malcolm marler

on a mission to embody grace and compassion in all relationships

Month: February 2009

My Congregation Is HIV Positive, And So Is Yours

I want to continue my thoughts from my last post when a patient asked me where my church is when he heard that I’m a minister. I responded with “It is here, you are sitting in it.” I wasn’t kidding.

This clinic really is my congregation, and I love its members and staff. If I’m honest there are a few members I don’t particularly like, but I try to love ’em anyway. I’ve been a pastor here for 15 years. Its a pretty tight community.

How is our HIV Clinic like a congregation, and how is it different from most congregations?

Like many congregations:

  1. We are a growing congregation with about 7-10 new members every week.
  2. Our goal is to keep new and existing members coming back on a regular basis so that they can have a meaningful and full life.
  3. We have a new members’ orientation process so that we can take time upfront to get to know one another and know what to expect.
  4. We are between 18 and 80. Many of our members bring their children with them.
  5. Some of our members are hospitalized each week, and our staff visit them and let the rest of the staff know how they are doing.
  6. We have a weekly staff meeting and work hard trying to figure out how we can care for our members more effectively.
  7. We pray for our members.
  8. We have yet to find one of us who is perfect.
  9. If you are sad or depressed or afraid, this is a good place for you.
  10. We always have more needs than we have the budget to meet those needs.
  11. We call every member during the week of his/her birthday to wish ’em a Happy Birthday.
  12. Many of us are HIV Positive, some of us are not.
  13. Many of us are unemployed or under employed, while others teach in respected institutions, are attorneys and physicians, serve as restaurant managers or as school teachers. Some of us have no income while a few of us make six figures.
  14. We are gay and straight and bi-sexual.
  15. A few of us have no faith and some of us have lost faith.

Different from many congregations:

  1. We have people drive from all over Alabama and neighboring states to see us.
  2. We have almost an equal number of black and white members with a growing Hispanic population.
  3. We are interfaith including Christians, Buddhists, Muslims andJews.
  4. Judgment is not in our job description.
  5. Our staff members call more than 20 countries home.

We are parents, spouses, partners, brothers, sisters, nephews, nieces, uncles, and aunts.

My main point is our congregation is a community of people who are like most congregations.

Most of all, all of us are children of God.

My hunch is your “congregation” is right in front of you too, open your eyes and see.

What Is An HIV Rev?

Recently one our patients at the clinic where I work looked at my name badge and saw the word “Chaplain.”

“What the heck is a Chaplain?” he asked in good faith with a wrinkled brow. “Good question,” I said.

He was not interested in knowing how many degrees I had from a theological graduate school called a seminary (although I have been asked “What cemetery did you go to?”). He was not interested in a sermon.

I tried to find a word that might connect with his faith experience. I said, “You know, like a pastor, priest, rabbi, or imam?”

“Uh huh,” as he squinted his eyes and looked at me skeptically. “What do you do here?”

I took a deep breath and said “I listen to people and try to meet them where they are, and make sure they know we care about them.”

“So where is your church?” he asked. “You are sitting in it,” I said smiling. “This is my church. We use chairs and exam tables instead of pews.”

He looked at me like I didn’t understand his question. I looked at him like he didn’t understand my answer. We both smiled.

There was a knock on the door in the middle of our sentence as the doctor walked into the room to begin his medical exam. I shook the patient’s hand, gave him my card, and told him I looked forward to talking more when he had a chance.

“See ya Rev,” he said smiling. Maybe he understood more than I knew.

I wanted to tell him more.

I wanted to tell him what a special place The 1917 Clinic is and that I think we are the only HIV Clinic in the United States who employs not just one, but two full time chaplains because of people like Dr. Michael Saag (founder of the clinic in 1988) who cares for the whole person, physically, emotionally and spiritually.

I wanted to tell him that I love finding a need in the clinic and figuring out how to fill it, whether it appears “spiritual” or not.

I wanted to tell him that he was loved, that he is a child of God, and that we care about him. I will next time.

But today, on Ash Wednesday I will pray for all of my congregation called The 1917 Clinic at UAB where all God’s children are welcome. This is a place where we all fall short of the mark, and if it weren’t for God’s grace or forgiveness we would all be in trouble.

A View from the Other Side

This week I have been reminded what it is like to have a family member who is ill. I am usually on the other side of this equation being a member of the medical team who cares for persons who are sick and their family members. The shoe is now on the other foot.

My frail 80 year old Mom was admitted to the ICU in a rural county hospital, again, and then transferred to a nearby nursing home for rehabilitation. We believe the move is temporary in order for her to gain strength, but who knows if this will be the case or not?

The “not knowing” is harder than dealing with the reality.

I know deep in my heart what is coming, and realize there are some things I wish I had talked about with her in greater detail. Legal matters, matters of the heart, family matters, and some things that don’t matter.

I am reminded of the feeling of powerlessness of seeing someone you love deeply who is in pain, or who feels sick and weak, and I am aware I cannot fix it. I can be physically present as much as possible, and work on the details of her care between responsibilities at work. My wife is an amazing support, my Mom’s niece took off work for a week, and my sister made phone calls. The communication with all involved is still exhausting.

While I am concerned for her health, I am reminded that this is what it feels like for family members of our patients (and much worse). Sadness, anger, fear, frustration, fatigue, love, compassion, gratefulness, and more are all wrapped together in a tight package.

I am trying to remember to take advantage of the moments when we were alone for a couple of hours like a couple of nights ago.

I sat with her in the hospital room as she drifted between sleep and alertness. When she slept, I used that time to be quiet, to pray prayers of thanksgiving, and prayers of guidance, and prayers of trust and letting go.

When she was awake we used the time to tell each other how much we loved one another. We reminisced and told short stories, some funny, some sad. We talked about my Dad who died over a decade ago and both agreed what a fine man he was. We both apologized for things that were quickly forgiven and dismissed.

And so the next time I see a family member with a fatigued or worried look on his or her face, I’m going to slow down a little, listen more deeply, and hug a little harder.

I am reminded of the view from the other side.

The Lost and Found

I have worked closely with my colleague, Dr. Jim Raper (pictured right), for almost 15 years in the clinic. I am amazed at his work ethic and compassion for the human family.

Recently, I was struck by his patience with a woman at the clinic whom he refers to as “one who is lost.” Of course, Jim is not referring about whether she is going to heaven or hell as some of my faith community colleagues might be thinking.

Instead, when he says she is a “lost soul,” he is simply stating a fact that she is dealing with multiple issues (in addition to HIV) that make it almost impossible for her to do well physically, emotionally, and spiritually. Too many things are going on at the same time.

Her life is in transition, she moves often, and is addicted to pain medicine. The first thing she looks for when moving into a new town is a doctor who will write pain med prescriptions for her. Her pain is the kind of pain that is like a thin fishing line that has become entangled so tight that it is impossible to tell where it begins or ends. All she knows is she is hurting.

At the same time, she ignores her HIV care for long periods of time. It has been a few years since she has taken her medicine or seen anyone for her care. Like many of our patients, she starts and stops taking her HIV meds which gives the virus an opportunity to build resistance and those meds are no longer effective. Plan B has been tried. She must be at Plan “D” or “E” by now.

She wrestles with other untreated demons including clinical depression, a long string of marriages that ended in divorce, overwhelming poverty, few connections to family, and more.

She has truly lost her way. Jim is right. She IS lost.

And now the question is, “Can she find herself? Can she find her way? Can she be found?”

And so she returns to the clinic after 3 years this time and says, “I’m ready again for your care.” We open our arms, give her a hug, and welcome her back.

Maybe this time, one who is lost will be found.

Jim rolls up his sleeves and goes back to work.

Thank God for people like Jim Raper and places like The 1917 Clinic at UAB where the lost have an opportunity to be found.

Breaking Down Barriers to HIV Care

I had lunch with 20 of our patients this week and asked them to teach me about “Barriers to HIV Care.” I asked,

“Are you aware of reasons that might get in the way of you coming to your doctor’s appointment?”

The lunch group listed the following reasons:

  1. Transportation — “distance, having a dependable car, public transportation, etc.”
  2. Depression — “If depression is severe enough, nothing else matters.”
  3. Stigma “What will others think of me?”
  4. Relationship with Medical Team“Does my Provider listen to me, does he/she care about me?”
  5. Fear “I might hear bad news.”
  6. Denial “I don’t want to admit to myself that I am HIV positive.”
  7. Shame “I feel so embarrassed about having HIV.”
  8. Frustration “Sometimes I have to wait so long to see my doctor.”
  9. Drugs and Alcohol“This can destroy the best of our intentions.”

Next, we talked about the above list compared to the response of 267 New patients who responded to the same question as above when they came to our clinic between May, 2008 and February , 2009 for Orientation. (These patients could mark more than one reason from a list given, so the percentages do not add up to 100%.)

  1. Transportation — “I do not have reliable transportation.” (31%)
  2. Depression — “Sometimes I get depressed and lose hope.” (10%)
  3. Stigma — I am concerned about others seeing me come to the clinic.” (10%)
  4. Relationship with Medical Team–“It depends on if I have a good relationship with my doctor.” (10%)
  5. Distance/Time — “I live a long way from the clinic and the distance or time is a problem.” (10%)
  6. Memory–“I have a hard time remembering appointments.” (7%)
  7. Phone–“I do not have a phone where I can be reached by the clinic.” (5%)
  8. Good Health–“If I am feeling well, I’m not sure I need to come to the doctor.” (4%)
  9. None—“Nothing will keep me from coming to my appointment.” (45%)

Transportation, Depression, Stigma, and Relationship with Provider are consistent in both groups and may give us some starting places as we develop a new project to help break down some of these barriers to care.The group’s advice to me was to start with getting people into mental health care immediately if depression is identified in Orientation, and spend just a little time reminding our Providers how they can continue to make a difference.

But what struck me most was the profound gratitude of the lunch group who said, “thank you for listening to us!” I have learned they are the teachers, I am the student.

They are also grateful for what this clinic is already doing to make their lives richer and more meaningful. Several of them have offered to see how they can help their peers break down the barriers to care as well.

I dream of a day when the barriers to HIV care will come tumbling down.

Today felt like another step in that direction.


Stupid Not To Ask

The frantic female voice on my voicemail yesterday said,

“I feel really stupid asking this, but I just have to ask! I am a nurse, I know I should know better, but I was in a couple’s home yesterday and at the end of our conversation I asked them how their health is and they said they were HIV positive! I didn’t flinch, told them I would pray for them, and left soon after that. I am scared to death! Please call me back. I have small children, could I have gotten IT when I was at their house? Oh my gosh, please call me back!”

The above paragraph was almost like a single sentence without a period. She kept apologizing over and over again on the message. She was so embarrassed.

I love these kinds of calls! It’s an opportunity to have a discussion with someone highly motivated, and I’ve learned over the years that it’s like talking to dozens of people. Because if this one person gets the message, then she will tell her story to dozens of others over the coming weeks and months.

I dialed her number and she answered on the first ring.

“Thank you SO much for calling! I know I should know better, but I don’t! It was my first experience being around someone that I KNEW was HIV positive.”

I told her she was going to be fine and started my HIV 101 spiel:

“Thank God we can’t get HIV in a casual way!” I started. “So let me tell you how you can’t get it,” I said.

YOU CANNOT GET HIV FROM:

  1. Mosquitos
  2. Drinking out of the same glass or communion cup, or using the same fork.
  3. Using the same restrooms.
  4. Breathing the same air.
  5. Swimming in the same water, or being baptized in/with the same water.
  6. Hugging
  7. Kissing
  8. Holding hands
  9. Tears, Saliva, Sweat, or Mucous if someone has a running nose or sneezes on you
  10. Sitting on the same pew, chair, or couch

“I could go on,” I added, “but I won’t. Let me tell you how a person CAN get HIV, or the ways people usually get this virus in the U.S.”

YOU CAN GET HIV FROM:

  1. Sex
  2. Drugs
  3. Breast Milk

SEX (though some of you may want to stop reading here):

  1. Oral Sex–this is a surprise to some people
  2. Vaginal Sex
  3. Anal Sex
  4. In other words, HIV is in semen and vaginal secretions. Condoms can reduce the risk as long as they are used from start to finish correctly, and do not break.

DRUGS:

  1. Sharing Needles during intravenous drug use is an effective way to get HIV.
  2. HIV is in blood. And its HIV positive blood into a HIV negative person’s blood that can infect.

BREAST MILK:

The virus is also in the breast milk of a woman who is HIV positive. She should not breast feed her baby if she is positive.

“Any more questions?” I asked. “Whew, I feel better!” she added. “Thanks so much!”

“Ma’am, there are no stupid questions here. Call me anytime.”

Questions about HIV? Call me at 205.975.8923. Email is marler@uab.edu. There are no stupid questions.

It’s just stupid not to ask.

Infected by Hope

I was walking by one of our exam rooms in our outpatient HIV clinic today when a clear voice said to me, “Hey, how you doin?” with a unique New Jersey accent.

A Jersey accent gets my attention because I’m in Birmingham for one, and two, my wife lived in New Jersey for awhile growing up and I love the accent that drops the “g” from “doing.”

I stopped, turned around and went through the open door to see a beautiful, healthy, 48 year old woman sitting there in the corner by the window with the sunlight reflecting on her hair as she waited for her doctor. Her smile was infectious, radiating from a bubbling, clear, deep well within her soul.

I sat down and asked her the same question. She said, “I am alive, I am living, and I’m expecting two more grand babies in the next few months, what could be better than that?”

“Can you tell me more about this smile I see on your face?” curious about her secret.

She said, “Well, I came down here from New Jersey in 1996 to die. I told all my children goodbye before I left because I was sure my days were numbered and I would never see them again. That was hard. I was coming home so that my Mamma could take care of me until I took my last breath. My Mamma called Hospice and they said even though she has only 4 T-Cells and weighs 100 lbs. she needs to go to The 1917 Clinic at UAB.”

“I rolled in here in my wheelchair and met with Dr. Michael Saag (founder of the clinic and now head of Infectious Diseases at UAB, pictured above) on that day and his sense of humor made me start laughing. He gave me hope. It was just his natural way of being. Today, I have over 700 T-Cells and I have my life back.” Those of us who know Mike Saag are not surprised by the comments.

She added, “I went home from that visit and I kept laughing, I kept smiling. I don’t know what it was or what he said, but I caught it.”

She went on to tell me several stories of how thankful she was to God for all that God has given her. Her faith was certainly a central part of her life. I asked her if she was connected to a church, and she said gently, “Nope, just God.”

And then I did something I don’t think I have ever done with a patient. I, the Chaplain, asked her if she would pray FOR ME. Now. Right here. I wanted some of what she had.

She didn’t hesitate as she reached out and grabbed my hands and started praying. When I walked out of the room, I was smiling. I had hope. I was infected in an HIV Clinic.

Of course Dr. Saag gave her medicine in 1996, but maybe more importantly he gave her hope and joy. And now, I have been infected. I got it bad. Which is good.

So I called Dr. Saag on his cell phone today to tell him this story. “Wow, I guess this is why we do what we do isn’t it?” he said. “Yep, it sure is,” I responded, smiling.

I wonder who will catch it next?

The Green Bean Casserole Rule

It sounded like a strange request on the phone.

“Malcolm, can you ask my Support Team volunteers not to bring me any more green bean casserole to my house?” said the young man on the other end of the phone who was a patient at our clinic.

“Sure Mike, that’s not a problem. Can you tell me why?”
“Well, the truth is,” he confessed, “I hate green bean casserole. But several members of my volunteer team love to cook it. I don’t want to hurt anyone’s feelings so when they bring green bean casserole, I smile and say thank you. After they leave, I throw it away, wash the dish, and return it to them. I don’t think this is how it’s supposed to work, is it?”
I assured him that no one wanted to do something for him that he didn’t want. Besides, he was gonna starve to death if we kept doing it this way!
I have come to call this the “Green Bean Casserole Rule.” Sometimes a person loves to do a particular thing so much for someone else, he or she will just do it without asking the recipient. And then be disappointed when they are not grateful!
Our teams have taught me this important principle when I try to help: “If you have something to offer, ask if he or she would like it (a meal, a visit, etc.). And if the answer is yes, to ask the question when would be a good day or time to receive it?” If the answer is no, let it go, and look for other opportunities that may arise later.

They have also taught me when you are trying to help, the more specific the offer is of what you would like to do, the more likely the acceptance. The more general the offer, the more likely the answer will be no thanks.

I am learning that the Green Bean Casserole Rule applies to situations beyond cooking meals. We may see a need and want to fix whatever it is. But taking your cues from the friend in regards to meeting that need is the key.

So the next time I start to do something for a patient of ours, or a friend, I am going to try to remember the Green Bean Casserole Rule. Respecting the recipient’s right to have a say in the matter is important.

And during a crisis, it may be all he or she has left.

Double Disclosure

“This is Jane. Can my husband and I meet with you?” the gentle voice asked on the phone. “We are having a hard time with our son’s diagnosis.”

It was the mother of one of our newly diagnosed 40-something year old patients. I had met the son and his parents a week earlier during a new patient orientation interview.

The couple sat down and thanked me for meeting with them. “I need to learn more about HIV,” she said. “I don’t want my son to die,” she said as she reached for the kleenex box. “Jim” quickly added, “And I’m struggling with accepting that my son is a homosexual or gay or whatever you call it! Is this something I did to him? I feel like such a failure!” His 6’4″ body sobbed.

I was actually encouraged with our start.
1. They showed up.
2. She was afraid and wanted to know how to help.
3. He was confused, angry, and guilty, but wanted to understand.
4. Most of all, both expressed love for their son.

They are active in a large church in Birmingham and faith is central in their lives. She wanted to know if prayer would help her son’s health. I assured her it would help him and her.

The Dad wanted to know how his son could be “doing this to him.” He felt shame, though he said over and over he still loved him. I encouraged him that “this” wasn’t something his son had chosen, or that he had inflicted on his son, or that his son was doing to him. He relaxed a little, but not much.

It is not the first time I have talked with parents about learning about “both issues” at the same time in what I call “double disclosure.” They were not in agreement about which disclosure to grieve the most.

“What can we do?” they seemed to sincerely want to know.

“Love your son unconditionally. You don’t have to know all the answers or even all of the questions to ask. Just love him. It’s the greatest gift you can give him. The rest of it can be worked out.” They nodded.

I answered as many questions as they asked over the next hour. They asked me to pray with them and I did.

Love is the rock that gives us the footing to deal with anything in life.

Unfortunately, not all parents are able to see the bottom line. Thank God these two did.

I Just Couldn’t Say No

“Jan” arrived in our waiting room, I introduced myself and we found a nearby available office. She was an attractive, petite, and educated young woman who was fashionably dressed in her mid 20’s and a worried look on her face.

“I’ve had this HIV OraQuick test before, in fact I was here a couple of months ago,” she explained as she responded to my questions. She knew the drill and swabbed her mouth, handed it back to me to insert in the tube in the liquid that would tell us the news in 20 minutes.

“So tell me why you’ve come back so soon?” I wondered out loud.

“The person who did my test a couple of months ago suggested I come back in order to be sure. I was in the ‘window period’ previously,” she said.

The “Window Period” refers to the time between a potential infection with HIV and when its antibodies can be detected with the test (6-12 weeks).

I asked our usual questions as an opportunity to educate her about how HIV is transmitted and then tears rolled down her face as her voice quivered. “I am so scared I am going to be positive! I did a stupid thing, I knew better. I just couldn’t say no.” That last phrase caught my attention.

“I just couldn’t say no.”

Somewhere in this young woman’s life, she has learned that “No” is not “OK” for her to say.

Somewhere in this young woman’s life, someone has told her that she is not a whole person without a man in her life.

Somewhere in this young woman’s life, someone has shown her by example that a woman does not have the right to be in charge of her own body.

She believes it. And she is not alone. We had a more extensive conversation about forgiveness and learning from our mistakes that is too personal to share here.

The good news in this story is she was HIV Negative.

The harder lesson for all of us to teach is the positive lesson of how to help young women find their voices and how to help young men to find their ears.

This kind of response takes a love of self.
This kind of response takes a willingness to stand alone if need be.
This kind of response takes a belief that my body and your body is sacred.

Let your “Yes” mean “Yes” and your “No” mean “No.”

We could all stand to learn this lesson about sex, and in many other areas of our lives.

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