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AIDS Memoir–Last Rites and Diaper Change

Friday, October 30th, 2015

This is an old writing, published in a British newspaper.

Faith and Reason: Deadly afraid of dying all alone: The Rev Robert Rea, of
Newark, New Jersey, gives an account of the challenge of trying to give
individual care to an Aids patient in the last days of his life in an American
city.
THE REV ROBERT REA

Saturday, 11 December 1993
I NOTICED in a recent gospel reading that when the Son of Man comes, he comes
to judge the nations. We usually hear a judgement of our individual behaviour in
this reading. And we can usually find things we individuals do to help the
least. But what if that is not the question being asked? What if our national
behaviour is at issue? What if it is presidents and legislators and
administrators that are to be judged? So I thought I would detail what I have
been doing over the last few days that I do, and my agency does, on behalf of,
and instead of, the nation. But that is preface.

Greetings from Calcutta, USA, and the St Somebody Aids Resource Center. Thursday
I got a call from the local visiting nurse in our church about a man, call him
Jose. Jose has been hyperactive and clinging to the home health help, because he
is dying and afraid and he has only eight hours a day of her services, so he
causes a fuss when she has to go home at 4pm leaving him alone. Maybe as a
priest I could go in and pray with him and calm him down. So I did. It worked
some, but he is alone all night.

If you’ve seen the figure of Christ on the most agonised possible Spanish
crucifix, you know what Jose looks like. No muscle mass to speak of, lying on
the couch because he is too uncomfortable on his hospital bed. Besides which,
think what it must mean to him to climb into that hospital bed. Deadly afraid to
die, wanting to die at home, and not in a nursing home. One of his best friends
died last week, the other is now dying in the hospital.

Jose is in pain but they can’t or won’t do anything about it because he is an
intravenous drug user and they are afraid to mix in any other pain meds. Come to
think of it, he hasn’t been able to go out and get his methadone for two weeks,
let alone street drugs. So not only is he facing death, but he is going though
withdrawal at the same time. No wonder he is in pain. I do my job, I comfort and
talk to him about all this. I anoint him and give him communion. Later, when I
check back in after the nurse has gone home, I have to help him clean himself up
and change his diaper. The comforts of religion, Last Rites and diaper change.

I talk to the visiting nurses. He’s not sick enough to get round-the- clock
care. They will try for more hours but it takes a while to get approval from
Medicaid – ie, welfare here in Calcutta, USA. So I see him again Friday. And
leave him alone again. I can’t stay with him. It is in a neighbourhood where I
as a white person am not very safe. And my car was stolen earlier in the week.
But he is supposed to have health workers over the weekend.

He says he doesn’t want to die alone. I tell him I will do my best to see that
he doesn’t. I tell him he isn’t going to die Thursday night. Friday I tell him
he won’t die over the weekend. I believe this; I can see he’s not quite that
close. And he isn’t. I tell him I will see him after church Sunday.

Sunday it turns out his sister-in- law came Saturday and found him alone, so she
took him home. Nobody is around to tell me where to find him. Well, at least
he’s not alone.

Today the health worker calls me to tell me where he is. So I see him and sit
with him a while. Today he can’t hold his head up to eat or drink. We, the
worker and I, sit him up and his head falls back and hits the couch with a nasty
crunch. Finally we get a pillow behind his head. He can’t use his atomiser for
his asthma any more either. The nurse covers his legs, which he doesn’t want.
She says he’s got to or he’ll catch pneumonia. I think to mayself that it would
be a merciful end. He asks for the oils which I had not brought. I was reverting
to my job as social worker. Tomorrow, I promise him, I will bring the oils.

Later I talk to the health worker who takes such wonderful care of him. She says
she isn’t sure she can continue. The neighbourhood isn’t safe enough for her to
come to. She gets off at 4pm and has to take a taxi to a streetcorner safe
enough to wait at for a bus.

Later yet I talk to his sister-in- law. (This is Hispanic for some sort of
relative. She calls him her uncle.) She says that she is getting another eight
hours of health aid care arranged. If she can do that she can take the other
eight hours of the day, and move him back to his own apartment. I applaud that
heartily. We will work on getting him to use the hospital bed, where we can
crank him up so he won’t choke and suffocate.

The sister-in-law says she won’t have him be alone and incontinent. I applaud
that even more. She is going to try to get him into the nursing home where she
works, but the paperwork takes several weeks, and then there is a waiting list.
I tell her I don’t think we have time. He is going to die sooner than that. This
shocks her somewhat. We talk about that for a while. So now we are making plans
to find people to stay for the gap between when the sister-in-law goes to work
and the aid comes in the morning. That much even I may be able to do.
So this morning the sister-in-law called the ambulance and sent him to the
hospital. This time the hospital is keeping him. He has meningitis, they think,
and gangrene on his feet. So he has a couple of days. They think he will make it
tonight. His condition is stable. He’s in a lot of agony but the vital signs are
stable.

He can’t really talk anymore. He makes sounds but you can’t tell what he’s
trying to tell you. So I anointed him and said goodbye in case I didn’t make it
back to see him again. Tomorrow is our day to give out the turkeys and dinners
for our clients. If I get a chance I will try to see him again. If not, I will
try to get by on Thanksgiving. Without a car, it’s difficult.

Next we think about a funeral.

So keep all of us in your prayers.

I think I know what the son of Man would say about our individual work. What
would he say about the nation that allows people to get into this state?

http://www.independent.co.uk/news/people/faith-and-reason-deadly-afraid-of-dying
-all-alone-the-rev-robert-rea-of-newark-new-jersey-gives-an-account-of-the-
challenge-of-trying-to-give-individual-care-to-an-aids-patient-in-the-last-days-
of-his-life-in-an-american-city-1466830.html

AIDS Memoir–The Shrink

Friday, October 30th, 2015

So the monastery guesthouse sheltered persons with AIDS.
One day a man turned up who said he had been beaten up by
his wife and run away from home. He seemed the proverbial
Caspar Milquetoast, small, meek, anxious, and fearful. He
stayed with us for a week, I think. Then he told me that
his wife was coming to get him on Sunday. As indeed she
did. She was fierce and fearsome, an angry woman. She
referred to him as Doctor. I looked surprised. She said, Oh
he didn’t tell you. then she angrily took him and left.
Some months later, I saw his picture in an obituary in the
city newspaper. He was a psychiatrist, the Director of a
state mental health center in a neighboring state.

It’s familiar story, the married gay man having sex with
other men in secret. There are so many. A sociologist I
knew, Laud Humphries, made a study of this, published as
“Tearoom Trade: Impersonal sex in public places.” Perhaps I
may write more about him in another post.

Arrgh

Friday, October 30th, 2015

read Nehemiah at (Episcopal) Morning Prayer:
The exiles return to rebuild Jerusalem. The local authorities question their right to do so, Sanballat the Horonite and Tobiah the Ammonite official, and Geshem the Arab. This is Nehemiah’s reply:
The God of heaven is the one who will give us success, and we his servants are going to start building; but you have no share or claim or historic right in Jerusalem.”
And I hear the voice of Bibi Netanyahu.
And so it goes.

Lost In An Eternal Present

Friday, October 23rd, 2015

Guy Debord says in The Society of the Spectacle that the spectacle obfuscates the past, imploding it with the future into an undifferentiated mass, a type of never ending present; in this way the spectacle prevents individuals from realizing that the society of spectacle is only a moment in history (time).
http://en.wikipedia.org/wiki/Society_of_the_Spectacle

In a support group I am in, a woman told us a story to illustrate what she was saying. Then it became clear that the story told, which sounded like a true story, was from a TV show. This is a sad and bad confusion. We are losing our grip on reality, confusing fiction with it.

Life

Friday, October 23rd, 2015

I think my cognitive dissidence was prefigured at my birth. I remember my grandmother saying when she got to the hospital for my birth, she had her shoes on the wrong feet.

But a lot of other stuff was going on too. My father died fifteen days after I was born, leaving my mother penniless, with no money to bury him, and no money to feed a child. He died of a cancer that was ugly and painful. She was forced back into her parents’ home. With me as a souvenir of what was probably a bad marriage. Later on, when she was angry at me, she would tell me I was like him. She once told me that he had punched her in the stomach when she was pregnant with me.

Years later, when I first knew what an abortion was, I thought to myself, “Oh that’s what my mother should have done.” I was quite aware that I was a burden. When she finally did remarry, it was because it was marry him and move away to his new job or lose him. She asked for my permission; she told me he had been asking her to marry him for eight years and that she said no because she didn’t want to saddle him with me.

Keep, O Lord, your household the Church

Friday, October 23rd, 2015

Wednesday we used the propers from the previous Sunday. The word ‘household’, struck me in the collect. then we read the story of Naboth’s vineyard, and Ahaz and Jezebel. Naboth will not give up his ancestral land, his vineyard. It is his place in the world, in God’s creation. It his place in the continuity of his people. The image of the vineyard is the sign of Israel, the people, and of each man’s proper place in it. Ahaz just wants it to add on to his estate in Jezreel.

Israel is the household of God.The cosmos is the household of its Creator. The Greek word is economia. It really means the arrangement of things and their management. Ahaz wishes to disarrange the world of Naboth to suit his kingly advantage. Naboth refuses. Ahaz sulks. His wife Jezebel then tears it up completely. She uses her royal prerogative to have Naboth condemned to death and his property is forfeited to the King. This is not the way God’s household must work. God sends the prophet Elijah to pronounce his judgement. Ahaz and Jezebel shall perish. Their political manipulations bring war and death to them in the ordinary course of the world. That world, however, is cosmos, God’s household is arranged in such a way that their acts have consequences.

In early Christian theology, there is the economy of creation and the economy of salvation. God in essence is not knowable, but God is known in the economy God made. God has made the world in such a way and violations have their consequences. God arranged our salvation in Jesus to fit the cosmos as it was and return it to what God created it to be. How God did this is the economy of salvation. The dire necessity that Jesus suffer so terribly and rise from the dead is is made necessary by the state of the world where he lived and died. Jesus’ suffering shows the violence and suffering that so distorted the cosmos that made his suffering necessary.

AIDS Memoir–Lee

Friday, October 23rd, 2015

A quiet Sunday afternoon at the monastery. We had eaten a
solid Sunday dinner and were replete and resting. Then I
got a call from the Guestmaster, Jonathan. A guy with AIDS
and his friends had rung the doorbell looking for help.

Back story: I had been involved with AIDS and the churches
for a few years. The community had agreed that the
Guesthouse could shelter people with AIDS temporarily. So
a good while back, Lee had been referred to us. Then his
friends took him in. Now they brought him to us; they could
no longer care for him. Maybe we could take him in.

But Lee was very very sick, far too thin, little muscle
left, very feeble, clearly more than we could deal with. I
admire his friends for caring for him this long, true
friends. Jonathan wanted my advice on how to deal. Lee
clearly belonged in a hospital. I knew the AIDS chaplain at
the public hospital with an AIDS ward; he had been in a
class I took at a local divinity school. So I somehow got
Dan’s number and we called him. He guided Jonathan and
Lee’s friends in how to get him set up to be admitted.

I took Lee into the common room where he could lie down on
a couch. I sat with him. He talked but mostly he wept. I
held him in my arms as he wept; it took a while. Finally
his friends took him to the hospital. He died a week later.

God works through us, God’s arms comforting the dying with
my arms. And I remember and weep.

PTSD In Everyday Life

Thursday, August 20th, 2015

In her sermon last Sunday Ceci our rector said:
“I discovered that I was not the only person who had been
mistreated; and I had to come to terms with the fact that
those in authority who were in a position to do something
about it, did nothing for a long time. Many innocent people
were hurt by this.”

Lately I have been musing away at the idea of small forms
of PTSD. This process was begun by reading the memoirs of
Robert J Lifton, _Witness to an Extreme Century: A Memoir._
He writes about the psychological effects of the Hiroshima
bombing on the living victims, as well as the effects of
other forms of suffering.

This brought to mind my childhood fear of annihilation. I
remember talk in our household about a Biblical prophecy in
a letter of Peter, of fire raining from the sky. I think
this occurred at the time the Soviet Union tested their
first atomic bomb.

I remember each time I heard an airplane, looking up and
thinking, “Is this the one,” meaning the one with the bomb
coming for me. I mostly got over this, but I still look up
to see airplanes and I sometimes remember my old fear.

I remember air raid drills in school. I remember one which
was staged to test the emergency services. Before the
actual drill a film about butterfly bombs was shown in a
vacant lot near my home. In the actual drill, there were
loud aerial bursts from fireworks, safe bombs were tossed
on lawn and they practiced sandbagging them, and my friend
and I were part of the group taken to a triage center. We
were tagged DOA and given hot chocolate and cookies. The
circumstances gave me good reason to look up for the plane
coming for me, good reason to be afraid in daily life.

I remember the fighter plane carrying nuke-tipped missiles
that crashed across the street from the playing field at my
middle school. The pilot brought it down between two
buildings so the wings were sheared off the the fuselage
stopped before it hit the kids out playing in the field.
The pilot ejected after he had lined this up. He suffered a
broken leg.

I was a fearful person as a child, withdrawn, mostly
friendless, fearful of others. I have been freeing myself
from this all my life long. There are other events that
made me fearful, and I expect I will narrate them as well.
I am 72 years old and I am still afraid.

This strikes me as a mild form of PTSD in everyday life. I
will be telling stories of other daily PTSD, mine and that
of others.

Honesty

Tuesday, August 18th, 2015

In Morning Prayer we have been reading the books of Samuel, the royal history of the Hebrew peoples. I was struck today by Joab’s killing of Absalom against the orders of David the King. These stories are very honest. They tell the history, warts and all. I was struck a week or two ago by the story of David and Bathsheba. Davis knocks up another guy’s wife and then arranges for the guy to be killed in battle and takes the woman as his concubine. Do other proud peoples tell stories like this in the history of their kings and ancestors? I doubt it. The Hebrew’s God is just but loving and forgiving. They are so secure in their faith that they can tell stories like these. This is Dark History, the stuff we never talk about, our shadow side. Bringing it out to the light of faith is healing.

Liminality

Thursday, May 14th, 2015

The word “liminal” comes from the Latin limen which
means threshold. The anthropologist Arnold van Gennep used
this term to describe rites of passage, and and another
anthropologist, Victor Turner, expanded its significance in
his book, The Ritual Process. He spoke of a liminal space
between stages of life, when initiates would be separated
from their normal lives and prepared to enter a new stage.

This liminality fits puberty rites such as circumcision or
some other body manipulation at the entry into manhood, or
first menstruation and the entry into womanhood. In the
Christian world, Baptism and Confirmation are liminal
rites. A priest, teaching children in church, asked what
the age of confirmation was and a kid piped up “puberty.”
The Jewish bar or bas mitzvah fits in here, as do Marriage
and Ordination.

All these rites have some form of preparation. Often there
is a retreat before the rite. The is a liminal period is the
place where you are betwixt and between or you feel yourself
on the edge of something. These are places where ritual
recognition is appropriate and useful. I once met a priest
on retreat to prepare for death. I directed retreats for a
woman who was preparing to go to prison after committing
civil disobedience against the nuclear state.

Where do we find our unseen thresholds?

The Church and its liturgy are such thresholds. There we
enter a special place, a place set aside. That’s what the
Hebrew word for holy or sacred means. There are two
thresholds there, the place where we enter the sacred space
and leave behind our usual lives, where the word of God is
proclaimed and explained, and the altar rail, where heaven
and earth meet, where God enters us physically as bread and
wine, entering our very physiology and nourishing us both
physically and spiritually.

There can also be liminal persons. I think Mary the mother
of Jesus is such a one. This helps us  understand her
cultus. She was God’s threshold, through which Jesus and God
came among us to redeem us. So she is for many a persistent
threshold to God. To consider Mary, her virginity, and her
love of her Son, is to enter a space away from ordinary
life, ordinary thought, where we can find our own way to
God, to bringing Jesus and God to life in our lives.

There are also liminal places. Often they are called “thin
places,” places where in some way we feel closer to the
Divine, whatever we call it, higher power or God, or any
other name. A classic Christian one is Iona, a small island
off the west coast of Scotland. Here the fugitive monk
Columba settled to do solitary penance. Here a community of
monks grew up around him. Here a large abbey and nunnery
grew up. And here in the twentieth century a community of
Scottish Christians formed a community to work in the slums
of Glasgow and at the same time rebuild the Abbey as a place
of retreat and spiritual self-care. Iona was not only
Christian. Even before Columba there is some evidence of the
Druidic. The island was reputed to be the only place on
earth that was above the waters of the flood. It was the
burial place of the Pictish and Scottish kings. Thus Macbeth
and Malcolm whom he murdered are both buried here.

There are also old pagan holy places. When I first visited
Iona, I had a strong sense of a holy place. I also
remembered such a feeling when as a teen I visited Monks
Mound on the flood plain across the Mississippi from St
Louis, Missouri. It was thought to be a large burial mound.
I felt just a funny itch of a feeling that I couldn’t
understand or explain. A number of years later I was invited
by a friend who was taking a course in anthropology to come
along on their field trip to the mound. There were found an
solitary archaeologist digging. He explained to us that this
mound was the center of a great pre-Columbian city built of
wood, so that there were no obvious remains. On the large
mound was a temple of some sort. Further explorations
revealed numerous subsidiary mounds as places of worship.
There was a whole royal court burial and a woodhenge, a
solar calendar like Stonehenge in England. This was one of
the largest cities in the world of its day, a thousand years
ago. And this mound was a thin place.

We find thin places where people have prayed and worshiped
for long periods. And places of reverence of all kinds. I
experienced the same thin place feeling in the tomb of
Abraham Lincoln on an eighth grade field trip. Many people
find thin places in nature, in places which draw us into
reverence and awe. Some times we find thin places in our
homes and hearts.

These are places where we can meet God, where we can step
through the veil, where we can leave behind us whatever
hinders us from knowing and loving God and our neighbors in
God.