Surviving and Thriving with AIDS: Hints for the Newly Diagnosed

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only! The medical information herein is severely outdated!

SO, YOU'VE JUST BEEN DIAGNOSED WITH AIDS....

AIDS 101

by Michael Callen

As someone who has been visible as a publicly-identified Person With AIDS almost from the beginning of this epidemic, I've been asked to give an "AIDS 101" to many a frantic, newly-diagnosed PWA. I thought it might be useful to try to recreate one of these conversations.

Q: What about treatments? What should I take?

A: I assume what you mean by this is "What drugs should I take to cure AIDS"--not "What drugs should I take to cure specific opportunistic infections." It's an important distinction.

Before I answer the question about drugs to treat the underlying immunosuppression, let's briefly review the drugs used to treat Pneumocystis pneumonia (PCP), Kaposi's sarcoma (KS) and the other opportunistic infections (O/Is) associated with AIDS. (By the way, you'd better get used to talking in shorthand. KS, OI's, crypto, PCP, PWA, PWArc.... Don't worry, you'll catch on. If you don't know a particular acronym or abbreviation, by all means, ask.)

Although there are a few opportunistic complications of AIDS which don't yet have any agreed upon drugs of choice (such as cryptosporidiosis, a diarrheal infection), most of the AIDS O/Is are treatable. And by now, most doctors who deal with AIDS on a regular basis have a pretty good handle on what drugs work best for what illnesses, which drugs have which side effects, and what little "tricks" may minimize those side effects.

For PCP, there are basically two drugs used:

One is a "sulfur" drug which goes by various names. (The two most common are Septra and Bactrim.) Like any drug, Bactrim has potential side effects and is not a drug to be taken lightly. For some reason, many people are allergic to Bactrim and have to be switched to the other drug most commonly used to treat PCP: pentamidine. With either drug, always be on the lookout for side effects.

Pentamidine is a very toxic (poisonous) drug which has been found to be effective against most cases of PCP. It is generally administered through an intravenous (IV) tube and treatment lasts two to three weeks. Because it is such a powerful and toxic drug, it may cause serious and unpleasant side effects. As with any drug you take, you should educate yourself about possible side effects and be on the lookout for any sign that you're having an adverse reaction.

Rule #1 for any treatment choice you make: Don't suffer needlessly! Don't be stoic about side effects. At the first sign, tell your doctor. Maybe she or he can modify the dose, or spread out the time between treatments or give you another drug to block a particular side effect.

Other drugs, such as dapsone or fansidar, have been used to treat PCP, but for reasons unknown to me, these are the exception, not the rule. As always, discuss various drug options with your physician.

Bactrim is often taken daily as "prophylaxis"--taken to prevent the further recurrence of PCP. At the present time, I'm not aware of anyone taking pentamidine prophylactically, but there is a lot of excitement on the PWA grapevine that aerosolized pentamidine to prevent recurrence of PCP might be available soon. The advantage of this, I hear, would be that it would require only one inhalation directly into the lungs once a week or so. From what I hear, this cuts down drastically on the unpleasant side effects generally associated with pentamidine since putting the drug directly into the lungs means you don't have to build up high body concentration of pentamidine in order for the drug to have its effect. Keep your ears tuned in for the latest gossip on prophylaxis. (I'll talk more about the concept of prophylaxis a bit later.)

In terms of treating KS, the next most common opportunistic complication of AIDS in gay men, it's important to point out first that many people with KS opt for no treatment at all. There have been instances where KS has spontaneously regressed--disappeared without any treatment whatsoever.

The decision about whether or not to treat KS is an important one. Although I don't have KS, I've known and talked with many PWAs who have agonized about the decision of what to do about it. The first thing you should realize is that you have KS because you're immunosuppressed; therefore, you have to ask yourself whether it makes sense to treat a cancer you have because you're immunosuppressed with wildly immunosuppressive chemotherapies. If the KS you have is spreading rapidly, or is life-threatening (that is, on a vital organ), then the risks of treatment definitely outweigh the risks of not treating. However, if all you have is one or two lesions and your KS doesn't seem to be getting worse, then you probably have the luxury of putting off a decision about treatment. It's my view that you shouldn't rush to make a decision as important as chemotherapy if you don't have to rush. If you have the luxury of not being in an immediately life-threatening situation with KS, take your time. Talk to other PWAs. Talk to several doctors. Think it through.

As is discussed elsewhere in this book, there are many approaches to treating KS. There's radiation therapy--either directed to a specific lesion or total body radiation. There are various chemotherapies--drugs taken singly or in combination which have anti-cancer activity. Some of these are more immunosuppressive than others. Some make your hair fall out; others don't. Some make you nauseated; others are less nauseating. There is interferon and interleukin. Some people have begun to paint their lesions with a photographic chemical called DNCB. And I'm sure there are treatments I haven't heard of. A KS support group--a group of PWAs who all have KS who gather to talk about living with KS--is one of the best places to meet others who have made decisions about treatment and who are willing to share information with you.

The point is, there is no one treatment which has been proven effective against KS in every instance. Believe me, if there were such a drug, everyone would know about it. Some people respond very well to one drug; that same drug may cause other's KS to spread. A key principle which will run throughout my AIDS 101 lecture is to ASK AROUND! Seek out others who've been in the same situation you are. What choices did they make? Why? What was it like? Talk to your doctor. Ask hard questions about dosage and side effects. How long will treatment last? It's a difficult decision, but in the end, it's yours to make.

As for the other opportunistic infections, different ones obviously have different treatments. For example, CMV infection has been treated effectively with an experimental drug called DHPG. There are several drugs which have shown some benefit against toxoplasmosis and TB. Again, each drug has its own side effects which you must be aware of. Again, ask around. Get as many opinions as you can.

Q: But what about treating AIDS itself? Isn't there anything I can take to restore my immune system to normal? What about all these experimental drugs I keep hearing about?

A: Look. If there were a cure for AIDS, it would be big news. It would be Nobel Prize time, so I think we can assume that no one is sitting on the cure for AIDS. The sad fact is, no treatment has been proven to restore normal immune function in someone with AIDS in every instance. There is as yet no cure for AIDS--that is, no cure for the underlying immune deficiency.

However, there are drugs which are being tested. These drugs break down into two basic categories.

There are drugs, such as ribavirin and isoprinosine, which have been around for awhile but whose efficacy (the technical term used to describe the effectiveness of a particular drug in treating a particular disease) in terms of AIDS has not yet been proven. In other words, these drugs have been developed and tested for other diseases. Since they have already been tested in human beings, a good deal is known about their toxicity (which is the technical term used to describe the unpleasant, harmful and occasionally life-threatening side effects of a particular drug.)

So, the experimental trials you hear about regarding these drugs are designed to determine whether or not a particular drug improves the immune functions of people with AIDS. There have been no reports published in reputable scientific journals of someone diagnosed with frank AIDS regaining normal immune function through the use of drugs. However, there is a good bit of excitement--and certainly a lot of talk on the PWA rumor mill--that drugs such as isoprinosine and ribavirin may be useful for people with lymphadenopathy and AIDS-Related Complex (ARC) in preventing progression to frank AIDS.

Not to bore you with my own biases, but I do not accept the simplistic notion that what we call AIDS has a single cause. It has always been my observation that those of us who develop AIDS have a history of being subjected to many, sometimes different, assaults upon our immune system. A number of important and interesting differences among the so-called risk groups which strike me as pretty glaring evidence that something different is going on in each. For example, I was shocked to learn that hemophiliacs, IV drug users and the other so-called risk group members who have AIDS rarely develop KS. KS is largely an AIDS complication for gay men. (We gay men with AIDS are something like 20 times more likely to develop KS than members of the other risk groups.) If AIDS is "caused" by one virus, why would it have such different opportunistic complications in different people?

What others call "co-factor," I consider causative. I mean, if gunpowder is some combination of saltpeter and sodium, which one "causes" the explosion?

In any event, I would caution that whatever is the true cause of AIDS, each one of our bodies is different. And the same drug can affect two people differently. For example, I have friends who swear that ribavirin makes them feel better and who claim that their blood tests show some improvement. I have other friends who say their blood tests showed no improvement or even got worse after drug treatment. And friends who say they had to stop taking a drug because of some side effect--fever, anemia, nausea, nervousness, insomnia...you name it.

Again, the same rule applies here. Unless you're really sick and getting sicker, you should think twice before being a guinea pig. Until reliable data is in, I think it's wise to wait and see.

The other class of experimental drugs is known as "Phase I" drugs, which means they are drugs which haven't really been given to humans before. These drugs have been given to animals and scientists have some idea of their toxicity. But Phase I drugs are drugs whose efficacy and toxicity are unknown. Meaning they don't know if it will cure you or kill you.

Again, my own bias is that the decision to take experimental drugs should take into consideration how sick you are. If you've had pneumocystis four times and you're clearly getting worse quickly, you may feel that you haven't got a lot to lose. In other words, the risks of consenting to take an experimental drug probably outweigh the potential benefits. But if you've had pneumocystis once, and you're on Bactrim prophylaxis to prevent a second recurrence of PCP, and you're basically feeling alright, you should think long and hard before being a guinea pig for a drug which may make you worse and can have serious and unpleasant side effects.

You should know that taking one experimental drug may mean that you'll be disqualified from taking another experimental drug that comes along later. See, the scientists like to have "pure" data. I could easily imagine the following hypothetical situation: You took drug X when it was in vogue and now you want to take experimental drug Y, so you'll be disqualified from the drug Y trial because if you get better, they won't know whether it's because of drug X or drug Y.

Q: But I've heard such good things about AZT and some of the other drugs. You sound so negative.

A: Well, I guess I am. I guess I feel that the federal government's track record of drug trials is pretty abysmal. Not only have they not found anything that works, but I feel that they have demonstrated a lack of concern for our lives. I base this charge on the length of time it has taken them to do drug trials, the small number of people who are getting experimental drugs at all, and the fact that the protocols are designed with an apparent disregard for prophylaxis.

Q: What exactly is prophylaxis?

A: I'm glad you asked. Prophylaxis means taking some drug to prevent the occurrence or recurrence of a particular disease. Specifically in terms of AIDS, it means taking Bactrim or Dapsone or Fansidar or, as I mentioned earlier, aerosol pentamidine to prevent the recurrence of PCP. It is shocking to me that not every doctor treating AIDS insists that PWA and PWArcs take drugs to prevent PCP. PCP causes the largest percentage of AIDS fatalities. And yet many physicians--and the federal government--don't seem to take prophylaxis seriously.

I thought it was outrageous that the protocol for AZT seemed to require that people with AIDS be taken off all other medications in order to qualify for AZT. Now, I understand that the feds want "clean" data. That is, if there is improvement in those taking AZT, they'd like to know that it's attributable to AZT. But folks, this is our lives! Why should I stop taking Bactrim, which I am reasonably certain is keeping me alive, just so they can have clean data? It showed me that the government scientists designing these protocols are obviously not clinicians who have daily, hands on experience treating people with AIDS. I knew friends who had just gone through the hassle of having a Hickman catheter installed so they could take DHPG for CMV infections who had to make the agonizing choice of discontinuing DHPG so they could qualify for AZT.

In fact what seems to have happened in many cases--at least as reported on the PWA grapevine--is that many of those who discontinued prophylactic drugs to get AZT started getting sick again. Not from the AZT, but from the diseases that the prophylactic drugs had been protecting them against. Many of these people had to be taken off AZT so that they could be put back on their prophylactic drugs. In other instances, people simply lied and said they'd stopped taking their prophylactic drugs when in fact they continued to take these drugs along with AZT.

Now, I think this is a terrible position to put PWAs in. It's my opinion that if you have to lie to get drugs which you believe will save your life, then lie. I hasten to add, however, that it's important that your own doctor know the truth. There is always the possibility when you're taking several drugs that you could have a drug interaction. That is, you may be able to take two drugs separately with no problems, but if you take them together, you may have a reaction. So by all means, make sure that someone--especially your primary physician--knows the truth at all times.

Q: Is there proof that prophylaxis works?

A: It is my understanding that there haven't been any studies yet published which conclusively demonstrate that prophylaxis works; but prescribing drugs to prevent PCP certainly is common practice among many physicians with large AIDS practices and it is the general sense that prophylaxis works. Again, my own bias is that it makes sense. I am personally taking three Bactrim a day. If aerosolized pentamidine becomes available, and if it's true that you only have to inhale it once a week, and if further it's true that the side effects are minimal, then I'll probably switch to aerosolized pentamidine to protect myself from PCP. Whatever choice you make, be sure to talk to your doctor and get second and third opinions. Also, discuss treatment options with other PWAs.

Q: Have you taken any experimental treatments?

A: Yes and no. I've taken isoprinosine, been plasmapheresed (a form of blood cleansing where plasma and immune complexes are removed), taken naltrexone, been burned by DNCB, gotten transfusions of packed red cells, gotten gammaglobulin, taken Bactrim, dapsone and acyclovir (IV and oral), and whip up daily in my blender the poor man's AL-721 (lecithin, oil and juice). (See recipes on pages 57 and 58.)

You will notice that nothing in the list above is a "Phase I" drug, that is, none are drugs which have not been tested in humans before. I have had the luxury of being generally well enough that I haven't felt compelled to take the risk of using very toxic drugs whose effects on humans haven't been proven.

My own personal rule of thumb has been to ask two questions: (1) is there a theoretical reason to believe that a particular drug or therapy will have some benefit? If so, (2) does it have any bad side effects? If the answer to the first question is yes, and the answer to the second question is no, then I'm likely to try it. I must confess that according to the standard blood measurements, my immune system has not improved. In fact, my T-4 (helper) cell count has consistently hovered near zero over the last several years. (Not that I believe the T4/T8 ratio by itself means much, but over time and in the context of other immunologic parameters, it does indicate immunosuppression.) However, I'm obviously still here. I must be doing something right.

But I can't make this point often enough. (I'll put it in bold for emphasis): The decision of whether to take drugs, experimental or not, is a decision which only you can make. It should be an educated choice, since the stakes are so high. You may well live or die because of the choice you make. Knowledge is power. Ask around. Get as many different opinions as you can, then go off by yourself and sort them out and make your own decision.

Q: Where can I find out information about what experimental drugs are available? How can I get them?

A: Ah, the toughest question of all. Basically, by the time you hear about an experimental drug trial, it's probably filled. One of the main frustrations of most PWAs is trying to nail down specific information about drugs. Project Inform in San Francisco (1-800-822-7422) gives some information about isoprinosine and ribavirin. The American Foundation for AIDS (AmFAR) compiled a list of experimental treatment trials which was out of date almost the day it was published. The PWA Coalition and GMHC are beginning discussion about how to keep on top of drug information and how best to make current drug information available to PWAs and PWArcs. You can try calling various medical centers or calling the Centers for Disease Control or the National Institutes of Health, but basically no one seems to know every trial that's going on.

Two things will keep you as up to date as anybody:

(1) Network with other PWAs. The PWA grapevine is as reliable and as speedy as any around. Also the PWA Coalition Newsline is full of chatty accounts of individual PWAs' experience with particular drugs. The Coalition also sponsors forums on the latest treatment information.

(2) Select a doctor who is connected with the "AIDS mafia"--that select handful of researchers and clinicians who are controlling the American response to AIDS. A relatively small group of doctors handle most of the AIDS cases. These doctors tend to talk to each other and to federal researchers and tend to know in advance what drug trials are being planned and how to get in them.

Q. What should I look for in a doctor?

A: One of the most important decisions you will make is the choice of a primary care physician. Hopefully, before you got AIDS, you were lucky enough to have established a good relationship with a physician. Maybe you're even lucky enough that your physician happens to be one of those mentioned above who has had a lot of experience managing the care of AIDS patients. If not, or if you're unhappy with your doctor, there are several things you should look for in a doctor.

1. The doctor should be competent to deal with AIDS or honest enough to know when s/he should refer you to someone with the knowledge you need. Basically, a doctor who would be threatened by a second opinion would turn me off.

2. I would say there's no substitute for hands-on experience with AIDS. Why should you be your doctor's first AIDS patient? Let her or him make their mistakes on someone else.

Now, I shall try to say this delicately. AIDS is serious business. And many doctors aren't equipped to deal with the complexity of managing a case of AIDS. Many "family practitioners" or "general practitioners" are simply not prepared to deal with the life and death issues which managing the care for a patient with AIDS inevitably presents. Your doctor(s) should be sophisticated enough to keep up with the highly technical studies published weekly in medical journals. You're fighting for your life; you want as your doctor someone with the intellectual capacity and the discipline to stay on top of the fast-breaking scientific developments. At least, that's my bias.

3. Groping for an analogy, I often joke that doctors are like stereo equipment. Most any brand will play your records; but the important thing is what your ears like. It's pretty subjective. The doctor/patient relationship is a complicated one and must ultimately rest on trust. You must trust that your doctor has your best interests at heart. You must feel that you can be honest with her or him and that she or he will be honest with you. You should feel that your doctor will take the time to answer your questions and allay your fears to the extent reasonably possible in such a fearful situation as AIDS. I don't know any other way to say it than that you should feel that you and your doctor share similar general life philosophies. You need to know that you are in basic agreement about such important matters as treatments, pain medication, life-sustaining equipment, etc.

4. Remember. Doctors are human too. They make mistakes and they have problems and emotions. Don't abandon a good relationship over one incident. Like a marriage, like friendship, sometimes relationships have to be worked at and maintained. And don't worship your doctor; don't treat him or her as infallible. They're not.

Q: Should I tell my family, friends, co-workers that I have AIDS?

A. The decision of whether and when and how and who to tell that you have AIDS is also a personal one. My own experience has been that it's simply simpler to tell a consistent truth. Who has time or energy to deal with trying to keep track of who knows what and who doesn't? It's much like gayness. For years, many of us skulked around assuming that grandma or our boss or our brother "didn't know" only to find out that they knew (or suspected) all along. Presumably, if you've had AIDS, you've been hospitalized. If you're gay, and you're hospitalized in the '80s, people are going to talk--even if you went in for a nose job or a broken leg.

But I don't want to be presumptuous. Not everyone is in a position to "come out" in all situations. Do what makes you most comfortable. There are PWAs who feel that it's no one's business. Others feel that it's important to be publicly identified, to put a human face on AIDS. Many of us feel that to hide a diagnosis is evidence of shame or guilt, both of which are counterproductive to healing and happiness.

I would caution you that there's no turning back. Once you decide to tell someone, you can't exactly untell them. So think through your decision. And generally, you can assume that once you tell one or two people, they'll tell others; so be prepared for that.

You should also be prepared for many different reactions. In my own case, some friends I thought would be really wonderful about it weren't, and some acquaintances I thought would drop me became wonderfully supportive new friends. One small advantage for me of being publicly identified is that I know who my true friends are. In my own case, the overwhelming majority of my friends, family and associates have been supportive beyond my wildest imagination. And I truly believe that their love and support are part of why I'm still here.

Perhaps the most difficult decision is whether to tell an employer or co-worker. On the one hand, it's none of their business. On the other hand, if they're likely to be whispering about it or if the status of your health is particularly relevant to your job performance, maybe it is their business and forthright honesty would be the best policy. The recent Supreme Court ruling would seem to make AIDS discrimination clearly illegal, so your employer will probably think twice about giving you any grief if you're honest about your condition.

Q: What about disability? Money problems? Insurance?

A: First of all, if you've currently got an insurance policy, whatever you do, KEEP UP YOUR PAYMENTS. If you've left a job, it's law that they must allow you to convert your policy. Don't let anyone fuck you over and don't drop the ball yourself. If you don't understand your policy or how to convert it, get help. It's crucial that you maintain coverage.

If you weren't insured at the time of your illness, there's no getting around the fact that you're in trouble. This is America and the quality of your care will be directly related to you ability to pay. Medicaid or welfare patients simply don't get the kind of care that someone who can afford top Park Avenue specialists gets. (However, no one can be turned away from a hospital if the situation is life-threatening.) If you're poor, what you have to do is qualify for disability and Medicaid.

But first, a word about the word "disability." For many of us, it is hard to confront the concept of labeling ourselves as "disabled." I know that I put off filing for disability for a long time because I wasn't emotionally prepared to admit to myself how sick I was. Get over it! First of all, the time to plan for disability is before you're truly disabled. Meaning, it takes a while to process all the paperwork. Don't wait till you're flat on your back in a hospital bed if you can possibly apply sooner.

"Disabled" doesn't necessarily mean "helpless." It means "unable to perform your job or other normal functions as you once did." There are different levels of disability.

The process of applying for disability and social security and other government programs can be a nightmare. It's like a maze. Some questions are written to trick you and trip you up. Others are written in such a way that unless you figure out the exact answer the computer is looking for, your application will be interminably delayed: you will not pass go and you will definitely not collect $200.

Get your butt over to GMHC or a similar social service agency which can guide you through the bureaucracy of financial assistance. I can testify that in my case, GMHC made the application process as painless as possible. GMHC has developed a close working relationship with the people in the various bureaucracies who process all this paper. Don't try to fill out the forms yourself. Get help!

Money can be a problem, but it's really too complicated to go into here. Again, GMHC or a similar agency can be of great help. Don't assume anything. Don't assume you have to spend down or wipe out your bank account or any of that. Get professional counseling on money matters.

Q: What about GMHC. Should I sign up now or later?

A: Now. Even if you ultimately choose not to use the many services they offer it's better to sign up now so that you can be eligible if you later need their help.

I have heard scattered complaints that GMHC can seem to some like just one more bureaucracy. They have grown rapidly in a short time. And they are largely a volunteer organization, so often your first or second experience of GMHC can depend on what I call "luck of the draw." You can get a volunteer who is really sweet and who extends him or herself or you can get a volunteer who's war weary and a little distant. Persist. Give them a second or third chance if you're unhappy with your first encounter. And there is quality control at GMHC. So if you would prefer to switch who you're dealing with, there are ways to do that. There are current attempts to revive GMHC's PWA Advisory Committee which would enable the "clients" to give GMHC feedback on how they can do what they do better. But definitely, I urge every PWA to register as a client of GMHC's immediately.

Q. What about sex?

A: I knew we'd eventually get down to "brass tackies."

First of all, it's normal to lose your sex drive when you're sick. Hot sex doesn't mean having a 104 degree temperature. So, be patient with yourself. Don't worry if your sex drive has disappeared. It may only be gone only for awhile. Or, it may be gone for good. Big deal! To my mind, you have more important fish to fry.

If you're one of those PWAs whose sex drive has remained or returned to normal, then you'll have to deal with the issue of how to have sex. Basically, the safer sex guidelines we're being bombarded with are written with the assumption that everyone has or is contagious for AIDS. I know that sounds gross, but that's the reality. PWAs have a particular interest in rigorously sticking to safer sex guidelines. In the first place, the one thing you know if you have AIDS is that you're vulnerable to infections, so you don't want to expose yourself unnecessarily to further infections. And hopefully, if you care about the person you're having sex with, you won't want to give them anything either. So, play, but play safely.

More important than sex, in my opinion, is LOVE. I am the Yenta of the AIDS movement and it's one of my missions to spread the word that people with AIDS are not factory seconds/damaged merchandise. Believe me, there's someone for everyone. One of the proudest achievements of my AIDS career was the recent wildly successful PWA singles tea. Over the course of three hours, 100 beautiful, eligible men--some healthy, some HIV positive, some with ARC, some with AIDS--mingled and mated. DO NOT ASSUME THAT NO ONE WANTS YOU! It just ain't so. And all sorts of arrangements are possible. If you're a PWA who's lost his sex drive but who would love to just cuddle, there are others out there like you. Likewise, if you're a PWA who loves good, hot, safe sex, there are others willing to pursue you. DON'T USE AIDS AS AN EXCUSE TO GIVE UP ON LOVE!

Q: Do I have to be afraid to ride the subway or go to crowded movie theatres? What about being around other PWAs? Can I get or give something to or from someone?

A: First of all, it would seem that most of the major opportunistic infections associated with AIDS are endogenous--that is, most of us already carry around the infectious organisms; when our immune systems are functioning properly, they're no problem; it's only when our immune systems stop functioning properly, as with AIDS, that they can become a problem. You've probably been carrying the parasite that causes PCP most of your life and it just flared up because your immune system was down.

There are some commonsensical precautions, however. For example, if you're immune suppressed, get someone else to clean the kitty litter since cats can carry toxoplasmosis. But generally it's my impression that people have an exaggerated sense of how susceptible PWAs are to infections. Think about it: If you're immune deficient, the worst place in the world to be is a hospital, which after all is a place which collects people who have diseases. Ride the subway; go to movies. Try to live as normal a life as possible, using common sense and respecting your physical limits.

Q: What should I do if I'm discriminated against because I have AIDS?

A: Fight it! Report it. Pursue it. Demand justice! Again, the recent Supreme Court victory concerning disability helps. I know it won't always be possible--you may feel you can't prove it, you're too sick or tired or you have other more important things to spend your emotional and physical energy on. But if you can, fight discrimination. It's not only important for your own self-esteem; it's important that those who are strong enough to fight establish principles of fairness for those who can't. The PWA Coalition Newsline lists several hotlines to call. The New York City Department of Human Rights AIDS Unit, the New York State Human Rights Commission and similar federal commissions and agencies offer some protection. GMHC's Ombudsperson's office can also help you handle cases of discrimination. Make a stink!

Q: How long can I expect to live?

A: Contrary to what the "experts" would have us believe, there simply are no absolutes. I was hospitalized with a serious bout of cryptosporidiosis in the Summer of '82. That makes my "official" AIDS diagnosis over 4 years old. And I know other PWAs who've been around for almost 6 years. On the other hand, I've known people who died within days of their "official" diagnosis of AIDS.

As someone who doesn't believe that denial should play a role in dealing with AIDS, I think it's important that anyone newly diagnosed confront the statistics being bandied about. That's why I've included the only survival statistics I've ever seen published anywhere (on page 131). Let's face it; the mortality rate for "frank" AIDS is quite high. It would seem that only 10% of us are alive after 3 years. You can choose to see that as the proverbial glass being 9/10ths empty; but for obvious reasons I prefer to view it as a glass which is 1/10th full.

Q: But don't the survival estimates depend on what specific infections you have?

A: It seems so. There are even epidemiologists and AIDS researchers who have suggested that the CDC is wrong to lump the KS data in with that for the other opportunistic complications of AIDS. In other words, some suggest that KS should be seen as a separate disease from AIDS. Again, while there are no absolutes, one can generally say that if KS is the only O/I you have, you're less sick than someone who has had PCP. Without getting into a lot of scientific mumbo jumbo, the point in the process of immunosuppression at which people develop PCP seems to be more serious than the point at which most PWAs develop KS. In fact, you can have KS and not necessarily be that immunosuppressed. Of course, many PWAs develop both KS and PCP. In terms of immune response, those people appear to be slightly sicker than those with either one or the other.

There are examples of non-AIDS-related KS where the KS has spontaneously regressed--without treatment. KS by itself isn't always immediately life-threatening. PCP also comes in mild and severe degrees. Generally speaking, PWAs who detect and treat their PCP early have a better chance of beating that particular bout and of having fewer complications than those PWAs who delay making a diagnosis and beginning appropriate treatment. There is also some data that suggests that PWAs who have had PCP live much longer if they are given frequent transfusions of packed red blood cells. Exactly why this is so isn't understood. But my doctors at St. Lukes Hospital have shown that transfusions are a good idea for a lot of reasons. (They irradiate the red cells so there is no risk of getting new infections from the transfusions.)

As for the other two dozen or so opportunistic infections which can affect PWAs, each seems to have its own mortality rate. Most--though not all--O/Is can be treated. It's not always easy, and usually not very pleasant; but doctors definitely have a better handle on treating the various opportunistic complications than they did in the early days of AIDS. It is my personal opinion that many of the people who died from AIDS in the early days really died from complications of the treatments rather than from the particular disease being treated. Many people who had KS in the early days died from pneumonias brought on by chemotherapy which, looking back, was probably too aggressive.

So, I think it's fair to suggest that the mortality rates for AIDS reflects the lag in knowledge about treating O/Is. In other words, those diagnosed today probably have a better chance of living longer than did those diagnosed earlier.

Q: Sometimes I get really anxious and depressed. What can I do?

A: Let's face it: AIDS is depressing. Who likes to be sick? And who likes to turn on the TV or pick up a newspaper everyday and read what some usually ignorant, uniformed asshole has to say about what you're going through? It's maddening. AIDS is an emotional roller coaster. There will be good days and bad days, physically and emotionally.

If you can possibly avoid taking drugs for depression, do so. These drugs have side effects which can be unpleasant and you want to keep your system as free of nonessential drugs as possible. If the depression is serious enough, don't hesitate to take medication if that's what your doctor or shrink prescribes. But don't pop a pill every time you feel a little sad or don't immediately fall asleep.

Friends, lovers, family and/or a support group of other PWAs are, in my opinion, crucial to any survival strategy. No one should go this hard road alone. Don't isolate yourself. Make contact with others.

Q: What about holistic approaches to AIDS? Nutrition? Acupuncture and stuff like that?

A: Well, I joke that there are two reasons I'm still alive: the love of a good man (my lover) and Classic Coca-Cola. I'm only partially joking. (Coca-Cola is clearly not high on the list of holistic practitioners.)

Many--perhaps a majority--of my friends with AIDS dabble to varying degrees with so-called alternative therapies: Meditation, acupressure, etc.

I can't say for sure whether any of these approaches are helping, but I can say with pretty great assurance that they're not hurting them. And in most cases it's my opinion that these alternative approaches are helping--if not immunologically, at least emotionally.

I encourage any PWA to pursue anything which he or she feels makes them feel better if there is no reason to believe that the choice can have harmful effects.

I basically avoid rigid people. Someone who is completely and arrogantly dismissive of "holistic" approaches is as extreme as someone who refuses to take any antibiotics at all for any reason no matter how sick they get. It's a person's right to refuse anything, I hasten to add. But as a rabid rationalist, I can't understand the irrational rigidity of people who insist that one way and only one way will do.

Again, the PWA Coalition Newsline and other AIDS organizations and publications list many alternative practitioners who deal with PWAs. Ask around.

Q: Anything else?

A: Well, basically follow your mythical grandmother's advice. All things in moderation. Listen to your body. Eat right. Get plenty of sleep. Be good to yourself. Love yourself and find somebody to love you. Love somebody back. Love is very healing.

I encourage appropriate skepticism about what you read and what you're told. AIDS has become a cottage industry and everyone has an opinion. Anyone who keeps up with the media knows that you can find an "expert" to say anything about AIDS, most of it contradicting last week's expert. So try to find a quiet place above the maddening roar.

If you can possibly manage it, be political. Write your congresspeople. Join the PWA Coalition or the local PWA group in your area. If there isn't one, form one! (Place an ad in a local paper.) Speak up and speak out. Insist that this country mount a better response to AIDS. Make America value your life as much as you do. Life in general, and your own life in particular, is worth fighting for.

WHAT TO DO, WHAT TO DO

by Max Navarre

You've just been diagnosed with AIDS. You're in a panic. You're sick. You feel frightened, confused, enraged, anxious. You feel totally alone. What has happened to your life? It's over, you think. It's been ruined, you think. Think again.

I've got a few things I'd like to let you know. The first is: no matter how you're feeling, you are not alone. There are lots of us who have been where you are now. That knowledge might not necessarily diminish the pain or isolation you're feeling, but, the fact is, lots of people have survived an AIDS diagnosis and are here to tell the story. I'm one of them. So, know you're not alone.

Take a deep breath.

I would like to do a few things. I want to give you a little practical information that might help you out; just a few opinions and suggestions you might be able to use. And, I'm going to let you know the way it is for me. What I do, what I've done. What's working.

Know that what I describe to you is just my way. There are as many ways to experience AIDS as there are people who have it. What is useful and helpful to me might be anathema to you. All I can do is present my AIDS experience as it continues to unfold itself to me.

If you're sick and exhausted and stuck in bed right now, it might not seem that there's a lot you can do. Maybe. One thing you can do without too much trouble is TALK. Something that a lot of us do after diagnosis is shut down. We don't see people, we don't take calls. It's easy. You've got the perfect excuse; you're sick, you're tired, no one knows what to say to you anyway, so why see them? This is a trap. Closing people out is an action that perpetuates your feelings of isolation and alienation. Talking to people breaks those feelings down.

Caution: if you've been buttoned up all your life, talking isn't going to be easy. A lot of us have been raised with the notion that it isn't appropriate to let people know what we're feeling, that it is unappealing or unpretty to show our emotions. People will take advantage of us. We'll feel exposed, vulnerable, people will turn against us. Guess what? Maybe they will. Maybe they won't. FORGET IT! That shit isn't important. You are in health crisis. The old rules don't apply, and the new ones haven't been made up yet. If you've just been diagnosed with AIDS, chances are you're feeling pretty pissed off. Do yourself a favor; let people know. Confide in your friends. Let them know what's going on for you. You've got a right to be angry. Don't let anyone tell you that you don't. You know what else? If you express yourself, other people will feel free to express themselves. You might be able to break through some of that non-communication that's been plaguing your relationships.

Chances are that the people around you are frightened and confused. Let them know that you are too. (YOU ARE.) Let family and friends know that you're all in the same boat, and that it's ok to be confused. It's ok to not know what to do. Take the pressure off. Let them know that you know that they don't have answers for you. Tell people your fears. This is not a time to be guarded. Trust the people around you. Show your emotions. Let go of some of those old notions we all have about decorum. Be indecorous. What the hell!

I'm not saying be a pig. I'm not suggesting that you alienate people. Nobody likes a pain in the ass, sick or well. But, I will tell you, the people who love you will

appreciate knowing the truth. Give them that gift. And, give yourself the gift of saying what's on your mind. Love yourself enough to tell the truth. TALK!

While you're talking, talk to your doctor. There is no such thing as a stupid question. There's a lot of information out there about AIDS, and a lot of it changes frequently. Even the most informed among us always has a lot of questions. ASK THEM! If the answers that you receive do not satisfy you, say so. This is particularly true if a medical procedure is involved. It is your right and your responsibility to yourself to see to it that you understand what is being done to your body. If your doctor insists that a certain procedure is essential to your health, and you have qualms about it, get a second opinion. If getting another opinion makes you feel uncomfortable, feel uncomfortable and get another opinion. If necessary, insist on your right to information. It shouldn't be necessary to insist.

Yes, your doctor is probably insanely busy. You'll probably see him for five minutes a day, if you're lucky. He or she'll come bustling in, and you'll get all flustered and forget what it was you wanted to ask. This is how I handled that particular problem. I kept a notebook. I would lie there and formulate questions. People would call me with advice, news or suggestions. I would incorporate any new information into my questions. When my doctor arrived for her daily visit, I would know what I was doing. I didn't have to wrack my brains trying to remember what I wanted to ask, it was a big help to my doctor too; she loved it. And anything that came up after she left, I just put it down for the next day.

There are lots of ways to help yourself. It's also important to GET HELP. This is no time for rugged individualism. Doing it yourself will help you to assert your independence, but it will also help to support you in your denial that there's anything really wrong with you. Forget it! You are in a health crisis. You have AIDS. Don't run from it, don't coddle it, but respect it for what it is. Your body needs your attention. You probably have people around you who want to make things easier for you: LET THEM. If someone wants to cook for you, clean for you, give you money, take you to dinner, bring you a present: LET THEM! It doesn't matter if they're acting out of guilt, confusion or feelings of helplessness. Why shouldn't they? Having someone you love get diagnosed with AIDS creates feelings of helplessness in people. It's important for you to practice letting other people into your life. Let them help.

That goes for service agencies too. Find out what services are available locally and take advantage of them. Chances are you won't need all the services that are offered, but accept the services you do need. Don't rationalize that they have so many people who are worse off than you, and that you don't really need any services. Do not play that game with yourself. Accepting services from an agency whose purpose it is to offer services to people with AIDS does not make you a victim, or a charity case. If your sink breaks and you call a plumber, are you a victim of the plumber; or the sink? Or are you somebody who has enough sense to take advantage of another person's expertise and experience? It's all in how you look at things. The point is: you must help yourself. Sometimes, the way to do that is to accept help. If you can get financial assistance, legal assistance, therapeutic assistance, accept it.

If you live in a big city, get in touch with the PWA organization in that city. Involving yourself with other people with AIDS is the best way there is to avail yourself of information and support. Don't run around in circles, duplicating the work that others may have done before you. Make friends with other people with AIDS. We care about you, we support you, and we know about the experience of AIDS. ASK.

You don't have to be a victim. And one of the best ways to avoid feeling like a victim is to avoid the media. The media are full of shit when it comes to AIDS. The media do not concern themselves with either our sanity or our self-respect. The name of their game is selling newspapers and achieving ratings, and, in the name of that game, any lengths will be gone to to put forward the most sensationalized misinformation about AIDS. Ignore it. Tell your family to ignore it. Tell you friends to ignore it. And learn the truth so that you can arm yourself with the facts.

Another way to avoid feeling victimized is to stay away from altruists. The woods are full of well meaning people who are using the AIDS crisis to help themselves feel better about themselves. They are often unaware that they are so motivated. Do not play victim so that someone else can play savior. It's a dangerous game, and no one wins. You lose because, if you're allowing someone else to "fix" you, then you are giving away your own power to that person. The other person loses because, by diminishing and infantilizing you, they are looking to sources outside of themselves in order to help you without letting them patronize you. There are ways to accept love and care without lessening yourself. You are not a victim. You are not a case. You are a person with a confused immune system. You are a person with AIDS, a condition. You are not the condition. You are the equal of anyone who cares for and loves you.

Let's talk about alternatives to the traditional medical path. Remember, the medical profession is notoriously disinclined to lend any credence to the benefits of alternative treatments. Vitamins, nutrition programs, special diet, therapy, stress reduction techniques, visualization, meditation, acupuncture and other methods will usually draw a shrug and an "it can't really do you any harm" from a medical doctor. Fortunately, one of the side benefits of the current health crisis is that some doctors seem to be more willing to consider the possibility that many of us are deriving a great deal of help from the alternatives that are available. Personally, I believe in making strong, informed choices, outside of prejudice or pre-conceived notions. Choices which reflect and maintain a balance between conventional methods, and those which are somewhat outside the mainstream, are the choices that work for me. I would strongly suggest that you examine the possibilities with an open mind. Talk to people who have AIDS and who are doing well. Find out what they do. Be very careful what methods of treatment your involve yourself in; commit yourself fully to whatever you decide to try, and allow yourself to have faith in it.

I would make the same suggestion about experimental drug therapies. Most of the drugs that are being used in the treatment of AIDS are intended either to stimulate the immune system, or to suppress the virus. So far, nothing does both. Consequently, most treatment programs call for a combination of at least two different drugs. All of the drugs being used are highly experimental. And, the risk and the level of experimentation rise when one is dealing with combinations of drugs. At this moment, there is no way of knowing what the long term side effects of any experimental drugs will be.

This is not to say don't get involved in a drug program. This is to say be very, very careful. Talk to your doctor, talk to another doctor, and think about what you're doing. Don't allow yourself to be pressured into making a decision. Love yourself and love your body enough to be sure before you say "yes."

You could also love yourself and your body enough to take a look at the foods you eat, and the relationship between those foods and your health.

I am the first to admit that I am something of a pedant when it comes to diet. I believe very strongly in the effect of food on my body. I do not hesitate to suggest that most people with AIDS, most people, if it comes to that, have really lousy diets. Having said that, I will also state that I believe that it is commitment to a way of eating, rather than any specific way of eating, which contributes the benefit when it comes to diet. In other words, examine the possibilities, talk to a nutritionist or other expert, find a diet which is workable for you, get on it, and stay on it.

This is not a time for random self-indulgence: the "wish food" syndrome. The idea that one has enough trouble and might as well eat whatever one wants is, for me, self-defeating. It's on a par with the dentists who tell people with AIDS that we don't need to have our teeth cleaned. We are dying after all, so what's the point?

I happen to think that that attitude sucks. Now, more than ever, we owe it to our bodies to take care of them in a loving and gentle manner.

So, look at your diet. And think before you drink. And, for chrissakes, stop smoking. Call me a crank, call me a killjoy, but I am someone who enjoys a consistently high level of energy, and whose blood work has been in the normal range for the last several months. I don't believe that it's an accident. Think about it.

Think about it, and then write about it. Writing has been an unbelievably useful tool for me. Always, but particularly since diagnosis. When I was in the hospital, a friend of mine who, as a teenager had survived Hodgkin's disease, made a wonderful suggestion to me. He told me to get a pad and a pencil, and to make a list of every reason I had for dying--to write down everything about dying that would serve me, from not having to deal with money anymore to getting back at my family. He also told me to make a list of everything about living that served me. I did. I made a list of every reason I could think of to be alive: everything from the way the sunrise looks to the sheer banal joy of dinner and a movie with someone I love.

Then, I did something else. I made a list of everyone, but everyone, I know. After each name, I wrote everything I had against that person. Then I wrote down everything about that person that I loved: their smile, their presence, their body--whatever it was.

It took a long time. It was worth it. By the time I was finished, my choice about living was absolutely clear to me. And it continues to be clear to me. Which is not to say that I don't have doubts, that I don't become frustrated or sad or frightened. Because I do.

But, I cherish my life. I'm one of the angriest fuckers I know. I'm also one of the most joyous. I feel both of those things all the time, at the same time. And I cherish my life, and I embrace it.

I can't tell you how to have AIDS. I can only tell you how I have AIDS. I can tell you that AIDS can be the worst thing that's ever happened to you, and it can be the greatest, most motivating challenge you've ever known. Probably both, all the time, at the same time.

If you have never loved yourself, never really loved yourself, gently and unconditionally, now is the time to do that. Love yourself, forgive yourself, and at the same time, know that there is nothing to forgive. Love other people, and let them love you. You'll never be bored. Unconditional love can do some amazing things, and it's a real safety net. And we can do amazing things when we know that we are safe. Miracles happen every day.