Thursday, October 09, 2014

Update 2.1

After being off the drug for a week I feel so much better. My energy and appetite are back. I know the long term consequences of not having any medication for IPF but looking at the positives. Feeling great, no more encounters with my "study director" and her patronizing ways are all good. Also she was the world's worst phlebotomist -- broke through the vein every time! See the doc next week. Now back to the fun of life.

Thanks to Barbi Tinder for the photo.

Thursday, October 02, 2014

Not such good news: lung update #2

Well-- discovered that I am part of the few who can't take pirfenidone. 3 in a thousand have a liver reaction-- so that is what my blood tests showed today. A disappointing development as currently it is the only drug that stops the progression of the fibrosis.  Taking it in for now - see my pulmonologist in a couple of weeks to hear from him. My brother and mother had it and lived a long time and died of something else - so will think on that prognosis rather than worse things. Definitely puts life in the "live for the present moment" category.  Prayers appreciated. But refer to the post on why I might not be talking a lot about it. (2 back).  Thanks for the support - I can feel that.

Monday, July 28, 2014

Lung update

Update on the lungs: I saw the lung doc yesterday and he is putting me on pirfenidone -- a new med that stops the progression of the fibrosis. It is still in trials here in the US but used in Japan and Europe with good results.  Thanks for all the prayers and good thoughts. I feel as ever -- well.




Pirfenidone2DACS.svg

"Pirfenidone2DACS" by Fuse809 (talk) - Own work. Licensed under Public domain via Wikimedia Commons.

Sunday, July 20, 2014

Why I have not told you about my health

After a year of thinking that my cough was allergies and not getting much change using anti-allergy meds I decided to have it checked out. My primary care doctor agreed and sent me to get an x-ray. When it was compared to a previous one – it was off to the pulmonologist. In the 1990s I had a condition called B.O.O.P. / along with polymyocitis. So there was some thought that I was having a recurrence of that. But also pulmonary fibrosis runs in my family so that was another thought along with much more dire and imminently more terminal things.

The point of this essay, however, is not my medical history but my reaction to once again having something serious going on and my unwillingness to tell people. At first I did not even tell my husband that I was going to have it checked out. He is a retired doctor so had already been thinking about telling me to get it checked out so was relieved to hear that I was getting a chest x-ray when I told him I was getting it checked.

Once I got the results that said I needed more tests, I still did not want the news to go beyond him but decided that I should tell our adult children so they did not get a big surprise. They hate it when we don’t tell them what is going on with us.  Then I told my priest who is also my colleague – since we work together and she is a great support. I decided that it would be good to talk it over with my spiritual director who helps me sort out what I am feeling and how I am reacting. But beyond that – I still did not want to tell anyone.

As I wondered about my reticence, I reflected on the last time I was really sick and the reactions I encountered. So beyond wanting to stay in denial by not talking and not wanting to cause others to worry there were three reactions that I wanted to avoid.

Pity: that “look” people give you that says “oh you poor pathetic sick person” as if one’s whole identity is being sick and you have lost your essential person-ness. Maybe this is asking too much of others. It could be that others just are expressing the feelings they are having and not really putting me in the “sick person” box. It may be that in our family we tend to do grim humor instead. We use humor to get through scary stuff. We know the seriousness so really don’t need that reinforced or reflected back. As an example, I was telling a friend about trying to fix the church’s sprinkler system and being up to my elbows in water when I saw what could have been a live wire in the water. My friend replied “well that would have solved all your problems.” I laughed and laughed and continue to laugh when I remember her comment.


Avoidance: people begin to draw away. This does not always happen physically, since you do have encounters with one another, but happens a lot emotionally. For me, as an extrovert, it is sort of like being dead before one is really dead. I think it comes from the other's not wanting to think about one's own mortality. When I am around people who are really sick and it could be terminal – I do feel like fleeing. I understand the reaction but it is hard to experience from the person who is sick point of view. When I had my previous serious illness – it revealed who would hang in there with me and who would not. The church, sad to say, failed miserably in this one. Though I was a seminarian in process to get ordained and had been super active in the diocese for years, I received no calls from my bishop or clergy. Only one church friend checked in with me regularly and friends who are not Christian kept up our relationship.

Questions: wanting the gory details and endless questions about what I did to “get sick.” This is probably the hardest thing to deal with because not only do I not want to talk about it all the time but also I do not need to add guilt to the mix. Questions like: “Do you think there was too much stress in your life?” Did you have a healthy diet?” etc. There are causes for some things and illness may be the consequence of something one does (like smoking - which I never took up - dodging that bullet), but mostly things happen because we live in mortal bodies that are subject to all sorts of conditions and will eventually die from something. Hearing questions like these may give me one more layer of anxiety that I really don’t need. I think it also comes from the hope that if one has not engaged in those behaviors or habits – one will not get whatever terrible thing the other has. It is sort of like holding up a cross to keep vampires away.  The questioners are trying to discover if they are vulnerable to the same thing.

All three of these reactions often come from caring but the way they are experienced by the person with an illness is not always helpful. In the end the person feels like an object in someone else’s life drama. I would suggest that you ask what is helpful and try to understand if I react badly to any of the above actions.  I realize this is a bind for my friends – you want to reach out and I don’t want you to withdraw in fear of doing the wrong thing. The best for me is for you to stay a pal and not worry too much about doing it right.

Upon letting this “marinate” for a few days:
As I reflect on the above I think there is an undercurrent of fear and anger in myself that evokes my reaction to your reaction, anger at having to deal with possible outcomes and fear of loss of abilities. I try not to project into the future what will happen and I try to live day by day – making necessary plans but living now. I don’t say “why me” – I know we all deal with our own stuff. I also try not to compare my stuff to yours – which is worse or better. And I like to stay in denial occasionally!

My husband and kids are a great source of support. They know me well enough to let me come to my own decisions. I also appreciate my brother, my priest, my spiritual director and good friends who listen and wait for me to hear myself. My priest and my spiritual director are very good at asking an occasional question that makes me go deeper but not all the time. And often my friends' and family’s grim humor is a catalyst for facing the days and nights of whatever happens. These are clarifying days – that help me live in the moment which all any of us have but sometimes need reminding.



Thursday, March 20, 2014

Crosses of St. Catherine of Alexandria

Our church uses a variety of crosses depending on the liturgical season. We are in the process of discussing moving a window with a nondescript design that was over the altar but too small for the space. During this time we have tried out different expressions of the cross. We also have other crosses around the church. I have been challenged and gone more deeply into the subject, especially as I design each expression.

The crosses of St. Catherine's speak to me in a variety of ways.

The stick cross (currently hanging in over the altar) reminds me of the fragility of life but how we are always bound together in the bonds of baptism. It is a cross for Lent with a burlap banner behind it. It is made of red osier dogwood sticks bound together with bare copper wire.

Most of the year we have a brass cross is a Celtic cross and carries me back to our roots in the British Isles. It is also sturdy and enduring as the love of Christ. It reflects the light back to us. We use banners of the year's liturgical colors with it. It was hanging in our church when we met in a converted school building (now a strip mall). So it also holds those memories of beginnings and dreams.

The driftwood cross (used last year in Lent and this year in the narthex) evokes the place we call home and the tides and storms and calm of the Pacific Ocean. It is made of 2 piece of driftwood and is attached to a base. This year we have a purple cloth around the base and burlap hanging behind it.

The St Catherine's cross (on top of the church) connects us to the early church, spreading to the 4 corners of the earth, and the spears remind us of the suffering of those who stood up for the faith. It is a copy of a cross on
top of the bell tower of the Monastery of Saint Catherine at Mount Sinai located in Egypt.

The processional cross with its icons of Jesus and the Gospels reminds me of John 5:39,that I need to study but that life in Christ is in the living. This cross was commissioned for us when we built our current building.

Each one says much more as I enter into contemplation on this sign that even death is not the end.


Tuesday, March 18, 2014

Woman at the well

The Gospel for this Sunday is one of my favorites (I know I know - I say that about most of the Bible! but this one really is). I chose it for the Gospel for my ordination as a priest. To me it speaks of  the reality of life. How we fill our lives with "many husbands" (occupations and loves of the moment) but when we find the real thing we realize what has been missing and the depth of our thirst. Then we want to run out and tell everyone. The Eastern Church honors her with a name, Photini: bringer of light. She was one of the earliest and best evangelists. She did it by telling her story. The power of story to tell the truth about life (even it not "facts") is well known. What is your story of coming to Christ or having Christ come to you? Who was the story bearer in your life?

Here are some photos of the sculpture of the woman and Jesus - from Chester Cathedral.



And a video performance of the story here.

Thursday, February 27, 2014

Keeping a holy Lent

What are you doing for Lent?

When I was serving at the altar every week there were so many ways to fully immerse myself in worship. Now as I sit in my pew it is easy to drift off and go home feeling a little less than an encounter with the Holy One. So, for Lent, I am going to pay attention to the attitude of worship - with my whole self.

One day I noticed someone who prays with his hands turned palm upwards - I thought I would try that. I know from paintings of the earliest Christians they usually prayed in this way.

It was amazing the difference. Instead of juggling papers I felt involved in the prayers. I began to memorize the responses or let the congregation carry me along if I forgot the words.

So for Lent - it will be "all in" -- using the practices of the church of genuflecting, bowing to the cross, making the sign of the cross when the Trinity is invoked, kneeling for confession, and holding my hands palms up to both hold and receive prayer. I invite you to try some of these - involve your body in worship as well as your mind. And sing even if you don't think you are a very good singer.

Tuesday, January 28, 2014

Another good one gone...

Rise in glory, Pete Seeger.

Sunday, January 05, 2014

Epiphany 2014

Epiphany is the anniversary of my ordination. Eighteen years ago the Rt Rev. William (Dub) H. Wolfrum and the clergy gathered ordained me to the priesthood. I was happy to have my ordination on that day as Epiphany is one of my favorite Holy Days.

I was supposed to be ordained by Wyoming bishop, Bob G. Jones, but as life evolved, it fell to my friend, whom I always knew as Bill, to preside. It was sort of like a full circle moment as Bill was the first person to ask me whether I had ever considered ordination. We were all driving to a meeting of Diocesan Council and I immediately broke into tears. This surprised me as I was not considering ordination.

Women had been ordained in the Episcopal Church since 1974 and I had grown up when girls and women could not even be acolytes or lay readers or members of Vestries or Deputies to General Convention. So now, riding across the long stretches of the highways of Wyoming, in my late 30s, it was not really in my mind as something to I might do. In fact, I had been sort of shocked by the first women getting ordained and wondered if it would be the end of the church! At this point in time I was a Senior Warden, Lay Reader, Lay Preacher and member of Executive Council for the Diocese, Deputy to General Convention and would become a Representative from Province VI to the National Executive Council, as well as teaching Sunday School, directing the Church Camp, and was happy doing all these ministries. So what was with the tears?

In 1991, as I turned 50, I went to seminary (the spaghetti sauce epiphany). And in 1996 was ordained a priest. It has been the best "job" ever. I reflect on the reasons I loved it (and still love it though retired) at Episcopal Café.

All this is sort of a long way into reflecting on Hieronymus Bosch's painting of the Magi visiting the Christ Child.

I love this painting for all the weird details. See here for more info on the details. The whole sense of the absurd and the terrible going on during this most holy of encounters reminds me of how it is with God and life. God shows up in all sorts of settings, sort of like the game of tag "ready or not, here I come." Armies are at war, people are making fun of religion, others are just join on about their daily lives. But here in the center the three who have been seeking their true hearts' desire, bring their gifts and kneel in awe.

It is a reminder to me of the Jesus I follow - who is here no matter what the circumstance. Pray that we will be wise enough or foolish enough to see as we follow our stars.

Wednesday, November 27, 2013

Of whales and stewardship campaigns

Yonder is the great and wide sea
with its living things too many to number, *
creatures both small and great.

There move the ships,
and there is that Leviathan, *
which you have made for the sport of it.
Psalm 104:26-27 (BCP)

Saturday, driving from Nehalem to Cannon Beach, I stopped at Neahkahnie Mountain to look for whales. It was one of those blue sky days where it looks like you can see the curvature of the earth. Since we moved from Wyoming to the Oregon Coast I stop to look for the whales in the spring and fall when they are migrating but no luck. This time - there they were - leaping and blowing great spouts of water. I could see them with my own eyes but I also had my binoculars with me so I could see them even more clearly.

A couple from Europe was standing there - I asked, "Can you see the whales?" They said they had been looking all during their trip but could not. I pointed them toward the whales. The whales are not as far out in the ocean as people sometimes think. The couple was delighted. I let them use my binoculars as their's were low power.

A few weeks ago a young man wrote that his grandmother always said, "don't give ... share."

I have been thinking about the difference - giving and sharing. Saturday I had an example - sharing has the sense of delight. Giving feels more like something I should do. Sharing is something I want to do.

When I offer money or my time or share something that I know how to do - it is all the better when there is a sense of delight and joy. I am richer for sharing. The couple and I shared mutual delight - their joy increased mine on the day of seeing whales.

There is a passage in the Bible that says if you can't get to the temple with your offering - give a party for your friends and neighbors. When we talk about stewardship as we often do at this time of year I want to have this sense of sharing and delight in whatever I offer.

First published at Episcopal Café


Monday, November 11, 2013

The woman with 7 husbands

Reading is here.

Until this week I have read this lesson as being about Jesus debating with the Sadducees when they were trying to catch him out in some theological point. Of course the Sadducees don't believe in afterlife so they can make fun of that belief with their story. Or even if they did think about afterlife - given their cultural context the story of the brothers and the widow would be worrying.


In Jesus day, women were property - transferred from father to husband to first born son. They never had possession of themselves. Hence the question of where she belonged. Never having a child (meaning son) would leave her in confusion in their minds.

As I was reading the story this week and also reading Suzanne Guthrie's Edge of Enclosure reflections - I had a whole different idea about it.

When Jesus says "marry and are given in marriage" he means men (the ones who marry) and women (the ones who are given in marriage) - totally different categories of people. So when he says in the afterlife there is none of this - I can almost hear the women in the crowd gasping. "What, we are going to be our own persons? We will have decision making powers about our own lives?" Breathtaking and no wonder the Sadducees are silent - Jesus has opened up something bigger than they had imagined with their debating point.

Jesus breaks something that seemed unbreakable. From the first naming of things (to show possession) of the Genesis story to this moment - man has been doing the naming and all else (including women) are objects.

A friend noted that she believed the first sin was the naming - the objectifying of others. When we name things we are saying we own them. Think of your pets - do you know their real name? Or mountains?

T.S. Eliot puts it like this
The Naming of Cats is a difficult matter,
It isn't just one of your holiday games;
You may think at first I'm as mad as a hatter
When I tell you, a cat must have THREE DIFFERENT NAMES.
First of all, there's the name that the family use daily,
Such as Peter, Augustus, Alonzo or James,
Such as Victor or Jonathan, George or Bill Bailey—
All of them sensible everyday names.
There are fancier names if you think they sound sweeter,
Some for the gentlemen, some for the dames:
Such as Plato, Admetus, Electra, Demeter—
But all of them sensible everyday names.
But I tell you, a cat needs a name that's particular,
A name that's peculiar, and more dignified,
Else how can he keep up his tail perpendicular,
Or spread out his whiskers, or cherish his pride?
Of names of this kind, I can give you a quorum,
Such as Munkustrap, Quaxo, or Coricopat,
Such as Bombalurina, or else Jellylorum-
Names that never belong to more than one cat.
But above and beyond there's still one name left over,
And that is the name that you never will guess;
The name that no human research can discover—
But THE CAT HIMSELF KNOWS, and will never confess.
When you notice a cat in profound meditation,
The reason, I tell you, is always the same:
His mind is engaged in a rapt contemplation
Of the thought, of the thought, of the thought of his name:
His ineffable effable
Effanineffable
Deep and inscrutable singular Name.

What Jesus is doing in this passage it giving ownership of self back to women. It is really quite shocking - and I didn't see it at first - being caught up in the debate and thinking it is about after life. But we know that Jesus prays that earth will be like heaven (Lord's prayer "on earth as in heaven") so he is not caught up in a debate but telling us a deeper truth about what God is wanting for us.

Who knew?

Thursday, October 17, 2013

UTO restored

Hopefully the final chapter of the UTO controversy: Executive Council has expressed its regrets about how it all went down. Episcopal News Service reports:
[Episcopal News Service – Chicago, Illinois] The Episcopal Church’s Executive Council formally moved Oct. 17 to try to heal the wounds incurred during the recent controversy over the functioning of the United Thank Offering.
Council’s efforts included two resolutions and many statements of support for the future of UTO and its relationship with the wider church.
In addition, Presiding Bishop Katharine Jefferts Schori told council that she and UTO board president Barbara Schafer, from the Diocese of Nevada, were working on a joint statement to later release to the church.
Steve Hutchinson, chair of council’s Joint Standing Committee on Governance and Administration for Mission (GAM), told his colleagues that his committee’s Oct. 15 discussions with four UTO representatives were “substantive, frank and productive.”
He characterized the attitude as one of “very strong support and high hopes to move forward – not to dwell on the past – but to move forward cooperatively.”
In one of council’s two UTO-related resolutions, passed on the final day of its Oct. 15-17 meeting here, members “acknowledged with deep regret the breakdown of communication and relationship between the board of the United Thank Offering and leadership of the Domestic and Foreign Missionary Society.”
They “committed to a season of reconciliation and renewal of all involved in a thoughtful and faithful engagement and conversation to resolve matters of governance and administration, while honoring the UTO’s historic promotion of a theology of thankfulness, so that the mission of the UTO can be strengthened.”
At the same time the members committed themselves to “continuing support of the UTO by offering gifts of thankfulness on a regular basis through the ‘little blue box’ or [to] direct gifts to the spring and fall Ingatherings,” and invited the whole Episcopal Church to join them.
“We give thanks for the years of inspirational and prophetic service to the wider Church that the United Thank Offering and generations of women leaders have made, and look forward to celebrating the 125th anniversary of this important work as we seek renewal of this mission for generations to come,” Resolution GAM011 concluded.
Council’s Joint Standing Committee on World Mission also brought forward a resolution Oct. 17 expressing thanksgiving for the ministry of the UTO and support of its work going forward. Resolution WM015 affirmed the UTO board’s 2014 United Thank Offering Grant Focus and Criteria (to be posted Nov. 1 on UTO’s website). Finally, the resolution also encouraged every Episcopalian to get and use daily a UTO Blue Box.
Council’s discussions were prompted by the resignation in early September of four UTO board members over what became for some a controversial effort to draft a memorandum of understanding between the UTO and the Domestic and Foreign Missionary Society, and new bylaws for the historic organization which Jefferts Schori said were meant to bring the operating procedures “into compliance with both federal law and with DFMS policies.”
Hutchinson said during a mid-day news conference Oct. 17 that the most recent controversy was “a bit of a boiling over of a broken relationship, frankly, some of which probably goes back for decades, some of which is more recent.”
He also noted that “notwithstanding 125 years of wonderful ministry in the church, United Thank Offering as an organization has never been formally defined as an entity in the Episcopal Church, and that has promoted a great deal of confusion at different times in its history and in some way has probably contributed to some of the erratic functioning in the relationship with other parts of the church.
Now however, Hutchinson told the council, there is hope for “a new identity, a new season of collegiality and cooperation.”
He told council that a working group of UTO board members and GAM members would soon be organized to continue the efforts to move forward.
Hutchinson, who had been involved earlier this year in the work on the bylaws revision and memo of understanding, had convened a closed GAM meeting on Oct. 15 with UTO board president Schafer; the Rev. Sarah Carver, appointed UTO board member from the Diocese of Eastern Michigan; the Rev. John Tampa, appointed UTO board member from Diocese of North Carolina and Margaret (Peg) Cooper, UTO Grants Committee chair, Diocese of Missouri. The four had been invited to the first day of council’s meeting.
Hutchinson told the council Oct. 15 that he would asked for the closed session because “this is about creating … a safe place for very open conversation.”
Those present, besides GAM members and the invited members of the UTO board, were Jefferts Schori; the Rev. Gay Jennings, House of Deputies president; the Rev. Heather Melton, UTO missioner; Bishop Stacy Sauls, the church center’s chief operating officer; Paul Nix, church center legal counsel, and Sally Johnson, Jennings’ chancellor.
Hutchinson had said he wanted to create “a safe place for very open conversation” that would be “quite brutally honest where necessary, compassionate, hospitable.”
UTO was established in 1889 as the United Offering by the Women’s Auxiliary to the Board of Missions and primarily supported the work of women missionaries. UTO later broadened its emphasis to include all areas of the church’s work.
UTO grants are funded in large part with the money that Episcopalians deposit in “Blue Boxes,” which they keep in their homes and offices. Over the last 124 years UTO has granted $131,789,046.70, according to a report here.
UTO suggests that people should daily pray and give – by putting some coins in their Blue Box – in recognition of their daily thanks for what God has given them. Oftentimes, the people whom the UTO calls “thankful givers” supplement their daily contributions before sending the money to UTO either individually or through a process known as diocesan in-gatherings. The UTO believes that thankful giving unites the givers spiritually with the people who benefit from their gifts.
During the group’s Sept. 25-Oct. 1 board meeting, Melton said said that giving to UTO has declined over the last 10 years.
In 2007, the UTO made 91 grants totaling $2,401,906.70. In 2009, it granted close to $2.1 million in 63 grants. For 2013, UTO awarded 48 grants for a total of $1,517,280.91. The complete list of grants is here.
Executive Council called in 2008 for a UTO study group to clarify the Domestic and Foreign Missionary Society’s legal relationship with UTO. (The DFMS is the church’s corporate legal entity.)
Sandra McPhee, the first chair of the group, noted at the time that there was nothing in writing that spells out the UTO’s relationship to the DFMS, despite the fact that UTO was using the tax-exempt number assigned to the DFMS by the Internal Revenue Service, which expected the DFMS to “control” the UTO.
The council committee that proposed the study group also noted the UTO’s declining revenue and wondered if UTO’s fundraising model and grant-making methods needed updating.
The 2008 study group reported to council and General Convention in 2012. Councilapproved the group’s report in 2011, including a new set of by-laws and called for a memo of understanding between UTO and the DFMS. Convention also adopted the report and the by-laws.
Jefferts Schori called a meeting with UTO board members and DFMS staff this past July. During that meeting she appointed a committee to work with some UTO board members to draft a memorandum of understanding and to revise the group’s bylaws to bring about the compliance with federal laws and DFMS policies that the presiding bishop sought. It was that work that eventually led to the UTO board member resignations.