I See Miracles All The Time
This chapter, "I See Miracles All The Time," has been excerpted with permission of the author from Sometimes My Heart Goes Numb: Love and Caregiving in a Time of AIDS by Charles Garfield with Cindy Spring and Doris Ober.
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Those people who said I was different -- who suggested there was something wrong with me when I was growing up -- maybe some of them are smiling now, and saying, "He's different, that's wonderful."
Danny Castelow has a rich baritone voice and a broad smile; he moves with a dancer's grace. He is an exceptional man whose approach to caregiving is distinguished by a profound level of respect, acceptance, and validation of his clients with AIDS. He tries to look at each one without prejudice and without assumptions. His special skill is astutely assessing his clients' individual needs and going the extra mile to meet them. I asked him how he learns about another person's needs.
It's not complicated. It's mainly just having a conversation with someone with the intent of getting to know him or her. It's realizing that just because you've worked with sixty other people with AIDS who have had pneumocystis twice, you may not have the least idea where this person with his second bout is coming from. Every case and every client is unique.
One client I'll never forget was a non-English-speaking Asian man, a long-term resident of Chinatown, where the landlords were discriminating against people with AIDS.Where this man was living, he shared a bathroom with eighteen other people. So Shanti moved him into a small apartment of his own in a building they ran as an AIDS residence. I brought a translator with us on the day we showed him the apartment. I opened the door, and we all walked in.
I began telling the translator and the translator began telling him that there were some additional pieces of furniture in the basement that he could use, and he was waving his hand as if to say, "I don't want to hear. I don't even care about that now!" He was just basking in this empty apartment that was all his. And he was totally fixated on the bathroom! If we had only rented him that bathroom, I think he would have been thrilled. Seeing what it meant to him and realizing that I had played a little part in giving him something that was so important was one of the most incredible moments I've had in this work.
You try to honor individual needs. And that's not always going to be what your agency offers. Somebody might arrive at your office who should be across town. In the case of the Asian man, it took three agencies going beyond "what's on the menu," to get him his apartment. I've made it a personal challenge to put people together with the agency or person who can help them. To do that I may try a little more, or try a different way. Instead of, "We don't do whatever it is," I'd rather say, "We don't do it, but here's the name and phone number of an agency that does."
Danny tries to go the distance for his clients precisely because he views each one as unique and deserving of his best effort. He is interested in who they are now, with AIDS and all its complications, which is a kind of validation that not only demonstrates respect for his clients, but encourages their self-respect -- a precious commodity to someone with severe, self-eroding physical and emotional challenges. How his clients respond to those challenges is what touches and inspires Danny.
It was Ted's birthday on the day his doctors told him that he wouldn't be going home because his lover couldn't provide the kind of skilled care he was going to need from now on, and they were going to move him to a hospice. When I stopped into his room that afternoon, his family was throwing him a party that had obviously been planned beforehand. There were balloons, some of his co-workers from his job were there, his lover was there, there was a cake and photographs of him when he was well. And the look on his face -- well, he was just horrified.
I went back that evening, and said, "Your face didn't match what was happening this afternoon," and I could see him release and then he burst into tears and said, "I just want to go home." It was one of those moments that you might want to turn away from, but I've learned to sort of hang out in those painful moments. People don't go into cardiac arrest when you tell them the truth. Ted had needed someone to acknowledge what was happening and how he felt -- that he wasn't going to go home -- and how sad that was. But you have to learn that. You have to practice not turning away from the truth. It's easier to do what Ted's family and friends did. Six years ago, I would have been partying with them.
When Danny talks about "hanging out with pain" he is describing that kind of deep listening that is key to the Shanti model of caregiving. It requires intent listening to the client and to one's own intuition -- and it requires not trying to do or to fix. It's a way of being fully present for another person and bearing witness to his or her struggle. It may also open the door to profound experiences:
There was a patient at San Francisco General who had sixteen different AIDS-related infections. There wasn't room on his chart to write them all. At the time there were only twenty-two recognized by the CDC, and he had sixteen of them. This man had an incredible speaking voice, and perfect diction, and although he was very weak, he took great pleasure in reciting what he had: "I have toxoplasmosis, and cryptococcosis, and Kaposi's sarcoma, and cytomegalovirus ..." and on and on. I was inclined to cut him off, but I let him go through the whole list, which ended with him saying, "And you know, with all of these things that are happening to me, I can really say that I'm having a good life." Not "I've had a good life" -- I'm having a good life. You have to be inspired by a person like that. After dealing with that kind of person, I have a hard time with small complaints. People say, "It must be so hard, AIDS work," but for me it's harder dealing with petty, non-AIDS related things.
While there are no formulas for responses or behaviors that we can pass on to future caregivers, we can try to advance the notion of being fully present, of letting go of trying to control things, and of trusting the process of caregiving and the very special something that can happen between two people in the caregiving relationship. One way to let go and trust in the power of the caregiving relationship is to have let go and learned to trust oneself. Danny pays attention to himself, he is introspective and committed to personal and professional growth. He told me quite sincerely, "I think deep in my heart I'm a very nice person with a wonderful, kind spirit. I work on cultivating that. You have to work on yourself. You have to be very conscious." His view of himself as a "kind spirit" is strongly supported by colleagues and clients.
Danny has been very conscious, very sensitive, from childhood. He grew up in Detroit, and demonstrated a talent for dance at an early age, which was acknowledged, and nourished, and grew into a promising career. He toured with various dance and theater companies when he was in his twenties. Danny had three sisters, one only fourteen months older, with whom he was especially close.
We were crazy about each other and spent all our time together as children. And then one day the lady across the street was outside cutting her hedges, and she caught me by myself and told me, "Danny, don't you play with your sister so much. A little boy shouldn't spend so much time with his sister." I was seven or eight.
Was the neighbor insinuating something incestuous between Danny and his sister, or was she warning him against becoming effeminate by spending too much time with her? Danny was clever enough, and sensitive enough to catch the subliminal criticism, even if the specifics were vague. It may have been the first time someone had said, in effect, "You're different, Danny Castelow. And we don't tolerate that difference." For this sensitive boy, the comment was a slap, a resounding invalidation. But invalidation can occur far more subtly -- it can consist of a simple discouraging word; it can be felt in a person's rolled eyes, in the projection of doubt: "Are you really sure you want to do that?" It comes through in innuendo. Danny believes, "If you're judgmental or skeptical about something, it's going to show."
At the same time his meddlesome neighbor was making Danny feel bad about himself and his loving relationship with his sister, he was going to dancing school, "and here the teachers told us, 'Lift your heads! You're beautiful! Don't you know you're the descendants of kings and queens of Africa?'" In the course of the day the messages Danny got and the way he was treated by the adults in his environment were quite inconsistent and oftentimes conflicting. "No wonder I was a mess!" he says.
But so many of my clients have similar stories. Most people I've worked with get into childhood stuff at some point. I've had some tell me that they would rather their parents had physically abused them than to have ignored them, or dismissed them, or invalidated them as they had. I understand what they're saying: They wanted to be recognized for who they were, they needed to know they mattered.
They still do. And it was, and is, the same for Danny. But his encounter with invalidation seems to have made him vow never to be guilty of doing the same to someone else. His promise is, "I'll always try to see who the other person is, and what he or she needs, and I'll try not to put a negative slant on my view of that." He tries to do what his dance teachers did: to give the people he works with the gift of affirmation and pride.
Danny began his Shanti caregiving as a volunteer at the same time he was working for a fast-paced brokerage firm. Soon he traded one high-pressure job for another: in 1986 he joined the staff at Shanti and became director of Practical Support. Later he worked as a counselor at San Francisco General Hospital's Ward 5A, and then as case manager for Shanti House, a residence for people with AIDS. Today he is a case manager for the San Francisco AIDS Foundation. His evolution as a caregiver has been marked by profound lessons learned on the job.
When I was a volunteer, most of my clients were wonderful. I've worked with people who would get up and clean their apartment before I came over to clean it, so it would be less of a burden on me. Then I got assigned a really mean man. According to his friends, John had always been mean. But I didn't know how to deal with it. I didn't know to trust the same instincts that applied to nice clients-to tell the truth, to be able to say what's going on for me.
One day when I got to John's after a particularly bad day at work, he snapped at me about something, and I managed to say, "Listen, this isn't working for me." And he said, "You don't understand. I was taken to emergency today. I've had a horrible day!" And suddenly it felt okay to say to him, "You don't understand. I work for five stockbrokers and they were all on my ass today, and I had a rotten day too!" Then we sat down and told each other about our awful days. It was really wonderful. If we hadn't gotten there, I probably would have asked to be assigned to someone else. John didn't get any nicer, and nothing seemed to change with him, but I really enjoyed working with him afterward. There was something very rich about sitting down and saying, "Can we work together? What can we get done?" There are also situations where the client isn't abusive, but the circumstances are especially tough to deal with.
I was working with a man at Shanti House, who had such extensive KS progression on his leg that the leg was literally dead. The doctors had offered him amputation as an option, but he thought as long as he could still walk on it he would keep it. So every so often they took him into surgery and cut away the dead skin, and a wound specialist visited him at his apartment three times a day.
I also met with him at his apartment, and it was the hardest thing I ever had to deal with, because of the smell of decomposing flesh. He would be talking to me and I couldn't really hear him-much of the time I was fighting not to vomit. And I could see that he was aware of it too, and very uncomfortable about it. The sad part was that he was such an amazing man. He was a schoolteacher and had been teacher-of-the-year several times, and all the kids loved him. He was very engaging, very energetic, yet his leg stood in the way of everything. I cried over this. It wasn't something a support group or the Shanti House director could get me through. I had fantasies about convincing him to have the leg amputated. I imagined what it was like for him when he took a taxi to make his doctor's appointments, or when he sat down next to someone in the waiting room at San Francisco General. I imagined everyone had the same reaction as me. But then the woman would come -- the wound care specialist -- three times a day to unwrap this leg and dress it and come back later. I thought this was totally amazing. There was something in her powerful enough to move past this overwhelmingly unpleasant thing to do her job. I drew the strength to go back and see him from her.
The last time I saw him was my last day at Shanti House. He had asked me to come up to say goodbye. I braced myself and walked in-and there was no odor! The wound specialist had been able to find this amazing liquid that completely wiped out the smell. It hadn't been covered by his insurance, so she had advocated [its purchase] for him somewhere, got the funds, and bought it for him. She had made it possible for us to be close again, to touch, to connect for the last time. I'll always be grateful for that. He died a few weeks later.
During the next phase of his education in AIDS caregiving, Danny began to understand the difference between "dying with AIDS" and "living with AIDS." In the late 1980s, many more people began coping with the long-term reality of AIDS in their lives. Medications were improving, care was improving, and people were changing their lifestyles, their nutritional habits, and their outlooks. Most of all, people began to resist the notion that an AIDS diagnosis was a death sentence.
During daily reports at the hospital, a doctor or nurse might make a prognosis that a particular patient wouldn't make it through the weekend. Afterward, I'd go to see the patient and I'd ask, "How do you feel? Do you feel as if death is near?" And the patient would say, "Are you kidding? I'm going on an RSVP cruise in March." Many times these same people who weren't going to make it through the weekend would walk out the front door of the hospital two weeks later. These people say to themselves, "I'm not going to let this illness prevent me from going on my trip. They'll have to work it so I can carry my IV bag with me, because I'm going!" I've had many clients like that, and they're a real inspiration. Once I expected someone would die over the weekend. Betty was in a coma. She was sixty-two, and had been an IV drug user for forty years. But when I came back on Monday, she was sitting up in bed and her sister, who had arrived Saturday, was braiding her hair. When the sister came into the room, Betty had come out of her coma. I saw miracles like that all the time.
The miracles Danny sees all the time contribute to his development as a caregiver, but they don't blind him to those less than inspirational moments, when you can only wish for a miracle to get you through. In those cases, in lieu of miracles, you may have to depend on your own judgment. Danny had to make such a judgment call-in an environment that requires you not to judge your clients -- while he was Shanti's residence coordinator: The Shanti House is a model for independent living. We don't go in and take over. But then Scott, one of our residents, began acting psychotic. He had made a meal for himself and ended up sleeping in it. His apartment was filthy, and he was just a mess. But when I suggested that he go to the hospital, he was very resistant.
I had this conversation with myself. Part of me said, "I shouldn't be interfering. He has a right to sit in his messy apartment." And yet I also noticed the cigarette burns on the carpet, and I had to look at the larger picture: a building with sixty-four people with AIDS living in it, and me insisting, "He has the right to his independence," as the building goes up in flames. So then I asked myself, "What is your intention here?" And my intention was that Scott go to the hospital and get it together so that he could come back. Checking my intentions reminded me that I cared about Scott; I wasn't just trying to get him out of the building. And knowing I cared about him let me tell him that he had to go into the hospital. I made the arrangements, and the doctors discovered that it was a combination of medicines that had sent Scott into a clinical delirium. While they were stabilizing him, we had the maintenance people clean his apartment. When he came home, he was fine.
Clearly there are no hard-and-fast rules for this kind of decision making, but Danny demonstrates the difference between people-managing and caregiving. Danny didn't know the right thing to do for Scott. He had to look inside himself for the answer, and his way of doing that was to ask himself about his intentions for Scott. When Danny deemed these honorable -- and he could because he knew he cared for Scott -- when he knew his decision would be based on what he believed was best for Scott, he could allow himself to judge Scott's situation dangerous, and act. As it turned out, what was in Scott's best interests was probably in the best interest of Shanti House as well.
AIDS agencies that provide volunteer help to clients usually designate one or more people as volunteer coordinators. Shanti has four, and their roles are crucial to the success of Shanti Project. They are the ones who match volunteers to clients; they are also the ones who must decide whether the person who wants to take part in the training to become a volunteer will be an asset to the project.
When I was a volunteer coordinator for Shanti, I interviewed a woman for the training who I really didn't think was going to work out. I had been describing how Shanti works, explaining our peer counseling model, and so forth, and at the end she looked very discouraged, and said, "But I came to Shanti to give hope to people living with AIDS. I want to give hope." I told her that as a practical support volunteer, if she went to someone's apartment and the bathroom was dirty and she cleaned it, and that gave the person hope, that was one thing, but that we don't send volunteers out with the intention of giving hope. And I had to tell her I needed to hear that she would be willing to abide by our policies and the way we worked, because I could just picture her taking over someone's life and deciding he needed to follow a certain path. But she said, "Okay, I'm willing to do that."
About three months later, her client phoned me, and as soon as he mentioned her name, I had visions of her tying him to a chair and hitting him over the head with a Bible. But he said, "I want to tell you that this woman, she's very quiet, she comes to my house, she cleans my house once a week, but when she leaves there is this feeling of peace that's in my house that you could cut with a knife. And this feeling lingers there and it comforts me. And she doesn't say very much at all." It was wonderful. I told her about the call -- she had really gotten it about how you can be an example by what you project -- how you can give hope without telling [people] they need it.
Shanti clients have made many such calls over the years in praise of volunteers who provide invaluable service and do not preach to them. This is a fundamental aspect of the Shanti training model: volunteers do not offer advice about treatment, or promote their version of spirituality, or play therapist. Volunteers do offer practical, functional support, or peer support; they listen, they provide respect and validation, and as Danny demonstrates so well, they really care, which may be the most precious gift of all and for some recipients a first-ever experience.
In many ways, human beings are very similar. When they have problems, it's often over their differences. As a gay, African-American man, Danny values what is different about himself as well as what is different about the people he meets, in and out of the job. One of the things he loves about San Francisco is its cultural diversity, which he told me "challenges white people to open up. But people of color aren't often challenged to be open to other cultures or races, which I've never understood." Danny told me that he was prepared to encounter a certain amount of racism in his job as volunteer coordinator, just because he'd be dealing with the public. All sorts of people were calling, looking for help for themselves or for someone they cared for with AIDS.
I'd ask whether they'd like a man or a woman, and many times they'd respond, "Just don't send me a black volunteer. I don't want any blacks in my house." Part of what allows me to handle racist remarks is because I feel empowered as a black person. I can't say enough how important those early dance teachers were -- their telling us how beautiful we were. They gave me an image of myself as powerful and proud. I still carry a lot of that.
Shanti teaches its volunteers that they will meet and work with all kinds of clients, some they won't agree with, some they won't even like. The point is to help the client. If Danny had told the caller who didn't want any blacks in his house that he was talking to a black staff person, he would not have helped the client, he would have alienated him -- from Shanti, its services, and possibly other AIDS services. But the reality is we often cling for dear life to our biases. We resist seeing through historical, prejudicial beliefs and attitudes associated with different groups -- even though these have been disproven and should have been outgrown. Maybe we hold on to our prejudices because we don't have enough personal experience to revise them. Lacking meaningful contact with diverse groups, we have nothing to go on other than the old saws and stereotypical notions.
These may be so ingrained we aren't even aware of them. This is an area where consciousness raising is terribly important-to test whether our perceptions are based on facts or on biased preconceptions. Such a test is not confined to the standard gender biases or racial prejudices. Shanti trains its volunteers in "multicultural awareness." We ask, Do you have a judgment about eye contact? Did you know that in some cultures it is a sign of disrespect to look directly into another person's eyes? Do you reject illogical thinking? Might you judge someone by his or her style-assertive or low-key? And if so, why? We ask you to monitor how you respond to body language, conversational style, to people with physical disabilities. We ask you to remember when and where you learned your responses. Then you have to decide whether they are appropriate or useful now. And when we find that we do hold prejudices, we don't condemn ourselves, we try to understand ourselves. We do this by bringing the dark thoughts into the light so we can examine them, and when necessary, modify them.
There's danger in reducing diverse groups into neat, easy categories. Talking about "women's needs," or "what to expect from Hispanic patients" only deepens stereotypes. Unless we're very careful, our efforts to train people in multicultural awareness could promote just the kind of stereotypical thinking it is meant to eliminate. But clearly, ignoring differences is not the answer, either. Culture, gender, race, sexual preference, education-all these, as well as one's personality and psychological functioning, interact to make the individual unique.
The solution seems to be what Danny has found to be so useful in his caregiving: to treat each individual as unique. As much as possible, to take the factors that contribute to one's individuality into consideration; to be aware of our similarities, and of any tendency toward bias, toward prejudice, or toward judgment when judgment is not called for. We try to strike a balance between embracing the uniqueness of individuals and understanding the diverse backgrounds that people with AIDS and their caregivers are coming from. It's not a question of one or the other, but of one and the other: accommodating and respecting uniqueness and diversity at the same time.
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