St. Mary’s Hospital, Long Beach, CA
by Jack Castiglione
(These are true events, with names changed to protect their privacy.)
A call came from our team leader who worked with St. Mary’s Hospital. “Hi, Jack. This is Caesar.”
“Hi, Caesar. How are you doing?”
“Just fine. I’m calling to let you know we have several new clients this week as well as a few still there from last week. Got a pencil?”
“Yep,” I replied, signaling my readiness.
“Let’s see. Peter Davidson is still there in 1120. He seems to be doing well. In fact, he may be going home in a day or so. And you saw Larry Perkins last week in 1106. He’s getting worse. I think he has dementia. Robbie Lome in 1152. I don’t know his condition. He was asleep when I was visiting on Tuesday. And Richard Looper … but, he’s the one you’re not visiting.”
“Caesar, I just can’t connect with him. I just sit there and feel stupid, and I know he senses that too. I make the poor guy more uncomfortable …”
“No. I know, Jack. Don’t apologize. That’s why we have so many team members, some relate to some, and others relate to others. We just do the best we can, and I really appreciate all your efforts, and they appreciate you too! I’ve never heard a negative word about you, so don’t be concerned. Now,… all the others from last week have been discharged or… ah,… let’s see,” Caesar paused a moment as if reading something. “Okay, we have only five new clients. Gary Heron in 1138. He’s about forty, black. Just been diagnosed, but I’m not sure with what. He was doing okay on Tuesday. Be very discreet if anyone else is in the room. His family doesn’t know he’s gay or why he’s in the hospital. Gary Adams is in his mid-twenties and is in 1122, but he might be having surgery or recovering from it. Charles Franklin is in room 1132. He’s forty-six and has PCP.”
“How’s he doing?” I inquired as I quickly scribbled down the brief information. I was not surprised to hear that a client has PCP because it is one of the most common, if not the most common, manifested disease of AIDS.
“He wasn’t in his room when I did my rounds, so all I know is what I told you.” Caesar continued with his list, “John O’Toole is in 1149, and I haven’t seen him either, but I think Gloria said he’s twenty-eight. And finally, we have Ronald Perry in 1130. He’s straight, married and recently diagnosed. They think he is a former IV drug user. They’re doing a lot of tests.”
“About how old is he?” I asked, wanting to form a basic image of those I visit. Knowing whether a patient is straight or gay is important in offering support. It’s also helpful for visitors, especially beginners on the program, to know if there is any major disfigurement so they will not be surprised upon entering the patient’s room.
“I’d guess about late twenties. I didn’t have much of a chance to talk to him. He wasn’t feeling well when I was there.”
“Well, this is going to take a while. I’d better get my ass in gear and out the door. I’ve got a lot of errands to do today.” I told him.
“Thanks for all your help, Jack. Take care. See you later.”
“You too, Caesar,” I concluded, hanging up.
I checked the time and realized it was later than I thought. “Where are my keys,” I asked myself out loud. “They must be in my other pants. Pants? I can’t wear these old jeans to the hospital.” I hurriedly changed and remembered to transfer my wallet to the newer jeans I had just donned. I rushed out the door, trying to make a mental note to stop by the bank for some cash, the pet shop for some rabbit food for Blanche and Harry, and the Post Office for stamps before returning home.
St. Mary’s Hospital was only three miles toward downtown, and I was there in ten minutes. As I approached the parking attendant’s station, I fished my free parking permit out of the glove compartment. The attendant, seeing it, waved me through. I found a parking space on the first tier of the five-level parking structure — never an easy task — parked the car, patted my pockets to find the slip of paper with the clients’ names on it and hurried to the main building.
As I enter the foyer area of the hospital, I sense a conflict of emotions. I’m pleased that there are only eight visits instead of the usual ten or the sometimes fifteen or even twenty. I know from past experience that some of the eight will either not be in their rooms or will not be in the mood for a visit for whatever reason. Yes, this will be an easier day. Yet, there is a quiet chill about the lobby; a feeling of an oncoming thunderstorm. I am surprised to see that no one is waiting for the elevator. It will be a quicker ride to the eleventh floor. I enter and ride up without interruption.
“Ding,” and the doors open with a “whoosh.” I look down the main corridor and begin kind of a death-march pace. I see the nurses’ station ahead on the left, and the patients’ rooms all along the right side of the corridor. I walk slowly as I become increasingly aware, once again, of my own feelings of frustration and helplessness. I am slowed by a pulling heaviness. I begin to feel a sharpness of tiny slivers in my throat. My eyes begin to tear just a little, unnoticeable behind my glasses, as I pass by the first patient’s room that bears the hospital’s standard florescent green infectious disease warning sign. It doesn’t necessarily indicate that the patient has AIDS (Acquired Immunodeficiency Syndrome), but on this floor, if the patient is a male, twenty to middle-aged, it often does.
Unless the patient specifically requests otherwise, the nursing staff customarily leaves the patient’s doors open. Therefore most of these warning-posted rooms have their doors at least partially open, and, as I walk past these rooms, I glance inside, not to stare, not to invade the privacy of the occupants, but merely to notice and to take account of the depth of the AIDS crisis on this particular cloudy Thursday morning. I desire to know how many AIDS patients there are this day. Is the number of cases still increasing? How sick are they? I don’t know why I do this, but it has become my weekly ritual. Instead of making a beeline directly to the nurses’ station to check in, I first walk the full course of the rectangularly shaped corridor, passing by all fifty rooms of this “AIDS ward,” as it is unofficially thought of, but never codified.
I begin to count the posted warnings, and I know the vast majority of these patients are PWA’s, persons with AIDS. As a point of clarification on denoting a person with AIDS, the general consensus of health care providers in this field considers the term “AIDS victim” offensive because it is disempowering. We all know people who refer to themselves at a given time as a “victim” of circumstances. Some people habitually and helplessly whine about their own victimization. It implies that they have no power to control their own lives or to improve their situation, whatever it may be. If we consider ourselves a “victim” of circumstances or a “victim” of a disease, we would be saying that we are not responsible for where we are in life and that we have no personal power to make improvements. I have visited with literally hundreds of PWA’s who acknowledge that they have AIDS but refuse to think of their lives as meaningless or powerless because of it. They are not “victims” but valid, valuable, life-loving human beings who continue, in whatever ways they are able, to be actively involved in exercising the mental, physical, and spiritual powers of their own lives.
As I walk, I think about the various conditions of each of these PWA’s which range from ready to be discharged to actively dying. One closed door has a two-foot square handwritten sign reading “ABSOLUTELY NO ADMITTANCE – CHECK AT NURSES’ STATION.” Like Superman with x-ray vision, I try to see through the solid wooden door. I imagine a very ill thirty-year-old male PWA with his face ballooned in tumorous disfigurement, and plastic medication bags attached to several IV (intravenous) tubes into his arms. He is on oxygen but still laboring to breathe. He is near death. I want to enter the room, to embrace this precious person. I want to sit quietly with him, to communicate every compassionate feeling of my being by simply placing his unconscious hand in mine to bridge my thoughts and hopes and prayers and love to him; but I cannot. It is against hospital policy. I cannot enter a room without prior permission, and that must be given by the patient to me through Project AHEAD.
I am a volunteer who has been specially trained by Project AHEAD (AIDS Health Education and Assistance Delivery) in Long Beach, California, to visit PWA’s. Currently, there are 25 of us assigned to a total of three major local hospitals. I am one of a seven-member team assigned to St. Mary’s, and Caesar is the team leader who coordinates our visits here. Each of us visits a different day of the week, so that each patient may receive visitors daily. I have Thursdays, and I am here to visit all those, and only those, who wish a visitor today from Project AHEAD staff. About half the PWA’s in here have either their own friends visiting or are too closeted and will not allow themselves the luxury of an open discussion of the gay and lesbian or AIDS issues. Others are in too much physical or emotional pain to talk to anyone.
Since many PWA’s are treated as “untouchables” by society and, in some cases, even by some patients’ own families and friends, Project AHEAD created a supportive friend network to visit the PWA’s while they are in the major local hospitals. Our function is simply to be a visiting friend. We visit with each patient for about thirty minutes, listening empathetically. Our training included a wide range of subject matter from a general knowledge of all aspects of AIDS to the art of active listening to the emotions of the five stages of death and dying. Spending time with some patients, especially those who are still in the process of understanding and accepting the implications of their disease, can be an extremely difficult and emotional experience both for the visitor and for the patient.
I stare at the sign, “ABSOLUTELY NO ADMITTANCE – CHECK AT NURSES’ STATION,” resist the desire to enter the room, resist the desire to leave the hospital immediately, and I continue my somber walk down the hall. My motion slows as I pass more and more fluorescent green signs. This is definitely not a good day. So many signs, so many PWA’s, so much dying, so much death. My stomach feels knotted, and my eyes probably look glassy, as I complete the last turn and finally head back to the nurses’ station to check in.
I stand at the counter, waiting to be acknowledged in the midst of the various personnel engaged in their normal controlled busyness. As impatient as I am, I don’t mind waiting. (I can’t believe I said that.) I see the staff doing their jobs, and I hesitate to interrupt anyone. I respect the staff members here more than those at other hospitals I’ve visited. These nurses and other specialized personnel are professional, polite, and very caring, and that includes caring for all PWA’s admitted here. Obviously, not all medical facilities employ enlightened staff that has respect for, and a compassionate understanding of, their patients with AIDS.
With increased awareness brought about through participation in training seminars, hospital staffs are exhibiting improved bedside manners with PWA’s. However, it has been a couple of years since I heard any horror stories about this hospital’s personnel displaying overly cautious, ignorant and insensitive behavior such as food servers leaving food trays on the floor just outside the room of a PWA, instead of taking it into the patient. Little by little hospitals are discarding policies that require or encourage visitors of PWA’s to wear mask, gown, and gloves. These clothing precautions are unnecessary and only cause the patient to feel more isolated and “untouchable.” Gloves are important for the hospital staff when drawing blood or handling body fluids, but visitors don’t need them and should feel free to touch and embrace their friend or family member. Masks, on the other hand, are necessary for staff and visitors if the PWA has a contagious disease such as tuberculosis. In this case, the posted warning sign would indicate that wearing a mask is required, and a box of masks would be provided just outside the patient’s door. I have been required to wear a mask only occasionally due to the patients having tuberculosis, but I never had the need to wear gloves or gown at any time. This brings to mind an important distinction. A contagious disease like tuberculosis or chicken pox is environmentally contractible, meaning that it can be transmitted through the air or by social contact. AIDS, while also a contagious disease, cannot be spread from person to person through the air or by social contact. If is very difficult to get AIDS.
“Can I help you?” the counter attendant whom I presumed was a nurse asked me after looking up from her computer terminal.
“Yes, I’m with Project AHEAD, and I’m here to visit these patients. Ignore the spelling errors.” I said as I handed her the scribbled list. She took it without speaking, picked up a pencil and, with the tip of it, began checking off the names in a manner that indicated she was very familiar with these patients. She is making sure that these people are still in the hospital.
“Perry was moved to 1143.” She muttered more to herself than to me. She crossed off Lome’s name verbalizing that he was no longer there. I didn’t ask if he died or was discharged. “Gary Adams is in I-C-U, and Franks is in 1104, right behind you.” She said as she made a spelling correction on my list. She crossed off O’Toole, (again I didn’t ask why), and then she returned my list to me as she looked up. Her gentle look showed a sense of kindness and acknowledgment. I don’t believe she knew me, but Project AHEAD is well-respected and appreciated on this ward. I nodded a “thank you,” turned around, and without taking a single step, noticed room 1104 was right here.
“I guess we’ll begin here,” I say to myself as I approach the standard heavy wide door which was closed. The warning sign does not indicate that any special precautions are necessary for visitors. I knock softly, as usual, not wanting to wake a patient who is deeply asleep. Without waiting for a reply, I open the door slowly and enter. The lights are off and the drapes are drawn. At first appearance, when I step fully into the room, I think he is sleeping. I call out in a moderately low voice, “Charles?” I’m Jack with Project AHEAD, are you up for a visit today?” His arm moves with a little jerk, but his eyes remain closed.
It’s a judgment call as to whether a sleeping patient should be awakened. If I have been informed either by my team leader or by the nursing staff when I check in that the patient is in persistent pain or needs sleep, I do not wake him. Instead, I just sit by his bedside for a while, observe him and contemplate who he is. Sometimes I wonder if I’m sitting there for his benefit or mine. Under other circumstances, I often will lightly touch a patient as I call out his name to see if he is merely dozing in boredom and would really prefer a visitor. Many PWA’s are hospitalized for two weeks while receiving IV medication, often not in pain, usually tired of their stay and wanting a friend to talk to.
As I approach Charles’s bed, viewing him more directly, I recheck the information Caesar gave me over the phone. I realize two jolting facts: this patient is only about twenty-five years old and therefore not the Charles Franklin who is forty-six who I was assigned to visit. It just dawned on me that the nurse said “Franks.” Secondly, he is not sleeping. I have intruded into a private, reverent moment. I am wrapped in the sensation of something sacred. Uninvited, I am sharing the conclusion of a human life. My careless judgment of his impending death plunges me into thought. “How could I think such a thing? I’m not a doctor! Why do I feel these things? Why do I see so much! Why is there so much to see?”
I noticed a pamphlet on AIDS on the side table. “Why is this massacre happening?” My thoughts continue to challenge my knowledge. “Why is AIDS invading hundreds of thousands of lives? Damn this disease! Infecting and murdering thousands and thousands of people, thousands and thousands of young men! So much death! So much wasted life! Does anybody care? Don’t people realize that we are being dissolved away by a horrendous plague? Fuck this dastardly disease! Damn those idiots who sadistically relish the thought that AIDS is killing `homosexuals!’ `Those queers are getting what they deserve!’ Those fucking judgmental `Christian’ fundamentalists who smirk at the `victims’ of this devastation! Damn all those who claim to wrap themselves in the cloak of Christ to judge and hate and applaud the selection of AIDS’ prey! Damn anyone who has mistreated a PWA, anyone who has evicted a `loved one’ from his or her life! Damn the narrow-minded, bigoted `purists’ of America who seek to spread lies to heighten fears to control others! Such bullshit! Damn anyone who has thought, `Thank God, it’s them, not us!’ or `It’s him and not me!’ Damn all those who have not prayed on their knees, in tears and sweat, for a cure for AIDS! Damn all the bastards who don’t give a damn!”
In anguish, I continue to stand there, silently screaming over the nearly lifeless young man. I begin to cry. My emotions drain from me in tears. I just stand there and cry, trying not to make noticeable sounds. I don’t want to be heard, but it hurts so much. It hurts so fucking much to see all these people dying.
I was screaming in my mind to myself, “Life is so precious. This kid is so precious. I don’t want him to die. Why is he dying? He is so young and so innocent. I don’t know him, but he is my brother. I want so much for him to be cured. I don’t want him taken away from his friends and family, from life. So many have died of AIDS. Millions may be infected.” No more death. Please, no more death. It is so, so difficult for me, a stranger. Imagine how loved ones are so torn apart.”
My silent rantings were interrupted by the sound of footsteps nearing behind me. I quickly compose myself, inhaling sharply, turning around to see who has just come in the door. The stereotypical nurse smiles, signing that she is glad to see the patient has a visitor. Without waiting for either of us to say hello, I volunteer that I am with Project AHEAD and start to tell her that I entered this room in error. She had no need of an explanation for my presence, saying, “I’m glad you’re here. He hasn’t had any visitors.” Then there was a long silence as we both gazed at his limp form in silent wonder. At times like these, words are completely superfluous. The nurse and I understood each other in a glance and appreciated each other’s concerns for this man, who I now understand is Mr. Franks. He is a human being that neither one of us knew, yet we both loved him.
“Marta,” I said after finally reading her name tag, “I don’t know if it’s okay for me to be here …”
She interrupted, “Please sit down and stay with him a while.” More silence. I sat down in the chair closest to the right side of the bed.
“Is he responsive at all?”
“Not in the last several days.” She replied while continuing to look at Franks in a motherly way. Her eyes were just a little glossy. Additional words were unnecessary. An AIDS novice might ask questions like, “What is his illness? How old is he? What medication is he on? Is he going to make it? How long does he have to live? Words. Questions. Stupid questions. Those of us who have been around PWA’s know the futility of these inquiries.
Glad that I was there, Marta stepped closer to the IV bag connected via a tube to Franks’s left arm, adjusted her glasses on her face as she stared at the plastic drip bubble, and then thumped it. Satisfied and without saying a word, she smiled at me and then left the room shutting the door behind her. It is like being in a huge vault. There are no distractions. It is solemnly quiet. And here I am. Alone with my new friend. Quiet and alone, in this hallowed room. He makes not a twitch or a tic; not an audible breath. It’s just Franks, and me, and silence.
I move my chair closer to the bed. Cautiously I reach out to touch his hand, foolishly wondering if I am going to wake him, or if he is suddenly going to jerk it away from my touch. His hand is warm and smooth, and I place it palm down on my hand almost in a handshake position, and I caress the back of his hand lightly with my thumb. I rub it softly to let him know that I am here. His naked body, which is half covered by a pristine white sheet, begins to twitch for a moment as if dreaming that he is running.
I wonder who he is. What kind of person he is. He looks about five foot eight, about 140 pounds. He’s a nice looking man with unusually well-tan skin for someone who has probably been ill and bedridden for a long time. His straight light brown hair is long enough to cover his ears and his fuzzy looking beard of perhaps two or three weeks growth probably makes him appear older than he is. His tan skin must be his natural color, but what nationality is he? He looks like a typical Southern Californian. The hair on his arms and chest is sparse. His build is nice but thin but unlike many PWA’s, he has muscle tone. Some patients I visit have become ghostly thin with hollowed cheeks; I can’t help but be reminded of those photographs of Jews who were starved in the German concentration camps during World War II. Sometimes the AIDS virus will waste a man into mere skin covered bones.
As I continue to make tiny circles with my thumb on Franks’ hand, I become more aware of a spiritual sense that is always present when a patient is in the process of surrendering all energies. There is a presence of a power that is either controlling the events or perhaps just standing vigil. It is as if the ending of life is a holy process, commanding heaven’s administrative personnel to make preparation for the transfer of the spirit. I feel so purposeless, so in the way. Am I doing any good by being here? Is Franks even aware of my presence? His body starts a minor tremble and then begins to shake a little more. I think to call the nurse, but I don’t.
I put my other hand on his forearm and pet it as though I’m stroking the back of a kitten. “Franks, I’m here with you. Is it okay? You’re not alone, I am here and I care about you, Franks.” I wish I knew his first name. His shaking stopped abruptly. “I wish I’d met you before and knew something about you.” He lay still, quiet, and unconscious as I spoke. “I suppose the most important thing to say is that I care about you, Franks. You are my friend. Franks, you are important. You are an important part of the universe. I don’t know if you realize it, but you have touched many, many lives in various positive ways. I don’t have to know the particulars; I’m a pretty good judge of human nature.” His body shifted towards me, just a slight subconscious movement.
“I wonder what you’re thinking and feeling right now.” I paused to consider what possible thoughts I might have had, were I the one lying there. I continued to rub his arm and playing with the dark blondish hair from his wrist to his elbow. Looking at his sealed eyelids and seeing his eyes darting back and forth underneath them in spurts of erratic motion. I continued to contemplate this young man’s life, who he is, what is is like, socially, what kind of work he did, or maybe he was still in school.
I gently placed his hand back on the bed, stood up, and touched his forehead brushing back his silky hair several times. “Be at peace, my friend,” I whispered, and quietly left the room. I had to go outside to somewhere private to cry over my feelings of helplessness. After every visit with every patient, I come away uttering the same phrases, “Oh God, what a waste of precious life!” As I passed the nurses’ station on my way down the corridor to the elevator, I remembered the other “Franks,” Charles Franklin. Halting momentarily in my tracks, I collected my thoughts, took a deep breath and stepped again over to the counter of the nurses’ station. As usual, I will cry later, in my car, while driving home.
As I faced a different nurse this time, I simply introduced myself, asked if Charles Franklin was in room 1132. This nurse checked a chart on the wall, smiled and nodded a yes. I thanked her and began visiting the patients on my list. I thought I’d start with Gary in 1138, the nervous newcomer. I have a habit of not visiting patients in the order of their room numbers. At times I saw the new ones first, or the sickest ones last, or, in whatever order I felt would be easiest on my energy. I walked over to Gary Heron’s room, looked at my notes before knocking, and reminded myself about his need to be very discreet. I heard cheerful voices through the tightly closed door so I didn’t enter or even knock. It sounded like family members were visiting. I left with the idea that I would return later, but knowing he already had visitors, I wasn’t going to worry about my seeing him.
Off I went to the other end of the corridor to see Peter Davidson. Since I had been there twice before, I went right to it without being attentive to the sequence of descending room numbers. I was thinking positive thoughts about Peter. From a short distance away, I saw that his door was half open. With inner anxiety, I stepped to the door and cautiously peered inside, attempting to prepare for whatever condition Peter might be in. “Thinking positive” is well and good, but it can really leave one open for a startling blow to the gut. “Peter!” I boomed after seeing his erect form sitting in bed staring disinterestedly at something on the television. I reminded him who I was, as I customarily do when I enter a room. He acknowledged that he remembered. “You’re looking pretty good, Peter! How are you feeling today?”
“Good enough to go home, but my doctor hasn’t told me when yet. I keep on askin’ and he keeps on not tellin’.” Peter, who was the typical blonde from the South, was thirty-two and spoke using a bit of humor and his cute twangy tones. “I was supposed to be here ’bout two weeks, and this is my nineteenth day. For all the good it’s doin’ me, I might as well be home.”
“How’s your vision doing?” I asked, knowing from our prior sessions that this was the reason for his being admitted. He lost all sight in his right eye about a month ago when his vision seemed to fade suddenly into a total blur. AIDS draws the most uncanny illnesses I’ve ever heard of. Previously seldom seen diseases have become commonplace with AIDS.
“Well … it’s ’bout the same. I really can’t see much out of my right eye at all. The doctor doesn’t really know what the problem is.” Peter replied, talking slowly which seems to be a combination of his being bored and his normal speaking manner.
“Is it a question of distance? Are you able to see the TV clearly?” As I noted that he was glancing at it from time to time during our talk.
“I’m just usin’ my left eye, really can’t see much out the other.” A pause, then, “Do you know Eddie? Did you meet Eddie?”
I looked at him blankly trying to figure out who “Eddie” was, “Which Eddie?”
“Eddie down the hall. I visited him yesterday.”
Guessing that he was referring to another PWA, I answered, “No, I didn’t meet him. He probably hasn’t requested visits from Project AHEAD.”
“He’s an AIDS patient with no sight in his right eye. I can’t see out of my left, and he can’t see out of his right, but together we’d get perfect twenty-twenty vision.” We both displayed a brief grin that vanished in contemplation of the frustrating realities of the disease.
“Jack, I really appreciate your comin’ here. I’m really tired of this place, though. I just want to go home.” And then he repeated with more exhaustion, “I just want to go home.”
“I hear you, Peter. You’re looking good, and you’ll be home soon.” I asked, “Speaking of home, does … ah … Jerry? — that is your lover’s name, isn’t it? — come in to see you often?”
“Yeah. He comes every evenin’ as soon as he’s off work. I sure miss ’em.” Peter smiled as if thinking pleasant thoughts.
“How long have you guys been together?”
“It’ll be eight years, September fourteenth,” Peter said, continuing to speak with a slight grin.
“Is he your first?” I asked wanting to know if this was his first lover relationship; I could see that it was an agreeable distraction for him so I continued on the topic.
“First. Last. Only. What ’bout you, you have a partner?”
“No. You’ve been luckier, I never made it past the two-year mark.” “Luckier!” I repeated to myself. I bit my tongue for using that word with a PWA! I quickly added, “But … then again, I really haven’t been ready for a long term commitment. Although, it has been ten years and I’ve grown up a lot. Maybe … well, if the right guy comes along. I just don’t want to make a halfhearted attempt. Tell me, where did you meet Jerry?” I inquired, bringing the discussion back to him.
“It was at MCC (Metropolitan Community Church), you know, the LGBT Christian church?” Peter asked, and went on after I nodded. “The first thing I did when I moved to California was to find MCC. We met there on my first visit. Jerry was so handsome. He was trying to be so helpful to me ’cause I was a stranger. We dated for four months, and then tied the knot.”
“Did you guys have some sort of a ceremony? I know one pastor at Metropolitan Community Church in Long Beach that performs weddings, but the other ministers I know do not. And, of course, Dignity — the gay Catholic group I told you about — won’t either.”
“Actually, Jack, we just made a private commitment. I didn’t know anyone at MCC or from anywhere else, for that matter, that had a church wedding. I would have liked it for us, but at the time, I never heard of gays doing that. And Jerry … well, Jerry doesn’t like public attention.”
“What kind of work does he do, Peter?”
“Oh, he’s an aerospace engineer at TRW. He has a top secret clearance and everythin’!” Peter bragged.
“Do they know he’s gay?” I asked flat out.
“Yeah, the managers knew when he applied, and from the way some of them red necks talk, I guess most people know. It’s no problem if you can handle the jokes and jabs.”
“I have a few friends who are in similar `secret clearance’ situations. Their being gay is not an issue either. From what I understand, if you try to hide that fact, you’re subject to blackmail. If you don’t try to hide it, blackmail is not a possibility, and therefore, being gay is not an issue…”
“Jack,” Peter interrupted. “Being gay may not be much of an issue to be hired at TRW, but those places seem to attract a certain percentage of narrow-minded militarist. You know, the guys that think deer huntin’ is more sportin’ with an AK 47 assault rifle? Jerry minds his own business and he’s liked by most guys there, but he’s always comin’ home talkin’ about all the fag jokes he hears every day. Every time there is some kind of a gay issue on TV, the guys start rankin’ on us, and gays in general I mean. He’s had to learn to let it go in one ear and out the other.”
“Yeah. I know. It is a problem. It’s too bad that TRW management, and the management of all these macho defense contractors, don’t issue policy statements condemning discrimination and harassment of gays. But the point I was making is that governmental security clearances can be obtained by gays if they are up front about their orientation … at least if we’re talking about California companies.”
Peter nodded in agreement. We talked a while longer about Jerry and him, and I was so glad to see him in a loving relationship. There was a tremendous amount of support being shared. Every time I talk to people who are in stable committed relations, I rethink my own wants and question my hesitation.
“Will you come and visit us at home?” Peter asked, anticipating a “yes” response, like a child asking for candy and expecting to get it.
“No. I can’t. It’s against the rules. I’m only allowed to visit PWA’s while they are here in this hospital. I guess they figure that if we visitors follow people home, we’ll turn out to be more like `buddies’ than hospital visitors. And there are buddies available, although there is always a waiting list. You can look into that. Just call the Project AHEAD office number I gave you last week and see what they say.” I told Peter. He understood.
“No, I don’t think I need a buddy. I have Jerry and lots of friends from MCC. They’re good family. But I do think I’ll look into other support services offered by you guys.” He said and we concluded our visit.
“Okay, where is Ronald Perry? He’s in room … ah … 1143.” I interrogated myself as I turned the corner to find his room. The door was half open. I think patients do that so they have some privacy. I knocked softly as I opened the door to look inside to see if he was there and awake. “Hi, Ronald Perry?”
“Yes?” The Black man replied with a grunt.
“I’m Jack with Project AHEAD. Are you up to a visit today?” I announced cheerfully.
“Oh no. Not right now. I feel like shit. Okay man?” His face was contorted with pain. “Could you come back tomorrow? I’d appreciate it.”
“Yes, of course. I’ll let you rest. Take care, guy.” I told him, not bothering to explain that someone else would be by tomorrow. This experience is quite common as many of the PWA’s I attempt to visit are either out of their rooms, with their own visitors, or just not in the mood to have anyone visit at that time. So, again I check my list. “I’ll see how Larry’s doing,” I mutter out loud. “Let’s see, he’s all the way at that end.”
Larry Perkins is a sixty-year-old lanky man whom I have seen a couple of times before. He reminds me of a professor of economics. He just has that studious, dignified appearance. I am always interested in knowing what one’s occupation is so that I may relate to that part of the individual’s life. But it is often a painful question because it reminds PWA’s of what they “used to do,” or “who they used to be.” Therefore, I discuss it only when the patient brings up the subject in the course of our conversation. It seems an inappropriate inquiry with Larry. His condition is deteriorating, although he is fairly alert today. I can tell by the changed expression on his face as he looked at me entering his room that he is pleased to see me. It isn’t a smile, his expression is usually deadly serious, but his bored stare is immediately replaced with a look that indicates that it is important for me to be here. Although the television is on, he gives me his full attention.
In some ways, he seems better. His color looks less pale, and he doesn’t feel clammy when I very gently shake his hand to greet him. Actually, it is more as if I just placed my hand on his for a moment. But he has more trouble speaking; and, perhaps, he is even thinner than when I saw him last week. His hands shake in a wobbling tremor whenever he tries to move them. I stare at him as he tries to lift his right hand to his face. He is so weak, and his hand is trembling so much, that it seems too great a strain for him to reach it all the way to his face in order to undertake the exhausting task of adjusting his glasses further back on his nose. After I realize that that is what he is attempting to do, I adjust his glasses for him. Larry says, “Thank you,” making every effort to pronounce the words correctly.
I notice that Larry’s oxygen tube, which is supposed to fit snugly under his nose, is falling off, I adjust that too. “Thank you,” he manages in his shaky voice. A moment later, “Water.” I look around for the standard, mustard colored, hospital-issue pitcher and cup and find them behind me on a moveable tray-like table. I fill up the cup which already has a straw in it and lift it to his month. After a few feeble attempts, he successfully sips about half of its contents. He was indeed thirsty. Again he utters, “Thank you,” as I return the cup to the table behind me. I think, for a moment, that I should roll the table over closer to the bed, but he would not be able to pick up the cup anyway. I leave it where it is.
“Is your head comfortable, Larry? Would you like me to fix your pillow for you?” I ask in a louder than usual voice thinking that he may not hear well as noticed that his head seems to be propped uncomfortably. Larry nods. I move the pillow to give more support at the back of his neck, and again, comes the polite, “Thank you.” His lips are black, not bluish or purple, but black. This black skin appears to be coming off in tiny patches. The skin on his arms and the top of his balding head is very dry and flaky, probably due to his various medications or to dehydration.
Larry is as helpless as an infant, yet he is no less of a human being. AIDS is depriving him of his strength, mobility, vitality, productiveness, independence, self-control, and soon, I feel, his life. But AIDS cannot take away one’s dignity, self-respect, love, spirituality, credibility, social worth, pride, and the innate knowledge that we are all an integral part of the universe. Some people may think that AIDS has that power, but it is only in their minds and in their perceptions. In my sense of helplessness, I am at a loss for words. As on the previous occasions, we didn’t talk much, but we communicated more fully through nonverbal and empathic methods. I didn’t stay long. I wanted Larry to be hopeful, but, at this particular point, I had no hope to give him.
As I left Larry Perkins, I thought of myself coasting from emotion to emotion, observing but not participating, full of help but void of healing, ready to do anything but able to do nothing. Nothing that mattered one damn! Nothing that could divert this rain from Hell! Nothing!
I looked up to notice Gloria waving to get my attention from down the hall. She’s the social worker who not only serves as the hospital’s liaison with Project AHEAD, but also helps PWA’s connect with support groups and organizations, financial aid, housing upon their discharge from St. Mary’s, and conducts invaluable one-on-one counseling to meet individual needs. I guess one of her most important attributes is that she feels very comfortable working with gay men. In fact, she helped me confront an anti-gay priest who, as far as I know, has not returned to visit PWA’s here. He was called to visit a patient, probably by a family member who was unaware that many priests feel very uncomfortable ministering to the needs of PWA’s, or gays, for that matter. Although there were not special precautions indicated, the priest refused to enter the patient’s room. From the doorway, he “flipped” the consecrated Host onto the patient’s bed, and then quickly left. The patient felt humiliated and angry. I asked Gloria to talk to the local bishop about the priest.
“Hi, Jack!” she said jovially as she approached smiling, always being upbeat, helpful, and loving.
“That makes you a `hi-Jack-er’,” meaning “hijacker,” I kidded, even though this was an emotionally heavy day.
“I guess it does,” she thought, grinning broadly. “I wanted to ask you to visit Charles in room 1132. He’ll probably be leaving in a few days, and he’s a little apprehensive about going home to a hospice. He can really use a visit from you.”
“Of course, he’s on my list and … in fact, he’s next on my list,” I told her as I glanced down at the paper in my hand. I thought of telling her about my visit with Mr. Franks, and that I was not feeling very cheerful, but I didn’t.
“Oh, great! I know he’ll appreciate it. Thanks, Jack.” Gloria concluded as she touched my arm as a sign of affection, and started off. But before she got more than a few steps away she stopped suddenly and returned to add, “Oh, it may be helpful for you to know that Charles is straight.” Then off she went in the other direction to continue her own special rounds.
“Now to see the mysterious Mr. Charles Franklin in 1132,” I mutter to myself. “He’s going to a hospice house. I hope it’s not Jim Johnson’s. That bastard!” I continued to mumble as I walked in the direction of his room. How strange. How very strange, I thought. Charles is going `home.’ When most people `go home’ it is to their family, even if it means going to New York or Tennessee or wherever they are from originally. Sometimes it means going back to their own apartment to be home with their friends, or maybe it’s to be home with a lover or perhaps with a person who’s a caring roommate. It could even mean going home to a wife and children. But not for Charles Franklin. For him, `going home’ meant going to an AIDS hospice house, one of ten in Long Beach. They are often a modest, homey residence where PWA’s can live when they are physically unable to live alone, and their loved ones can’t, or former loved ones won’t take care of them. The hospice is an undesirable dwelling to anyone with housing alternatives, but it is no less than an element of basic survival to the otherwise homeless PWA. It is a place to pass the time, precious time until there is no more time.
“Yes,” responded a wide-eyed, salt-and-pepper-haired, healthy looking man of 46.
“I’m Jack with Project AHEAD. Are you up to a visit today?”
“Sure.” He said without hesitation.
“Can I just say that I’m gay and you’re straight. Is that okay with you, Charles?” I wanted to set the ground rules up front so we could talk candidly.
“Sure. I have friends who are gay. Being around gays is no big deal. I’m in the entertainment field and work with a lot of gay guys.” He was animated and easy going at the same time.
“Then it doesn’t bother you that as a PWA you will be working with, and in the company of, a lot of gay people. That …”
“`PWA’?” Charles interrupted.
“Person with AIDS,” I said simply, somewhat surprised that he didn’t know this acronym.
“`PWA.’ So it all comes down to three little initials. P-W-A.” It sounds so strange,” he reflected. I guess we had caught each other off guard.
“Charles, maybe we should start from the beginning. Have you received and information about AIDS? Have you been to any support groups at the hospital here? Are you aware of groups like Being Alive and Project AHEAD?”
“No to all of the above.” He said exhausting himself and with a contemplating look on his face. I was realizing that gay people, whether infected with AIDS or not, are so bombarded with so many experiences of the various repercussions, effects, and treatments of this disease that they are kept quite informed, whether they want to be or not. The straight community has been largely uninvolved. Straights have not just been sitting on the sidelines; they haven’t even been watching the game!
“Okay. I’m going to give you some basic information and some very important support groups to contact.” I grabbed the arms of my chair, and without standing up very much, scooted it closer to the side of his bed. After adjusting the chair, I pulled out my wallet from my back pocket before sitting back down. I thumbed through it as I began to speak. “I’m going to give you some phone numbers. The first and most important is for Project AHEAD. This is the umbrella organization that provides, or helps to channel, many different types of services to PWA’s, like food, in-home care, transportation services, health care information, help for filing for state and federal financial assistance, and so on. The second group is Being Alive. It is a self-help organization consisting primarily of people with AIDS and HIV infection. They sponsor potluck dinners, rap groups, emotional support activities, and guest speakers to talk about the latest discoveries for treating AIDS.” Charles was listening intently and even writing down notes, so I went on. “The third group, or system of support, is right here at St. Mary’s. I believe you’ve met Gloria who is the social worker here and the key person to tell you all about the out-patient care and programs offered by this hospital.” I paused to ask Charles if I was overwhelming him.
“No, Jack. I need to know these things. I mean, someone has got to tell me what’s what. I’m going to contact these groups tomorrow. But what other basic information do you have for me?” He remained calm and was trying to take this all in.
“There are also some books on helpful and healthy things that you can do to help yourself. I think one is called the AIDS Manual. It’s rather thorough in including do’s and don’ts about foods, exercise, work, pets, cleanliness, and eliminating things from your life like smoking, alcohol, drugs, caffeine, dangerous sexual practices, other no-no’s, and all kinds of useful and crucial stuff like that.”
“It’s not going to be easy giving up some of these things.” He told me without specifying which ones posed the greatest problems. I didn’t ask. I figured he needed time to digest all this. After all, he’s facing the beginning of a totally new life. Everything may be changing, his friends, his work, his leisure activities, his residence, his habits, his sexual activities, everything will be impacted.
“I’m glad I don’t have to tell you it will be easy. I don’t like to lie. I don’t have AIDS. But I live with it every day. It’s all around me. Not just here at the hospital, but at home too. My best friend, James, who is also a close neighbor, has AIDS, and it scares the shit out of me.” I started to choke up. Charles remained silent as I regained my composure. “There is something `fortunate’ about James and you too, you both have PCP. It is one of the diseases that now has a damn good treatment. James was diagnosed with PCP two and a half years ago and never got it again. He, probably like you, will also, receive continued preventative medications. They seem to be working fine. So I feel things are not hopeless, some people are doing very well without acquiring more illnesses.”
“Is your friend working?”
“Yes. He went back to work. But he switched to a job that has less stress.” I lied. James is doing well but often feels a loss of energy, too much so to return to work. However, he does stay very active. And other PWA’s have returned to their jobs, so my instilling hope in Charles is actually based on reality. That’s okay, isn’t it?
“That sounds like good news.” Charles perked up his voice.
“I understand that you will be going to a hospice in a few days.”
“Tomorrow. To St. Martin’s.”
“St. Martin De Porres’. But why a hospice?” I asked, thinking that St. Martin, who is considered by some historians to have been gay, is probably the unofficial patron saint of gays and lesbians. (Don’t let John Paul II know that; he’d make Martin turn in his rosary!)
“Well, it’s just temporary. Since I’m self-employed, I don’t have medical insurance. Gloria is helping me apply for Social Security and SSI, but I guess that could take a few months to line up. I gave up my apartment when I came in here, and since I live alone — I’ve never married — I couldn’t afford to keep it, not with all my expenses. So, I need a temporary place.”
Charles truly appreciated my straightforward approach in talking with him. We discussed various topics, all relating to AIDS; and he continued to jot down bits and pieces for later assimilation and follow up. He was very interested in helping himself, and that was the best sign of all. We exchanged goodbyes, and I left his room feeling better about this day but I could not stop thinking about what he will face in a hospice.
“He’ll be going to St. Martin’s AIDS hospice house,” I thought aloud as I walked toward the elevator. St. Martin’s is as good as most. How interesting! A dozen “houses” in the Long Beach area though most of them are operated by different individuals and groups always seem to have the same basic characteristics. For many, they are homey places to die. I thought about the hospice house as I walked to my car to drive home — to cry.