Forum; A Personal Struggle with AIDS

Please Subscribe to the channel. This is Olive Graham, your host on Forum. This week, author Barbara Peabody tells of her son's heroic battle with AIDS, and there about four drugs they're experimenting with for treatment of immune system, trying to get rid of the HTLB3 virus, which is what they think is the cause of it all. The author of the Screaming Room this week on Forum. From the Center for Telecommunication Services at the University of Texas at Austin, welcome

to Forum, I'm Olive Graham. Composities are common as the usual skin disease that gives your diagnosis of AIDS. That's the type of skin cancer that usually is not fatal, it's an older man, and AIDS it can invade the whole body, can cause blindness, can invade the abdomen, any of the vital organs and can cause a very painful, excruciating death fairly fast once it gets inside often. He didn't have any closest hair color at all. Barbara Peabody, author of the Screaming Room, and co-founder of the San Diego chapter of The Mothers of AIDS Patients. A personal struggle with acquired immune deficiency syndrome is the topic of today's program

on Forum. Barbara Peabody has written the Screaming Room, a journal through her eyes of her son Peter's heroic fight for survival after he was diagnosed as suffering from pneumocystic pneumonia, a disease that attacks the body if the immune system has been impaired. This Peabody describes the early indications that Peter suffered from AIDS. Peter had what is actually called arc or AIDS-related complex, probably for about a year before he was diagnosed, and that he had to chronic diarrhea, weight loss, low grade favors often on loss of energy, increasing fatigue, all this kind of thing. I don't believe he had night sweats, which are often very common, I believe he did have slightly swollen glands, which he wouldn't have thought anything about because all his life he used to get in slightly swollen glands at the least sign of a cold or something like that. Gradually worse and worse, sometimes a little better, but always back to worse, and then he was finally diagnosed with AIDS when he had pneumocystic pneumonia in November, end of November

in 1983. Was he under a doctor's care before this? He had gone to one doctor who thought the diarrhea was probably some parasite he'd picked up. He was living in New York, and there are a lot of foreign-born workers in the restaurants. He worked as a waiter, and so this doctor thought probably he'd picked something up from them, which is not uncommon, especially since the one restaurant he was working in had very unsanitary conditions, and however he changed doctors then in September, because this one didn't seem to be able to diagnose or help him at all with it, and the second doctor asked maybe he'd ever heard of AIDS phobia, which was a little bit blind, I think, and then he came down with AIDS about two months after the doctor asked him this. When Peter Vom Lenn was diagnosed as suffering from AIDS in the winter of 1983, much of the treatment was experimental and not always successful. As his mother and primary caregiver, when Peter was not hospitalized, Barbara Peabody became very familiar with Peter's catalog of prescriptions, Ms. Peabody.

He took two different experimental drugs for his first new assistous attack. One was called Septo, one's called pentamidine, pentamidine was still an experimental drug. It's very painful, it's injected, and it's very painful. The two finally in combination seemed to help. After that, he took various things for the diarrhea, nothing, whatever work, in May of that year he was diagnosed with what's called mychovecterium, avium intracellulari, or MAI, and for that he was given five or six very heavy, mostly experimental antibiotics. Then after that, let's see, I can't remember so well now, he was also on dielantin for seizures and brain infection, the results of the brain infection he had, I had to keep upping that and then they combined dielantin with tegritol, and then, let's see, I'm probably leaving out several long the way, he also intimately took medication for thrush. Thrush is very common to AIDS patients, it's a white patchy infection in the mouth.

The danger of it is that it can go down the esophagus and into the lungs, and cause quite a good deal of trouble, but it's pretty easily controlled with various drugs, ketoconazole as one, that's what he usually took. Then very often AIDS patients' skin gets very dry and itchy, and so they usually have to take, which is probably some kind of fungus on their skin, and so he would try to use different things for that mostly, they didn't work, and he complained very often of having congested ears, so he took ganty congestions for that, which also didn't work very well. Then he took an experimental drug, he started losing his vision in the summer, and after two months of waiting to be, to finish the protocol for that, he was put on that, but by then he'd lost the vision in the one eye, and it probably was already starting in the other eye, and it did go to his brain. Is this alright, if you will, of infections and afflictions, is this a typical profile for an AIDS patient?

Pretty typical. Were you learning about these along with him, or were there some things he already knew? No, we sort of learned all about it together. We could read whatever we could, we'd ask questions, we didn't care if we sounded dumb, we wanted to know, and the medications, we'd keep asking what are the side effects of this, because you want to balance side effects with curative powers, and sometimes they don't always equal out. Some of the drugs are pretty strong and most are experimental. Physicians that treat AIDS patients are physicians that specialize in the many opportunistic infections that attack the victims. Barbara P.Body's son, Peter Baumlen, spent most of his time in treatment at the University of California at San Diego Medical Center, where he was hospitalized six times. His P.Body describes Peter's care. He went to infectious disease specialists, and if you are looking for somebody, usually if you go to a university hospital and ask for the infectious disease department and ask who particularly treats AIDS patients, you'll usually get into a good situation. How much of the time, after he was diagnosed, did he actually spend in the hospital?

He had seven hospital visits. Mostly the first one was six weeks. Usually that would be two weeks or three weeks, once just four days, but usually average more like about three weeks. One thing that is very devastating about AIDS is the effect on family finances. Right. Yeah, and we're the ones that survive the patient, isn't it? It's hard for anyone to lose a child or a sibling also. It takes a good while, and their AIDS has so many other ramifications that a lot of families have a great deal of trouble dealing with this, dealing with facing, losing the patient. Often, if the patient is gay, they'll have a lot of guilt, like I'll say, especially the mother and the father feeling, maybe they brought him up wrong and caused him to become homosexual, which is not true. And maybe anger at the child for being gay. They think he's chosen his lifestyle, and that's not true.

You don't choose to be homosexual. You're really born with your sexual orientation for whatever reason. And it's a shame to meet families that feel that they might have caused him to be this way. They didn't, and the best they can do is support him, either, in his sexual orientation or, and particularly, if he gets AIDS. Now part of the time he was in New York when he was suffering from some of these, and part of the time he was in San Diego. He was moved to San Diego, I assume, was to be with you and to have you help care for him. Was there a difference in his treatment one place to the other? Yes. Quite a bit. We felt New York, they were very good, I think, medically and so on, but New York is New York, and people don't have time to stop and chat, and we got quite close to several nurses, but it was nothing like in San Diego. The first, his first clinic visit there, the doctor spent an hour with him, and Peter was extremely impressed. He thought, you know, that doctor would never have been any good in New York, and never

would have made it. That was the one in the sandals, right? Yeah, right. And he really, we really had very nice care in San Diego people. Well, there were still only about 38 patients when he went back there, so they could take time with the patients at that time, and they did get to know them well. At the time, Peter contracted AIDS. The medical community had not known about AIDS for very long. Well, science was in the position of trying to keep up with a disease that could so quickly cause its patients to succumb to afflictions that were known, but sometimes rarely seen. Could you tell whether or not over the space of time that you had to experience someone suffering from the disease that there were some positive steps in its care and treatments, any changes that you noticed? Not during Peter's course, I think, since then, there are about four drugs they're experimenting with for treatment of the immune system, trying to get rid of the HTLV3 virus, which is what they think is the cause of it all. So there are different studies going on in different university hospitals, and so on

throughout the country, on these. They do often have little trouble getting people into the studies, because often part of them will be on a placebo, and they don't want to waste the time in possibly being on a placebo, and for which I can't blame them. As far as the opportunistic infections they are, they do think they're learning to control those a little better. If patients start going in before their full-blown aides, possibly, soon they suspect they might be something wrong and get good care and take care of themselves, and they will probably do better if they have a first bout of a new racist peter had gotten very run down. I think he was in a lot of denial. He had these two doctors who didn't even test them in any way. He had some unity, or for AIDS, or anything else. So he was very, very overworked, very overtired, about 20 pounds less than his usual weight already. By the time he just about literally collapsed with nymphocystis. While there are treating this host of other infectious diseases, at least the opportunistic infections, what is it that actually makes it a bonafide case of AIDS, and not just something

here or something there or something else? Yeah. The CDC in Atlanta says that the Kaposi Sarcoma in the skin cancer, I mentioned before, it's nymphocystis pneumonia, which is a very rare pneumonia, and usually only found in people who've lost or are losing their immunity, their immune defenses. This at first was all they included. Now they will include evidence of a few other infections, and I don't have the list with me. It's still too limited, and the problem is that darker age-related complex patients can often be just as sick, if not sicker, than someone with full-blown aides, but they don't have the right infections to be on the aides list. Therefore, they cannot get disability. They cannot get their medical payments made by the government of the state of whatever they don't qualify for any of this, and yet they're very often too weak and too tired to work and make money.

It's a real limbo. Sometimes they're even actually relieved to be diagnosed as aides, which is pretty tragic. To keep from exhausting her reserves, Barbara Peabody looked for support and sustenance among the family and friends of the other 38 victims that were being treated at the medical center. That number has now reached 250. In New York, support systems were in limited supply. In New York, we didn't find any support groups. We had a very good social worker, young social worker, who talked to the family individually. And once a week they had, I believe it was a nun and a nurse and a social worker I think that would meet with anyone who wanted to, who was family or close to an aides patient. I think they do have groups at the gay men's health crisis center and a few other people

I've heard in some of the churches now are running groups there. But otherwise, we weren't in any group situations there. But you weren't sending it? But in San Diego we were. We were in the first support group of the aides project there. There were only about six, seven or eight of us that would meet. Describe how that group came together. Now a psychologist and a few other very concerned people, mostly gay people, had felt that they wanted to do something to, they could see that this was going to be a growing crisis. And so they started the aides project there. That since has grown quite a bit now because we've had over 250 patients in San Diego. It now is funded by the state, but that's only for education. So support groups have to be run by volunteers and on a volunteer basis like that, which is very nice but not always enough. When you say volunteers, they're still healthcare professionals, possibly? That's what they're trying for.

They do have a few now, clinical psychologists and so on that will volunteer to help patients and families, lovers, whatever, significant others. But the groups are still usually run by a volunteer who's only been trained to run groups. He's not a trained psychologist or clinical worker. What do you see as the basis for these groups? What is it that they provide? They provide a mutuality that you, so that you won't feel so alone. You feel a good bit, both the patient and the family where he's working with can feel very, very cut off and isolated. And in these groups, you can talk about all the problems you're facing with people who know the problems you're facing because they're going through it, too. And that's very important. You can sort of exchange a lot of practical suggestions about the care of patients. Patients themselves deal with facing death, how to keep their spirits up, not to get such a press.

They deal with a number of things in their groups. Is it, well, I assume that it is, very stressful, since they are dealing with a fatal disease. And often see their numbers diminish, even as they grow. Yes. How do they handle that? That's very, very difficult, especially the ones that have survived for quite a long time. One of my art students has survived about two and a half years now. And he has a lot of guilt because he's living. And my son, Peter, was a friend of his. He's gone. I don't know how many others. I think all the ones that were with us in the first support group, John, is the only number. Even if you don't immediately succumb, and even though you know that this is not a disease that can be cured, can you indeed just survive for a while? What is the longest you really can do? The longest I think on record is something like between four and five years. That's still not a very long time. That's still not a very long time.

But some of them, I did know one university professor was actually about 60 years old. And he lived about four or four and a half years. And he functioned really quite well till the last year. He kept on teaching and was able to take care of himself till the last year. And then he gradually went downhill fairly fast. He lost his vision too, yet the same virus that Peter did. And it affects the oners? Yeah. And goes into the brain. Well, I had heard that there was atropism for the nervous system. Very difficult. Definitely. Many of the opportunistic infections can invade the brain as well as the HTLV3 virus itself. They're beginning to think now that perhaps often you can see signs of different behavior and neurological problems before there are even other overt symptoms. You have started or helped to start a group. What is the foundation of your organization?

What are things that you saw in support groups before that you wanted to continue? And what are some things that you've added? Right. Two mothers and I started to map mothers of AIDS patients after we'd all three lost our children. One of the other mothers lost a gay son like I did, and the other mother had lost an 11-year-old daughter to a transfusion related AIDS case. We all felt that we had been terribly alone at the beginning, even though we all, in fact, all three of us had good family support, so we were the primary caregivers. We had felt very much the need to know other mothers in our situation to talk to, to be able to talk to about it. So last August, we got together and formed a group. We also thought we would try to do things like helping patients who do not have a family, either have no family support or have no family. Maybe they're not living anymore either or they're very far away. So we have done some of this, too. How do you go about doing this? Is it enough just to do weekly or monthly meetings or is there some other fabric that you would like to do?

Most of it's by telephone and mail, and families outside of San Diego have heard about us and have called or written, you know, just desperate to know somebody else who's gone through it, and to know how you do it. Some have wanted to start their own groups where they live because there's no support for parents. Have you considered having groups chartered elsewhere? Yeah, that's what we're trying to do, sort of on an informal basis. We feel we can't ask do's. I mean, we feel that the mothers have heard their membership, but we have had private donations, which are very nice. And we also did at Christmas time, we sold reads to make some money. What kind of expenses would a group like this? Really very little expense because we can meet either at an AIDS project or at people's homes. The major expense is postage because we do send out a newsletter occasionally, or notices or try to tell them to write to their senators and representatives to support AIDS funding and that kind of thing.

So the major thing is postage. We also spent a bit on, we put together a folder of information for mothers of newly diagnosed patients. They come to us just desperate for information. They really want to know. They want to know what they can expect, what they're going to have to deal with. They want the facts. You know, they don't want to be, I don't mean soft talk. They want to know what to prepare themselves for, which we didn't know. I had no idea that Peter was going to have all these brain infections. It never seemed to enter my mind that these infections could get into the brain too, which they did very heavily. And make this cure difficult, right? Back to that information function that you feel you serve. And do you feel that the hospitals are not holding up their end by not providing this information, or is there even a vehicle there for it? Yeah, they don't, at least speaking of San Diego, and it's a very good hospital. It's the University of California Hospital. And they are swamped just taking care of the patients. They did, we actually went to two different support groups that year, one of the AIDS project

and one of the Owen Clinic, which was mostly the AIDS clinic at UCSD. And they don't have that anymore, they are completely inundated, because, well, like in the county, there were 38 patients then, and now there have been over 250. And they are all overworked, but the nurses, the floor nurses are very cooperative, and they have a family come in that needs to talk to somebody they'll call us, or one of the doctors will refer them to us, or sometimes the patient himself wants one of us to talk to his mother. Barbara Peabody's book, The Screaming Room, specifically as a Chronicle of the Care, she gave Peter while his health deteriorated. How much care did Peter need from you toward the end? Uh, complete. When I had to act the last week of his life, I couldn't take care of him anymore, we had to get a professional nurse finally. But I couldn't about the last two months, well, for a while in the spring, when he was having seizures and a lot of neurological troubles, I didn't dare leave him for very long either,

and then the last couple of months, he had a lot of vertigo, and he couldn't even get out of bed without just staggering, because the world just spun around him with that. And I just really couldn't leave him the last couple of months, but not every parent would be up to that. No, because a lot of parents are older than I am, and physically it's hard for them, and some of them have medical problems, they're good many, and it is really hard. But I have known some really wonderful mothers with disabilities, or some mothers who've even lost other children, you know, and still hang right in there. What do you recommend from your support group stance to families that can be very stressed by all the other needs that have to be... Yeah, I think it's very important that they try to take care of their own physical and emotional needs, so that they can give more to that child, and without themselves falling

apart in the process, because it is really difficult, and it's very, very discouraging, you really need to be able to talk to people. What about after the inevitable? What do you counsel parents to do? You've been through this, what do you say to them, how do you bring the family back together, sometimes I'm sure it shatters it to a degree. That's very difficult, and the loss of one child, especially an adult child, leaves a very large gap there. I don't know, I found my way was to continue working with AIDS patients, and with other families, now not everybody can do that. But if they feel they can, and they can help another patient, maybe somehow do for them what they had done for their son or daughter, I think that can help. It's a positive thing, it's bringing something positive out of a disastrous negative experience. Are there any ongoing activities or anything that you'd like to incorporate into the

mothers of AIDS patients group? Well we'd like eventually to see it be national, have some kind of power to really pressure Washington for more AIDS, say more home health care for living patients, more support for emotional support for patients and families, these are the areas where there just really isn't funding. So much has been done by volunteers so far, but we're going to run out of volunteers, and the volunteers themselves burn out. Does the group, I realize, that it's informal to a degree, but can you tell that there's a stance of any kind on testing, for instance? Now we haven't taken any stance on testing as a group, I myself feel like it's a feelable people at risk, maybe should go and get tested. But it doesn't really tell you anything that you can't do anyhow, since there's nothing

to cure it. What you can do, anyone who's in a high risk group or suspects they might be or has been exposed to AIDS simply take very good care of their health, be very careful with other people sexually, so you don't transmit it or pick it up from someone else. You have to take responsibility for both your health and someone else's health. There are ways to learn about safe sex, and this applies to men and women, and I think people can do that. I don't know if it really helps for people to find out if they are positive or not. It's extremely depressing and scary. It's also probably not too easy for parent and child regardless of the age to deal with sex. Yeah, very often, yeah. Not to mention if it's almost sexuality, they get very nervous. Beyond serving as a kind of catharsis, a book of this nature also serves as a guide or manual to those who will come later who must come to terms with this disease and its care.

We hope that the book will inform people what AIDS is all about. Number one, people don't know what the disease, I think they usually think that with AIDS you get second-die period, and unfortunately it's not that easy. It's more apt to be long drawn out, difficult process, a draft of meditation. I kept the diary through good part of his illness, and then afterwards I filled in which I was able to remember extremely well. Yes, it's also a tribute to Peter because he really became a man that year. He was really a tough fighter and I'd often wondered, you know, and fretted about him and he, while he was growing up, but he turned out to be very tough, and I think it's important to know for people to know how important family support is. If you have someone with AIDS in the family, it's just terribly important. The art therapy I do with the patients, boy, that's what they really want is their family and especially their mother.

Say something more about the therapy I'm interested to know how that really works. Do you find that it even works for the parents too? Yeah, I've had mothers in there one or two times just very briefly to work too. It works very well. I'm really pleased with it. They usually stay in a class each time, I do it twice a week, and they find something to fill their time, and something they can be proud of. So I like them to produce a piece of work that is something justifiable, and they do. They've done some really extraordinary work, several of even sold, several paintings, and so therefore we try also to have money to mat and frame them properly and hang them. We have a continuing exhibition all the time so that they will be proud of it because these are young people who are suddenly disabled, they're a pride, they're ego to solve and smash the bits, and this is something new they can do, and so they can still be productive. And get a little claim and an ego boost from it too.

It's also very therapeutic too. They have a lot of anger, incredible anger, often directed at themselves for having let themselves get sick, a lot of shame because it's a sexually transmitted disease, this kind of thing. They have boost, there we go, all the time, both in talking while they're painting. They talk a lot in class, and it's very interesting, it's very gratifying work. Peter Van Lenn died November 11, 1984, a little more than a year after his first hospitalization for AIDS. His mother, Barbara Peabody, is co-founder of the Mothers of AIDS Patients and is a member of the Board of Directors of the San Diego AIDS Project. In Austin, she shared her experiences with the Austin AIDS Project. Her book, The Screaming Room, was published by Oak Tree Publications. If you have a comment or wish to purchase like a set copy of this program right to Forum,

the Center for Telecommunication Services, the University of Texas at Austin, 78712. Your technical producer is Walter Morgan, I'm your producer and host, Olive Graham. Forum is produced and distributed by the Center for Telecommunication Services, the University of Texas at Austin, and is not necessarily reflect the views of the University of Texas at Austin or this station. This is the Longhorn Radio Network.