AIDS Patients : Resisting the Urge to Just Give Up

Looking back, Jeff Mullican now believes it began during the first tentative stirring of a New England spring. Six months ago, at a time when the earth around him was beginning its annual process of renewal, and his own health, all things considered, was remarkably good, Mullican began to feel that he had turned a dreadful corner.

As one of the first AIDS patients in the United States to receive, and significantly benefit from, the experimental drug AZT, Mullican even last April had outlived the odds for survival with the fatal disease. Today, still alive and able to care for himself 18 months after diagnosis, he represents something of a medical landmark.

And yet . . . .

“Somehow, some way, now I feel like I’m dying,” he said recently. “It’s like you know you’re not going to turn around and be young again . . . . It may be a long decline, but there’s something inside that says: ‘This is it.’ ”

New Setbacks

By any standard, Mullican has experienced serious new physiological setbacks in the past six months. As with other AIDS patients, his body has slowly begun to waste. He must take a cushion with him everywhere because his tail bone rubs directly against the chair, causing excruciating pain. His energy has ebbed so much that he has trouble driving his car; it does not have power steering and he lacks the stamina to shift gears. He has headaches. His joints ache. He has lost 35 pounds, largely because he has neither the strength to prepare adequate meals, nor the appetite to eat them.

Also, he was recently hospitalized for 10 days with a new infection, cytomegalovirus, which could threaten his vision.

Yet serious as these developments are, Mullican’s deepening depression seems to go beyond the physical complications themselves and to gather punishing intensity from the way he has come to feel about himself and his life.

From the beginning, it was clear that even under the best of circumstances he was never likely to regain his full vigor. And four times he has been stricken by pneumocystis carinii pneumonia, a serious respiratory infection that plagues those with damaged immune systems, such as AIDS patients. Each time he struggled through and regained at least some of the lost ground.

The physical erosion of the past 18 months, however, regardless of its eventual medical significance, has taken a severe toll on Mullican’s emotional condition, leaving him with the conviction that now, finally, he is moving in one fateful direction, with no turning back.

“I’m just not getting better and that frustrates me,” he said. “I’m just existing now. I’ve been fighting as hard as I can, but now I wonder: why bother? No one has survived this disease, no matter how long he has lived. Why go through the struggle when you know the end is going to be the same?”

Some psychiatrists have described this attitude as the “giving-up complex.” The syndrome is often observed among individuals who realize they are aging, and will never be what they once were, but it is not confined to the elderly. It is found among persons of all ages who have suffered multiple assaults of medical or other misfortune and begin to feel they have lost control over their lives--with little likelihood of regaining it.

“There have been studies demonstrating the importance of having a sense of mastery over your life, so that you’re not like a leaf in the wind,” said Dr. Robert Butler, a psychiatrist who chairs the department of geriatrics at Mt. Sinai Medical Center in New York and is considered an expert in the field of adult development.

“When you have that sense of control, and when you have goals, you have a strong sense of survival--and you can have that well into old age,” Butler added. “But when that is lost--that can happen many different ways, through aging or a terminal illness or injury--it’s as if you’ve turned the corner. In your mind, you start operating backwards, rather than forwards.”

Dr. Alexandra Beckett, a research fellow in psychiatry at Massachusetts General Hospital and an instructor in psychiatry at Harvard Medical School who has been working with Mullican, agreed.

‘Devasting Change’

“When you think of who he was, and what he has become, it’s a devastating change,” she said. “It is extremely difficult to have hope when you are so weak you cannot climb the stairs. He has to beg a cab driver to take him two blocks. He used to be in control. Now he no longer is, and loss of control is a big issue with this disease.”

On a certain level, she said, Mullican is exerting what little control he has left simply by going through the emotional exercise of deciding whether life--the way it is now and appears to be going--is worth living.

“I think he is getting close to the point where he is considering that this is not a life worth living,” Beckett said. “He’s getting close to letting go. I think he’s getting there; he’s not there yet.

“I think it’s healthy for Jeff to recognize this could be it,” she added. “Part of coming to terms with dying is being allowed to say out loud: ‘I am dying.’ He obviously is dying. We just don’t know how soon. If the people you say that to can’t tolerate hearing it, you start to feel very alone. Loneliness is one of the most awful parts of this illness. The reality is that when these people say they’re dying, they’re right.”

For the past 18 months, Mullican, now 33, had been traveling an emotional roller coaster of highs and lows, starting from the moment he agreed to participate in the first nationwide study of AZT, shortly after his AIDS diagnosis in April, 1986.

At first, after he began taking the drug, he was hopeful--as were AIDS researchers studying AZT. He enjoyed eight months of good health and well-being, free from the life-threatening infections that ravage AIDS patients and eventually kill them. Last December, however, he was emotionally shaken by the first of three recurrences of pneumocystis. And since last spring, he has begun to feel a vague, undefined general weakening in his overall condition that has not improved over time.

Sense of Well-Being

“Right after the first episode of pneumocystis, the patient has a sense of physical well-being that hasn’t been there for months,” Beckett said. “Pneumocystis comes on insidiously and, once it’s treated, patients feel incredibly better. There’s a honeymoon period. They think about what they want to do in the limited time they have left--write a book, do AIDS work, resolve relationships. There’s an expansive period. Then the disease begins to hack away at them. They begin to look rotten. They begin to feel rotten. Then all these great plans become impossible tasks.

“Even AZT is a mixed blessing. People say, as Jeff has said: ‘I’m being kept alive--for what? Is this the quality of life I would have chosen?’ ”

Mullican’s physician, Dr. Robert T. (Chip) Schooley, an AIDS specialist at Massachusetts General Hospital and an associate professor of medicine at Harvard Medical School, who has cared for Mullican since he was diagnosed with AIDS, understands his patient’s sense of hopelessness. The feeling is especially acute when compared to the euphoria he and Mullican experienced just one year ago, when the early results of the AZT study showed such dramatic promise.

“Lately, Jeff has had to work harder and harder to do the things he could have done two or three months ago with less difficulty,” Schooley said. “He has to run harder and harder to stay in the same place. It’s easy to see how, as he begins to look at the things he can’t do now--and wonders if he’ll ever be able to do them again--how he would feel frustrated and less hopeful. But, as we’ve been telling him all along, he’s sailing in uncharted waters.”

Terror of Future

Mullican is not yet at the point where he needs someone to cook or clean for him; nor does he need a wheelchair to move about. But he sees that day coming, and he is terrified.

“I don’t want to sit around and do nothing,” he said. “I don’t want to be confined to my house. But I really can’t walk anywhere, and I don’t want to go for a wheelchair. Also, it’s very hard for me to fix food. I can’t even make something simple, like instant oatmeal. I get up, measure the water--then I have to sit down.”

He added: “I’ve always wanted to maintain what I would consider to be a reasonable quality of life. I want to to be able to take care of myself, but I’m beginning to realize I can’t live alone much longer without help. I just can’t see it. And it’s scary. I want to live at a level where I feel like a vital human being--I don’t want to live a life that’s less than that.

“I have these dreams,” he added, wistfully. “I dream of things like going skiing, or windsurfing, or being able to run down the beach. Then I wake up and I realize there’s no chance I’ll ever do those things again.”

AIDS, which is caused by a virus that destroys the immune system, has afflicted nearly 43,000 Americans so far, the majority of them homosexual and bisexual men and intravenous drug abusers and their sexual partners. Nearly 25,000 of them have died. The disease is commonly transmitted through anal and vaginal sexual intercourse, through the sharing of unsterilized hypodermic needles, or through infected women to fetuses during pregnancy.

Schooley, who feels Mullican is still doing relatively well, nevertheless realizes that Mullican’s inability to perform simple daily tasks represents a horrifying turn of events in his battle against AIDS.

Hard to Keep Fighting

“You could say, ‘Gee, he looks good,’ because compared to how other people with AIDS look, he does,” Schooley said. “But to Jeff, these are very real things he can no longer carry out, and they get magnified when he thinks about them. If he can’t cook, what will he do? Will he be able to take care of himself?

“His perception of what he has facing him is making it increasingly hard for him to keep pushing and fighting.”

The hand-lettered sign on the door of hospital room 807 read: “Knock forcefully and come in. I won’t bite you!”

Inside, Mullican, dressed in a red bathrobe, sat on the bed with his thin legs crossed under him, preparing to receive one of the three daily 45-minute intravenous doses of the experimental drug, DHPG. The drug is expected to wipe out his cytomegalovirus infection, and, it is hoped, save his eyesight. Once released from the hospital, he must still take the medication intravenously--three or four times a week--for the rest of his life.

His latest infection was discovered almost by accident. He had just returned from a trip to Denver to visit friends for 10 days. It was then that he realized how sick he had become.

“I have a feeling that the high elevation did me in,” he said. “I had trouble breathing, and I needed both hands to support myself when I stood.”

When he returned to Boston, he kept his biweekly appointment with Schooley at Massachusetts General Hospital. There, he usually undergoes a routine examination and his blood is drawn and analyzed. While he was in Denver, he told Schooley, his feeling of weakness had been pervasive and all-encompassing. Schooley was not surprised. Cachexia, the medical term for body wasting, is common among those who live with the AIDS virus for a long time.

As Mullican was leaving, he mentioned in passing: “The only other thing, when I looked up at the sun, there was a sheet in the bottom of my vision.”

Eye Examination

Schooley stopped him before he could leave.

“It was enough to trigger looking at his fundi--the back part of his eye,” Schooley said. Under examination, Schooley discovered an area of hemorrhage, one of the telltale signs of CMV retinitis. If not caught early, the infection frequently results in blindness, and is an especially frequent condition among AIDS patients.

Like many of the organisms that cause problems for AIDS patients, cytomegalovirus is extremely common and of little consequence to people with healthy immune systems. Virtually 60% of the adult population has been infected with this virus, Schooley said, including himself--a past test of his own blood showed antibodies to cytomegalovirus, meaning that he has been exposed to it. CMV can cause a mononucleosis-like syndrome, but more frequently causes no disease at all.

“In immuno-suppressed patients, particularly transplant patients or patients with AIDS, enough viral replication can occur to cause clinical disease,” Schooley said. “He’s probably had CMV for a long time. In AIDS patients, CMV is more likely to be sight-threatening than life-threatening.”

Schooley ordered a urine culture to determine if cytomegalovirus was present. The culture was positive within 48 hours. “It’s very unusual to see a urine culture grow in two days unless there’s a lot of virus present,” Schooley said.

Mullican was hospitalized for 10 days so that the high doses of DHPG could be administered. “With DHPG we have about an 80-to-90% success rate of turning around the visual problems,” Schooley said.

While on DHPG, Mullican was taken off AZT. Both drugs depress the level of white cells in the blood. Schooley felt that while Mullican was taking large levels of DHPG, “if the white count dropped, we needed to know which drug was lowering it.” Later, Schooley said, once the CMV infection is under control and Mullican no longer requires such high doses of DHPG, he will be allowed to resume taking AZT.

Schooley believes Mullican’s extreme fatigue can be attributed to the cytomegalovirus infection, and he is hopeful the DHPG will help restore some of Mullican’s strength and weight. “We’ll know in about a month what impact the DHPG will have,” Schooley said. “It’s too early to assess it right now.

“In a sense, we may have an explanation with the CMV for a lot of what’s been going on with Jeff--the weight loss and his decline,” Schooley added. “We might be able to get him back so he can make some progress. Even though Jeff is discouraged and unhappy, I’m not throwing in the towel.”

No one ever described AZT as a cure for AIDS. But last year at this time it was heralded as the first drug effective in prolonging the life of AIDS patients. It had a profound impact on those with recurring episodes of pneumocystis, who typically die within 40 weeks of diagnosis. Patients taking the drug suffered fewer and less severe pneumocystis attacks, they regained weight they had lost and they experienced an enhanced sense of well-being.

Although scientists were reluctant to predict the future for those on AZT therapy, it was understandably difficult for AIDS patients, including Mullican--facing an otherwise bleak prognosis--to restrain burgeoning expectations.

But at a meeting in New York earlier this month, some AIDS researchers studying AZT reported sobering findings. Scientists at the University of Miami said they were now seeing deterioration, similar to Mullican’s, in some of their AIDS patients who were in their second year on the drug. Many of the early AIDS patients on AZT, they said, have since begun to develop the opportunistic infections that seem to have been forestalled by the drug initially.

“Part of the hope of AZT was that these patients could be kept alive long enough for a cure,” said psychiatrist Beckett. “And what most people now realize is that there isn’t a cure in the immediate future. These first-generation AZT patients will be hard-pressed to believe they will live long enough to be cured.”

Not Many Lived

Dr. Samuel Broder, the National Cancer Institute scientist who conducted the very first studies of AZT on a small group of AIDS patients beginning in July, 1985, acknowledged that most of them were no longer alive. “Some of them celebrated their second anniversary,” he said. “But not many.”

Schooley, another of the original AZT researchers, said in his experience with AZT there continues to be a “relatively broad spectrum” of results.

“There are some who are still at work, and others who are having the same sort of subjective decline that Jeff has been experiencing over the last several months,” he said. “The pendulum swings in both directions. It’s been great for some, good for others and fair for some. Some can’t tolerate the drug at all. It’s too early to say there’s a pattern established at this point. The AIDS virus is a very driven virus in terms of its ongoing replication in people who are infected. AZT slows down the replication, but doesn’t stop it.

“At the heart of the problem is the immuno-deficiency,” he added. “Until we have a way to rebuild the immune system and keep it intact, the recurring theme will be to deal with each bout of infection.”

And thus far, a so-called “breakthrough” drug remains as elusive as ever.

“AZT remains the best drug we have,” Schooley said. “It clearly shifts the curve over the short term for survival and a better quality of life, but we need better drugs for the long term.”

And the experience of AZT, Schooley said, rather than discourage researchers, has served to inspire them to continue their efforts.

‘Meaningful Life’

“I think medicine should have as its main goal prolonging the existence of meaningful life,” he said. “Jeff has had many months he otherwise wouldn’t have had. And he’s done very well . . . .I think it’s very worth pushing ahead.”

Mullican agreed, saying he has no regrets about his part in the AZT experiment.

“I never really thought it would prolong my life to the point of finding a cure,” Mullican said. “I know scientists are working feverishly, but I never felt they were close to a cure. I always figured it would take five or six or more years.

“The timing isn’t right for me,” he added. “I looked upon this as giving me a couple of extra years--but not enough to survive forever.”