in the world. Even when I was sick -- so sick -- nobody ever knew it. I was really, really in the closet about it, because when I looked real bad I wouldn't go out.

Hildenbrand: You were very adept at hiding the signs?

Barbara: When I was real sick and it was really obvious, I just wouldn't go out. I couldn't and I wouldn't. I was just really into keeping it in the closet. I have such a sympathy for AIDS patients, such an incredible and deep sympathy for them, because I know how people are capable of acting when you are ill. They don't want any part of it. So when I came to New Mexico, I decided I just wouldn't be sick as far as anyone was concerned, that they wouldn't know about it. Now some people do, people I've met who were ill themselves, or who became really close. But in the main, I've really kept it in the closet. People who find out are just flabbergasted, because -- you know how it is with lupus, you can be sick and still look alright -- but when I looked really bad, I just didn't go out.

Hildenbrand: Did you have the usual butterfly rash across the bridge of the nose?

Barbara: No, I didn't, but I definitely had skin stuff.

Hildenbrand: Skin stuff?

Barbara: Sores.

Hildenbrand: Tell me about them.

Barbara: I would get them in my hairline and on my face. Some of the first symptoms were skin stuff. After my last child was born, I had an incredible rash all over my hands. I didn't do anything about it; I just lived with it, itching and burning. It was one of the first visible symptoms, looking back, and it was really obvious between my thumbs and my forefingers and all over the tops of my hands, very angry, very red. Then I got sores in my nose, when I came to New Mexico, very painful. Then they started coming in around my hairline. Those were really visible things. When I was so sick, I had a lot of hair loss. One of the doctors, who in fact thought that I did have lupus, said, "You don't have to have a positive ANA (antinuclear antibody titer)," and so on...

Hildenbrand: That's right, SLE is a list of diagnostic criteria. You get four out of eleven, and you've got it.

Barbara: Yes, and I had almost eleven out of eleven, and plus the positive ANA and incredible sed rate, all that stuff. He was also really annoying. I remember him saying, "If you're not losing it in patches, then it's not really lupus hair loss." Well, it was coming out in handfuls after a while, not in patches, but in handfuls all over. So everyone responds a little bit differently. I never got the butterfly rash. I never reacted badly to sunlight, thank God. But boy, I still feel it if I swim in chlorinated pools. It's like poison. I really feel it.

Hildenbrand: Does it get your eyes too.

Barbara: Not so much, it was joints. If I go into the pool my joints really start to burn.

Hildenbrand: Nine out of ten lupus patients have joint symptoms. I'm curious, let me backtrack to the rash that you had. I wonder if there a noticeable characteristic to the rash? Did you have those tiny little blisters, little vesicles, underneath it?

Barbara: Yes.

Hildenbrand: And they'd pop up...

Barbara: Filled with fluid.

Hildenbrand: Filled with fluid, that's right. Nasty little things aren't they?

Barbara: Nasty.

Hildenbrand: I used to have those over probably 80% of the flesh of my hands; both hands.

Barbara: My God!

Hildenbrand: I hated it.

Barbara: Before that big rash, I'd get individual ones on my fingers.

Hildenbrand: You bet.

Barbara: Very rarely, but once in awhile, I would get a mass of them, the same thing, but a mass of them on both hands.

Hildenbrand: Did you ever discover sticking them under water that was a little bit too hot, to try to relieve the itching? Did you ever get into that?

Barbara: No.

Hildenbrand: That was a near orgasmic sensation in terms of the edge of pain and ecstasy, to stop the itching.

Barbara: (laughs) Like poison oak. You know in retrospect I'm so surprised I didn't go have someone look at it, because in my heart I knew that this was not a good thing -- it was not right. I was so busy, I had a baby to deal with. I really don't have a lot of faith -- I just don't like to go to the doctors for anything. I mean, I had a jillion symptoms if I ever sat down to catalog them all. When I think about them, I am kind of surprised, when I remember how many individual things there have been.

Hildenbrand: How about ulcers in the mouth and down the throat? Did you ever get those?

Barbara: Down the throat no, but in the mouth and in the nose, yes.

Hildenbrand: And surely, it was the joint swelling, the arthritic joint swelling.

Barbara: The first doctor, who didn't get a positive test, was a young immunologist at Stanford University. When I was first organically sick, I went to him. He was really intuitive. He went out of the room -- he was pretty upset -- he came back and said it's one of three things: you have a virus, or you have lupus, or you have rheumatoid arthritis. I had never heard of lupus at that point. I had been reading about rheumatoid arthritis, and that's what I thought it was. But I think he knew in his heart that it was lupus, and he was really reluctant to -- you know -- he was courageous to tell me that on just his intuition. But he was unhappy and uncomfortable with it. I was having burning in my lower forearms, like they were on fire, like I was holding them over an open flame. And dizziness. I thought, looking back, that it was a very intuitive judgment on his part. Immunology is still pretty much a baby field, and he was a young doctor. He hit the nail on the head the first time.

Hildenbrand: I think good clinicians, good clinical observers, will have a tendency to know lupus because of how people with lupus feel, beyond the symptoms. There's sort of a way that people with lupus tend to be, especially when it's out of control and they're seeking help. That's really a subjective thing to say, but that's my experience.

Barbara: You're right. A good sensitive clinician will. I mean, I was describing to him that my arms felt sick, besides hurting they felt sick, like sick entities. I think that was the tipoff for him, that besides joint pain and hurting, they were wrong, they felt ill. But the funny thing was that after this it took so long to get a diagnosis. He left and those tests were negative, and it took so long to get that diagnosis. Hopefully there is more sensitivity now. I haven't had the experience some friends have had, of going to the doctor and having him say, "It's all in your head." That has actually happened to people I know who are physically ill. It's most distressing. Fortunately, I've never had to deal with that. I wouldn't have given a physician like that much credence anyway, because I'm pretty independent. I think that characterizes people who seek alternative therapies, they may be a little more independent.

Hildenbrand: There's no doubt about that. Did you ever have any heart problems?

Barbara: I would have pain in the breast right over my heart, and rapid heart beat, and general pain in that region. Perhaps I should sit down and catalog all the different symptoms sometime. I did a lot of reading to identify things that were happening. It was very interesting, in that I wouldn't experience symptoms after I would read about them, I would look for them and find them in the literature about lupus. I found almost everything that I experienced, not all in one article, but one in one source and one in another. I identified most of them.

Hildenbrand: The pain in the chest could have been another one of the diagnostic criteria, which is serositis, inflammation in the serous membrane, which in this case would be the pericardium, the sack around the heart. Quite a few lupus patients get to go through that one, along with all the other symptoms.

Barbara: The only one I know that was not ever one of mine was the butterfly rash. But most, many, I don't remember what they are now...

Hildenbrand: Well, now, you only have to have four out of eleven to have lupus.

Barbara: (laughs) Easy. That's easy.

Hildenbrand: (laughs) Yep, because you had discoid rash, you had arthritis, you had the oral ulcers, you had the blood panels that were outside of normal limits, the sedimentation rate...

Barbara: Right, and hair loss, and the positive ANA which I have to find the documentation for. I think I told you last time we talked about the food allergy test, and I don't know if that's a common thing to run into with lupus patients, but it was a remarkable test result, to run food allergies and to be allergic to everything

Hildenbrand: Just everything.

Barbara: Two hundred foods, allergic to everything!

Hildenbrand: Wow! Which essentially suggests that was an extension of what was making your antinuclear antibody titer positive.

Barbara: Of course. It was an indication that something was wildly out of kilter.

Hildenbrand: You were probably reactive to every kind of protein, no matter the source.

Barbara: I've been a vegetarian for many years, and the test included every kind of meat which I hadn't eaten for many years.

Hildenbrand: Do you remember how old you were when the first symptoms showed up?

Barbara: The rash on my hands was at age 32. I had bumps on my hands before that, and sores in my nose before that, but as to really profound symptoms, that huge rash would probably be the first one.

Hildenbrand: Was this after a first child?

Barbara: Third child.

Hildenbrand: When did you start having babies?

Barbara: Early twenties.

Hildenbrand: Do you just have three now?

Barbara: Yes.

Hildenbrand: You stuck with that, that was enough.

Barbara: After this, are you kidding?

Hildenbrand: So after the third child. How old was the baby when the rash came, or did it come while you were pregnant?

Barbara: She was newborn.

Hildenbrand: Newborn, and you were hit with the rash as soon as you completed the term.

Barbara: She was a week old, or ten days old, something like that. Another thing that the doctor said, who commented about the hair loss, he said, "I have one piece of advise for you: don't have any more children, whatever you do." It was his clinical observation that it was a huge triggering factor. That makes a lot of sense to me. You know I think there's a viral factor, and a lot of hormonal stuff -- a lot of hormonal research that's yet to be done there.

Hildenbrand: Did you ever have a bad response to cold in your fingertips, if you would get your hands cold?

Barbara: No.

Hildenbrand: Never heard of Reynaud's syndrome?

Barbara: I've heard of it, but never had it.

Hildenbrand: Any inflammation in or around the eyes, or blurring vision? Any of that sort of thing?

Barbara: Yes. It seemed to go with dizziness too.

Hildenbrand: What about cotton wool spots in the retina?

Barbara: No.

Hildenbrand: Any bronchial pneumonia or anything of that type of lung involvement that you recall?

Barbara: I don't think so.

Hildenbrand: That's good. Abdominal pain? You mentioned ovarian pain.

Barbara: Yes, there was some of that. It's hard for me to remember everything, but yes, I believe so.

Hildenbrand: How about the neurologic side of things? Depression, psychosis?

Barbara: Definitely depression. (laughs) Depression is definitely a part of lupus. The only other neurological stuff was the dizziness, and that would come and go during real bad flares. But, other than that, no.

Hildenbrand: That's fortunate, that can be really difficult. Christeene had psychotic reactions with it, and that was quite disturbing.

Barbara: Yeah, I can imagine. That's always a worry. When one researches this disease, there's always a worry that might be in the wings. Mine was a lot of physical changes, and the skin involvement is very distressing, because its very visible.

Hildenbrand: Isn't that depressing, to have someone say "Eeyooo, what's that?" (laughs) You know? It's really discouraging.

Barbara: (laughs) And to not have a ready answer: "Well, if you really want to know..."

Hildenbrand: Tell me, how many physicians do you think you saw? How long was the path to diagnosis?

Barbara: Well, as I told you, the very first guy I saw, who was just kind of in a visiting position in our family facility, he put his finger on it right away. Then we discarded that. He left, and the tests were negative. One doctor there, two, three, four, at least four, actually looking for diagnosis. And, when we were living in Guadalajara, after I had the rash on my hands, I was getting a rash on the outside of my nose, sores. I went to a dermatologist in Guadalajara, which was hilarious. He said, "change your shampoo." (laughs)

Hildenbrand: Change your shampoo. That was it?

Barbara: That was it. I came home and said, "Well, my opinion of doctors is constantly being diminished."

Hildenbrand: Change your shampoo.

Barbara: So there were at least four doctors before we got a firm diagnosis. I was seeing this woman physician, and we were trying to figure out what it was. Was it candida? You know how some of the symptoms of candida can be confused with those of lupus. And the woman -- this is where I might be able to get her name, the woman that actually had the paperwork -- she was a candida specialist. I went to see her, and she put me on whatever they put them on then, which I have forgotten. She asked me, "Well, how did it make you feel?" And I said, "Maybe I feel a little better." And she said, "Better? Better?! You're supposed to feel much worse if it's candida and its affecting you."

Hildenbrand: That must have been mycostatin or ketoconazole; one of those.

Barbara: She said, "I don't think that's what you have." And then the food test results came back, and the candida woman said, "Let's just run these SLE tests. Lets just do it." Nobody wanted to believe that's what it was. I was becoming convinced. That's when we ran the tests and they came back positive. That's when I dropped out of that picture entirely.

Hildenbrand: Were you ever treated with prednisone?

Barbara: Never. Dr. Green, I believe that was her name, was telling me about a lupus patient of hers who was on prednisone, and how well she was doing, and I didn't want any part of that. I didn't want a quick fix. I couldn't believe she was telling me this. I couldn't believe she was doing that, because I'd been reading about the corticosteroids and I knew it was just a quick fix. That's when I dropped out of that picture entirely.

Hildenbrand: How did you find your way from that to alternative medicine. Yours was a very conventional diagnostic trajectory; you went from one physician to another, you finally ended up with a physician I would consider a fairly unconventional practitioner, for the time, someone who was a candida practitioner before general acceptance of candidiasis as a kind of serum sickness. Still, she offered you pretty straightforward management in the mycostatin, so this was not a fringe physician, but somebody at the cutting edge of conventional medicine. How in the world did you get out of that and into the world of alternatives and find Gerson?

Barbara: Because, number one, I had been vegetarian and was in the alternative health world anyway. We owned half interest in a health food store in Palo Alto at that time.

Hildenbrand: Had you worked in the health food store at all?

Barbara: No, but I was in it every day. Being a long time vegetarian, when I was a teenage surfer in California, I was macrobiotic. So I went to macrobiotics first. In fact, I went all the way to Michio Kushi's house. I went through all the macrobiotic literature because it is a therapy that, I believe, has positive value. I couldn't find anything, even anecdotal, about what l had, nothing. I searched, and I looked in all the books, and finally I called Michio Kushi's house. What they had to say to me was, "We have nothing. We have nothing, that would say that what we do is effective with what you have."

Hildenbrand: That's interesting because I think that modern laboratory literature actually would support the macrobiotic approach as a potentially meaningful management for lupus with, maybe, a few moderate changes.

Barbara: When we first moved to Santa Fe, I put myself on the macrobiotic diet, and I started to feel much worse.

Hildenbrand: Interesting.

Barbara: I believe, looking back on it, that it had to do with the amount of salt.

Hildenbrand: The amount of salt and, probably, the amount of grain, because those materials are the areas that I think would require modification. Maybe its just the overall diminution of protein and calorie load that seems appealing to me in macrobiotics, but if they don't have a track record with lupus, it may be the specific avoidance of fruits, and the cooking of most vegetable materials, that holds it back from helping lupus.

Barbara: Well, I still believe in it as a therapy for some problems...

Hildenbrand: Me too. In fact, I just saw a physician on the Dan Rather show, Martha Cotrell, who was on my work group at NIH (Editor's note: Mr. Hildenbrand chairs the Diet/Nutrition/Lifestyle Working Group currently in the Office of Alternative Medicine of the National Institutes of Health.), and I'm very impressed with her, with her sincerity and her attention to detail.

Barbara: There's no question about it. They've done a lot of good record keeping, and I believe in what they're doing. But when I started feeling worse, I actually got the Kushi's on the phone, and they said, "No." They were wonderful. They were absolutely wonderful. They just said, "We can't say yes." So, the way I came to Gerson -- I had never heard of it -- I met someone at Puerto Escondido who was doing a modified Gerson therapy for a fibroid tumor. And I was talking to her about it and, you know the way that the universe works sometimes, she gave me the book which I stole. I didn't return it.

Hildenbrand: (laughs) I've lost a few copies that way myself.

Barbara: I have to be intellectually convinced first. Because, I had people telling me this and that, and they simply didn't convince me. I had to understand it, and believe that it would work. When I read Dr. Gerson's book, this thing made sense to me. I could see how this could work. I started calling. I called the Gerson Institute, and talked to you. You had good things to say. You were the only people who put me in touch with other people who had positive results. I was just impressed with the whole thing. So, when I started getting the supplemental literature I was sure. And you were great as a contact person -- I'm sure you don't remember but -- I'd call you when I was in the slough of despond. The fact that you, yourself, had the same malady was of inestimable value.

Hildenbrand: I'm sure that is true.

Barbara: And when I went to the hospital, it was fascinating. You could almost see who was going to going to be successful and who wasn't, in terms of how they reacted to it, how they viewed the therapy and the food. I just felt I could look around me and see who was going to make a go of it and who wasn't. I really felt that I could have made it work without going there, but I wanted to learn it correctly. So that was really useful. And I saw how many people came in absolutely at death's door. I felt that was such a shame. If they'd gone there first, the success rate would have been a great deal higher than it is.

Hildenbrand: I certainly agree with that thinking. It is pretty awful sometimes, when you get people in and you can only wonder who that was when they were healthy, because you just can't see it. There's so much distortion of the individual by the disease process.

Barbara: That's right. And all the despair, all the things you work through. I firmly believe that.

Hildenbrand: You and I talked earlier about an acquaintance of yours who stopped diet therapy even though she had responded well.

Barbara: She was classic, she responded even more clearly than I did. Right out of the book. She wasn't able to keep with it. It was emotionally too much for her to be confined to the home as much as you have to be. She couldn't do it. She's still a very sick person, although our phone conversations over the last years have been wonderful for both of us. We both understand a lot of spiritual benefits of all this. It makes me sad to see that she could be so much better now if she could stick with it. Some people just simply can't do it.

Hildenbrand: That's right. Some people are just simply not able to be compliant. That's something that Frank Wiewel and l talk about all the time. Frank is a brilliant lobbyist. He's a musician and an activist. He used to be with Columbia Artists, and is now dedicated to the war against cancer. He runs People Against Cancer, which is my political action network. We talk about the Gerson Therapy, and about how there are people who will never be able to do it. There will always be a portion of the population that can do it without blinking, and there will be people for whom it will never be an answer, because -- I don't know whether it's compliance or motivation, maybe those are two sides of the same coin -- they can neither be compliant to the physician nor can they be self-motivated to do it.

Barbara: When I went to see Charlotte (Gerson), who was doing a workshop here in Santa Fe, Norman (Fritz) spotted me buying a book and dragged me up to the podium to speak. I was totally unprepared for this, but Charlotte just told me to talk about my experiences. Afterwards, a couple of people came up to me who practice naturopathy in Santa Fe, and they didn't get it. They didn't understand, and this is what I run into all the time, they wanted to take elements of the therapy. People will say, "I want to take juices," or they'll do some enemas, but they aren't clear that they have to do all of it at once to make it work. And these naturopaths were maddening. I mean, that point had been made and reiterated throughout that portion of the day, and they just discarded it! They thought they could take elements of the therapy, combine them with what they were already doing, and make it work.

Hildenbrand: To help folks understand the importance of the complete set of integrated treatments, my favorite metaphor is the internal combustion engine. Most of us have at least some appreciation of the automobile engine, if it's running nicely, of course. And most people will laugh when I ask them, "This is so complicated, can we take just the pistons and the connecting rods and use those instead? Or, how about just the carburetor?"

Barbara: (laughs) That's a very good analogy.

Hildenbrand: The therapeutic system, for me, was a sort of a conversion factor. It was a discipline that was so nearly all encompassing, it allowed for some personal growth. I don't know quite how to say it. My wife, Chrissy, is always saying that every time you drink one of those pure juices, you're saying to your body, "I love you, stick around, let's get well," and every time you take a coffee enema into your colon to speed up your liver's detox mechanism, you're saying, "I want to cleanse from myself all that is negative, all that is damaging."

Barbara: Exactly.

Hildenbrand: These are powerful symbols. So, in addition to actually medicating yourself, every time you drink a juice and every time you take a coffee enema, you are repeating a ritual of psychosocial and deep personal significance.

Barbara: That's what I saw at the hospital. There were people who were accepting this as a blessing and embarking on a new adventure, and there were those people who were dreading and cursing it. There was that exact connection, "Bless this food that's going to make me well, I accept it joyfully." It's such a different way of approaching it.

Hildenbrand: What was it like for you to contact the Gerson Institute? Did you do it through a book, or a flyer? How did you get in touch with us?

Barbara: Through the book.

Hildenbrand: Who did you get on the phone?

Barbara: It might have been a woman who worked there, I don't really remember, but I ended up talking to you pretty soon because of the nature of the illness.

Hildenbrand: They used to just toss all the SLE cases to me. Now they have a choice of me or Chrissy to toss the SLE cases to. I'm glad I was there and able to talk to you. When I did the management, I didn't have any other people with SLE to talk to.

Barbara: I think you gave me the number of a nurse in Minnesota who was a successful case.

Hildenbrand: That was probably the case. There was the sense, at that time, that the Gerson diet therapy could be quite helpful in the rheumatoid diseases, but now we have a really strong impression of that because the people who responded to our follow-up questionnaire mailer for the first 10 years of clinic, who fell in the rheumatoid category, were almost all responders. Almost all of them found that they were able to stay with it, and they experienced anywhere from satisfactory to extraordinary improvements. I can say now that I feel this management can be used effectively in many cases of SLE.

Barbara: Fantastic. Beata Bishop's book was a wonderful thing, too, because it is so beautifully written, to hand to people. I keep copies of it on hand to give to people a quick and easy explanation, especially for somebody who doesn't want to dive into Dr. Gerson's book.

Hildenbrand: Right. Compared to Dr. Gerson's monograph, it is much more literary, a very good read, and less intimidating.

Barbara: Right.

Hildenbrand: What was your experience at the Gerson hospital?

Barbara: I remember that I looked good at that point. I looked fine. It was a little intimidating. But, at the same time, I was glad to have a chance to learn how to do it. As sick as I was, I felt a lot less sick because of the people I encountered there. There was a young English couple there, and she was so sick that I doubt that she survived. I tried to encourage them to stay with it. She was bedridden and I would go and talk to her. She was so sick at that point that she was rejecting everything. What I tried to do was take advantage of the fact that I felt a little bit better than some of the folks there. I really believed in it. I had totally committed myself at that point, and I felt that, maybe, I could be of use to some of the other people who were having a harder time of it.

Hildenbrand: You checked in in September, it looks like, of 1986. I'm looking at your chart here. And the nursing notes range through September. Nice photograph. Most people don't have an ingression photograph that looks that nice.

Barbara: (laughs) When I was up and around, I was not so bad. I just felt fortunate that I was well enough to get myself down there and get myself back, and I could do it, because there were times when it was difficult to get out of bed. You know, you remember, there were mornings when you'd wake up and think, "My God, I'm going to die today," because that's how sick you are. I really would wake up in the morning and wonder if I was going to get though that day. I was really, really, really sick.

Hildenbrand: What were castor oil days like for you?

Barbara: Not something that I looked forward to. And I have to say, I did not continue that all the way through. I found it really quite repugnant. It was real hard to deal with, so I probably only continued that for 6 months.

Hildenbrand: I hate castor oil.

Barbara: Oh, God!

Hildenbrand: Just hate it. The smell of it still gets me.

Barbara: I don't even like carrot juice very much, to tell you the truth. (laughs)

Hildenbrand: Is that right?

Barbara: Yes, because, you know, there was just so much for so long.

Hildenbrand: How about the green juice? How did you do with that?

Barbara: Just awful. The worst thing for me was the liver.

Hildenbrand: The liver, right.

Barbara: Because we don't eat meat, fish or eggs.

Hildenbrand: Right. So this was a real moral dilemma for you wasn't it?

Barbara: It was terrible. Truly, truly terrible. All my children are vegetarians from birth. Terrible. That was the worst thing about it. It was a terrible moral dilemma, and I doubt that I ever would have done it.

Hildenbrand: Is Robin?

Barbara: Yes. Yes, we're all strict vegetarians.

Hildenbrand: Yes, I was vegetarian before I started the management too. I had a family member who was a vegetarian, who walked in the back door while I was doing a liver juice, saw the liver, turned around, walked out, and I didn't see her again for another year and a half. It did get kinda tough. Gerson himself was the darling of the vegetarian set for a short time, but boy, when he went to that liver juice for the cancer management, they became unhappy with him.

Barbara: When I got the updated book and it said that, because of the problems with the liver, it had been discontinued, I was kind of heartbroken. (laughs) I wished that I hadn't had to do it. But I have to say, I think it made a difference.

Hildenbrand: That is my impression, too. I think, as awful as it was, that material was very, very helpful.

Barbara: Yes, I could feel it. But, I would be real reluctant to do it again. I would just try to do it without. You can't imagine -- well, I guess you can imagine because you were vegetarian -- the depth of the moral dilemma was really profound.

Hildenbrand: Yep, it really was. All I could see to do was to give thanks for these animals, and hope that their life poured into mine would generate some good in the world that would be justification for it.

Barbara: That's right. But all it would take would be to see calves gamboling in the field to bring tears to my eyes, I'll tell you.

Hildenbrand: Sure, absolutely. When you checked into the facility, do you remember what it was like to start on the management? Did you feel like you were being swept along by a tidal wave? Or was it...

Barbara: No. No. I was real clear on it. And speaking Spanish really helped. It was actually rather luxurious to be all by myself.

Hildenbrand: Oh, you went alone?

Barbara: I went alone.

Hildenbrand: Fascinating. And Robin kept the kids.

Barbara: Yes.

Hildenbrand: And you would have had, by this time what, a two year old baby?

Barbara: Yes, I think that's right.

Hildenbrand: The littlest one was two?

Barbara: Yes.

Hildenbrand: What are your kids' names?

Barbara: Zoe, Miles, and Bram.

Hildenbrand: Zoe, Z-O-E?

Barbara: Uh-huh.

Hildenbrand: Not after J.D. Salinger's character, hopefully?

Barbara: Actually, when I used to read that, I used to always think of it as Zooey, Frannie and Zooey, with a double "o". Of course, I was affected by Salinger, as we all were.

Hildenbrand: Yes. (laughs) Yes, indeed, one of my favorite stories, in fact.

Barbara: So, no, I don't think it was as overwhelming for me as it was for some. I'm kind of a loner anyway, so the idea of having a room to myself was fine. It was a little intimidating at first; I don't like organizations and doctors; but, I was real clear about why I was there, so it wasn't too intimidating.

Hildenbrand: It looks to me like you doodled quite a bit there. In your photograph here, there's a notebook open on the table in front of you, and it looks like you've been doodling there.

Barbara: Could be. Could be.

Hildenbrand: Did you do a little artwork while you were down there?

Barbara: No, not as much as usual. I kind of consciously didn't. I really wanted to empty my brain. I'm quite obsessive about it.

Hildenbrand: I understand.

Barbara: It's hard for me to do anything casually. I wanted to empty my mind. I read everything I could get my hands on, that was available at the hospital, on the therapy, and took notes, and went over the notes. I was kind of obsessed about that when I was there. I really wanted to take in as much as I could about getting it down right. And if I had brought along a sketch pad or water colors, I would have been obsessive about that. I was just very conscious, very directed. If I had started on something, then that's what I was doing.

Hildenbrand: So you did the Gerson Therapy while you were there.

Barbara: Exactly.

Hildenbrand: Was this in the Del Sol facility?

Barbara: The one by the beach.

Hildenbrand: That was Del Sol. What was the course of your stay? How did that go? How did you react? Did you have any experiences that you would consider to be extraordinary while you were there?

Barbara: I was affected by Charlotte. I thought she was a very strong personality. I was affected by the sincerity of everyone, and I liked listening to other people talk about it. There was a woman who had returned, who had a successful therapy, and she was back for something else...a rest cure, I think. I enjoyed Norman's lectures. I was affected by a young man with AIDS who showed up at the lectures, and he couldn't be admitted because of the possibility of contagion.

Hildenbrand: Yes, it was regional agency policy, and it still holds.

Barbara: He was pretty isolated by everyone, so I went and sat with him, and encouraged him to try to do it on his own. I thought it was well organized. I saw the need for repetition because some people would pay attention and take notes, and some people wouldn't. Also the state of a lot of the people necessitated repetition, because they were very debilitated. But, I thought it was pretty well organized. I loved the food. I like to eat simple anyway, so I thought it was great. You know, when you're there, you're pretty self-centered. You have to be, after all, that's why you're there.

Hildenbrand: That's the idea, to try to pull that locus of control, and the focus of attention, back into the self, where it belongs when you're sick.

Barbara: Right, and that's sort of what it's all about. Actually, I corresponded with the English couple for a while. Then, I didn't hear from them, so I think she may have died. But I didn't socialize very much. I kept to myself. I'd take literature to my room, go over my notes, and luxuriate in being alone.

Hildenbrand: What happened to your body?

Barbara: I really responded well while I was there. I felt a lot better.

Hildenbrand: That's what happened to me.

Barbara: I really did. I did not have a big healing reaction there at all.

Hildenbrand: Me either.

Barbara: I just felt a lot better.

Hildenbrand: Did you ever have a healing reaction?

Barbara: Yes.

Hildenbrand: You did? When? Was it months later?

Barbara: I was really not a case out of the books. As I told you, my friend who went on the juices, started reacting immediately, just exactly like the textbook. I never really did that.

Hildenbrand: Neither did I.

Barbara: No? That's interesting.

Hildenbrand: I never had the full body fever. I had local inflammations at the sites of all the rashes. My fingers, for example, swelled up and became really red and inflamed, the whole finger, not just the area with the rash. Every finger became about one and one half times the normal diameter for a period of days and then began to slough off the skin.

Barbara: You had it real bad on your hands.

Hildenbrand: I had it real bad on my hands, and as they healed, my body would generate new layers of skin, one after the other, and slough off the older outer layers until the sores were gone and there was only healthy pink flesh.

Barbara: Very interesting.

Hildenbrand: At that point, it calmed down, and the inflammation went away. That was my big reaction. It wasn't systemic. It wasn't all through my body, even though my kidneys had been involved. I never felt bad. My urine turned a normal yellow; it had been clear before. My kidneys started to work normally, and filter normally. But I never had the big fever, the influenza symptoms. I was never flat on my back with it. Like you, I just felt better; I felt more strength, more energy, and more desire to be active.

Barbara: I started feeling it when I first went on it. I started with a Champion juicer, before I got a Norwalk. I started feeling better immediately.

Hildenbrand: This was before you went to the hospital even?

Barbara: Yes, before.

Hildenbrand: How long did you do that before you went down?

Barbara: Probably a couple of months.

Hildenbrand: Well, no wonder.

Barbara: I started, even with the Champion, even without everything I needed -- I was trying real hard to do it right -- I started feeling better. That was the big convincing factor to pay the money to go to the hospital, because we didn't have any kind of insurance. So, that was a big, big motivator for doing it right, the fact that I was responding, as opposed to the macrobiotic diet, which I started in good faith, and knowing a lot about it, and a strong belief in it, and I felt wretched; I felt worse.

Hildenbrand: Tell me about that. I want to know a little bit more in detail about that. Your first response, when you got the diagnosis of lupus, which would have been what, `84 or `85? About a year before we saw you?

Barbara: Yes, probably, yes.

Hildenbrand: About a year? Well, then, probably because you had been macrobiotic, you turned to it again. Did you consult anyone, or did you just do it?

Barbara: I just did it.

Hildenbrand: By yourself.

Barbara: I'm real "do it yourself."

Hildenbrand: What would you take, was this miso soup, and umeboshi salt plums?

Barbara: And grains and vegies, and I used the books as my guide.

Hildenbrand: Tamari, tahini, soy sauce? Those kinds of things?

Barbara: All that. Barley and rice and all those things. As I said, I'd done it before, and I knew pretty much what I was doing.

Hildenbrand: Now, when you'd done it before, it had been OK as a life style, right?

Barbara: Yeah. Well, it's real simple, I thought I was a real healthy teenager. And I just did it, because I was attracted to that kind of living anyway. And I started to feel worse almost immediately.

Hildenbrand: Almost immediately.

Barbara: I just did not respond. I started to lose weight, just felt bad, my hair started to fall out more, substantially more. It wasn't working, it was real clear, it was making me feel worse. I'm sure it was the salt. I'm very responsive to salt. It just seemed clear to me that it was this, probably along with everything else. It wasn't just the salt that did me damage. But, in contrast, when I started the Gerson, even the modified therapy, using the Champion, I started to feel better right away.

Hildenbrand: Just a comment on the side. We've got a gal in Canada, who cured herself of an apparent liver metastasized pancreatic cancer, adenocarcinoma, on the Champion juicer.

Barbara: That's fantastic.

Hildenbrand: Isn't that wonderful? You don't need the Norwalk without the liver juice.

Barbara: That's incredible.

Hildenbrand: I think what we're deciding now is that the big change is taking the raw juices in the first place, not the relative qualities of the juice, but the fact that you're making juice at all. As long as you're not destroying the juice as you make it, you're not cooking it, or chemically altering it, or contaminating it, and as long as you are drinking it raw and fresh, you're in good shape. There are a number of juicers, like the Juiceman, which have a bevel-sided, almost cone shaped, spinning strainer, that are effective. I've been asked many times whether the Juiceman isn't the centrifugal type of juicer Gerson warned against. Gerson wrote against centrifugal juicers, saying that they killed enzymes, but the Juiceman, and others machines like it, really aren't the kind of centrifugal juicer Gerson warned against. The ones Gerson was referring to are juicers which trap pulp, instead of ejecting it, like an old-fashioned Maytag spindryer washer that squeezed wet clothes through rollers, let the soapy water drain back into the to wash tub, and plopped the clothes into a spinner basket that predried them before you hung them out to dry. Gerson was pretty adamant about not using that type of nonejecting spinner. He figured that, if an uninterrupted field rapidly spinning around an axis would create a magneto effect, which is how we generate electricity, then a spinning wall of wet pulp, in which water was the conductor, could create an electron current that might damage some of the properties of the juices. But these other juicers, the Champion, the Juiceman and others that are like it, produce juice that will heal. According to our follow-up, they are getting people well. As a related point of interest, I've learned that Jay Kordach, the Juiceman himself, was a successful patient of Dr. Max Gerson in New York during the 1940s.

Barbara: Really? You know something? My husband's niece has an autoimmune disorder. It affects the intestine. I don't remember what it's called. She had called me and I referred her to the Gerson Institute. Her mother, my husband's sister-in-law was urgent, and it was my recommendation that she do this. She did call you all down there, from Oregon, and you told her a Champion was OK, and as far as I know she's still responding. I'll follow up on that.

Hildenbrand: I wonder if it was...

Barbara: Crohn's.

Hildenbrand: Crohn's disease.

Barbara: Uh-huh.

Hildenbrand: Which is an idiopathic inflammatory bowel disease affecting the colon.

Barbara: That's exactly what it is.

Hildenbrand: Isn't that fascinating? I think that there is so much to the juices themselves, they are powerful medicines.

Barbara: Absolutely!

Hildenbrand: It really is a shame that conventional medicine is hesitant to use them, they're so easy to make.

Barbara: You cannot discount the greed manipulating most of the medical and the pharmaceutical industry. I am firmly convinced that this whole push to outlaw herbs and vitamins is a result of the greed factor behind, especially, the pharmaceutical industry. There's not a lot of money to be made if this is, in fact, adopted by the medical establishment. Who will make the money? I know that is very cynical of me.

Hildenbrand: No. I understand where you're coming from. There are others who share your concerns. Senator Harkin recently put an amendment on the 1993 appropriations bill, which would give the Director of the National Institutes of Health the power to protect any therapy that was under consideration for evaluation. The intent was to protect them from the Food and Drug Administration and state and local agencies, and licensure review boards, boards of examiners. Would you believe that Bush's administration called the Senator and said that, unless he removed that amendment, they would veto the entire appropriations bill?

Barbara: That's why we have to get Al Gore in there.

Hildenbrand: You know, I agree, and I don't mind that at all. Berkley Bedell, with whom I work advising the NIH Office of Alternative Medicine, is a former Democratic representative from Iowa and a good friend of AI Gore. As far as I'm concerned, a Clinton/Gore White House will do well and good for the alternatives.

Barbara: I think that's true. When he put Gore on the ticket, that's when he got my vote.

Hildenbrand: You bet. Even though Tipper....

Barbara: Was scary, I have to admit.

Hildenbrand: She confused a number of us who are, or have been, in the business of utilizing words and images in art.

Barbara: Yeah, Tipper was kinda scarey.

Hildenbrand: Actually, what she ended up going for, after Zappa and other people testified, was sort of like a surgeon general's warning label on...

Barbara: I guess that's all right. I have teenagers, and some of the lyrics are pretty scandalous.

Hildenbrand: Aren't they raunchy? Some of them are just a little bit breathtaking.

Barbara: Pretty scandalous. I feel like I have to protect my young ones.

Hildenbrand: The reason that I think this is true -- Chrissy and I have talked about this -- is that kids, just like we did when we were younger and listening to the Sargent Pepper album, will put these things on and just play them over and over. Our kids do this, too; they put them on and just play them again, and again, and again; and there is a concern that this creates a sort of persuasive subliminal tapeloop in their minds somewhere.

Barbara: Well, it does. We know that. We've seen how violence and sex in the movies has really degenerated. I think the movie industry is in a pretty deplorable state, as far as creativity is concerned. They're relying on these formulas, producing disgusting formulaic things without real creativity. It's in the music industry too.

Hildenbrand: It certainly is. It just depresses me how much that is the case. I follow the work of a Detroit guitarist I met in passing at one point, his name is Ted Nugent, who used to be with a creative group called the Amboy Dukes. At one point in his career, he got bought up by, I think it was Warner Brothers, and he produced a string of absolutely slapped together, musically hit-and-miss, albums filled with raunchy lyrics. It was not a highwater mark for one of the world's most eccentrically talented guitar players. He broke that contract, or satisfied it, or whatever it took, and now he's with another very creative group, including fellows who have enviable standing in the industry. They do pretty much what they want. I thought, "gee, if you can get enough chips together in the entertainment industry you can take the bit in your teeth and do some things that are not driven by the market-based formulae". But if you are considered just a commodity performer, for whatever reason, you are literally mandated by your employers to include a certain amount of gratuitous sleeze in your work. Or, as in the case of certain superstars, you figure out that vulgarity sells well.

Barbara: And that's just the point that Tipper is making. It's a real fine line.

Hildenbrand: It sure is.

Barbara: I think one has to make a lot of those decisions for oneself. The dominate culture imposes so much of that. Because of our time in Mexico, we have spent time with people out in the villages, especially in Oaxaca which is still very much an Indian state, and we've really seen an alternative culture, alternate to what we experience, and see clearly some of the benefits of that. The American culture may be the dominant one in the world, but it is not necessarily the most desirable. One has to communicate to one's own family as best as one can, but it's a battle. You're all exposed to movies, television, MTV. I actually did see some creativity in music videos that I sat and watched with my teenagers. Some of it I loved, some of them I think are just fantastic. Too many of them depend not on creativity, but on the shock of the new. Don't tell me it's good, its just new.

Hildenbrand: New and shocking. That's right. Let me ask you some detail questions. How old are you now?

Barbara: Forty-two

Hildenbrand: When were you born?

Barbara: January 21, 1950.

Hildenbrand: I'm forty-two myself. We were born very close to each other. I was born February 15, 1950.

Barbara: Are you an Aquarius?

Hildenbrand: I sure am. Seven of my celestial bodies are in Aquarius.

Barbara: I have a bunch in there, too.

Hildenbrand: Do you know what that means?

Barbara: No.

Hildenbrand: Neither do I. Let me ask you another question on a sort of retrospective analytical note. You were a vegetarian, presumably alternate lifestyle type of person. Why'd you get sick? Do you have any idea what got you sick? Or did it come out of the blue?

Barbara: I've thought about that one a lot. I'm sure street drugs played a part in it.

Hildenbrand: When we're talking street drugs, what kind of street drugs?

Barbara: All of the above.

Hildenbrand: How old were you when you sort of tapered that pattern off

Barbara: Twenty one, twenty two. I stopped cold.

Hildenbrand: In the seventies, in the early seventies. You'd experimented with the typical LSD, mescaline, psilocybin.

Barbara: Right.

Hildenbrand: Probably some of the methamphetamines, a ton of pot and hash, right?

Barbara: Right.

Hildenbrand: Didn't all of us from that generation? Naturally, we've all given it up so long ago that it seems distant. Of course, we could do an unscientific assessment and say that here we have two people who developed lupus who shared a history of drug experimentation during their reckless youth. On the other hand, Christeene never had a recreational drug in her life, and she developed lupus before you or I ever puffed our first evil weed. She started prednisone at the age of thirteen and took it until she was thirty-three. Let's just say the street drugs were part of your experience when you were a teenager. By the time you were twenty-one, you'd quit them, and the lupus didn't show up until you were thirty-two, eleven years later. I'd almost tend to rule out the street drugs at this point. By the way, I don't consider myself a person with lupus anymore. I know that I have a tendency to develop symptoms if I don't practice a controlled lifestyle, if I don't live according to certain patterns.

Barbara: I think that they undermined things.

Hildenbrand: You think so?

Barbara: Yes. See, I have no family history of it. Nothing to indicate -- of course, that doesn't mean anything either. I think childbirth took its toll. Interestingly enough, I think that coffee might have had something to do with it, at least by exhausting the adrenals. I never drank coffee until about two years before, and I mean not ever. And then, I suddenly discovered this legal, permissible drug, and began drinking it by the gallon.

Hildenbrand: What about family history on your mother's and father's side? No diseases of any sort? No arthritis?

Barbara: No, nothing.

Hildenbrand: So, coffee, a couple of years before the lupus came.

Barbara: Abusing it as an extra energy factor.

Hildenbrand: How old are your kids now?

Barbara: One just turned 17. That's Miles. Bram is 15. Zoe is 9.

Hildenbrand: Oh, Zoe's the babe. Zoe's the little guy.

Barbara: Oh, and stress.

Hildenbrand: Excuse me?

Barbara: I think stress was a factor. You know how stress is the trigger.

Hildenbrand: Hey, that's my favorite word when we talk about causation of rheumatoid autoimmunity. That's my word: stress.

Barbara: That's the big trigger factor. I had the worst year of my entire life directly preceding getting sick.

Hildenbrand: OK. I think we've hit the mother lode. Tell me about that.

Barbara: It's hard to describe why it was so rough. We moved to Guadalajara. I'm not a city person and this was now a megacity. At that time, I did not speak one word of Spanish. I had a baby.

Hildenbrand: Why did you move there?

Barbara: Oh, it's a long story. I had a business also, another business that was taking me to Japan a lot. I was very involved in that. I was forced to give that up. It was just very, very, very stressful. It was an incredibly -- it was the worst year of my life, and it directly preceded getting sick. As far as a single trigger factor goes, that was it. In fact, I remember taking one of those stress indicator tests, and I checked off every item except for two out of thirty. It was quite hilarious.

Hildenbrand: Could you characterize it as being a year in which you lost some of your autonomy as a business person.

Barbara: Oh, everything. Absolutely. Total isolation.

Hildenbrand: You took a lot of hits.

Barbara: It was...it was...I mean, you want to talk stress factor, this was major.

Hildenbrand: Speaking in general terms, when we talk about stress, the keys, the big ticket items that are associated with the onset of certain illnesses, are loss of a job or business opportunity, which ranks right next to marital dissolution, which ranks right next to death of a family member or loved one. Did you have one out of three, or two out of three of those?

Barbara: One and a half. (laughs) I came close on one of those. Complete disassociation from friends and associates. Isolation. I spoke Japanese, but I had a real resistance to learning Spanish, which I now speak fluently, but I had a real resistance to it, so I didn't speak it. I ended up being alone with the children in the city, and I had to drive them to school everyday, and they all hated it. I was very serious about being a mother, and I poured a lot into it, emotionally. Because it was very hard on them, it was doubly hard on me.

Hildenbrand: So the kids were first and third grade at the time?

Barbara: Kindergarten and third, something like that, plus a new baby, and it was dreadful. The thing is, I love Mexico, but put me in a big city anywhere and I'm going to be miserable. Add to that the language isolation, add to that....oh, you know, so for a single trigger factor, there it is.

Hildenbrand: There it is. Boy, I'll tell you, I urge you, not to necessarily exonerate the street drugs and your personal behaviors of the past, but to see those as almost nonmitigating factors. If there is anything that is immunosuppresive, it is chronic corticosteroid secretion by the adrenal glands that results from our living in circumstances with which we are completely displeased. That's the worst. When a person feels helpless, hopeless, frustrated or angry, her blood sugar goes to hell. People get rashes and allergies and everything else, because their immune systems get suppressed like crazy by the adrenal and pituitary and hypothalamic changes those feelings cause. If you spend your time angry and frustrated, you change physically. You can see people who live with that kind of fury inside, they almost look like they've been taking prednisone, they get fat in the face. You can see the cardiac type.

Barbara: Wow.

Hildenbrand: And those people will accidentally complicate things by eating a lot of high cholesterol, high protein foods, probably in an effort to ground themselves, which contributes to hormone dysfunction and immune suppression, and they really get sick.

Barbara: You know, in retrospect, it's so evident and frustrating, to think that things could have been different. But, yes, that's probably one of the most valuable areas for research and education for the future.

Hildenbrand: I don't think there's any doubt about it. I looked at the fact that you were a vegetarian, and I thought, "Well, if she was a vegetarian, why did she get sick?" It's because good food doesn't do all of it. It doesn't protect us completely.

Barbara: Of course. Raging and tempestuous emotions have to be at least equal in value.

Hildenbrand: Gerson talked about that. Chrissy was just reading today from Gerson's Diaetherapie fuer Lungentuberkulose, his monograph of 1934. He said you've got to cover all the bases, and spoke about psychosocial intervention. At that time, those were new concepts.

Barbara: Boy, that was a pretty courageous thinking in those days.

Hildenbrand: I think so too. I think it was terrifically objective as well, for practical purposes, to trust the process, to act on the hunch that you could validate people, you could boost them, you could help them to feel more whole and more confident, and if you would do that long enough, if you could hold the positive patterning long enough, maybe people could begin to heal, even though you didn't do an analytical process. In fact, recent publications by Eysenck and Maticek suggest that people who become involved and stay long term in classic psychoanalysis are at higher risk for illness than those who drop out.

Barbara: Actually, I find that quite amusing, and so unsurprising.

Hildenbrand: If psychoanalysis causes people to concentrate on the negative, and yet offers no game plan for constructing a positive life, there will probably be a negative psychoneuroimmunological and endochrine outcome.

Barbara: Cruel of me to laugh, but one of the reasons I never personally sought therapy was that I knew if I could change things, I could make everything better, you know, make things work differently. I knew that my emotional pain was not the core of the problem, and that these people had, pretty much, nothing to offer me, pretty much the same way I felt toward the medical profession. It was probably an intuitive process.

Hildenbrand: When you look back at that time, and you see it from the perspective of the worst year of your life, and your experience was that of isolation and alienation...

Barbara: Incompetence, alienation, futility, you know, everything you can think of. It still makes me mad to think about it.

Hildenbrand: You know, I had a friend when I was playwright for the Childrens' Theatre Company in Minneapolis, John Jenkins, a dear friend, who told me, when I was having a bad time of it, "You have the Midas touch in reverse." I said, "What's that?" He said, "Its when you feel like the ass of your pants has been ripped out and everything you touch turns to shit."

Barbara: (laughs) Oh, yes. Oh, yes. But, I also feel that everything can be potentially valuable, and the value there was to never be in that situation again.

Hildenbrand: Amen to that. When you chose the diet therapy, Gerson's therapy, I have the impression you were on the mend already, you were making positive moves. Did you go from Guadalajara to the hospital, or had you already moved back to the states?

Barbara: No, this was a while before. We were in Guadalajara, then we moved back to California for awhile. That was when I got sick, and I got my diagnosis, you know, worked through that with the young immunologist. I got sick right after that, directly.

Hildenbrand: Right after you moved back to the states?

Barbara: Yes, although I had the first symptoms, I had the rash on my hands, before that, which was interesting.

Hildenbrand: Back in Guadalajara?

Barbara: Before that. The baby was born in California, and we moved right after that to Guadalajara. So that's interesting. I had the first symptoms before that, but this brought it out full-fledged.

Hildenbrand: Did you take a financial beating during that time too?

Barbara: It was, you just can't imagine; it was everything.

Hildenbrand: Everything?

Barbara: (laughs) Everything was bad.

Hildenbrand: OK. That answers my question. I tend to think a little bit in terms of cause and effect, although I tend to think in constellations of causative factors resulting in sets of changes.

Barbara: Whole solar systems. This was everything at once, being hit really, really hard all at once. We moved back into Puerto Escondido. That was when I was figuring out what I was going to do. That was actually a good time, and I was less sick during that time. It was after the diagnosis, when I was real worried about it, but living very simply and very free of stress. I was actually pretty well during that time. And then we moved to New Mexico, and I went on the macrobiotic diet, and I started feeling worse, and I started saying to myself, "I've got to do something else. I've got to take this in hand and do something with it." At the same time, I was going through all the things that you go through when you're sick with something like that; fear of what's going to happen, and fear of the unknown.

Hildenbrand: Did you feel that going to the Mexican facility was a part of a logical process, or was it out of desperation.

Barbara: It was very logical, very thought out, very much a commitment to a logical plan. But, by the time I went to the hospital, I had made the commitment to the therapy and decided that it was going to work. I felt that it was less a desperation step for me than for a lot of the people that I saw being wheeled in there who weren't necessarily there out of choice. They didn't know what else to do. I felt that this was my choice, a real positive choice, rather than lack of anything else to do. I was very positive about it, very enthusiastic about it. I had incredible support from Robin, who backed me all the way from "what you going to do?" through "OK, then we're going to do it." He gave incredible support, did all the cooking during the years of therapy. That was pretty fantastic, pretty favorable, probably what a lot of people don't have.

Hildenbrand: That's extraordinary support. It was very, very important for you, I'm sure.

Barbara: Yes, it was absolutely amazing and wonderful. It would have been very, very, very hard doing the therapy without that.

Hildenbrand: How long do you think it took you to get well?

Barbara: I was on therapy almost two years. I probably could have stayed on it longer, actually. I liked it. I missed the foods when I went off of it. I felt it needed that amount of time. It really did. I mean, I started feeling better, but I would have episodes, and I regret that I couldn't stay on a modified diet forever. I could be in the Olympics by now if I had done that.

Hildenbrand: What is your dietary pattern now?

Barbara: Pretty normal vegetarian diet. I don't eat fish or eggs.

Hildenbrand: Lactovegetarian, are you?

Barbara: Yes. If I eat junk food, I pay the price. If I'm so rash as to eat salted chips, I am aware that I have overstepped my boundaries. As a matter of fact, I try to encourage my family not to bring those home, and if I get my hands into a bag, everybody shouts. We're all quite aware of the effect that it will have. But I can eat basically every everything else.

Hildenbrand: Now, when you say everything, do you use those meat substitute types of foods?

Barbara: We use tofu.

Hildenbrand: You tolerate the soy products OK?

Barbara: Pretty well, but I tend to serve them more than I eat them myself.

Hildenbrand: I understand. I don't do all that well with the soy, and neither does Christeene, and that's three out of the three of us.

Barbara: Very interesting, because before I ever got sick, I was starting to think that maybe I was allergic to tofu.

Hildenbrand: I don't know if it's a true allergy, or a metabolic deficiency that causes us to have trouble dealing with the protein, or what it is, but I do feel that soy is not an ideal food product for people with a tendency toward autoimmunity.

Barbara: I agree with you. I definitely feel that I have some kind of a reaction to it. I love it, and adore it, and I love to cook it, but I do feel that its not the best thing for me.

Hildenbrand: Do you feel that you have under control a condition that is now the status quo?

Barbara: I wish I was a little stronger than I am. I wish I had a little bit more energy. On the other hand, I've always been high mental, low physical energy. Not always. When I was a teenager, I was an athlete, but...

Hildenbrand: Do you have any kind of exercise program that you do, or are you far too mental for that?

Barbara: I'm a walker. I get out and walk. It's good for me mentally too. Long walks.

Hildenbrand: Long walks. Yeah, that's great.

Barbara: I just can't stand aerobics or that kind of thing. You know, I don't seem to need it. I'm not into any kind of regime other than walking, and that actually helps. The more I do, the more physical energy I tend to have. But I tend to be higher mental energy over the long term. I will wear myself out physically by being too mental, being too obsessed with projects. One thing that I thought was interesting is that we...(laughs) I was so unbelievably distressed to read about alfalfa sprouts, because for years preceding getting sick we'd had alfalfa sprout salads. We had almost exclusively alfalfa sprout salads. That may have been a factor.

Hildenbrand: If you were eating lots of them, it certainly could have been. (See Healing #11, Jan-Feb, `86, "The Trouble With Alfalfa Sprouts").

Barbara: We were eating salads of only sprouts.

Hildenbrand: That was enough. Apparently the effect alfalfa sprouts have on suppressor cells is enough to make a rheumatoid-prone person's life miserable.

Barbara: Yes, I thought that was a remarkable coincidence. Getting back to your question, I feel like I have the tools. But, I still have some skin stuff. If I get really run down, exhausted, my skin will, what I euphemistically call, break out. I will get, sort of like, pimples, but it's really more little sores.

Hildenbrand: Do you have those little blister units?

Barbara: Yeah.

Hildenbrand: Well, you're not alone. Let me just say that, I'm not sure I'll make this a matter of record, maybe I will, it just depends (Note: I decided to. -- ed.), Chris and I, both of us, have noticed that both of us have a tendency to produce those skin eruptions under the worst stresses, and, honest to God, we live a stressful life. I mean, it's terrifically stressful. Of course, those are times it becomes a real delicate balancing act, and you really start asking yourself, "OK, what do I need, what do I cut, what do I have to take in?"

Barbara: It really helps me to hear this.

Hildenbrand: Yeah, it lets you know that you're not some kind of loser.

Barbara: Right. It definitely is produced under stressful situations.

Hildenbrand: Absolutely. I have the feeling that those of us who, at one time or another, develop SLE which I consider a condition in which stress is one of the most persuasive factors, remain unfortunately very susceptible to steroid swings, and that when we get locked into anxiety or frustration, we can look for some loss of immunity at skin level.

Barbara: Interesting. Very interesting, because I can have a fairly bad outbreak usually when something very important is going on, like an opening, when I want to look great. You know, when I've been working real hard for it, totally stressing myself out about it, that's when it will happen.

Hildenbrand: Did it happen right at the opening, or about a week to ten days after?

Barbara: After.

Hildenbrand: You bet. (laughs) That's right. When you sort of let down a little bit, that's when the stuff hits you.

Barbara: (laughs) But, otherwise, I'm not feeling too bad. And wondering what the heck is going on. Now, I strongly suspect that, if I went back seriously on the modified therapy, I could control that. This is my sense on that, if I were on the modified therapy, not taking in salt, not eating cheese, not eating any soy products, that it wouldn't happen.

Hildenbrand: I agree.

Barbara: So that's my take on it. I feel that I am well-managed, that I am basically a healthy person with a few idiosyncratic things related to my former condition, that if I was really, really good, this wouldn't happen at all. I could control it.

Hildenbrand: And, in spite of the fact that you have some type of patterning that resulted in the awful stress of your life at one point, that perhaps if you were living a normal lifestyle it would result in the need for hospitalization, treatment with chlorambucil...

Barbara: Yeah, that's right.

Hildenbrand:...cyclophosphamide, and prednisone, and that's my feeling too. If I was living the average Joe's existence, eating the regular junk, and not doing any emotional or psychological caregiving to myself, I could probably end up on dialysis.

Barbara: I think you're absolutely right. But, I'll tell you something...(background noise) I'm doing the dishes.

Hildenbrand: (laughs) I could tell.

Barbara: (laughs) I'll tell you something. Prior to last fall, we'd been living in Puerto Escondido for a couple years.

Hildenbrand: Where is that?

Barbara: That's on the coast of Oaxaca. Now, I was in bliss state. I had tutors for the oldest kids. The youngest went to school. I had lots and lots of studio time. I went barefoot the entire time. I never had one skin episode.

Hildenbrand: You bet! Absolutely my point. Absolutely my point.

Barbara: That kind of proves what we were talking about. I was in heaven, working as hard as I wanted to, which is quite hard. I was happy, they were happy, and actually doing a lot of physically stressful things. We went overland to Guatemala and the Honduras, and traveled the backroads of that country. I was just as happy as could be, even though physically it was stressful, physically it was hard. We were held up by banditos, and were eating less than perfect food in a lot of locations. I think it's due to the fact that I was so absolutely filled with joy at all times that I was in good shape.

Hildenbrand: Being held up by banditos?

Barbara: It's a good story, I'll tell you sometime.

Hildenbrand: (laughs) Fascinating. I think your experience is very parallel with mine. For several years, five years, before Christeene and I got married, while she was managing director and resident diva of the Pacific Chamber Opera (PCO), a semi-professional company, I moonlighted as her stage director. That's where we met. During that time, I directed fourteen operas. I would also help people move sets and do all sorts things. I would haul timpani with the musicians, haul lumber and hammer nails with the stage crew, and I just had a whale of a great time. My day would stretch from 7:00 a.m. until 1:00 or 2:00 a.m., I would get too little sleep, and stress my body to the very limit, but because I was fulfilled, I didn't have any skin trouble at all. It was heaven. I got to direct both Strauss operettas, "Die Fledermaus", and the "Gypsy Baron", and I was able to stage Mozart's "Nozze de Figaro", and Flotow's "Martha", and just had a blast. That was a kind of Golden Age, but it didn't last. Over the last five years, I've endured some real hard core challenges in the Gerson Institute, the dissolution of my prior marriage, court battles and custody fights, and the little opera company died of a Reaganomics funding crisis.

Barbara: That's a good way to put it.

Hildenbrand: From `88 to `90 it was terrible. I even resorted to using some topical treatments on my hands because they had a tendency to break out. One day it hit me that I'd better get my psychosocial house in order; I'd better figure out how to fish or cut bait, get out of situations that hurt too much. Really, it's those changes, toward which so few of us have coping skills, which are so very important, in addition to controlling all of the dietary factors that we can control, and all of the air and water factors.

Barbara: I figure that, to pull off the therapy, you are going to have to have a certain amount of "toughness," or a certain level of assistance, or some people aren't going to be able to it, ever.

Hildenbrand: I agree. I think that the only way that this therapy is going to be manageable for a number of people who need it will be through significant health care reforms in the U.S., and for us to have Sanatoriums again.

Barbara: Oh my God, wouldn't that be fabulous!?

Hildenbrand: That's what we need.

Barbara: Now, see, I actually fantasized about that. There are these little casitas, these little units, that I walk by sometimes, and I have looked at them and fantasized about buying the whole thing. I wish I could do it, just buy the whole thing and turn it into a little Gerson Sanatorium. You'd come here to beautiful Santa Fe, and stay in one of these little casitas and be taken care of. That way people could do it.

Hildenbrand: That's right, the sanatorium for tuberculosis management was successful.

Barbara: It was a big part of Santa Fe's history. It worked here. People came here because of the climate. There is a history of it here. There just aren't monies for these social programs but, my God, what a difference it would make.

Hildenbrand: It would make a world of difference, I think, in cancer management, and in AIDs management, and in the recurring tuberculosis crisis.

Barbara: That's right, tuberculosis is on a comeback. It's scary.

Hildenbrand: Yes, it is.

Barbara: How is the actual effectiveness of the therapy in cancer? I guess it really varies with the types of cancer. It is effective in melanoma evidently.

Hildenbrand: At this point, it's too early to know but, we have very strong impressions that lymphomas, melanomas, and some prostate cancers are more prone to positive responses. We also have an irritating outlying data pool of total regressions, remissions, of cancer of all types, in all ages, in different races, and it's frustrating.

Barbara: To not be able to follow up on all of this.

Hildenbrand: And also to not know why and how and who. What is it about the therapy that does it? We have no idea what's doing it. We don't know if its the way the individual interacts with the materials, or what. Eventually, of course, we'll be able to study that. We're on the edge, now, of getting into some prospective evaluations which will be the first such evaluations ever in cancer treated with the Gerson Therapy. Once we've done that, we'll go into the basic sciences. That will be the first time that the basic sciences have been looked at through the lens of this therapy since Gerson had to leave Germany.

Barbara: Is the European experience going to be helpful?

Hildenbrand: Oh I think so, I think also you'll be hearing within the next several years that we're propelling an NCI evaluation, because we're going to in a best case review. That will prevail cause the basic science research mechanisms to click in, so that people will be asking, "What is it about apple juice and carrot juice and coffee and these organ systems?" That will create tremendous confusion in the research sciences for many decades, and that's fine.

Barbara: Well, too bad the money's not available.

Hildenbrand: I think that we'll find that it will be, as soon as the people figure out that there are ways to make money off of dietary treatments. If some of these persuasive, tightly focused economic people and groups could see the reason to put together sanatoriums and third party payer participation and get a trend going, it would certainly be possible to have, to justify, doing the research work and the clinical trials. Its just a matter of time. Things will change.

Barbara: Have you heard the rumors that Bush has lupus?

Hildenbrand: No, I hadn't heard that he may have lupus, but I wouldn't be surprised. He'd already had Hashimoto's, and that's in the same rheumatoid family of autoimmunity. That's why they radiated his thyroid, killed it, and put him on thyroid hormone, and that's why he's on Halcion. He's depressed as hell.

Barbara: Very interesting.

Hildenbrand: Of course, he's hallucinating in office, and has uncontrollable disperceptions, psychotic behaviour and aggression. But...(laughs)...I'm not sure that's so different from who he was before.

Barbara: (laughs) Oh, gosh.

Hildenbrand: I'm joking about our chief executive, of course. I wonder if we haven't interviewed out at this point. I'll bet I've got enough here to make a nice little interview. Do you have any words of wisdom for our readers?

Barbara: No, not really.

Hildenbrand: Anything you want to close with?

Barbara: No, no, I think its all been said. I think maybe the bottom line is really understanding the therapy, and going into it with open eyes, as a belief system. That's what it was for me -- understanding clearly what I was getting into, and believing in it -- not going into it in desperation without really understanding it.

Hildenbrand: Did you feel that going into the hospital actually helped to make you more solid?

Barbara: I'm sure it did. I felt pretty solid before, but simply because there's so much information available -- people like Norman are pretty convincing, Charlotte's compelling -- of course, it helps.

Hildenbrand: I'm not trying to ask a leading question, to get you to make an endorsement of a Mexican medical group.

Barbara: It's true. I felt fairly convinced before I went there. No, at the time, we had a lot of money, and we were willing to commit the money to go there and learn how to do it right. That's really why I went; not to be more convinced, but to learn how to do the therapy completely. In fact, it did help. I was doing some things less than perfectly. That was my main reason for going. But once you're there, if you're open to it, you can learn a lot. I took notes on things I thought I already knew, and I found it helpful. No, I'm not giving an endorsement -- what I'm saying is true. Of course it helps, because you are close to so much information. And for me it helped because -- the way my mind works -- watching the other people with their reactions and, as I told you, seeing the people who I thought might succeed and those who wouldn't, and seeing the difference in their attitudes was major -- it was major.

Hildenbrand: Yes.

Barbara: Knowing that some of the people would go home, and lapse, and die. A lot of them would. And I knew I was going to be one of the ones who would make it work. I had a little bit of competitive spirit there.

Hildenbrand: Right. When you get the rashes now, how long do they last?

Barbara: They can be stubborn. If the skin breaks, they can last for quite a while and scab over and be really nasty, and they can last a couple weeks.

Hildenbrand: Um hmm. Couple weeks.

Barbara: Most distressing.

Hildenbrand: But, when you had the discoid rash with SLE earlier, I imagine those would hang around a little longer, wouldn't they?

Barbara: They could go on for months and months. For me, that was really the worst of it. Vanity is involved.

Hildenbrand: Felt like a leper, didn't you?

Barbara: Oh, God! You can really understand how -- well, the guy with AIDS who came to the hospital, he had the purple skin colorations on his face...

Hildenbrand: Kaposi's sarcoma.

Barbara: Yes. My heart broke for him. No one wanted to get near him. I went over and shook his hand and sat next to him, you know, tried to pump him up a little bit. I knew he was going to die. He was pretty far gone already, but, God, once you've been sick yourself, your compassion level is really multiplied.

Hildenbrand: You know, that's really so true. In fact, I can say that it is the rare individual who, having not been sick, really identifies with or feels compassion for a person with AIDS or a person with some other dread condition.

Barbara: You know, I just met a woman in a wheelchair. I just made a point to go and talk with her. I discovered a really delightful, interesting, dynamic person who happens to also be an artist. We're going out painting on location just for the exercise of it next week. I don't know how we're going to work it with her chair, but we'll figure that out when we get there. She was someone I wouldn't have met otherwise, if I hadn't made a point to do it. Here's one of the spiritual benefits that we're talking about.

Hildenbrand: That's right. That's right. Well....it must be almost dinner time there. Don't you have a family to look after?

Barbara: I just got the dishes done. (laughs) That's a step in the right direction.

Hildenbrand: That's a start. I know we're an hour behind you, and kids on the way.

Barbara: It was good to talk to you, and good to talk to someone else with an analogous experience.

Hildenbrand: I'm going to share this conversation with Chrissy before she types it up, because we have both recently had a little trouble here and them. But that's because, my God, we went to Washington, DC, and Bethesda and Chantilly to do this National Institutes of Health thing, and we just pushed and ground and shoved our way through it. And when we let down, it hit. It didn't take but a couple days to stabilize after it, but it is reassuring to talk to other people. And what do we have to complain about? We were diagnosed many years ago, each of us, with a disease that could have taken us out. We could have met the reaper. And now, we feel totally dissatisfied when we have a little local eruption of the skin or some symptom here or there. Chrissy tends toward migraines, I tend toward the skin eruptions. But, I feel that, actually, we're all of us pretty fortunate.

Barbara: Oh, absolutely. Absolutely. And I find it distressing to talk to people who are on only regular medical management, and who cannot hear what I tell them about this other way, because I feel so sorry for them. We're really very fortunate.

Hildenbrand: I agree, we're fortunate. Barbara, I'm going to let you go now. I thank you very much for talking to me. It's been really good for me, too.

Barbara: I enjoyed it.

Hildenbrand: Take care.

Barbara: Bye.

The Gerson Institute.


By Gar Hildebrand

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