‘The worst is yet to come’

A journal of life on the AIDS ward of a veteran’s hospital in the early 1990s

BRATTLEBORO — At the end of a long stretch of lawn on the Capitol Mall in Washington, D.C. lies a green depression, deceptively serene and muted. As you approach, it appears like a buried black wall, a bunker without an entrance. People move quietly along it.

One woman is about 60. Her hand slowly traces the thousands of engraved names on the wall until she stops at one. It is the name of her son, killed in Vietnam. She turns to her husband, and they both begin to cry.

More names need to be added to that wall, the names of those who died after the war. They are the soldiers who came home and were devoured by the memories of war, by alcoholism, drug addiction, or hopelessness - and AIDS.

The last battles of the war are fought in the crack houses of Harlem, in the shelters and streets where the homeless live, and on the AIDS hospital ward in a veteran's hospital, where 16 beds are reserved for men with full-blown AIDS and tuberculosis.

The ward is called 20 South. One patient called it Paradise Alley. He said, “It's Paradise Alley because it is someplace between heaven and hell ... but mostly hell.”

As you walk through the door of the ward, you're confronted by a thick collage of smells: antiseptics, deodorizers, cigarettes, and dime-store cologne.

As you move farther down the hallway with its tan, brightly polished linoleum, there is the slight stench of a nursing home: the smell of stale urine cloaked in a dense veil of deodorizers.

Another smell is omnipresent, though subtle: fear and death.

* * *

The fluorescent blue supermarket lights bathe the tan walls and floors in a strange, purplish light. There is a continuous sound of mechanical breathing twenty-four hours a day: the hum of air compressors, fans, the beeping IV monitors, and the occasional respirator. This mechanical pulse is measured against the tempo of life on an end-stage AIDS ward, chaotic, brittle, shrill, until the pulse of life stops.

Most of the patients in these 10 rooms are black and Hispanic, as young as 30 and as old as 65. Many have been homeless; others have families, children. and even grandchildren.

There are alcoholics and IV drug abusers. Many of the men have been clean for years and are now fighting for a little more time.

There are gay men - white, black, and Hispanic. There are even the one or two straight men who insist they've never touched a needle or looked at another man twice.

Some of the men have supportive families, but most are alone, with few visitors and few telephone calls. One man who had been here for months refused to tell his family. Even though he was dying, he didn't want them to know.

Few visitors know when they walk onto the floor what this place is. People visit and ask, “What does he have?”

“Hasn't he told you? No? Then you need to ask him.”

You can see the visitors trying to peel back the mystery, “Why is he dying?”

“That person over there... why can't he breathe?”

“Can you tell me when my brother will be better?”

* * *

Jim is leaving today after a two-month hospital stay. He looks gaunt and refuses his medication. I tell him the pills will help. I know this is more bullshit, and I think he knows it as well.

He is dying, and in six months it will be over. His hospital referral slip is left behind. He has no money and asks around for chump change from other patients; he has all the moves of a street hustler.

The illusory magic that sustains the street hustler is that there is always another chance, a little more, a bit further - another opportunity will happen.

Another patient, José, says, “Do you know how long it will be before he is out on the street selling his medication for a fix?”

* * *

Willie Sanford has been on the Alley for the past week, a recovering alcoholic and drug addict with end-stage AIDS emphysema, as well as renal failure. He says that he doesn't understand when they tell him about his medication.

I ask, “What don't you understand?”

In his thick, south Georgia drawl, he says, “I don't understand about my disease. They tell me what I got, but it don't make no sense.”

His face, hidden behind the oxygen mask, lights up. His body is vainly trying to suck up each molecule of oxygen, as desperately as a crack addict sucks on the bottom of an empty pipe. His lungs can't ingest enough oxygen.

He is suffocating. It is like being in a pool of fresh water and dying of thirst. Today, I value even more how sweet and delicious it is to breathe the air; even the stale air of the city feels very fresh.

Willie has the radio tuned to a jazz station day after day, the soulful introspective wails of Coltrane echoing through this bare room. He looks out the window toward the East River while tethered to the oxygen unit on the wall.

Most prisons wish they could have isolation so intense.

* * *

When you look at people, the first judgment is appearance. Are they neat? Slovenly?

With my patients, even those who are terminal and comatose, I make sure they are clean and shaved. If they look like bums, they will be treated as such. It is the small changes, sometimes, which make for an enormous world of difference.

Often, as health-care professionals, we do something at or to a patient we are working with, but compassion is the rare ability to work with passion and care, not merely to suffer with that person.

Do we allow ourselves the opportunity to work with someone like this?

Our work environments and training compel us to act from a professional distance, at arms length, when we most need to hold and cradle, comfort and love, and act with compassion.

What prevents us?

* * *

What can make this AIDS ward more than just a place where people come to die or to gain a little more time? Maybe it's a little humanity that makes the difference, both toward one another as health-care professionals and with the patients.

My work with the sick and dying is not an impersonal war with disease, but at its root I'm healing myself as well, making myself whole. I'm learning to put aside my impatience and work consciously without hurry.

Illness and crisis challenge us and compel me to find the best in who I am: that gram of courage and patience, a measure of dignity, the willingness to bend, and the strength to stand for my convictions.

This is the real challenge that is offered here on Paradise Alley, both for patients and staff. Do we take up that challenge or do we refuse? Do we have the guts to fight? The Chinese symbol for crisis is from the characters that represent the concepts of “danger” and “opportunity.”

A young resident, Naja, new to the unit, said to Clement as she notices him taking off his uncomfortable and hot oxygen mask, “Your oxygen levels aren't good, you're not using your face mask often enough; if you don't keep that mask on all the time we're going to intubate you. And then how would you like that?”

This 24-year-old Indian woman is talking to this 47-year-old African-American man as if he were a naughty child. He is too sick to fight back and meekly puts his oxygen on again. An intern who had been standing next to Naja mutters as he walks away, “I can't believe her.”

* * *

Does this place really offer the opportunity for healing? Health-care providers and hospitals too often foster passivity and rob people of the little power they have over their health and the choices that they need to make. We have permission slips for “Do not resuscitate” or permission for this and that, but so much of the decisions are denied.

For example, men come in here to have an indwelling IV line, a fairly simply procedure that takes an hour by a trained nurse, and it winds up taking as much as two weeks because there is in-fighting between departments: the surgical department doesn't like taking AIDS patients. The patient's time is considered secondary to that of the hospital.

One doctor said, “So what if they're in here for a week or so, what else do they have to do?”

So they wait and wait, and are branded as “difficult patients” if they speak up and complain, and if they complain too much, they're given a sedative.

The irony is that health should be an active choice, and it demands that you're an active partner. Sickness and well-being are also choices that few of us realize we have until it's too late.

* * *

Yesterday morning, I spoke to Day, a 20-year IV drug abuser, a Vietnam veteran whose life after the war followed a trail more sinewy and difficult than any he could have taken in Nam.

Day is a speed-ball king, mainlining heroin and cocaine, with alcohol for those moments in between. His skin is parchment yellow, and his face has the haunted, gaunt, and frozen look of a walking cadaver who by all rights should have been dead a long time ago; but he keeps moving forward, one step in front of the other.

Day says, “I can't keep it together; I'm 100 percent service disabled and it's hard to keep the money. Hard to keep that money from turning into a little ... recreation.”

What can I possibly say to change how he is? Not a whole lot.

The critical thing for me is to recognize I can't really do anything for them. Sure, I can offer comfort and support, but the change they need to make, the change in mind and consciousness, is their own choice.

Day says, “I don't know if it makes a lot of difference now that I'm - I'm dying.”

And then he is very quiet, lost in thought.

* * *

Randy has been slowly dying over the past four days. His body is shutting down, like the servants turning off the lights in the abandoned mansion. One by one, room by room, the lights are turned off and the rooms closed.

This mansion was built 47 years ago. What will be remembered of it?

It is the small things I need to remember to do for him - like to comb his hair. I know that must look ridiculous. I want people to see him as someone deserving of love and respect, and, yes, care. Maybe by having him clean, shaved, hair combed, and the blankets and sheets neatly covering him, someone might see a brother, a son, or a person instead of the patient, a person you do something for, or someone who “needs your attention.”

A revolution sometimes takes small steps. With each of these men, I take the time that I need, close the door to his room, take off my jacket, open the window, allow the sunlight to come in, and devote an hour or so of time to him.

Though Randy is comatose, I believe we hear each other. I move slowly and deliberately. My process of caring for him is a meditation. The meditation that I didn't do this morning I did with him.

The Buddhist monk Thich Nhat Hanh, talking about washing dishes, said, “Each act in the washing process is like washing the baby Buddha or the baby Christ.” The state of mindfulness is not a light on or off, it is a movement toward our own inner light, a truer revelation of ourselves.

In working with Randy, I'm not distracted by the ward outside or my fatigue. I breathe, I work, and I listen. What is it that this person needs to say to me?

I massage his emaciated body, and I'm attentive that this body is a miracle and this life a very precious gift.

How do I honor this miracle of life? I care for another and care for myself. I allow myself to be open and loving. I spend eight hours a day among the sick and dying, and there is an even greater appreciation for that miracle of life and the simple pleasures of being alive - free of pain and illness.

* * *

More faces are coming in; it feels more like a battlefield hospital than a medical ward.

Yesterday, I spoke with someone about the fairy-tale quality of the ward with 16 beds for AIDS patients. The miserly 16 beds is like trying to drain a river with a teacup. For each bed on this ward, there are as many as 10 to 20 patients elsewhere in this hospital waiting for an opening.

How many people with AIDS are walking the streets, sleeping in doorways or on the sidewalk? How many people are counting down their hours, unvisited and uncared for, alone, and waiting to die?

* * *

Joey is 31. When I look at him, I could be seeing someone who is 45 or 12. It's weird. He is what the junkies call a sewer; he'll ingest any kind of drug, anything to get him high. Nine years of being an addict has left him looking like a death-camp inmate: he is about five-foot-eight and 100 pounds.

His arms are slender and white, with long trail marks where the veins had become infected and inflamed. His body reveals his life - the unhealed scabs, the suture lines from four or five abdominal surgeries, and a body hanging on to life with as much certainty as the last leaves of autumn.

He is on 90 mg of methadone. That dose would make the strongest of men very quiet, but he is as wired and fidgety as a crack baby. Like an exhausted infant, no matter how much you talk with him, he can't calm down. He wants to leave, go back out on the streets one minute, and the next minute he wants to stay.

He hasn't shaved for a week and needs a haircut badly. The pajamas hang on him like the clothes on a scarecrow. He reeks of pain and the torment of an orphaned child, and there is absolutely nothing I can do or say to change that kind of pain.

His anxiety is driving everyone up the walls. Though he has active tuberculosis, he refuses to wear a mask. He plays the role of the frightened child who demands the attention that he never got.

I sit and talk with Joey for the better part of an hour. We are alone, the door is shut, and as the story of his life comes, tears fill his eyes.

I acknowledge that it is okay to cry. It is very okay to cry. I listen, and am there as best as I can be, and it is the only thing I can do for him.

* * *

Three-quarters of the men on the Alley are drug abusers, yet there is no Narcotics Anonymous program or any kind of in-house support or treatment, and there is a whistling-in-the dark kind of attitude that their individual addictions will somehow disappear with their AIDS treatments.

As a friend reminded me, “What do you have when you take drugs away from an addict? An addict without drugs.” The point seems apparent, however, not to the people who need to be the most aware of it.

Three guys pass in front of me this morning after they've come back from the second floor. I look into their faces. One has definitely been smoking crack, and the other two just look very stoned.

There are guys here who are making the effort to get well and get their lives together, to use the time that they have left as best they can.

Most of the staff doesn't listen to any of these guys. For the most part, the guys are just “the patients” and the medical staff and the like are the ones who know.

It takes courage to sit down with these guys and hear their stories. It takes a willingness to risk and maybe at the same time to see my own life, maybe to even reveal some part of who I am. Joey lost an infant son last year, and Chester's son died in his arms three years ago.

When I take the patients' blood pressures or insert IVs, I see the scars on their arms, suicide slashes on their wrists, or stab wounds on their chests and faces. This is a map of a life.

For whatever reason, they have wound up on the front lines of life - taking it on the chin, taking it to heart, perhaps too sensitive or stupid to walk away. But beneath the tough-guy bravado or the nothing's-going-to-get-me attitude is a lot of scared and lonely guys.

When we can speak man to man - person to person - when I can listen and look at them, eye to eye, and unflinchingly listen to their pain, then I can also allow myself to hear their hopes and dreams.

At that point, there lies that tiny chance to make a connection, a bridge, between them and me.

The goal for me is to lay aside my pain and troubles and deal with the patients as directly and intimately as I can. It is strange to think that the dying need the opportunity for healing; even in your dying, the need to heal mind and spirit is critical. A Quaker friend once said, “A return to her cosmic address.”

For me, cosmic is two people talking and meeting without fear. Very cosmic.

* * *

The feeling in my bones says that this epidemic is only in its early stages and the worst is yet to come.

The AIDS plague is like hearing an intruder enter your house in the middle of the night, and AIDS is the armed thief. You are alone. Will you confront him? Will you call for help? We are frightened. What will he look like when confronted?

I want people on the Alley to see these people not just as the gay, the African-American, the junkie, or the whatever. I want people to see the patients as real human beings who are still struggling to hold on to their dignity in the face of a disease that denies it at each step of the way.

* * *

Raphael Jones is a Puerto Rican who doesn't speak Spanish, though I wish he would because I can't always follow his English.

Jones said, “I started shooting heroin in the summer of '68 in New York. Later that year my draft number came up. The Army didn't care if I was a junkie; all they wanted was soldiers. In the back of my mind, I thought I'd clean up and get away from all the street business, but there wasn't a chance of it.

“In Nam, all that top-grade smack was too good to pass up; it was like giving a kid a key to a candy store. It was 13 months of constantly being stoned on heroin and never once coming down.

“I was always looking for a place where I could start again, to come back to the beginning, but I couldn't.”

Once back on the streets, it was addiction, prison, sobriety, addiction, and finally here - this AIDS ward.

Jones is like a little kid sometimes, and I enjoy his enthusiasm. Despite a liver that's shot, and his up-and-down temperature spikes, he still sees the humor in this place and makes me laugh.

One cold, winter afternoon, we turn on a Luther Vandross tape and toss around a volleyball with some other guys. Picture this scene - a gay black man, a New York–born Puerto Rican ex-junkie, a black ex-con, and me, this long-haired white guy, chucking around a volleyball and dancing. Priceless.

Jones is always looking out for his roommate, who is too sick to get out of bed. Sometimes he can be a pain in the ass. “Did you get the lip medication for him? Did you do his exercise? Did you get some cigarettes for him?”

As the weeks go by, he gets stronger. One morning, like a rooster at dawn, he yells out from the end of the hallway, “I am the king of this joint!”

I laugh as he takes a mop and begins to swab the floor. I love watching him. There is a fight there that won't quit, that not even more than 20 years of IV drug abuse can quell. I need more men like him with guts and spunk.

Jack, a few beds over from Jones, said to me the day before yesterday, “Is this Chattanooga?”


“Hell, ain't this the last stop on the Chattanooga Choo Choo?” and laughs a wracking, sputum-filled cough.

I know what he says is true, about being the last stop. They know it, but most times don't say it.

“Life, it kicks you upside your head if you don't watch it,” as Henry likes to say.

It's 6:55. Got to go to work. I feel good about going to the Alley today.

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