Taking Control

At some level, everyone knows that, as Robert Burton wrote in The Anatomy of Melancholy, “[In this life, we are] subject to infirmities, mis­eries, interrupt, tossed & tumbled up and down, carried about with every small blast, often molested & disquieted upon each slender occa­sion, uncertain, brittle, & so is all that we trust unto.”

One of the conditions of life is that we are susceptible and vulnera­ble, and so is everyone else we depend on.

Getting used to the wolves, for people affected by HIV infection, means that in spite of an inescapable infection and the inevitable ac­companying emotions, they’re in charge. They make their own decisions and determine their own outlooks. “I’m made of good stuff,” Dean said, “and the stuff I’m made of doesn’t change because my situation changes.” “Facing what I’m up against gives me a new frame of mind,” said Alan. “I expected a lot of life that I might not get. But I will do the best for myself and be an inspiration to others. I think we have more control over our lives than even we think we do.”

When Alan said adjusting to HIV infection gave him a new frame of mind, he had been living with the infection for six years. Since then, however, he has begun taking new drugs and his world has changed again, giving him an even newer frame of mind.

Dean’s world changed in much the same way: “I got pneumonia. I lost 30 pounds. I had 12 CD4 cells and a half-million viral load. I was on the road to dying and accepting it. I looked God in the face and said, ‘Take me, I’m yours.’ He didn’t. He shoved me right back here on earth. I got all the drugs in the world. That was five months ago. I’m alive now and feeling ok, but I can’t stay out and party.”

Living with HIV infection is not easy. But easy or not, people do get used to the wolves, do gain a sense of control, do find a new frame of mind. Here are some nice rules that in spite of their simple-mindedness, work.

Consider Changing Your Usual Tactics

Most of the tactics people use to get through their lives are appropriate to normal circumstances. HIV infection, however, is certainly not one of life’s normal circumstances. So people occasionally have to consider switching their normal tactics, their usual style of living, the way they normally go about things. Alan has been a successful professional whose success was partly the result of concentrating hard, working persistently, passing tests, and solving problems until he got what he wanted. But HIV infection and his new medication present him with different kinds of problems: his job is now too demanding, and he needs more emo­tional support. For these problems, Alan’s usual tactics—concentration, hard work, and persistence—no longer work. So he’s gradually chang­ing his tactics. “I was more aggressive in the workplace than I am now,” he said. “For the past ten years, I was a real high producer.

Divide and Conquer

Cut overwhelming and insoluble problems into manageable, solvable ones. People have various ways of doing this.

Divide problems into those that have solutions and those that do not, and focus on the problems that have solutions. Focus on short-term problems. What this tactic comes down to is this: avoid looking at the whole picture and trying to solve everything at once. Steven says he lives from one day to the next, and does only what is necessary to get through each day. He says he solves only small problems, one at a time, and trusts they will add up. Edward Carroll said almost identically, “It really is the old adage of taking each day as it comes—I don’t think a whole lot about next week or next year.”

Dean says he has learned to stop worrying about overwhelming problems. He tries to change only what he can: “I always tried so hard to change things I couldn’t. Realistically I can’t change my problems— the only way not to have problems is to be dead. And I can realistically change myself. I forgot I could make myself happy. I am as happy or un­happy as I decide to be. I’m surprised at how happy I am, and it’s not in spite of the problems. There are happy people with problems.” In short, take it a little at a time.

Expect of yourself only what is reasonable. Try not to borrow trou­ble or worry about what might happen or cross bridges before you come to them. Be easy on yourself.

Take a Break

“With this disease,” says Steven, “you need an escape hatch. Sometimes I zombie out in front of the TV.” Lisa goes for long walks, reads what she describes as “trashy love stories,” and drives out into the country. People go away for a weekend, plan an evening away at a play, an opera, a concert, a sports event, a movie.

A lot of people do relaxation exercises; they say relaxation gives them the necessary distance from their problems. Relaxation exercises are part of performing artists’ training, some psychotherapies, medita­tion routines, and yoga practices. All exercises are pretty much the same. Go into a room, maybe your bedroom, and close the door. Ask anyone else in the house to make sure that you are not interrupted. Lie down and get comfortable. Beginning with your feet and working up to your face and scalp, muscle by muscle, first tense the muscle, then relax it. Re­peat the tension and relaxation with each muscle several times before going on to the next muscle. Eventually you will notice that you breathe more slowly and regularly, that your body relaxes, and, finally, that your mind relaxes. In this state of relaxation, imagine yourself in a place you know about that is comforting to you, a place you’ve always wanted to be, a place where you have been free and have felt happy, where you feel safe and calm. Stop the exercise when you feel like it. You can either do this relaxation on your own or buy recorded tapes that direct you through the relaxation or join a group that does the exercises together. In any case, mental health professionals often know where you can get help learning the exercises.

When Edward wants a break, he listens to music: “Music is a great salve for me,” he said. “I listen to music that’s evocative to me of places and events that I want to remember fondly. I can conjure up places, I can close my eyes and feel things. Those memories are really the sum of my life. The places where I found real joy in life I can revisit.

Give Your Feelings Their Due

When you feel bad, go ahead and feel that way. Tell yourself, as Dean does, “I’m just tired of this. I don’t see how I can do it any more.” Cry, stare into space, refuse to talk, stay in bed, write your terrible feelings in a private journal—go off by yourself and do whatever expresses the bad feelings. “I don’t believe in this crap of, ‘You’ve got to be happy all the time,’” says Steven. “I’m not taped together as well as I thought I was, or more likely, the tape was old. Anyway, sometimes I fall apart and just feel awful.”

In short, give your feelings their due. This is not giving in. It is ac­knowledging the reality and size of the problems you face. “This is not the best thing that ever happened to me,” said Rebecca. “My life was much better. I feel like I’m being negative, but I’m not necessarily being filled with light.” Somehow, such acknowledgment is easier than trying to control how you feel, or going from crisis to crisis and never feeling anything. These feelings, once acknowledged, don’t last as long as you might think. They seem to wear themselves out and disappear. “After I’ve been feeling hopeless for a while,” says Dean, “the feeling lightens up, and I feel that I’ve really got a good road ahead of me. I feel like I’d just like to keep going.”

The bad feelings will certainly come back again—Steven says he now knows when he is likely to feel bad and sets aside time for the feel­ings: “I plan for falling apart,” he says. But when the feelings do come back, you will have them in better perspective. That is, you will know that the feelings are both real and temporary. You will know that the sit­uation hasn’t changed, only your view of it has. For good reasons, you feel bad; and after a while, for reasons just as good, you will feel better.

Learn to Deal with the Medical System

A crucial part of living well is taking control.

The next best advice is to ask questions. One reason that people don’t ask questions is because they feel intimidated. Medical people of­ten don’t understand that they are intimidating. If you don’t ask them questions, they assume you already know the answers, not that you’re afraid to ask. Another reason people don’t ask questions is because they worry about offending their physicians. Any good physician will not be offended by a question. Neither of these is a good reason not to find out what you want to know.

Ask how to get medical care at night and on weekends. Get pushy if you are in pain; pain is usually unnecessary. Ask what’s happening with new treatments. Ask what tests you are being given, what those tests detect, what the alternatives to the tests are. Ask for a second opin­ion on a diagnosis or an interpretation of a test. People worry especially about asking for second opinions; but this is a reasonable and prudent request, and physicians are not offended by it.

In general, you have a right to know about treatments, medications, and procedures. Patients in hospitals have a whole set of rights; chapter 7 outlines them.

It is a good idea to write questions down before visiting the doctor: most people forget some or most of what they want to ask. Questions about medical care are best addressed to your doctors. Questions about the medical system and resources for medical care in general are best ad­dressed to a social worker.

Edward Carroll, a long-time activist who writes columns on AIDS research, has had to teach himself the relevant medicine. “You have to understand enough of what the doctor is telling you,” he says, “so you can make a rational decision about your care. I think good patients with good doctors survive longer and live better than bad patients with good doctors.”

Relabel the Negative; Focus on the Positive

Relabeling means redefining a troubling situation so that it seems more benign (see chapter 5). Relabeling is related to thinking positively: any situation, no matter how bad, also contains the possibility for something good. The idea is to focus on the possibilities for good and define the sit­uation in those terms. “If I approach it with the right attitude,” says Steven, “I can see the blessings.”

Call something a challenge rather than a struggle, a preference rather than a need, an opportunity rather than a problem. Alan says even though life “is tough or difficult, if I look at it from a different angle it’s just grace. I have a good life and it’s by my design.” And some people manage the near-miracle of relabeling HIV infection itself. “This infec­tion gave my life purpose,” said Edward. “I never aspired to much of anything, I just sort of poked along at life. I always worked hard, but never with any goal in mind. And this infection gave me the opportunity to do good and useful work. In very many ways, it’s the best thing that ever happened to me. I’ve done my best work. I’ve met the best people I’ve ever known. Who can complain about that?”

Shakespeare’s Hamlet says, “For there is nothing either good or bad, but thinking makes it so.” With relabeling, people come to feel they’re in control, they’re calling the shots, they’re in charge of how they’re af­fected and what their reactions are. By relabeling they shape the char­acter and quality of their own lives.

Eat Well

In general, people with HIV infection should be careful about their nu­trition; a balanced diet including all the food groups is important. For specific advice, ask a registered dietitian. (A registered dietitian is usu­ally trained and licensed in nutrition and problems of nutrition; nutri­tionists need not be either trained or licensed.) Registered dietitians can be found at hospitals, clinics, and county health departments, and in pri­vate practice.

Dietitians often advise people with HIV infection on issues related to lipodystrophy. The main benefit to dietary advice is when blood lipids—cholesterol and triglycerides—are too high. Dietitians can’t usu­ally give useful advice about fat redistribution. Sometimes, dietitians’ ad­vice also helps people avoid infection by microbes like Salmonella that live in perishable food. Such infections occur only rarely in people with HIV infection. If you want to be extra cautious, however, the microbes’ growth can be inhibited by very hot and very cold temperatures, and by cleanliness. Keep hot food hot: cook at 165 degrees F to 212 degrees F, keep warm at 140 degrees F to 165 degrees F. Keep cold foods cold: re­frigerate at 40 degrees F, freeze at 0 degrees F. Keep everything clean: wash fresh fruit and vegetables. Do not eat moldy food. Do not eat rare meat, raw fish, or raw meat, and do not drink unpasteurized milk. Thaw meat in the refrigerator, not at room temperature. Do not eat raw eggs; cook eggs thoroughly.

Encourage Yourself

Protect your physical health. Eat well, sleep enough, cut alcohol and smoking down or out. Exercise reasonably and regularly; just going for a walk is great exercise. Relax when you can: read, watch a movie, do re­laxation exercises. Take good care of your body; give your body a chance to fight the infection.

Be kind to yourself emotionally. Steven gives himself pep talks: “When I feel good,” he says, “I let myself know that. I tell myself, ‘Steve, you feel great today.’ ” Dean says that every day he rates how he feels on a scale of one to ten: “It’s mostly nines and tens,” he says.

Helen says that her best support is herself. “Basically, it comes down to me,” she says. “I have to support myself, and when I do something well, I pat myself on the back.” You can pat yourself on the back for the littlest things: “You certainly did a good job of polishing your shoes,” you can say, or “My, but those fingernails are clean.” The reason for the pat is less important than the pat itself. The pep talks Rebecca gives her­self are more like inspirational lectures: “Every moment of my day is to lift myself up,” she said. “Throughout the day I say, ‘Jesus is healing me.’ I tell myself I am healed, I am healed. I don’t accept this illness at all. I talk to this virus and tell it to get out of my body. I’m going to beat this.”

If an emotional problem seems too severe or does not go away, or if you are seriously considering suicide, or if you simply want someone to whom you can express all your feelings, see a mental health professional.

Confront the Possibilities a Little at a Time

Once, when Dean was in the hospital, he roomed for a while with a man who was in the advanced stages of AIDS. “I was glad to get out of that room,” Dean said. “As long as I was there, I needed to confront the pos­sibility that what happened to him would happen to me. But confronting that possibility seemed necessary, to deal with this disease as positively as I am.”

Confronting the possibilities means, for Dean and others like him, understanding and admitting that the fact of HIV infection cannot be annulled. Steven said, “I have to deal with this whether I want to or not.” It is now a part of life. So are the possibilities of clinical appointments, physical discomfort, and complicated and unforgiving drug regimens. And so are the emotional reactions to all this. “HIV makes me face things I didn’t think I’d have to face,” Helen said.

Confronting everything all at once, however, is overwhelming and unnecessary. Face what you are ready to face, and only when you are ready. When you are tired of thinking or feeling, stop and rest. Do not push yourself because you or someone else thinks you ought to be fac­ing things. Face a little at a time.

Positive Denial

Denial has a negative sound, as though you weren’t facing facts. But whether denial is positive or negative depends on what you are denying. Denial is negative only if people deny the facts of their infection and live inappropriately: drink too much, ignore their drug regimen, practice un­safe sex, or avoid seeing a doctor.

Denial that admits both the realities of today and the unpre­dictability of tomorrow is positive. No one knows what new treatments will come along. No one knows how any one person’s body will handle HIV infection.

Positive denial is nearly essential in dealing with this disease. “Friends ask me how I deal with the diagnosis,” said Rebecca. “I tell them I don’t deal with it. I’m not denying the illness, I’m denying it access to take over my life.”

Your life has many aspects, many parts to it, many things you are interested in, many things and people you love; and HIV, though im­portant, is only one aspect of your life. “I’m not denying I’m sick,” Dean said. “But I’ve made up my mind not to act sick, not to just sit around being a sick person.”

Positive denial also helps people feel feisty about the disease. They feel like they are not just victims of some virus; they are people who have some say in how their lives are run. “Steven Charles is much bigger than this infection,” said Steven. “I’m not letting the illness be that big a deal. I’ll be changed—it will always be a big part of who I am. But I haven’t lost control. It makes me feel good every day, the things I do to heal my­self. I think, this is going to pay off, this is going to pay off.”

Find Comforts and Interests in Things Outside Yourself

“Don’t lock yourself in,” says Steven, “get yourself out.” The world is full of pleasures, beauty, people to get to know, wrongs that need to be righted, jobs that need to be done, places to visit, adventures to be had. People find, in things outside themselves, anything from a trivial and mo­mentary distraction to a profound interest in living. The possibilities are limitless.

Some people make their surroundings beautiful and comforting. Helen says she tries to make the place where she spends her time a space she enjoys: “I like brass and glass. I like plants—they’re another life. I like a little elegance. Things should be as fine as they can be.” Rebecca repainted her house: “I’ve made it warm, restful, and interesting with colors. These colors reflect a color of light that looks good on people. People look wonderful in my house. And my own house is a comfort to me.”

Some people find things they like to do, or things they have always wanted to do but have never done. Helen gardens: “I crave being out there. I put all these bulbs in, and now I have next year to look forward to. Plus I also have a room I want to redecorate.” Dean plays music and reads: “Thinking about HIV is stressful and if I can drive it out of my mind, that’s relief. I play music, the guitar. I’m in a band and we perform once or twice a month. It’s a great distraction, very fulfilling. Mostly I read. Dickens is the best. If you’ve got HIV, just go out and get the Dick­ens library.”

Some people teach themselves new things because learning, they say, takes them out of themselves. Steven became interested in archaeology and astronomy: “Maybe, in the light of ancient history and the immense universe,” he says, “my disability insurance isn’t all that important. Now I wonder why people worry about things that don’t matter all that much.” Alan had decided to make a career in banking, but his training was in music. As he’s relaxed his focus on his career, he has turned back to his music. “My viral load is undetectable,” he said. “I’m going to buy a new instrument—which is like buying a car. I could make a living in a professional orchestra. Maybe now I can do what I need to do, what my heart tells me to do. It’s here, the fire is still burning, I’ll do what it takes. I deserve to make a good penny making music.”

Some people spend more time with people they love and enjoy. Some people become activists. Lisa was going to run for city council, but de­cided instead that she could do more putting out a newsletter, so she raised money and started one: “I think you should speak up, be visible, be yourself.” Steven began doing public speaking and recommends it to others: “Get interested in legislation,” he said, “in outreach; contact speakers’ bureaus, call people up. I’ve gone from being a passive type to being a real civil disobedient type.” Edward is doing all this and more: he taught himself immunology, helps run a money-raising organization for which he single-handedly puts out a newsletter on AIDS research, and is editor of a local newspaper for which he writes a regular column on AIDS. Dean is writing a book about his experiences with AIDS, and says the book gives him a positive attitude: “It’s leaving my mark. It’s doing what will help other people.”

Some people help others in different ways. Many become buddies through AIDS-advocacy programs. Dean volunteered in a hospital on a floor for children with cancer. “It was hard on me to see those kids so sick,” he said, “but it put things in perspective for me. I thought, ‘Who am I to complain? They’re so good and so happy.’” Helen is less ambi­tious but no less helpful: “I visit the woman who used to be my room­mate in the hospital. She won’t eat anything. I make her get out of bed, sit in a chair, go for a walk, and then I give her jellybeans.”

Maintain Equilibrium

Living with HIV infection requires balancing hope and uncertainty, confidence and worry, courage and despair. The balance is tricky, and many people with HIV infection, whether or not their health has im­proved, manage it by consciously lowering the amount of stress in their lives.

“I take my time, nap, read, I try not to get upset any more,” said Dean. “Also I get a massage twice a week. I don’t drink or smoke. I get eight to nine hours of sleep a day. I eat three good meals a day. I work out, though I don’t exhaust myself. I live more cautiously, take a sweater when I go out, things I wouldn’t have done before. People in my life I had problems with before, I started contacting them—they were very open, very friendly. I just try to be nicer to people than I was before. It makes you just feel good.”

Rebecca has to contend not only with the same balance but with side effects of the drugs. “I look normal but I get tired. And I can throw up very easily. A good day is when everything is in symphony, when I keep everything down, don’t feel tired. One bad day—even just emo­tionally bad—and I can’t rebound. I walk a fine line every day. If I have my routine and don’t push myself, then I can allow this illness. I can deal with it. I tell myself, ‘Don’t rush, don’t rush.’ I’ve had to stop be­ing so achievement oriented. I’ve always had a goal, but stress sets me up for being sick. I stay at my house and do things my way. I want so much to have a normal day every day. Maintaining equilibrium requires a lot of work.”

By not pushing themselves, Rebecca and Dean maintain an equilib­rium, which allows them to not be overwhelmed by their problems and to enjoy life. Rebecca’s days are balanced: “I walk my dog, clean the house, exercise. I go for a power walk. I watch re-runs of Andy Griffith’s show; I love that Barney. They all care about each other. Sometimes I’ll buy a soft t-shirt. I walk through this development and look at the grass, the flowers. There’s so much beauty around us. I feel so much better— I see God, see goodness. This is something I never would have done be­fore.”

A Positive Attitude

People affected by HIV infection agree on this, that the single most im­portant thing they can do is to keep a positive attitude.

“I’ve become more conscious of the quality of life,” Dean says. “Now I’m concerned with living before I die, and living every minute. Sometimes it’s like a violent smack: wake up and enjoy life.”

Steven has feelings that are almost identical: “I don’t know where my ability to enjoy life comes from. I love life so much, I want every minute. I keep myself occupied and my mind working. I compare myself to other people—I still have advantages others don’t. I’ve been fortu­nate.”

Keeping a positive attitude can change the way people think of themselves. They think of themselves less as people with a disease and more as people who are alive. They say they know how to be alive and will live their lives the way they know how. They come to trust their own resources, to trust themselves. Sometimes they even become different people: “I’ve never liked telling anyone what’s going on with me,” said Alan, “but dealing with this disease has made me more open than any time in my life. I’m voicing my opinion more, am more self-confident.”

Keeping a positive attitude can also change the way people see other people. Helen said HIV infection had changed her, too, then added: “I really want to do something to help people, not just people with HIV and AIDS. Maybe through my trials and while I’m still here, I can just be an example. We’re all connected and if you do good for others, you do good for yourself.”

And finally, keeping a positive attitude can also change the way peo­ple feel about the future. “I’m not going anywhere any time soon,” Alan said. “I’m thinking about the future and I’m not talking 5 or 10 years, I’m talking old age.” Dean’s partner said the same: “Sometimes I see us being old together.” “I’m alive and I’m well, so I’m brave enough to look down the road to the future,” said Rebecca. “Who knows, maybe my husband and I can have kids. I’d really like that.” And Helen, whose vi­ral load is still detectable, says she doesn’t know what the future holds but she won’t give up: “I’ve worked too hard, I’m a good person, and I have a will power that won’t quit. I want to make something positive out of something negative.”

Dean has a motto he uses to keep himself active and interested in life: “A body at rest stays at rest,” he says, “and a body in motion stays in motion.” He borrowed the idea from his high-school physics class and, he says, “I say it over and over. I use it to think myself well.”

People come to believe that life need not be perfect or infinite or cer­tain to be good and that hope can come in little packets and delight can come from little things. “I’ve been able to cope and feel happy and de­lighted about living,” said Steven. “A lot has to do with your attitude toward life. You like it or you don’t.”