Hospice: Quality of Life

If you don't think this is a picture of a Hospice patient, there's a lot you probably don't know about Hospice.

The patient in this picture - we'll just call her "Jenny" - has ESCOPD (End Stage Chronic Obstructive Pulmonary Disease). That means there isn't anything more doctors can do to help her. Her health status is not going to get any better. Indeed, it will only get worse.

The goal of her Hospice care is to manage her symptoms - hopefully keeping her out of hospital and doctor's office - and provide her with an optimum level of quality of life.

We do that by providing holistic care - tending to her body, her mind and her spirit. As a team. 

In the past nine months or so, we've watched "Jenny" get around the assistant living facility with her walker. We were able to add an attachment to her walker that allowed her to bring her oxygen tank and tubing with her wherever she went - and she needs to have oxygen running 24/7.

Several months ago walking became increasingly difficult for her, so she moved to a wheelchair with an attached oxygen tank and tubing as her primary mode of transportation. It wasn't easy to wheel herself, but at first, she insisted.

Lately, however, she hasn't resisted when one of us started to push her to wherever she was going.

Then, she got pneumonia.

The good news is that we were able to keep her out of the hospital. The bad news is that the infection left her with a breathing capacity that was even more compromised.

Wheeling herself around in a wheelchair became far too much energy to spend to make "getting there" worth it.

But, being able to "get there," more or less at her own speed, is what makes her feel alive.

Independence is what gives her "quality of life".

So, our team got together - nurse/case manager, certified nurse's aid, social worker, and chaplain - and determined to advocate for her to get a motorized scooter, something that would allow her to save the energy she would use to "get there" and use it while she was actually "there".

Our Hospice agency has something called "The Foundation". When people make contributions in memory of their loved ones, it goes to The Foundation. That money is used to help our patients in need pay their rent or utility bills. We've also used it to build wheelchair ramps, repair leaking roofs, fumigate homes filled with bed bugs, cockroaches and bees (Yes, bees!). And, we've even purchased apartment-sized washer-dryers. However, we've never gotten a motorized scooter.

Until now.

Part of the problem was that the usual financial assistance programs were not available to "Jenny", and neither she nor her family have the funds to pay for one. We tried to get a used one, but none were available at this time. And, The Foundation was concerned about liability issues.

Another part of the problem is that Jenny didn't feel she deserved one, so she kept demurring. "No, I'm fine. I can do it. I just have to pace myself."

The team agreed that she is, without a doubt, one of the most courageous people we know.

Hands-down. No contest.

She wants so much to live, she's so not ready to die - and yet, behold, she knows she is, in fact, dying - that she will push herself to get as much out of whatever life she has left that ... well.... as we all said today at our patient team meeting with her Assisted Living staff . . . she's our hero.

So, we appealed to The Foundation and . . . with a little push here and a little shove there ... they . . . said . . . YESSSSSS!!

The scooter arrived on Friday. In a box. It needed to be assembled. So, one of our team had a friend who has a friend who called in a few favors and, voila! The scooter was assembled.

Then, it had to be plugged in and charged up. It was ready Sunday. And, Monday. But the CNA (nurse's aid) reported that she wasn't using it. Part of it was fear/anxiety, but a bigger part of it was that she was completely overwhelmed by the generosity of the gift.

So, we had a little team gathering today - even our Clinical Director came - to support her as she learned the basics of how to operate a scooter. We were even able to take the attachment to hold the oxygen tank which had originally been bought for her walker, and then her wheelchair, and use it on her scooter.

I wish you could have seen the smile on her face when she realized she could totally do this.

And then the tears in her eyes as she realized what this opened up for her.

"Jenny" wiped her tears, smiled broadly and then said, "If you'll excuse me, I gotta go. I can't be late for my exercise class."

And, off she went.

I snapped this picture as she did.

That photograph above, my friends, is the very picture of what quality of life for a Hospice patient looks like.

I can't think of a better way to have spent Tuesday in Holy Week.  It's the day when clergy in Episcopal dioceses around the country traditionally renew our ordination vows in cathedrals with their bishops.

The gospel lesson for today is from John 12:20-26.

"Now among those who went up to worship at the festival were some Greeks. They came to Philip, who was from Bethsaida in Galilee, and said to him, "Sir, we wish to see Jesus."

As I looked at the faces of my team members and saw the tears of joy in their eyes, I needed no further evidence that Jesus was present in that moment.

It's moments like this when I realize that I've never felt more like a priest. 

I came home and read over my ordination vows.

I've re-uped. At least for another year.

Well, truth be told, for as long as Jesus gives me work to do. 

A different kind of Hosanna

So, for the first time in - well, I can't remember when and I'm afraid to say - I'm not in "church proper" for Palm/Passion Sunday.

(Pssst: Don't tell Arizona Senator Sylvia Allen who would like to make church attendance mandatory. She also supports carrying concealed weapons in public places - including churches.) 

Rather, I'm hanging out as part of "the crowd" who are today as blissfully unaware of what's going on and being preached in the temple as there probably were when the events of this day in antiquity were unfolding.

Lemme tell ya, there's a whole lot more here than there are in church this morning. And, it's very diverse. Well, at least here in NYC. I think I heard at least six different languages spoken at breakfast.

Looking at the faces of the people here and the way they carry their bodies, it's clear to see that they know about triumph and tragedy, sin and sacrifice, betrayal and redemption, crucifixion and resurrection.

The metanarrative of the birth, life, ministry, death and resurrection of Jesus continues . . . .

. . . . . . it just doesn't speak to everyone because the church doesn't always make her voice clear and relevant and compelling enough to be heard above the clamor of life and to various people in their various social locations.

I can't imagine anyone here finding meaning in marching around outside in 25 degree weather, waving palms. 

I do take great delight in listening to the squeals of joy and delight of children from a variety of countries as they frolic, carefree, in the hotel pool.

The laughter of children is a universal language all its own.

It's enough of a 'Hosanna to the Lord of Life' for me on this Sunday of Palms and Passion.

Today is for "Hosanna!" The world is already filled with too many calls to "Crucify! Crucify!"

I'll be in church for the Triduum and Easter Day. That will suffice for this year.

More people will be present, along with us, at the 3 PM matinee of WICKED than will be in church this morning in any one given location. The matinee has been sold out for weeks.

There, we'll hear another kind of story of triumph and tragedy. 

And, the crowd - another full house - will come back for the regular show at 8 PM.

Our granddaughters get it. At 7, 9, and 13 years old, they totally get it.

I wish you had been at our breakfast table conversation this morning to hear them talk about good v. evil, popular v successful, betrayal v. friendship.

And, what the 13 year old described as "the irony of the challenge of being unique v the mediocrity of being like everyone else, just thinking - and letting everyone else think - you're better."

Somebody give that Palm/Passion Day sermon an Amen.

Or, at least, a Hosanna in the highest!

In whatever way works for you.

Indiana: Newton's Third Law

In case you haven't heard, yesterday, Indiana Governor Mike Pence signed the so-called "religious freedom" bill into law during a private ceremony in his Statehouse office.

This bill purports to protect persons and businesses from government reprisal if their decisions to treat groups of people differently (in the provision of services and goods, for example) stem from what they claim to be religious beliefs – even if those beliefs are not part of the formally professed teaching of any established religious group.

It's a hideous affront to the fundamentals of our Constitution.

Or, as Susan Russell calls it, it's a "Weapon of Mass Discrimination". 

Proponents of the bill say it is not about discrimination.

Of course not.  It's about "religious freedom". See?

So, if someone comes into your store or your bakery or whatever your business happens to be, and you figure out that they are . . . .oh, I don't know, let's say . . . you figure out that they're gay.

AND . . . your religion teaches you that being gay is . . . oh, I don't know, let's say . . .  an "objectively / inherently disordered" condition.

WELL . . . not to worry about having your religious beliefs compromised by having to serve this . . . abomination in the sight of the Lord. Your "religious freedoms" have been protected.

Some of the "Religious Leaders" at the signing of the new law

Or, say, a woman comes into your store or your bakery or whatever your business happens to be, and you can tell, just by looking at that expensive suit she's wearing and that fancy-schmancy jewelry she's sporting, and the conversations she's having on that expensive cell phone that's partially hidden under her perfectly colored and coiffed hair that she's probably not . ..  how shall we say? . . . your typical 'homemaker".

AND . .  your religion teaches you that a woman's place is in the home. With her husband. And, with as many children as our Abundant God deigns to give her.

WELL . .. not to worry about having your religious beliefs compromised by having to serve this . . . this . ..  Woman! Your "religious freedoms" have been protected.

And, let's not even talk about an interracial couple who walks into a restaurant and expects to be served.

No, let's not even talk about that.

Especially if they are wearing garments made of two different materials, or have tattoos, or collect interest on money they have in the bank, or . . . . Well, just read Leviticus.

Or, not. Actually, you don't even have to be following a formally professed belief of any established religion. If your name is Judy and you believe something about God then you are following Judy-ism. Or your name is Brian, you could be a Follower of the Life of Brian. 

As the Episcopal Bishop of Indianapolis, the Rt. Rev'd Catherine M. Waynick, wrote to her diocese:

Consider the possibility that only Christians will be served in some places, only Jews in others, while no Muslims, Buddhists, Zoroastrians, or Druids can purchase merchandise in some stores, and only Latinos will be included here, only Blacks excluded there....you see the point. This legislation gives the appearance of tolerating and protecting overt bigotry in any form so long as it is dressed up as personal religious fervor.

Oh, but wait. That's not the bad news.

The really bad news is that this is just part of the first of a wave of a something Ms. Mouthermouth Maybelle, a character from Hairspray, once called, " . ..  a whole lotta ugly comin' at you from a neverending parade of stupid." 

The truth is that Indiana is the 20th state to pass a Religious Freedom Restoration Act into law.

Let me say that again so it will sink in: Twenty (20!!) states now have a Religious Freedom Restoration Act as a law on their books. 

There are more on the way. Arkansas and Georgia are poised to be next.

As astounding as all of this is, there's a really simple explanation for it all: Physics.

Newton's Third Law, to be specific.

You might remember it from high school physics:

"For every action there is an equal and opposite reaction."

Consider: Marriage Equality will soon be the law of the land.  Thirty-seven states and counting. 

You didn't think it was going to be that easy, did you? I mean, that LGBT people would win our civil rights state by state by bloody state and then, it would all be rainbows, lollipops, roses and sunshine?

Consider: In 2012, this country elected its first Black President for a second term of office.

And yet, despite the Civil Rights Act of 1965, there has been a gradual erosion of voting rights which includes redistricting, gerrymandering, redlining and requiring documented evidence of personhood (which, for these same people, simply being an embryo can prove that). 

Sometimes, the "equal and opposite reaction" isn't always as easy to follow as a straight line.

I'm told by my friends who work in shelters for victims of domestic violence that there has been a sudden increase in women and children seeking assistance over the past six months.

There are lots of factors, of course, but it turns out that when some people - mostly men who are Caucasian / Western European - feel threatened by forces out of their control - like gay people being able to get married or women making more money than they do or transgender people obtaining civil rights - they come home and kick the dog. Or, their wives. And, kids.

On one level, it's pretty pathetic.

On another level, it has ever been thus.

Man on top. Says so in the Bible. Try to change that and expect Newton's Third Law to kick in.

So, the political physics of the situation looks like this: 37 states with marriage equality + 20 states with Religious Freedom Restoration Act = Newton's Third Law. 

Here's the thing: This is such an affront to the very idea of 'liberty' - what generations of men and women in this country have fought and died for - that it is simply a matter of time before these laws are challenged and overturned.

That's also part of Newton's Third Law, sometimes stated as, "What goes around, comes around."

These laws - which are an abomination in the very sight of Jesus - will be challenged and eventually repealed. Of that, I have no doubt. In the meantime, a lot of people will be hurt. And, angry. And, outraged. And, that would be exactly right.

As my blessed grandmother used to say, "Prejudice kills brain cells."

It is important to be outraged. It is more important, as Mother Jones famously said, to "Pray for the dead and fight like hell for the living."

If you aren't convinced to get out and vote in every single bloody election - and help others to get to the polls to cast their ballot - I don't know what will persuade you. 

Maybe remembering Newton's Third Law will do it: "For every action there is an equal and opposite reaction. "

As Sinclair Lewis rightly predicted in Babbit:  "When fascism comes to America, it will be wrapped in the flag and carrying a cross."

Let this 20th state to pass a Religious Freedom Restoration Act into law be the "tipping point".

Stop the momentum of this growing movement. Push back against injustice and bigotry and fascism masquerading as "religious freedom".

VOTE! And, make sure to help others get to the voting booth, too.

Thin Place: Listening for the sizzle

The Shrine to the Thin Places at Doonamoe in County Mayo, Ireland, designed and built by Travis Price, AIA, with his students at Catholic University.

There is a wonderful notion in Celtic Spirituality called "thin place".

Peter Gomes, theologian and chaplain at Harvard of blessed memory, has, I think, the best description:

“There is in Celtic mythology the notion of 'thin places' in the universe where the visible and the invisible world come into their closest proximity. To seek such places is the vocation of the wise and the good — and for those that find them, the clearest communication between the temporal and eternal. Mountains and rivers are particularly favored as thin places marking invariably as they do, the horizontal and perpendicular frontiers. But perhaps the ultimate of these thin places in the human condition are the experiences people are likely to have as they encounter suffering, joy, and mystery."

Many think of "thin place" as an actual location, such as the mountains and rivers Gomes speaks of, or churches or monasteries and convents. And, it certainly can be that.

I have also heard expressed by some who follow Celtic Spirituality this mysterious, lovely idea that the Daily Office - said, chanted and/or sung - and the daily Eucharist celebrated in churches, monasteries and convents form a "Prayer Shield" of sorts which keeps Evil from slipping into those "thin places" and protects the suffering and "shields the joyous".

While I think of our own wee cottage, Llangollen, on the waters and marshes of Rehoboth Bay as one, I think less of "thin place" as being an actual place. Rather, it is, for me, a state of being.

It is a "place" in one's spirit and soul where one becomes more in tune with The One.

I have a Hospice patient - I'll call her "Gertie", she'll be 95 in May - who is, for me, a 'thin place'.

She was orphaned as a very young child and was sent to live with Aunt Stella, who wasn't really an aunt but a family friend. Aunt Stella had already taken in another young girl, also orphaned, and the two girls grew up as sisters.

Aunt Stella was a librarian. One of the first things "Gertie"  learned to do - which was her daily responsibility until she was 16 and a half years old and left home to get married - was to walk Aunt Stella to the trolly stop so she could go to work at the Library.

Aunt Stella, you see, was blind.

That's really all "Gertie" ever did for Aunt Stella. Walk her to the trolly stop.

Aunt Stella could manage all by herself, thank you very much. And, she could have easily walked herself to the trolly stop but, well, this became "their time".

Walking and talking on the way to the trolly stop was their "thin place". It was really the only time of the day when they were alone together and "Gertie" learned to cherish the time as holy and the path they walked as sacred.

Aunt Stella cooked all the meals for them - and then, for Uncle Johnny whom she later married. Uncle Johnny was also blind. He played the piano and every Sunday after church the house would be filled with blind people who gathered in Aunt Stella and Uncle Johnny's parlor and sang and ate Aunt Stella's cakes and pies and drank coffee and tea.

And, laughed. "That was the best music," said Gertie, "that laughter was real medicine."

"Gertie" said that Aunt Stella was a great cook and taught her "how to cook blind".

"When you're blind," "Gertie" said, "you can't stick a knife in the cake to see if it's done. So, you listen for the sizzle."

"If you put your ear right up close to the oven," she said, "you can hear it. If you let the sound go into your body, you can feel it."

She closed her eyes and said softly, "Ssszzzzzzzz.....". Then, she opened her eyes and said, "And, sure enough, it will be done."

Then, she leaned forward, looked deeply into my eyes, and said, "Listen for the sizzle in life. Always listen, listen, listen. And feel what you hear. Your eyes may deceive you. Your heart may betray you. But, your body never lies."

These days, I feel more and more that I am living in "thin place".

I love my Hospice work. I consider it a holy privilege.

And, we are also preparing for our youngest adult child and her husband to deliver us our newest granddaughter, Willow Elizabeth.

She's due April 4, but could really come any time now. We are planning a home birth, complete with midwife and pediatric nurse practitioner who will also be present for the birth.

Living in the excitement and anticipation of life and new birth is a time of "thin place".

There's a quality in the air these days, as I prepare for this child's arrival that feels very much like when I'm around someone who is getting ready to go home to Jesus.

It's like that odd taste of steel on your tongue and in your mouth and the way the air feels still and fragile and bristles the hairs in your nose when you breathe it in just before - and then, just after - a rain storm. You know?

There's a thinness to the atmosphere and time feels like it has slowed down - with moments when it feels like it has actually stopped for a heartbeat or two - and everything is quiet and still, except for the gentle rustling of the leaves in the trees.

And, it raises the soft, small hair on the back of your neck and sends just a little tingle to your shoulders and down your arms.

Just the teeny tiniest of gentle little zaps (or sizzles).

It's something in your soul that says to your body: "Hey! Wake up! Pay attention here. Something is about to happen and you don't want to miss this."

That's what life feels like these days or me.  Like a thin place.

And, when it's really quiet, as it is right now, I can hear "Gertie's" words:

"Listen for the sizzle in life. Always listen, listen, listen. And feel what you hear. Your eyes may deceive you. Your heart may betray you. But, your body never lies."

And, I close my eyes and begin the mantra of my new prayer, ""Ssszzzzzzzz....."

Suddenly, slowly, like the rustling of leaves, I hear the prayer with my whole body and spirit and soul, and the soft hairs on the back of my neck begin to rise and send just a little teeny tiny tingle to my shoulders and down my arms.

I find myself becoming more one with The One.

I stay like that for a time until I am "done" - awash with a sense of profound gratitude.

Then I wipe the small tears that have, like surprising divine gifts of blessing, appeared in the corners of my eyes and I say, "Thank you."

And, "Amen."

Walking among giants

If you're an Episcopalian and never heard the name Malcolm Boyd, well, where have you been?

I mean, I suppose more than a few Episcopalians have been so honored, but it's not every Episcopal priest whose obituary appears in the New York Times.

I know lots of people who vie for the title - or certain variations of the same - but I think it's at least fair to say that Malcolm was the first Episcopal priest to come out as a gay man.

That was in the mid-60s.

I don't know how I can adequately express how absolutely courageous and bold and brave that was at that time.

Important as that is, it would be unfortunate to limit Malcolm to that singular distinction. 

He was a leader in the Civil Rights Movement when that was shocking to members of a church which was then more a social club and conservative political party at prayer.

He was an author of a book of prayers titled "Are You Running With Me, Jesus?" that changed the way people thought about prayer.

Well, Episcopalians, anyway.

These were not the graceful, eloquent, traditional prayers from the Book of Common Prayer. These were honest, raw, direct, insightful prayers whose power crept up on the reader, covering topics such as personal freedom, racial justice, and sexuality.

They were, as he wrote, “prayers for all of us today who are finding it harder and harder to pray,” which make them as relevant and timeless for us in our day and time.

Those are some "facts" about Malcolm. They certainly don't capture the essence of who he was and can't come near demonstrating the impact he has had on the church in general and The Episcopal Church in particular.

So, a personal memory to honor his spirit.

The first time I met Malcolm, he offered me a mint. 

I declined. 

"No, here, take it," he said. 

"No, thank you," I said and then, remembering that my luncheon salad had onions asked, "Oh, dear. Does my breath reek of onions?"

He sighed deeply and said, "You know, I've found that doing the work of justice requires that, from time to time, I have to use strong language. Sometimes, that language offends some people. Some people consider it vulgar. Me? I consider injustice vulgar. I curse at it with impunity. When you do that, it always surprises people when your breath smells sweet."

He looked at me with that delightful twinkle in his eyes (maybe you've been fortunate enough to see it) and said, "Onions smell sweet compared to homophobia. Want a mint?"

It was love at first mint.

I can see him now, in heaven, cursing up a storm and handing out mints. 

Back here on earth, it's important to remember that we walk among giants. 

Some of us don't realize that until they have left us and leave a void. 

I think Malcolm would agree that that void just leaves a space for another giant to step forward and lead yet another generation to find fresh ways to pray, and continue to raise a prophetic voice against injustice, dragging the church along kicking and screaming the whole way. 

Thank you, Malcolm.

Your memory will always be a blessing. 

As was your life.