Letters from the Breach

The Spoon Theory

2010-06-22T22:06:00.000-07:00

Apropos of our discussion regarding helping people "get it" here is the Spoon Theory alluded to by Wonky Warrior in her recent comment. It's from the blog But You Don't Look Sick. This is the best attempt I've seen at explaining the impact of chronic illness. Please read this.

An amazing RA Blog from Wonky Warrior

2010-06-22T20:04:00.000-07:00

I'll have a new post up soon. I'm stewing on one. I've been a bit distracted with a flare in my elbows (which has limited my computer time) and with getting all my duckies in a row to go on Humira, my first biologic.

In the meantime, you must-must-must read this new blog. I suggest reading from the first post to the present to get the full effect. Ms. Wonky is indeed a Warrior. I laughed til I cried and sometimes just cried. Incredibly funny and moving and inspiring. Blessings on you, Wonky. Saving my best prayers for you.

Angry? You bet.

2010-06-22T10:19:00.000-07:00

Here's a great post from RA Warrior. If you're a warrior, you'll be reassured that your anger is normal and that the studies suggesting an RA personality are bunk. If you're a friend or family member, perhaps you'll understand a little how autoimmune arthritis and the resulting fall-out in our lives can stir up emotions that you aren't used to seeing in the person you love.

Become an RA Warrior and Help Spread Awareness About RA

2010-06-21T15:32:00.000-07:00

Those of us battling RA and related diseases owe a huge debt to Kelly at the RA Warrior website for her amazing efforts to raise awareness about autoimmune arthritis. Not only does Kelly gather the latest research on autoimmune disorders and place it in context, she also works tirelessly to challenge skewed and inaccurate portrayals of RA in mainstream media. (See more about the RA Warrior campaign requesting that Women's Day Magazine get it right by clicking here.)

Kelly also maintains a very active Facebook page where folks living with RA find hope and support. Kelly does all of this while waging her own battle against RA. She is my heroine and a huge role model for all of us who seek to live a passionate and hopeful life with chronic illness.

You can help by entering RA Warrior's contest. It's as simple as a post to your facebook page and/or blog. Please help us raise awareness about RA! It will make a difference for those of us who are warriors every day.

Why good people say stupid things

2010-06-15T11:56:00.000-07:00

Last night someone posted a comment on my recent post about the seriousness of autoimmune arthritis and the frustration we feel at those--from family members to strangers--who don't understand or support us. You can read the comment here, but the gist--as I read it--is that if we just patiently educate people, most will understand. Those of living with RA/PA/AS and related diseases know that it's not that simple. I started to reply in a comment but it was turning in to a rather lengthy post. So here is my response to all those who think it's just a matter of education:

I wish it were as simple as you describe. But if it were, the blog roll at the right would be much shorter and 11 other women would not have found so much resonance in my post. The problem goes far beyond ignorance. Explanations alone do not suffice. Some of the women who commented have been educating others about autoimmune disease for decades--to no avail. "It's just a little arthritis" is just one of the comments we hear on a regular basis. You can see ten more rude/oblivious comments that people have actually said to me at this post: Cancer and Crow's Feet: A Lesson in What Not to Say.

It would be one thing if we only heard these things from strangers. But sadly even people who care about us do not often take the time to really learn what we are going through. For many of us, the disease is invisible. So unless you live with us, you will generally see our best "face"--the face we put on when we need to go out in the world. You won't see us lying awake at night in pain, struggling to do simple tasks, running out of steam part way through a very long day. So even friends and extended family don't see the real face of autoimmune arthritis. Then, when we say "no" to something, they think we're being difficult or lazy or antisocial or flaky. It's fascinating to me that people who have known me for years find it easier to assume there has been a change in my character than a change in my physical ability.

With strangers and acquaintances, or people who meet us for the first time after our diagnosis, it's worse. They have no "old Kris" to guide their interpretations of my behavior so it's much easier to jump to character flaws instead of learning about the disease.

I've been wondering why this is so hard. Why can't people grasp the medical facts of our illnesses and translate that into compassion? I think the problem has something to do with the human reluctance to engage suffering. To really understand our situations--why we can't travel on the same schedule we used to or why we can't make that 8 am meeting--people would have to understand and acknowledge our suffering. Most people don't want to do that. To authentically engage someone else's suffering when there's nothing you can do about it takes a certain emotional and spiritual fortitude that not everyone has developed.

I minister in a neighborhood saturated in suffering. For some folks who come to serve with us, it's too much. They are fine if they can write a check to support our free community dinners, or if they can wash dishes in the kitchen. But if you ask them to sit down with someone very unlike them and really hear their story (which will contain a dose of suffering that "middle-class" folks can't understand or even imagine), they look like deer in headlights. Some become frustrated because try as they might they simply can't understand the lives of those living in poverty. They can't fix it. And they can't even fathom it, so they blame the victim or shrug their shoulders and walk away. It's a relatively rare few who can offer love and validation to people whose lives they can't understand. But if you do that long enough and lovingly enough, you do begin to understand--at least a little. Unfortunately, few are cut out for that kind of persistence in the face of suffering.

I think something similar is at work in most people's responses to those with chronic illness. When people see suffering, they want to fix it. So they offer up ridiculous advice and cures. Or, realizing they can't fix it, they find a way to disregard it. Sometimes they resort to character assassination. The "get a job" response to someone living in poverty and addiction has a cousin in the "pull yourself together" response that many of us encounter on a regular basis--even from those who love us. Other times they attempt to diminish and deny, as in: "it's just a little arthritis." Sometimes these inane responses may even be a misguided attempt to make sense of what we tell them. The person who says "Oh, I have rheumatism in my left knee" may intend to show understanding. Of course, they don't know what they don't know. And their comment becomes a punch in the gut that denies our experience. These are just some of the reasons good people say stupid things.

If the answer were education--and patience on the part of those who suffer--this world would be a different place. There would be a safe and warm bed for every homeless woman in our city, little children in West Central Spokane wouldn't turn up at our church's coffee hour in their underwear because they are hungry, and people facing the fight of their lives against disability and early death would not have to bear the judgments and disregard of those who don't get it.

This is not to say we give up. We must keep speaking up and speaking out. But no matter how clearly we communicate and educate, people will misunderstand and disregard us. And for the wounds we suffer--from our diseases and from people who don't get it--we have one another as balm. We have, in each other, other human beings who do understand what it's like to have our own bodies turn against us and turn our lives upside down.

A week in the life of an arthritis patient

2010-06-12T22:47:00.000-07:00

One of the surprises I've experienced living with autoimmune arthritis has been how dismissive people can be. It's just a little arthritis, people say. Well, here's some tangible evidence of how a little arthritis changes a life.

These are the new additions this disease has brought to my life--one week's worth:

Supplements, pain meds, sleep meds, and chemotherapy. Yes. Chemotherapy. That little vial is methotrexate--a drug which was developed from mustard gas and is used to fight cancer in higher doses. That's how serious autoimmune arthritis is. What you don't see: the pneumonia and shingles vaccines and the TB test I had this week in preparation for adding another med after some "wait time" to give the vaccines time to do their work. In three weeks, I'll begin injecting Humira every other week in addition to weekly methotrexate.

I'm grateful for every thing in this photo. I have insurance that helps me pay the doctors, labs, and pharmacies. And I'm thankful for advances in medical research which have created new treatments that may reduce my disability and add years to a life that otherwise would be shortened by the chronic, systemic inflammation that accompanies autoimmune arthritis. Compared to those who began their fight with arthritis decades ago, when treatments were few and less effective, I have a good dose of hope to go with all these meds.

If I could add one thing to this weekly routine, it would be the understanding and patience of friends and acquaintances. It's hard to understand if you haven't fought the day-in, day-out battle that arthritis brings. Arthritis is real. Arthritis is serious. The kindest thing you can do for me, or anyone else dealing with this disease, is to treat it like it's something--not nothing. It is most definitely something.

The Long View

2010-06-05T22:11:00.000-07:00

Last Sunday, rain clouds skirted us all day before breaking loose their burden into this unseasonably wet and cold spring. The skies mirrored another kind of weather: how I’ve been feeling—physically and, to some extent, emotionally—as my pain has worsened again.

Since being diagnosed with autoimmune arthritis, one of the hardest things to accept has been how freaking long it takes to measure progress. At first, I was puzzled and irritated when the rheumatologist scheduled my regular appointments two months apart. Didn’t he understand how much this disease was messing up my life? And when I had my “Mac truck” flare (after 6 weeks of apparent drug-induced remission) he took it in stride, called in a prescription of prednisone, and said he’d see me in a couple of weeks at my next scheduled appointment. I could barely walk. For him it was all in a day’s work.

His relaxed approach to what felt like an emergency bothered me until I realized it just takes that long. With the medications used for autoimmune arthritis—DMARDs and biologics—it takes one to two months before you know if they are doing a damn thing. And overlaid on this can be an ebb and flow of symptoms that are unrelated to any conscious interventions by patient or doctor. (For more on this, see RA Warrior’s description of common patterns of RA). In the midst of wondering whether a new treatment is working, a few good days raise your hopes. A string of bad days dashes them.

Six weeks ago the PA increased my dose of methotrexate. Give it a month, he said. And at five weeks, I started feeling better. Not all better. Not like the miracle of my first response to the metho. But I was taking less Vicodin, sleeping better. I dared to think it might be working. Maybe one more little tweak could get me back to near-remission. Maybe I could avoid adding a biologic and just switch to injectable metho which gives you 30% more punch for your dose compared to oral.

I felt better for several days—just long enough for me to start trusting it—then the pain and fatigue ramped up again, right back where I started. At my next appointment three weeks from now, if things haven’t gotten significantly better, the doctor will likely recommend adding a biologic.

The unpredictability of this disease has been teaching me about living in the moment. And yet there is a tension between being present to the “now” and living the long trajectory of this disease. It reminds me of how the stories in our Scripture often have integrity of their own, but find their depth of meaning in the narrative arc of the larger Story of God and His people. A good day may mean the beginning of remission, or it may mean nothing. It’s only in retrospect that the story begins to take its shape. But like many of us, I’m addicted to the long view.

A few weeks ago, I found a therapist who specializes in chronic pain and illness. (I’ve decided that I stand the best chance of living well with this disease if I tend every aspect of my health—from dental to mental—with consistency and thoroughness.) She asked me to start charting my pain against things like sleep quality, physical activity, and emotional or mental stress to see if I can uncover any patterns to the pain. I’ve tried this early on and found paying close attention to the ups and downs in my disease activity tended to tip me into depression. My therapist has encouraged me to try again, but to do so with as little expectation as possible. That is, to treat this as an experiment which may, or may not, reveal helpful conclusions. The challenge, then, is to avoid trying to make sense of every moment as it happens. Right now, I’m just gathering data.

We are creatures desperate for context, for meaning. Diseases like autoimmune arthritis don’t follow a play book. My challenge at the moment is finding a way to be proactive without craving a long-range plan. More and more, I’m finding moments where that seems possible. I count as progress those times I’ve found a certain peace in lying awake, sleep held at arm’s length by pain, the night stretching on and on. After I’m done fretting about what the lack of sleep will do to me the next day, after I’m done being pissed off—again—that I have this disease, and after I release—again—the worry that this pain is the outward sign of the inward destruction of my joints, after all this, I’m sometimes able to simply be in a way that I’ve never experienced before. In those moments, my pain doesn’t need to have meaning. It simply is. And there’s a trust that this long night contributes somehow to the arc of my life and to the way this life fits into God’s Story.

A Better Pain Scale

2010-05-31T11:00:00.001-07:00

Thanks to Lene @ The Seated View for sharing this link: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

inventory

2010-05-23T20:26:00.000-07:00

Well, what a week it's been. On Thursday and Friday, I finally hit the wall of myself. I spent about 48 hours in the emotional breakdown lane as I finally took stock of what I've lost.

Most of my arthritis friends have something on their blogs about life before arthritis. There are often references to the "old me." At the risk of having some smart ass point out that the old me is really the young me, I thought I'd share a little of what I used to be able to do--because to grieve something well, you have to name it and acknowledge what it meant to you.

The old me could kayak all day--the Upper Coeur d'Alene was my favorite . . .

The new me hopes I'll be able to kayak flat water--a few hours would be great.

The old me could hike for hours at a stretch . . .

The new me can walk about 20 minutes--slowly--before the pain gets bad enough to make me stop.

The old me could sleep on the ground, then chase a toddler around a campground . . .

The new me can't sleep without Vicodin, Neurontin and sometimes Benadryl--four to six hours at a time when I'm lucky.

The old me could cut down a Christmas tree in snowy woods . . .

The new me ran out of energy to decorate my tree-lot tree this year. It stood there naked for three weeks, then my husband took it down.

The old me and my husband built this wall--four feet high and 100 feet long. Each of those blocks weighs 76 pounds. The old me could lift one by myself.

The new me has to tell the baggers at the grocery store that I have a "bad back," then carry the bags to the house one at a time. My husband carries the laundry up and down stairs and opens jars and bottles for me.

The old me could stay up until the wee hours of the morning to accomplish a task--in this case, a cake shaped like a police car. I could do whatever it took.

The new me has about 5 good hours a day before the fatigue sets in and the pain ramps up.

The old me could eat pasta without consequences. Then I could run off the calories--three miles a day.

The new me avoids gluten, dairy and soy which contribute to the overactivity of my immune system. The new me can't run.

The old me planted a garden.

The new me struggles to tend it.

The good news is: the 48 hours I spent venting was strangely freeing. It enabled me to do a thorough inventory, and once the losses were truly counted, I was able to tally those things about the old me that haven't been lost--the ways "me" continues to exist.

For a hard core do-er--that is, someone who defines herself by what she can do rather than who she is--this is more than a small victory. This illness, in stripping me of physical abilities, had completely upended my identity. Grief hid me from myself for a while--for grief is so very thick and dark--but I'm back now. At least, I'm back in the ways that really matter.

Thanks to my dear friend Goat who helped me come up with this list of "old me" characteristics that have less to do with what I could do and more with who I was (and still am).

The old me was/had:

spunky--check
chutzpa--yep, still there
irreverent--oh, yes
quick wit--well, people laugh at me regularly, does that count?
fearless--that's never been strictly true, but I fake it well
integrity--I hope so
never dropped the ball--well, sometimes I do now, but I'm finidng it can be a good thing
transparent--you're reading this blog, aren't you?
driven--yep
didn't like to fail--still don't, but I'm also learning to redefine failure
listens well--learning to listen to myself as well as others
not afraid to begin, harder time ending--still true, getting better at endings
kind--I think this part of me is back
ridiculously bad boundaries--yeah, this one might be worth losing

So what's left to count? All the ways the new me might be getting better, gentler, wiser. This is what I'm praying for--all that painful-to-learn stuff that you really shouldn't pray for unless you mean it. Patience. Compassion. Insight. Depth. No one wants to live with a chronic illness, but, hey, as long as we're here . . .

An Exercise in Optimism

2010-05-19T11:05:00.000-07:00

This weekend I got in a bit of a snit. If I'm going to hurt all the time, I thought, I might as well get something accomplished. Basically, it was a tantrum. So I decided to finish putting in my vegetable plot. It's only 4 by 16 feet, but this season small is good. Last season I had pain and devastating fatigue, but no diagnosis. The garden went neglected. This year, I have pain and slightly less devastating fatigue. But I also have a diagnosis, some helpful tools, and Vicodin. What more does a gardener need?

I'm titling this post "An Exercise in Optimism" because with the disease I never know week to week, day to day, or sometimes hour to hour, exactly what my body will let me accomplish. The garden I plant today my languish untended tomorrow depending on what the disease does. Lately I'm thinking that optimism really should have a verb form. So often optimism is an action, not a feeling.

Currently my biggest challenge is the sacroiliac joint--where my hips attach to my spine. (This is why the rheumatologist is keeping the psoriatic arthritis diagnosis on the table. The S-I joint is a common site for this particular autoimmune arthritis.) So bending, squatting, and getting up and down can be a challenge. Luckily, the involvement in my hands and knees is still mild, so for now I can get by in the garden using my kneeler. It has handles I can use to lever myself up, and because the kneeling platform is a couple of inches off the ground I can use it even in heavily planted beds without crushing everything. Best of all, when you flip it over, it becomes a bench. Nice!

Isn't it great? And so Episcopalian.

And that nifty tool you see on it. The best weeding tool I've found so far. Weed fork and trowel combined. A serrated edge for sawing through little roots or cutting off baby weeds below the surface. A nice thick grip that's easy on the finger joints, and that little curvy part that keeps it from slipping when you push it into the soil.

Of course, these accommodations don't change the fact that everything is different. Methotrexate makes you sun-sensitive, so sunscreen is now a must, not an option. I've never been able to do anything--gardening, painting, cooking--without ending up covered in whatever medium I'm using. So now I'm not just dirty after gardening--I'm greasy and dirty. But the biggest change is my sense of productivity.

Just about everything takes longer when you have arthritis, and gardening is no exception. Add to that a dramatic decrease in stamina and the limitations imposed by pain, and projects that used to take a few hours can take days or more. By working slowly and carefully, I planted my beans, set out my tomatoes, and replanted the spots where the early crops failed to sprout. But I still struggle with intense frustration over how little I accomplish. Then the grief reprises. Then the guilt--because I took the "old me" for granted, and because I'm such a whiner when other people are worse off than I.

The only antidote to this mental masochism seems to intentional gratitude--a truly challenging discipline for a Type-A like me who still doesn't want to admit that everything has changed. It's a bit easier to be grateful when I read my blog-land friends who have more advanced or more intense forms of arthritis and have long ago had to entirely give up activities they love. Even so, it's mechanical, the way I give thanks, but maybe God still honors that. Lately, I'm determined to give thanks especially for the moments that can drive me to tears--the moments spent lying in bed and slowly moving each part of my body so that I can get up, or the moments awake in the wee hours (in the spare room so I don't wake hubby) waiting for the clock to tell me it's OK to take another Vicodin. It's my hope that this "unconditional gratitude" will begin to work in me what St. Benedict called "conversion of life"--the transformation of my deepest self into more of God's vision for me.

So did I pay for my exercise in optimism? Well, yes, I did. The woman who used to work 8 hours a day in the garden has gone off somewhere, replaced by a woman who struggles with stairs after a two-hour stint among the tomatoes and peas. On Monday, the physical therapy aide reminded me to "work to fatigue, not to pain." But this athletic young man also assured me it takes time to make the adjustment. The gentleness of his voice said, forgive yourself, be kind to yourself. With all the advice being offered to me these days, I think that's the advice I need to take.

Staying Sane - from Lene Anderson @ Health Central

2010-05-14T10:08:00.000-07:00

Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. . . .

Read the entire post here.

Read more of Lene's writing @ The Seated View.

(Thanks, Lene. I needed this.)

Cancer and Crow's Feet: A Lesson in What Not to Say

2010-05-10T18:58:00.000-07:00

My mother was dying of cancer—bald, one-breasted, and deep in the throes of chemotherapy—when one of her friends called her. One would hope she was calling to cheer Mom up. Not so much. “I’m sooo depressed,” the friend said. “I just don’t know what I’m going to do.” “What happened?” my mother asked. Her friend replied, “I woke up this morning and looked in the mirror, and I have crow’s feet!”

So far, my interactions with people who learn of my diagnosis have not been that gobsmacking. But people do seem to have a hard time knowing what to say to someone with a chronic illness—especially one as unfamiliar as autoimmune arthritis.

I try to avoid that awkward moment of disclosure. I’ve learned to tell the checker at the grocery store that I have a “bad back” so she’ll pack my bags lighter and put them back in the cart for me. I make good use of the phrase “health issues.” But eventually, when someone is a “regular” in your life, you have to tell them. And sometimes even near-strangers will corner you into confession, pestering you about why you can’t do something, or why you are limping, until you finally give in.

I try to keep it simple: “I have rheumatoid arthritis.” Because even though my rheumatologist hasn’t decided if I have rheumatoid, psoriatic arthritis, or both, it’s a phrase that at least some people recognize. I also try to steer the conversation away as quickly as possible. With some people, these precautions head off unfortunate remarks. But it doesn’t stop others from uninformed—even rude—comments.

I know that people don’t intend to be hurtful. These comments come from ignorance and the social pressure to say something, anything. But that “anything” often sounds like judgment or skepticism. So to help prevent those awkward moments, here’s my top ten list of what not to say.

All of these are actual comments people have made to me. (Some of them are even from dear friends who, like all of us, have experienced an unfortunate and momentary interruption of the mind-mouth connection.). My responses below have never been voiced. These are the replies I think of after the fact, but probably could never bring myself to actually say. Perhaps my unspoken responses—sarcasm and all—will provide a glimpse into how a seemingly innocent or well-meaning comment can be hurtful.

10 Things Not to Say to Someone with Autoimmune Arthritis

(And What I Wish I Had the Nerve to Say to Your Face)

10. I have a touch of rheumatoid arthritis in my left knee. No, you don’t. That’s like being a little bit pregnant.

9. You don’t look like you have arthritis. And you don’t look insensitive. But you are. Maybe I’m having a good day, or have a few hours left on my last dose of Vicodin. This is an invisible disease. Thanks for implying I’m a slacker.

8. You need to be careful if you’re taking [Advil, Tylenol, Aspirin]. It can really be hard on your [kidneys, liver, stomach]. That’s the least of my worries. The drug I’m taking is used to treat cancer. It was derived from mustard gas. It can hammer my liver and permanently damage my lungs. On the plus side, it enables me to walk. But thanks for the heads up.

7. Come on! Come have coffee with me. It will be good for you. Though I love you, dear friend, I have a limited amount of energy. Sitting in a coffee shop equals 2 fewer hours to cope with daily life. If you really want to spend time with me, help me weed the garden or clean house. We’ll get time together, and I’ll get some much needed help with the chores that I can no longer do on my own.

6. You should take glucosamine. It really helped my [insert single joint here]. The phrase “pissing in a hurricane” comes to mind.

5. You can’t possibly have arthritis. You’re too young. Really? Whew! I’m so glad this is all some big misunderstanding.

4. Have you tried [bee stings, liver cleansing, past life regression, colonics]? My [mother, sister, husband’s cousin’s ex-fiancee] swears by it. I have a great team of doctors, all of whom went to medical school. I can’t imagine why none of them thought of that.

3. My [insert single body part here] has been hurting for days. I can’t take it anymore. Shall I call the waaaahmbulance?

2. I have arthritis, too. Who’s your rheumatologist? Oh, not that kind of arthritis.

1. Is there anywhere to sit in your house that isn’t covered in cat hair? How sweet of you to notice that this disease has completely disrupted my life. There’s the vacuum. Knock yourself out.

The Best Time to Have Arthritis, Or The Optimist’s Dilemma

2010-05-08T20:20:00.000-07:00

Do you have any questions for the doctor?” I asked. I was making my lists—medications and questions—being a good patient.

“Just Is it ever going to get better?” Mark said.

The tenderness in his voice made my eyes brim. Yes, it all comes down to that question, doesn’t it?

The next day, I offered it up to D, the rheumatologist’s PA, apologetically: “I know what you’re going to say. But my husband needs to hear it from you. He wants to know if I’m going to get better.”

“Yes,” D said.

Yes?

I’d expected a solid I-don’t-know because the only thing certain about my experience of autoimmune arthritis has been its uncertainty. We might be able to get you a remission. This drug is promising. We expect to slow your joint damage. We’re unsure exactly what kind of arthritis you have, we just know it’s autoimmune. If this doesn’t work, we’ll try something else. Might-promising-expect-unsure-if. A bouquet of guesses ribboned with equivocation. My daily experience of this disease has been just as muddling. Day to day, the symptoms vary. I can’t tell you on a Monday if I’ll be up for a Wednesday night outing.

Add to this, the confusion of scientific studies one can read on the internet. Estimates for natural (untreated) remission rates in undifferentiated arthritis range between13% and 53%. If I fall in that 47 to 87% who don’t get a natural remission, and I don’t take the drugs, I’m playing chicken with the power of the inflammatory process to create not only joint damage, but to wreak havoc with my internal organs and blood vessels. Another article referenced in RAWarrior’s blog suggests you might as well flip a coin when deciding which drug to take. Humira and Enbrel—the latest drugs I'm considering—both reduce (not eliminate) joint symptoms in about 50 to 60% of patients.

D continued, “You won’t always be like this. You’re not in a flare. What you’re calling the ‘mac truck’—that was a flare. But you’re not controlled either. It can take 2 years to find the right combination of drugs to control your disease. But you will feel better than you do now”

There is some truth to the annoying statement: “This is the best time to have autoimmune arthritis.” There are many more drugs. Joint damage can often be stalled or slowed, buying years or decades of active life. But I’d suggest that no time is a good time, thank you very much. The journeys of others with autoimmune arthritis—those I’ve known in person or via the internet—argue against D’s optimism. Most people don’t get a remission without the use of serious drugs with serious, sometimes permanent, side effects. Drugs stop working, requiring changes in medication. Flares come out of the blue and leave them bedridden for days or even weeks. Joints degrade, and new joints become affected. My “arthritis friends” tell me that even in a best case scenario I will never be the same.

All of this has me wondering about the role of optimism in autoimmune arthritis. Even when things are going well, I don’t tend to be overly sunny. But I still want to be an optimist. When the pain gets bad, or the fatigue overwhelms, or when I’m just tired of exerting so much energy to do things that used to be effortless, I want to stay smiling, energetic, and positive. It's just so easy to get discouraged and angry. Hell, there are days when I’d happily take “paragon of quiet strength.”

Even if I could flip the sunshine switch inside myself, I wonder if optimism the best long term approach to this disease. In his book Good to Great: Why Some Companies Make the Leap and Others Don’t, Jim Collins interviewed Admiral Jim Stockdale who spent eight years as a prisoner of war in Vietnam. Stockdale said it was the optimists who didn’t make it out alive. He told Collins: “they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

So I’m wondering how I might balance somewhere between blind optimism and despair—some place where I don’t ignore the reality of this disease but neither do I assume the worst. I’m wondering if this is what hope is.

Stockdale said, “You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

I consider what prevailing looked like for Stockdale. When Collins interviewed him, Stockdale still limped on a stiff leg that had never completely healed from the 20+ sessions of torture he’d endured. Yet Stockdale told Collins, “I never lost faith in the end of the story. I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”

I’m beginning to confront the brutal facts. Lately, there’s no such thing as a zero-pain day. Fatigue limits my “good” time to about 5 hours a day. I spend about 5 nights a week dealing with pain-induced insomnia in spite Vicodin and Neurontin, then sleeping away part of the morning. In the last week, I’ve finally accepted that the Type-A life I’ve lead to date is unsustainable. I will have to get help with my house and yard, limit my work at Holy Trinity to 5 hours a day, and drastically restrict my activities in the evenings when my pain and fatigue intensify.

It’s a work in progress. When I think of my "end of the story," of what prevailing might look like for me, I draw a blank. Chances are high that it will not look like a complete or permanent remission. The only thing I know for sure is that I will be changed by this illness, as Stockdale was by his imprisonment. I’m just beginning to see glimmers of the way this experience is transforming me—defining me, to use Stockdale’s words.

I guess this is where faith comes in. No pretty platitudes about God’s will, thank you. God doesn’t will suffering upon any of us. He does endure it with us in solidarity. In my better moments, I trust this illness to make me into more of God’s dream for me, something I definitely would not trade.

from the HT e-news this week, by yours truly

2010-05-05T11:37:00.000-07:00

Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid. John 14:27.

I was a fearful child. All through those days, I carried an internal list of scary things, things that could hurt me—fires, burglars, snakes, spiders, hippies who might kidnap me—and at night my terrors unspooled into a long litany of prayers to a God who was something like a Grandpa with special powers.

A few years later, my fears found their perch as my family’s life unraveled into a tangle of alcohol and estrangement. I don’t remember if I prayed, but I learned to escape to the tree fort I’d inherited from my older brothers. Inside the kitchen, my mother poured out half her soda, filled the can back up with scotch, while I sat at the edge, legs dangling. Counting one – two – three – all the way to ten, and still I couldn’t jump. So I’d close my eyes and pick a color and vow that the instant I saw that color, I would do it.

Red.

I opened my eyes and my gaze caught sun firing the taillight of the horse trailer. I launched myself into space, dropping the ten feet to the ground, and landing in a good six inches of dried, musty manure. Then, I’d climb back up and do it again, and again, and again, each time pinning my fear to a place deep inside.

I’ve since been told that the image of a little girl leaping into a pile of horse shit does not make a particularly poetic metaphor. But looking back I understand what this otherwise anxious child was doing. She was toughening herself up, working her fear like a muscle, transforming it into something known and controlled.

In my teens, and again in my twenties, that illusion of control would shatter like tired bone. What I didn’t know then: any muscle, overdeveloped, can become a hindrance, a constant strain on the balance of the body or the soul.

What that little girl needed—and couldn’t get—was the gentle refrain in our Gospels: do not be afraid. It’s everywhere. We hear it from Jesus, and from the mouths of angels reassuring the lonely, the lost, the bewildered. Do not let your hearts be troubled, and do not let them be afraid.

The human heart is a muscle like any other. Overworked by high blood pressure, the muscle thickens. Enlarged and stiffened, it can’t move blood like it’s supposed to. It no longer fulfills the very purpose for which it was designed.

Not so different from our selves, how our essence changes as we toughen ourselves to abandonment, confusion, tragedy, judgment—all those things that make us afraid. It’s a small step from becoming strong to being hard and brittle. In our efforts to be invulnerable we can impair the very muscles God has given us for the care of one another—empathy, tenderness, compassion. In our attempts at self-protection we fail in our one purpose: to love God and one another.

Jesus offers us a different way, a different peace. This peace is not won by being smart, self-protective, or tough—by a reliance on the self. The peace of Jesus requires a counterintuitive letting go—a leap into the unknown of love. For how many of us truly know the depths of God’s love. Instead of girding ourselves against loss, he asks us to make ourselves vulnerable—to him and to one another. This is how we learn not be afraid.

How will you meet adversity?

2010-04-30T08:53:00.000-07:00

I discovered this video on the blog arthritisfriend.com. Aimee, who was born without calf bones, had both legs amputated below the knee as an infant. In this talk, she reimagines adversity and disability and lifts up the power inherent in all of us.

She says, "Implicit in this idea of overcoming adversity is the idea that success or happiness is about emerging on the other side of a challenging experience unscathed or unmarked by the experience, as if my successes in life have come about from an ability to sidestep or circumnavigate the presumed pitfalls of a life with prosthetics or what other people perceive as my disability. But in fact, we are changed, we are marked, of course, by a challenge, whether physically, emotionally or both. And I'm going to suggest that this is a good thing."

If only life had warning signs . . .

2010-04-25T21:01:00.000-07:00

I was in pain, but that couldn’t fully account for my mood: crabby, desiring more than anything to be alone and unbothered, sadness welling up, tears pooling suddenly so that I’d have to blink blink blink to keep them in my eyes where they belonged.

Then she said, “I imagine you’re still grieving.” And I fell apart, sobbing in the middle of what was supposed to be a meeting about church business.

Back home, I googled “arthritis grief.” On Annette Beach’s blog I read: “Obviously the disease makes it difficult, but added to that is knowing the old Annette is gone and she’s never coming back”—again I burst into tears.

Grief, indeed. What a disappointment to realize that in the six months since my diagnosis all my courage and optimism was really denial.

Six weeks into my treatment with methotrexate, it had been like someone flipped the arthritis switch off. I was the old me again, nearly pain-free. Right on! I was beating this! Then, six more weeks and someone flipped the switch back on.

It began on a Saturday when I slept most of the day away—two stretches of 4-5 hours each. The next day, the pain started ramping up, and by Monday morning I could barely walk. When the pain didn’t let up after a couple of days, I finally emailed the doctor. He put me on a six day burst of prednisone (which, I discovered, totally messes with my emotions—think PMS with an emphasis on weeping). The prednisone hammered the flare, and I felt good again.

But then, in the weeks that followed, the pain and fatigue crept back in—this time in stealth mode so I wouldn’t recognize what was happening and bring in the big guns again. Add some discomfiting new symptoms—an electric current down my leg; a tendency for my left foot to drop so that I’d step on the side of it and just about put myself on the ground; and a sensation of cold on my left hip that had no correlation to the actual temperature of my skin. Every night, pain woke me, a stone in the center of my sleep. And the more exhausted I became, the less I could cope with the pain.

Undone by lack of sleep, I called the dr. again. He prescribed neurontin (a drug that works on nerve pain) and hydrocodone (vicodin) to get me some sleep. He also tested me for adrenal insufficiency—a sometimes after-effect of steroids which can cause fatigue and (WTF?!) joint pain. The results: adrenals armed and ready. So what about the pain? I asked. What pain? said the medical assistant. Helloooo!! Is anyone listening?

And that, my friends, is when the walls of denial began to crumble in earnest. This thing is not going away. My body has changed. The future I've imagined must be revised, except I don’t have any way of predicting the parameters of that future. Or, as my late mother would have said: Shit!

What does grief look like in a chronic illness? For me it looks like bitchiness, impatience, and spontaneous weeping, all tucked beneath a pasted-on mask that says, I am fearless, strong, and trustworthy, and all is well. But that mask is laced with cracks, and nothing makes people more nervous than when our social masks begin to show some wear and tear.

And then there is that blessed complication: the good day—or two or three—when the pain lets up and your joints feel lubricated, and you walk and stoop and turn like a normal person who doesn’t have to think about every movement to ensure you don’t stress a joint or increase pain. The clock runs backwards and your joints are 43 again. And you start to think maybe it’s not so bad, and really you’ve been exaggerating. Or better yet, maybe the doctor has it wrong. Maybe you’ve imagined the whole thing. Everyone has aches and pains, right?

But those good days are at best a tease, at worst the basis for total delusion. Sometimes this feeling—of being normal again—lasts a day or more, sometimes it lasts an hour. But it never lasts. And no matter how much analysis you apply, no matter how many explanations you invent, you can’t figure out why you’re hurting again. And with the loss of that good day or hour, the grief starts all over. And it’s intensified by the fact that you realize—again—that you have virtually no control over this disease and what it’s doing to your body. Sure, you can eat well, exercise, listen to the doctor, take the meds, but no one—not even the doctor—knows what the disease will do to you. You’re just along for the ride.

The only comfort I’m finding these days is the knowledge that grief does run its course. And while this kind of grief will run its course over and over again, the few folks I know with autoimmune arthritis—including my father—show me that one gets more skilled at navigating grief. At the YMCA therapy pool, J tells me that you never stop grieving. Every time you lose one more thing you get to do it all over again. And sometimes, it’s the little things, J says. She wobbles between two arm-braced crutches on an ankle so destroyed she must wear a brace to bear weight on it at all. Yet for J, grief undid her when she could no longer step into a car, but had to sit on the seat, then pivot her body around.

I understand this. The reality that it will never be safe for me to ride a motorcycle on my own, and that we’re not even sure if I can tolerate riding behind my husband—these things are discouraging. But it’s those increasingly common days when I have to sit down to put on my pants—as opposed to standing on one leg then the other—that make me want to weep. Please understand: it’s not the loss of that minor ability itself that I’m grieving. Compared to J on her crutches, my needing a chair to get dressed amounts to a big boo-hoo. Call the waaaah-ambulance. Rather, it’s what that loss of ability represents: a future that is largely defined by forces I can neither see nor control.

And really, we are all in that same boat aren’t we? At the mercy of unpredictable currents. But most of us get to pretend we have a hand on the rudder, and often we convince ourselves that the currents will generally be kind. Autoimmune arthritis strips that delusion away. No wonder there’s grief. But perhaps there’s also some value—some redemption, even—in being forced to face the reality of our powerlessness. I think of Saul on the road to Tarsus, his three days in darkness. I don’t imagine it felt good or safe until after the scales dropped from his eyes.

Saturday Morning

2010-04-24T19:55:00.000-07:00

Sometimes beauty is enough . . .

Trying on the dog collar . . .

2009-10-18T15:00:00.000-07:00

I just realized that I forgot to tell my loyal blog fans--all three of you, I think--that I have been accepted as a candidate for the diaconate. That's the last official milestone before ordination. Next I finish my formation (book larnin'), then apply for ordination.

This weekend at Diocesan Convention, in celebration of my candidacy, I decided to try on the dog collar. Well, not THE dog collar . . .

That would be inappropriate. Instead, I experimented with an actual dog collar embroidered with the Episcopal shield (for those liturgically minded canines who have chosen the Episcopal Church as their faith community--episcopooches) . . .

and then, of course, someone has to hold the leash. After consultation with the CoM (Commission on Ministry) it was determined that since I'm a candidate for the diaconate, the bishop should hold the leash since I will be ordained to a "ministry of servanthood directly under [my] bishop."

To the church ladies who were perturbed: This has nothing to do with gender! It's a play on words--"dog collar," get it?--and a hyperbolic interpretation of the historic relationship between deacons and their bishop. In other words, it was a joke! Thanks to Bishop Waggoner for being such a good sport!

All the birds of the air . . .

2009-09-01T17:00:00.000-07:00

I know all the birds of the air, and all that moves in the field is mine. -- Psalm 50:11

This afternoon I made an unplanned trip to Holy Trinity. I'd forgotten to drop off my electric roaster for use at the weekly dinner party we throw for the neighborhood. I also needed to have an extra parish hall key made, so I figured I'd kill two birds with one stone. I didn't plan on rescuing one.

I'd dropped off the roaster in the parish hall--a separate building from the church--and was about to leave when I realized we might have an extra key kicking around in the sacristy. It would save me a trip to the hardware store then back to the church to test a new key. I unlocked the church and stepped in when a flutter of wings erupted in the cool, dim light.

Our vicar likes to have the doors open in the summer. This one must have flown in earlier that day, or the day before. No one would have noticed him perched high in the beams of the sanctuary.

The bird was tiny, grayish brown with a pale yellow belly and the kind of long slender beak that would make him adept at picking insects from the bark of a Ponderosa pine. Inside the church--where the crumbs of sacred bread had all been swept, where the holy water had dried up months ago--he didn't stand much of a chance.

Except chance--or a nudge--had brought me here, prompted me to unlock the door. Now I propped both front doors wide, and fetched a broom from the sacristy. He was easy to spook. All I had to do was raise the broom in his general direction, and the poor thing fluttered back down the nave coming to rest on a light fixture near the door. I tried to coax him down and out the door, but instead he shot into Lady's Chapel and clung to the chain of a lamp that hung from the high ceiling.

We went up and down the chapel a couple of times before I saw the problem. As long as I was there, he wasn't going to fly down low enough to pass under the door's lintel and back into the sanctuary where the wide-open doors awaited.

I stepped outside the chapel, out of sight and waited. He flew from the light fixture into a bundle of twigs in a vase on the altar.

What to do? A net? It probably wouldn't work. Even if I could get close enough, I'd probably just end up hurting him. I prayed for a little St. Francis mojo. This wasn't working. I could wait. But could I wait all day? It never occurred to me that perhaps this bird did not need to be micromanaged, that he didn't even need me to save him.

Out of ideas, I pulled out my cell phone to call for help. There must be a way.

I had no idea I'd already done all that was required of me: I'd opened the door, and now--distracted by my cell phone and my mission of mercy--I'd gotten out of the way. A flutter of gray wings swooped into the sunlight, pulling hard in the safe and open air.

Committed

2009-08-14T08:57:00.000-07:00

Do you now in the presence of the Church commit yourself to this trust and responsibility?

Today, looking for a place to record random musings, I dusted off an old journal. Well, from 2007--a month or two after I decided to give church another chance.

At the suggestion of a cathedral matriarch, I had just begun preparing for confirmation by journaling about the Articles of Religion. Ever so thorough, Episcopalians have 39 of them first formally established in 1801. They mostly consist of doctrinal statements ("Of Faith in the Holy Trinity") but extend to ordination ("Of Consecration of Bishops and Ministers") and the relationship between church and state ("Of the Power of the Civil Magistrates).

Right now, my friends are laughing. They know my attention span for rules and regs. I made it to Article III before I abandoned the project in favor of quotes from Eugene O'Neill and Anne Lamott and reflections on John Donne's poetry. (Yes, that's a fair-sized chunk of my spiritual discipline).

Oh, well. I've never been good at following a party line. Which makes this vow a fascinating one for a "non-joiner" like me.

As a child, I was far more likely to create a club than join one. No surprise, my clubs were cause driven. There's a new movie out called "Hotel for Dogs." After reading the book almost 35 (gulp!) years ago, I hatched elaborate plans for creating a hotel in my treehouse for abandoned dogs. I recruited friends to the effort--a Hotel for Dogs Club. And I was young enough to think that my parents wouldn't have a clue what I was up to 100 feet from the house.

Well, that particular cause never came to fruition. It's kind of sad when the imagination of childhood fizzles against the reality of execution.

So how strange, all these years later, that I've joined this club called the Episcopal Church--a church very different than the pentecostal church of my youth (though if Roman Catholicism is genetic, that could explain a lot). And we're not talking about my local parish (Holy Trinity) here. I joined a big honkin' mainstream church, and by extension the Anglican communion (provided they don't boot us out). I mean, the Body of Christ is one thing, but this has gotten pretty damned specific.

I've not only joined the club, but I'm ready to commit the rest of my days to an ordered life in service to it. And if you really listen to the vow, this is not just about a promise to God, this is a commitment in the presence the Church (note the capital C) to serve God in the Church. Once ordained, I'll be a deacon for the rest of my life--good times and bad, regardless of how I feel about the Church at any particular moment. That is a trust and a responsibilty.

P.S. To create a groovy tapestry like the one I did (above) go to The Historic Tale Construction Cit (sic).

Yes

2009-08-01T07:19:00.000-07:00

So finally back to my blog after much distraction. Summertime gets in the way. So where did I leave off?

Oh yeah. The diaconal ordination vows. Something about "My sister, do you believe that you are truly called by God and his Church to the life and work of a deacon?"

So here's the thing . . .

A few years ago I would have said:

But now:

So I guess I have to say . . .

8. You can go to a movie like "The Hangover" . . .

2009-06-12T23:15:00.000-07:00

with your priest.

Just because a movie is wrong, doesn't mean it's not funny.

That's #8 on my top ten reasons for being an Episcopalian.

Letters from Federal Way--Part 1

2009-06-09T22:17:00.000-07:00

OK, so a former nunnery on Puget Sound is not exactly the breach . . .

But that's where this letter comes from. I'm here with Paul, Susan (another priest from the Diocese of Spokane), and a bunch of other Episco-folk to learn about congregational development. We're intending to learn how to help the congregations in the Diocese of Spokane (which includes Northern Idaho and all of Eastern Washington) become more vibrant and healthy.

I won't bore you with all the blah-blah details about congregational development. That's probably only interesting to organizational geeks like myself. But I will bore you with a little of what I've learned so far in our work together. This is hard work, especially someone who's good at faking extrovert, but really is an introvert. It's also a bit lonely being the headstrong deac-in-training in among a plethora of priests and a their lay associates, especially when the coursework tends to scrutinize the inward-tending functions of a congregation (how it cares for its members) more than its movement into the world. Next, add the intention that this is a program that not only imparts tons of information, but also involves a lot of group work and self-examination that stretches you--if you let it.

All that said, I'm particulary intrigued by a model that can be followed as a rule of life for individuals as well as congregations. Please pray for me as I spend this week asking for the Holy Spirit to rock my world through the rhythm and balance of the Benedictine life:

1) Find God in what is, right now.

2) Find God in listening in order to act.

3) Find God in the next new work of my life.

4) Lather. Rinse. Repeat.

Something in the water?

2009-05-19T08:27:00.000-07:00

So, Pig's last comment has me thinking about laughter. She writes: " . . . you look at pictures of those hats and think, oh my--stodgy, solemn, maybe even a little scary. You mean you are allowed to laugh in that Church??? snort."

To be fair, there is a certain stodge-factor in some places--which shall remain nameless. Certainly, there are those--like my dad--who have had bad experiences in those Episcopal churches who take themselves entirely too seriously. And while there are times of great reverence and poignancy at Trinity, we laugh a LOT.

Kids wander the aisles or sprawl on the floor. Sometimes our priest Paul's youngest boy, (Owen) will just run up and throw his arms around Paul's legs in the middle of it all. I've seen Paul preach with Owen on one hip. If we goof up the liturgy, we laugh and keep going.

This does have a fair amount to do with the context at Holy Trinity. I mean, when the congregation is salted with chemically-enhanced folks who assume every sermon is conversational, when at any moment a homeless guy might wander in through the sacristy and down past the high altar to join you in worship, when people strolling by with beer stuffed in their pockets are drawn in by the music . . . well, a natural flexibility develops.

But I'd like to think Trinity is not alone in our appreciation of humor. Once I was a lector at a service composed solely of the mucky-mucks of the diocese. I was reading that bit where the guy falls asleep and tumbles out the window because Paul (the apostle) won't shut up. Everyone about rolled on the floor laughing through the whole reading--all at Holy Trinity Paul's expense. Come to think of it, that service was at Holy Trinity when we hosted diocesan council. Hmm, maybe there's something in the water . . .

On Maundy Thursday, I was one of the foot-washers. Paul had just given a brief sermon on foot-washing, how it forces us to reveal our most vulnerable selves, a part of us we'd prefer to hide. Paul's son, Owen, had already had his feet washed by his father, but he came to my station and hopped up in the chair ready for round two. And as I washed his little feet, he laughed. Nonstop. And pretty soon I was laughing, and it spread like a ripple. I thought: This is IT! Stripped down to our most human, no hiding in shoes and socks, being vulnerable enough to be served, and LAUGHING!

Episcopalians (and other liturgical denominations) have this thing called an aspergillium. It picks up holy water from a bucket called the aspersory and allows the flinger to fling it. Here, Pope Benedict wields the aspergillium (a.k.a. "the stick of doom").

What has this to do with laughter? It started with a toddler who dissolved into a wave of uncontrollable giggles every time a drop of holy water hit her. Now, everytime we use the thing people start laughing. We can't help it. And when Paul passes the stick of doom around and we bless each other it nearly dissolves into joyous chaos--a holy water fight. And to me, that's golden. To remember our baptism and respond with pure delight--well, that's something.

9. How many Episcopalians DOES it take to change a light bulb?

2009-05-18T08:51:00.001-07:00

Three.

One to mix the drinks, one to call the electrician, and one to talk about how much better the old light bulb really was.

Which brings me to No. 9 in my "Top Ten Things I Love about the Episcopal Church":

Jokes.

On the whole, Episcopalians are pretty good at laughing at themselves. Granted, part of this is contextual. At Holy Trinity, our particular spiritual gifts seem to involve goofing off, popping off, and making fun. We love to banter, and we throw an excellent party. But the plethora of Episcopalian jokes suggests many of us are pretty good at using humor to undercut ourselves, deflate our self-importance, and remind ourselves to "keep the main thing the main thing." Can I get an amen?

And the icon? The caption for this photo on the St. George Melkite-Greek Catholic Church website reads: "The image of St. Symeon--perhaps the Church's first environmentalist--gazing upon an energy efficient light bulb." Look at his hands! I think he's blessing it! Rock on, Melkite-Greek Catholics! Good on ya!!

Introducing my top ten . . .

2009-05-13T21:09:00.000-07:00

Pig writes: "What I'm really curious about is why you have chosen the Episcopal Church. What do you love about it? Do they have a particular set of beliefs that ring true to you? What are the basic tenents of the Episcopal Church and what makes it different from other churches? Is it that you just like your particular Episcopal Church and its work, or is it the whole Episcopalian experience that works for you, because (and I really am not intending to be rude) with all its tradition, it just seems kind of an odd fit considering your wonderful but rather . . . ahem . . . irreverent sense of humor, and seemingly no nonsese type of personality."

Bethany writes: "Yes, all that she said! Tell us about the greenhouse of your faith."

First, a caveat: there's no way I'd presume to speak for all Episcopalians. What follows is based in my understanding and experience and certainly subject to factual error and theological weakmindedness. You'll notice I use the words "tendency" and "often" a great deal. That's because it's impossible to pin down any one idea to which all Episcopalians would agree.

Second, a bit of history and polity to frame the discussion: The Episcopal Church is the American child of the Church of England which broke from Rome around the same time as the Reformation. Neither Catholic, nor Protestant, the Episcopal Church is something in between. The Church of England has other "kids" spread far and wide around the globe. These churches are loosely affiliated through the Anglican Communion. (Thus, the Episcopal Church is an American expression of Anglicanism, and to some degree the words "Episcopal" and "Anglican" can be used interchangeably.) The Archibishop of Canterbury is the figurehead and spiritual leader for the Anglican Communion, but there is no central governing authority for the worldwide communion. That's part what gets us headlines; there's no consensus right now about how much authority the Communion should have over its member churches.

And now, here's the first installment of the top ten things I love about the Episcopal Church:

10. The Three-Legged Stool

Way back in the way back (around 1594), Richard Hooker an English theologian gave us a way of approaching our faith that we now call the three-legged stool. While some churches place their emphasis on a literal reading of Scripture, Episcopalians rely on a balance of Scripture, reason, and tradition. Alone, each of these three is vulnerable to distortion; together, they allow us to discern God's will.

We believe that God intends us to use reason when we approach Scripture. So, many Episcopalians tend to consider things like cultural context when interpretting scripture, and we often look for the overarching narrative to guide our lives rather than looking for a prescriptive do-and-don't list. The Anglican approach to Scripture tends to be wholistic rather than reductionistic--the whole is greater than the sum of its parts. Metaphor matters. So we tend not to pluck out particular verses as proofs. That's why I'll never win a Biblical argument with someone of an evangelical persuasion.
Tradition also has value; the wisdom of those who have come before us can shed light on our present journey with God.

Note the order: Scripture comes first, then reason, and tradition comes last. The order implies the relative weight each "leg" should bear, but if any one is missing, the stool falls down.

What does this mean to me? It means that I can approach the Word of God with curiosity and a reverent playfulness that is reminiscent of Judaic midrash. The Word is not something to be merely decoded and parsed, but a living narrative that can inform and vivify my life. The contradictions in Scripture no longer cause anxiety, or need to be explained away, but like disparate elements in a good poem create a "rub" that reveals even more richness. Similarly, tradition is not a shackle, but something lovely and rare to bump up against my contemporary experience and see what sparks fly. I absolutely love the complexity and constant discovery that this three-pronged approach creates. And when this unfolds in community, the Holy Spirit gets a chance to really shake things up.

Q & A

2009-05-07T22:00:00.000-07:00

While I ruminate on a couple of upcoming blog entries, here's your chance:

Ever wonder: What's with the incense? Why are Episcopalians always arguing (in public)? Why on earth would you Episcopalians call your leaders "primates"? Where can I get a cool hat like that one? How come are there so many drinking jokes about Episcopalians? Is Episcopal the same thing as Catholic? How many Episcopalians does it take to change a lightbulb?

Post your questions about the Episcopal Church, Episcopalians, and all things liturgical, and I'll do my best to provide or dig up (or make up) a plausible answer.

Overheard

2009-05-07T12:11:00.001-07:00

in the foyer of Holy Trinity's parish hall during HT Dinner Table:

Guest: So when are the AA meetings that happen here?

Volunteer: I think there's one tomorrow at 5 pm.

Guest: Oh, that'll never work for me. I'm always drunk by 5 pm.

(We think he was joking. And yes, the vintage beer ad is real.)

Five

2009-05-07T11:55:00.001-07:00

I think this falls under the diaconal call to "interpret to the church the needs, concerns, and hopes of the world." Click here to read about one deacon's witness on Ormonde Plater's blog.

Sometimes you're the tether, sometimes you're the ball . . .

2009-05-01T05:58:00.000-07:00

At all times, your life and teaching are to show Christ's people that in serving the helpless they are serving Christ himself.

On the surface, this part of the ordination vow seems like a no-brainer. The last part of Matthew 25 pretty much lays it out with the culling of the herd. No mincing of words there.

But lately I'm having some issues with the word "helpless." I could be wrong, but I don't recall this word placed in Jesus' mouth in the Gospels. "Least of these" is about as close as we get. Who are the helpless?

Well, word-nerd that I am, I looked it up. This from dictionary.com: "unable to help oneself; weak or dependent; deprived of strength or power; powerless; incapacitated." So who are helpless? Well, babies, of course--except that they can cry to signal what they want, so they aren't totally helpless. People with extreme dementia? People in a coma? Hmm. Maybe.

But the people Jesus talks about in Matthew 25 are not, by this definition, helpless. They are hungry, thirsty, in prison. But that doesn't mean they are helpless. And most of the people I serve in my diaconal ministry are far from helpless. Poverty encourages it's own kind of power. When our survival instinct meets threat, helplessness becomes relative. Prey becomes predator, abused becomes abuser. Salt the situation with some alcohol or drugs and you'll have a master manipulator before you can say "God bless." We all do what we must to get by.

Do I sound jaded? Already? I hope not. I've spent the last couple of days failing to heed the giant sucking sound of a domestic-violence-alcohol clusterf*&k with some folks I pastor. How is it after three days of witnessing their chaos, I find myself engaging the drama? (Yeah, I know, the "three days" part should have been my first clue.)

I think this has something to do with an unhelpful stance implied in the words "serve the helpless" which implies an us (well-equipped saviors) and a them (incapacitated victims). We become fix-it junkies with those in need as our projects, and before you know it the Holy Spirit wanders off looking for something more interesting to do. In reality, even those who are a total disaster have more volition than we see in them. One of the worst things we can do is presume helplessness, assume the role of helper, and attempt to strip away any remaining agency they have. Or just as bad, we presume helplessness and suddenly discover they've have a surprising wherewithal to transform us from helper to enabler (which is a polite way to say "self-destruction facilitator").

Remember tetherball. Set aside, for a moment, those dark memories of getting beaned upside the head with the tetherball by that kid who couldn't keep his hands out of the classroom fish tank. The thing with a tetherball is that it's . . . well . . . tethered. No matter which way you hit it, it's going to wrap itself around that pole. By the laws of physics, it's helpless not to. That's what I'm finding in my diaconal work. Everybody has their pole--addiction, violence, overwork, codependence, compulsive whatever--and no matter which way life slaps you, you're bound to wrap yourself around that pole. Poles can also be less "in-your-face" but still destructive like one of my personal favorites: "Everyone must like me." But everytime the tetherball hits the end of its rope, there's that same damned pole again.

So . . . SURPRISE! Joke's on us: we're all helpless! Remember? It's a broken world. And we're included. We are all tethered to sin--or in the less loaded terms of a pastoral care text, to our "limitations" as well as "gifts."

A deacon helps no one by futhering the illusion of helper and helpless. In fact, she can pretty well muck it up even further if she fails to show "in [her] life and teaching" an understanding of her own helplessness and an awareness that service does not mean fixing. And because it's so ingrained to defend the mask of benevolent servant, so deeply tempting to make those we serve into projects, this could well be the deacon's most telling challenge.

Diaconal To-Do List - Week of April 20

2009-04-26T08:00:00.000-07:00

. . . and you are to carry out other duties assigned to you from time to time.

monday
come thou fount of every blessing, tune my heart to sing thy grace
9am - county courthouse - provide "no-contact" pastoral care silently & across courtroom
6pm - pick up N from geiger correctional
streams of mercy never ceasing call for songs of loudest praise

tuesday
teach me some melodious sonnet, sung by flaming tongues above
8am - self-examination - sin of pride
praise the mount! oh, fix me on it, mount of God's unchanging love

wednesday
here I find my greatest treasure; hither by thy help I've come
4:30 pm - arrive at parish hall - welcome volunteers
5:30pm - welcome 75 for dinner
5:45pm - respond to grief - murder victim's aunt
7pm - bus tables, bag dirty tableclothes, tuck notebook with guests' prayer list in bag
9:30pm - wash tablecloths
and I hope, by thy good pleasure, safely to arrive at home

thursday
Jesus sought me when a stranger wandering from the fold of God
7am - pull what's left of prayer list notebook from washing machine
9:45am - pastoral care - am I doing it right?
10:15am - self-examination - living for others' approval vs. living for God?
12:00noon - don't forget you have a day job
he, to rescue me from danger, interposed his precious blood

friday
oh, to grace how great a debtor daily I'm constrained to be
9:00am - god-talk with spiritual friend
7:00pm - ministry weekend - topic: processing the process (of preparation for ordination)
let thy goodness, like a fetter, bind my wandering heart to thee

saturday
prone to wander, lord I feel it, prone to leave the God I love
8:15am - overwhelming gratitude for my call
8:30am - ministry weekend - topic: pastoral care
8:00pm - bake Jesus-bread for communion
here's my heart, oh, take and seal it, seal it for thy courts above

sunday
come thou fount of every blessing, tune my heart to sing thy grace
9:00am - unlock parish hall - remind church lady of community norms: "failure to use at least 8 scoops of coffee may affect your worship experience"
9:01am- receive lecture about Great Depression
9:15am - prepare sanctuary
9:59am - prepare self
10:00am - welcome (congregation) guide (acolytes) hear (Word) chant (psalm) bid (prayers) receive (elements) prepare (table) turn (pages) receive (communion) offer (chalice) praise (God)
5:00pm - study scripture
streams of mercy never ceasing, call for songs of loudest praise . . .

Vanity Check

2009-04-26T07:37:00.000-07:00

Does this alb make me look fat?

And of course, that's beside the point. I keep thinking I'll finally get over myself, that my first thought won't go to trivialities. But that's the work of it, I guess: saying yes to God over and over--which necessitates a no to self.

Here I am, clearing the altar . . .

Thanks, Sally, for the pic.

Beyond the Chancel

2009-04-23T19:15:00.000-07:00

You are to assist the bishop and priests in public worship and in the ministration of God's Word and Sacraments . . .

On different occasions, two people on the Commission on Ministry (COM) asked me the same question in an attempt to help me discern whether I might be called to the priesthood or the diaconate:

"When you are serving at the altar, do you have the urge to shove the priest out of the way and take over?"

Strange as it may seem, this is the most helpful question I've been asked during my discernment. It seems a small thing, really--almost an aside. Do you have the impulse to consecrate the bread and wine? It takes a whopping ten minutes per service--hardly dominating the priest's schedule. And yet, it's one of the main things. This question cuts through the confusion around orders of ministry--the muddiness generated by our tendency to define the orders by task and role, not what I call "heart stance." What the question really asks is: on the sacramental level, are you a priest?

Some folks have suggested my answer should be "Yes." I tend to be a take-charge kinda girl. I'm comfortable leading worship, preaching, praying, and doing all the other stuff that wraps around the Eucharist. I'm a passable thurifer (incense swinger). Once, in a pinch, I even chanted the psalm--by myself, in front of everybody--and I didn't die and the congregation didn't run screaming from the pews. But when I'm at that table, I don't want to be the one to invoke God's blessing. I can't tell you why.

I want to be the quiet servant--the one who is always in the right place at the right time, who moves along with the priest anticipating her needs, always ready to hold a book, turn a page, lift a chalice. I want to be the one who smooths the liturgy so that it seems effortless, the one who mutes distractions so that the focus is on God.

I prepare the way for the priest, setting the table, pouring wine. And, a proper servant, I clean up afterwards, restoring chalice and paten to their places, covering the consecrated host. And in between, there's the moment where I enact the deacon's call. Receiving the chalice from the priest, I carry it beyond the chancel to the people, each step a sign of the breach I'm called to cross each day.

The Church Whisperer

2009-04-17T07:54:00.000-07:00

You are to interpret to the church the needs, concerns, and hopes of the world.

The prophetic voice: a central part of the deacon's call. We're the breach-standers--a foot in the church, a foot in the world, translating between the two. When I first began my discernment two years ago, I thought, Prophetic voice? I'm your girl. Rattle the cage? You betcha. Unfortunately, this is not a call to be a troublemaker. So I began to pray that I could be a voice for the world in a helpful way.

It's a tribute to my inflated sense of self that at first I thought this meant church with a capital C--Church, the institution. As a deacon, I'd shift the system, rage against the machine. While Jesus was a kayak, light and maneuverable through the complexities of the world, the Church is more often like cruise ship. Railing against the Church, I'd be heading straight for the spiritual breakdown lane. Thankfully, God seems to enjoy messing with my delusions. He gave me a chance to reframe this aspect of the diaconal call, and His approach was surprisingly and unusually gentle.

During the recovery from my surgery, I missed two nights of HT's Dinner Table ministry. For those of you who don't know about Dinner Table, it's a weekly free meal for our neighbors--not a soup kitchen, but a sit-down family style meal complete with tablecloths, real dishes, and food you'd serve to guests in your own home. You can read more about it here. I've been heavily involved in the founding of the ministry, but lately I've been stepping back. The deacon is called to be a catalyst for new ministry, then turn it over, and move on to the next need God presents to us. These were the very first Dinner Table nights I missed, so the surgery was an invitation to step back and see what would happen without me.

Like the Federation in Star Trek, Dinner Table has a prime directive: We treat our guests as we would welcome our friends into our own homes. A simple standard in a complex context. We serve a motley mix of homeless men and women, single moms with their kids, struggling families, and lonely elders. Some of our guests arrive drunk, disorderly, unwashed, unwell, and unhinged. From this, we try to weave community. All the while, we are welcoming new volunteers, many of whom have never served anyone different from themselves.

My fellow ministers rose to the occasion. It's always humbling--and liberating--to realize how easily things go on without you. At the same time, as I began to surface from the pain medication, complaints appeared in my inbox. Nothing big. Just here and there, reports of volunteers who had been rude to our guests.

At our next Dinner Table leadership meeting we talked about the primary pitfall of ministry: our expectations. Too often, we serve with expectations that those served will respond in a particular way--the way we would respond. We enter a world marked with the fallout of addiction, poverty, and abuse, and we expect it to conform to our reality. Most dangerous of all, we expect those we serve to become like us. When our expectations are denied, we judge, reject, or punish. We talked about what it looks like for a church determined to move into the world, hell-bent, if you will, on sowing the seeds of the kingdom in some very rocky soil.

It takes a certain fortitude. When we serve as Christ did, we risk true intimacy. We will love them. We will lose some of them. We must trust our own strength in the face of disappointment, and strip ourselves of our defense mechanisms--the guise of charity, our insistence on assimilation. And so the deacon not only invites, encourages, exhorts others to respond to the world's needs. She also accompanies those who would serve, calming fear and deflating expectation. Her voice is a mere whisper as she travels in a broken world.

do-be-do-be-doooooo

2009-03-31T07:20:00.000-07:00

Lenten discipline: wrestling with the sin of productivity.

It goes like this:

build an entire identity and sense of self-worth based on what you can produce/accomplish;
arrange to have a major organ shredded and sucked out through a straw;
watch the fun as you try to figure out what "be-ing" looks like.

Call it the Blue Collar Curse, or imagine something deeper, hard-wired. Either way, it's hereditary. My parents were both do-ers. My brothers, too, gauge success and worth each by their own kind of productivity. It's projects for one, financial security for the other--the outcomes look totally different, but the compulsion is the same.

So I do too much. Then hurt for days. Then do it all over again. Even stranded on the couch "resting" and too tired to think, I've crocheted and cross-stitched more in three weeks than I have in the last ten years. Idle hands are the devil's workshop, my grandma used to say.

Did you know you can watch dust accumulate, day to day? Dishes pile up. Cat hair gathers like weather. A month ago, I was too busy to care very much. Now housework is the axis on which my world tilts and spins.

The recliner is both paradise and storm-swept island, rain forest and sagey desert.

Sometimes, I have no choice; I let the phone ring.

Being feels ethereal. At least Doing casts a shadow, implying substance. And it's that craving--to have substance--that has something to do with what happened in the Garden.

And yet, Jesus was both actor and experiencer. The gospel writers cite his acts--healings, signs, wonders--as proof of divinity. But Jesus said, "Tell no one . . ." The do-ing arose naturally from his be-ing. And vice versa. And oh, the God-shaped shadow!

Top ten things I learned from my hysterectomy . . .

2009-03-18T12:28:00.000-07:00

10. Vicodin is proof of a loving God.

9. Warm prune juice works eventually--and comprehensively.

8. Your friend will tell you that coconut (in macaroon form) works too--after the prune juice has kicked in.

7. Nothing in one's closet adequately camoflauges swelly belly.

6. When the only way you get a "vacation" is by having a major organ shredded and sucked out through a straw . . . maybe your life is out of balance.

5. Women have a higher pain tolerance than men, but men have a higher dirt tolerance; it's genetic.

4. When you have a ten-pound lifting restriction, you discover everything in your house weighs ten pounds.

3. Cats make better post-surgery companions than dogs.

2. A visit from a friend brings the best kind of healing.

1. Laugh--even when it hurts.

25 Things I Promise Never to Crochet

2009-03-17T20:42:00.000-07:00

For fear that this newfound interest in crochet may be a symptom of perimenopause, I hereby give my friends permission to perform an intervention should they ever find a poodle toilet paper cozy in my bathroom. I depending on all of you to tell me the truth if my house ever begins to look like a church bazaar exploded.

As further insurance and in the spirit of Facebook, instead of 25 random things about me, I offer you 25 things I promise never to crochet . . .

I *heart* my broom

Really?

Or you could name your kid BeatMeUpAndStealMyLunchMoney . . .

Unable to afford a thyroid test,

Agnes tried to disguise her thinning hair.

Turkey Hat: Because everyone wants a turkey on her head . . .

They seemed so cute

until they elected a leader . . .

Without the navel ring,

I'm not sure this would work.

Kitty says: Me will wait until she's asleep,

then lay on her face until twitching stops.

Who doesn't love a mushroom in a jar?

The perfect outfit for meeting his parents:

Coke & Red Bull:

Because beer can hats are just tacky.

Granny Squares:

There's a time and a place . . .

. . . this is not it.

I know granny squares remind you of your Grandma--I get it. But it's just not right!

The Look-At-Me Dress:

When Bad Attention Is Better Than No Attention.

Funky is as funky does.

She'll need therapy anyway.

Might as well make sure she gets her money's worth.

Coulrophobia (fear of clowns): irrational fear or self-preservation?

Because snuggling with a real dead fox just isn't weird enough . . .

Presenting: A Clusterf*&$ of Cozies

Tampon Cozies: uterus with ovaries (left) & banana (right).

Gun Cozy

Motorcycle Cozy?

Infidelity Prevention System:

Wrong on so many levels . . .

Because after the last sweater you made him,

the dog finally ran away.

swelly belly & sleeping ovaries . . . who knew?

2009-03-17T16:37:00.000-07:00

I'll be taking a hiatus from contemplating the diaconal ordination liturgy while I'm recovering from surgery. As some of you already know, I had a laparscopic supracervical hysterectomy last week. So I thought I'd offer an update.

It wasn't an easy decision. I was coping with my symptoms, but with ten years to go until menopause, the prospects for making it to my fifties without the bleeding becoming intolerable were slim. I could wait, but I'd still need major surgery to have my tubes tied so I could go off birth control pills. And if the fibroid tumors continued to grow, I might lose the option of a laproscopic procedure. Taking out just the fibroid would actually be riskier than a full hysterectomy and there was not guarantee that others wouldn't quickly take it's place. So . . .

I checked in at 6 a.m. last Wednesday, was home by noon with a lovely pain-killer cocktail on board. In the weeks leading up to the surgery I'd been teary and cranky a good part of the time--mostly from worry, I think, about whether I'd made the wrong decision--but as soon as the surgery was done I was calm, peaceful, relieved. No more bleeding, worry-free sex (well, the promise of it), and the freedom to ditch the birth control pills I've fretted about for the last five years since my mother died of breast cancer--done and done.

I'm not recovered, of course. I have "swelly belly." The four tiny incisions scattered on my torso don't reflect the healing that needs to happen inside, so I look pregnant--especially when I've been up and around too long. And after a several nights of waking up drenched in sweat, I did a little research on the internet and learned about "sleeping ovaries." Although mine were left alone, the disruption of the surgery can put them into a kind of shock. They should "wake up" and start pumping out hormones in a few weeks or so. It's also possible that going off of bc pills after 15 years has something to do with this. The pills could have been masking some perimenopausal symptoms, and it's going to take a month or so for my normal hormonal rhythm to reassert itself. Luckily, the only emotional expression of this hormonal hula has been a brief moment of rage when hot grease popped and burned me while I was fixing dinner last night--exacerbated by the fact that I really shouldn't have been up fixing dinner, no doubt.

But here's the kicker. I really expected to feel miserable after this surgery--what with losing my girly parts and all. Before the surgery, I speculated to a friend that this would be a Lenten experience full of digging around on the dark side, threshing out issues of identity, femininity, and OMG I'm OLD! Instead, I feel liberated. Probably some of that pre-operative weepiness helped me process any sense of loss connected with this. And now, the positive effects of being forced to slow down and rest are having an interesting effect.

It started before the surgery, actually, this urge to do creative things. For many months, I've been in a receptive mode, mostly intellectual--learning my new job at the college and doing formation for the diaconate. Normally a voracious reader and learner, I realize now that so much learning has been overwhelming me. Too much information, not enough time to digest it. That's the input side. On the output side, most of my activities have involved pushing paper (at the college), doing missional activities (Holy Trinity), and engaging in intense relational work (Holy Trinity). None of these "outputs"--as Spirit-filled as some of them are--create a tangible finished product . . . which may explain why being forced into days in the recliner--deprived of my usual routine, social contacts, and busyness--I'm giving in to strange cravings:

I dropped an impossibly boring online class in the Old Testament in favor of a couple of trashy novels--mind-candy thrillers that have no redeeming intellectual or spiritual value.

I'm dreaming about my own garden, not the church's.

I'm rediscovering "worthless" activities: an old cross-stitch project, skimming magazines, crochet. (Because I'm slightly concerned that my renewed interest in crochet may, in fact, be an unmasked symptom of perimenopause, I'll be writing another blog entry--Things I Promise Never to Crochet--as a sort of insurance policy against the possibility of becoming a bonafide church lady.)

I want to make things--with my own two hands.

Perhaps a psychotherapist would interpret this as a combination of regression (avoiding responsiblity in favor of fun) and womb-grief (needing to create things since I can no longer create a person). And maybe they'd be right. But it feels more like someone hit the reset button. And the new message goes something like: Slow down. Relax. Enjoy.

Redeeming Evangelism

2009-03-01T19:14:00.000-08:00

You are to make Christ and his redemptive love known, by your word and example, to those among whom you live, and work, and worship.

For my non-Episcopal friends: this quote from the examination of diaconal candidates is as close as most Episcopalians come to uttering the e-word, evangelism. If you'll pardon the pun, the idea of evangelism scares the hell out of us. Which, of course, is exactly the goal of those who love us with signs like this one:

I'm organizing a coup to take back the word evangelism from those (mostly old-school) folks who perform it with equal doses of carrot and stick. "Jesus loves you, but if you don't love Him back . . ." What? He's going to make sure I never love anyone else? Candy-coated threats make Jesus sound like a stalker.

Equally troubling, on the other end of the seesaw: magic Jesus. "If you accept Jesus into your heart, you'll spend the rest of your life riding horses on the beach in soft focus." Once a young drug addict came into our church drawn there by the early morning organ music--like a line from the song Sunday Morning Coming Down. I prayed with her, sat with her in the front pew through as much of the service as she could handle before her withdrawal got too bad. She'd been out of jail for 24 hours and had already gotten high again. "I don't understand!" she despaired. "When I was in jail, I prayed the sinner's prayer like they told me. Everything was supposed to be different." Pure cruelty, if you ask me.

So how do we show someone redemptive without forgetting about the love part? What would that look like? Redeem comes from the Latin redimere--to buy. And most of the definitions of the word convey the sense of re-purchasing: buying back something that was once owned. I think this has something to do with the restoration of relationship--with people, with God. But human relationship is too often cemented by fear. We've all known people who don't have friends; they take hostages. And relationship through threat is the primary tool of the abusive spouse. God's version of relationship is different--cemented by the love of the Creator for the created. It's that relationship that we're trying to get back to.

I like how Huston Smith puts it in his book Why Religion Matters: "All human beings have a God-shaped vacuum built into their hearts. Since nature abhors a vacuum, people keep trying to fill the one inside them. Searching for an image of the divine that will fit, they paw over various options as if they were pieces in a jigsaw puzzle, matching them successively to the gaping hole at the puzzle's center."

As an evangelist, what shape of God am I'm offering, what kind of puzzle piece do I proclaim in word and (more) in deed: loving? vengeful? manipulative? compassionate? simplistic? partisan? judgmental? forgiving? . . .

Please, God, let me live into a shape that's You.

ashes, ashes

2009-02-25T20:21:00.000-08:00

I hit the wall about three hours ago: holy exhaustion.

Yesterday was Fat Tuesday: four hours at my paying job followed by a long day cooking our church Mardi Gras meal then partying with the motley crew that calls Holy Trinity home. There we were together--the homeless and the sheltered, the unemployed and the overworked, the hungry and the overfed--trading beads, eating gumbo, answering seasonal trivia questions (what's the only time of year Baptists have more fun than Episcopalians?) and dancing to zydeco. One young man, working out his life on the edges of survival, walked the ten cold blocks to his apartment and back just to invite his downstairs neighbor. On his way he told a woman coming in: In there is a little bit of paradise.

Today, I stood with a Lutheran pastor, offering ashes to bewildered bystanders in the STA Plaza--a part of our public "ashing" which began with a liturgy of repentance in front of Riverpark Square. Not too many takers in the bus plaza. Our fellow ashers had better luck in the skywalks and outside the mall. Life is scary for a lot of folks who frequent the bus plaza--two women (one in a collar) with sooty crosses on their foreheads are just another uncertainty best avoided.

Tonight, at Holy Trinity, we served our weekly meal to our neighbors: an oddball mix of homeless folks, single moms, street-roving kids, and elders. Too often our guests are lonely, hurting, broken-hearted. Before dinner, we did a brief liturgy of ashes with an explanation of the Ash Wednesday tradition, then offered our guests a smudged cross on forehead or hand. Paul, our priest, spoke of sin as broken relationship. Ashes, he said, are first a recognition that we are not God. And they remind us that we are all made of the same dust by the same merciful One. Lent is a time to connect with God, to repent and restore our broken relationships with God and with people. These marks, he said, are a sign to each other that says we are in this together. Together we sang: Create in me a clean heart, O God, and renew a right spirit within me.

The thumb makes the mark--two strokes of Christ's suffering. The voice speaks these hard words: Remember that you are dust, and to dust you shall return. Some received their mark with their eyes closed, some with eyes upcast beyond me. Some met my eyes intently with a look that I can only describe as recognition. And then we gathered at table, a memory of those agape feasts of the early church, a meal where all were fed. And on the face of the other, the cross--a common mark reminding us not just of sin and redemption, but that we are the "other."

So yes, I'm exhausted. Because how can I fathom my own sinfulness? I turn toward God and even in the turning find myself facing away again. What should be Love is too often love. What should be for the Other convolutes into Self. How can I embrace the solidarity required of this faith: we are all--God and people--in this together? But what really wears me out with a beautiful, blessed kind of exhaustion is how--in spite of us, in spite of me--Love washes over it, over us all.

Pucker up, baby!

2009-02-18T12:14:00.000-08:00

As a deacon in the Church, you are to study the Holy Scriptures, to seek nourishment form them, and to model your life upon them.

I spent Monday and a good chunk of Tuesday in an anti-racism training that is mandatory nationwide for leaders in the Episcopal Church. Great intention, but in my opinion the training had a lot of problems from the logistical (cold room, weak coffee, hard seats) to the conceptual (rule #1: know your audience). In addition to being hopelessly lodged in "boomer-think"--(I just made that up. It means to think like a baby boomer ignoring the experiences of Generations X and Y)--the training was strangely un-theological. We prayed, we did a brief Bible study, and we had communion, but most of the time was spent with socio-historical materials that many of us had encountered (over and over) in high school and/or college. I came away feeling like I'd just experienced a secular training with liturgical window dressing. Nice aquarium, poet Li-Young Lee would say, but where are the fish?

At one point, I commented to my small group--perhaps with a bit too much sarcasm--that if we really want to talk about racism and the church we might want to start with the genocides in the Old Testament. I meant this very seriously: how do Christians get honest about our role in racism if we don't acknowledge the conflicting messages in our own faith about how we treat the "other"? Do we slaughter them? Or do we listen to Deuteronomy 24:18: "Do not deprive the alien . . ." remembering "that you were slaves in Egypt and the Lord your God redeemed you from there." Is Paul talking out of both sides of his mouth when he tells slaves to obey their masters then abolishes all distinctions between man and woman, slave and free?

I raise these questions not with any hopes of answering them, but to point out that they need to be asked. The examination for ordination to the diaconate includes the words quoted above "to seek nourishment" from the Scriptures. There is a lot in the Bible that we'd like to avoid. Frankly, it's distasteful. But if we really want to be nourished as Christians and as the Body of Christ, we can't afford to be picky eaters.

Even as a tiny baby, my son had a taste for the sour and bitter. In restraunts he would eat the lemons from our tea, screwing up is little face as if he was about to implode. But he kept right on eating them. I proposing something a little less radical. We don't have to like everything we eat in Scripture. We don't even have to accept it at face value. (Seriously, do we really want those who strike their parents to be put to death?!) But we have to acknowledge the darker moments of our faith story and ways our faith has gone horribly wrong for others.

During an online class in Old Testament, one student tried to make sense of the violence in the Old Testament by arguing that we have a better understanding of God now (all puppy dogs and sunshine, apparently) than "they" did back then. To me, it's more like photography--same reality, different angles. We have to be willing to wrestle with conflicting images of God and Christ. Islam has a list of 99 names for God which is recited in a prayer ritual similar to our rosary. God the Destroyer sidles up next to God the Comforter--and folks, however you feel about Islam, there is nothing "unbiblical" there. God's is not a flat, simple character, as soothing as that might be. We don't get Jesus the good shepherd without Jesus the temple trasher. (A golden retriever? Are you kidding me?)

When is the Kingdom of God coming? When we get real about all the ways we have, and will continue to, screw it up--avoiding cognitive dissonance by picking and choosing from Scripture like it's an all-you-can-eat buffet, ignoring the cultural and historical contexts of Scripture, or failing to leave our own agenda at the door using God's word to justify the institutionalized oppression (blacks) or attempted anihilation (Natives) of God's own creation.

My close friends know that I'm no literalist when it comes to Scripture, but I do believe that Scripture is sacred, and that even contradictions in Scripture help us wonder about God. I think God wants us to wrestle with these things and to take some responsibility for what happens when we fail to engage. And so I invite you to a no-thank-you helping of Deuteronomy, just one little bite of Genesis 34. There, now, that wasn't so bad.

When it comes to dismantling the systemic injustices of this broken world, of course we can learn from historians and sociologists. But if we really want to be God's instruments of change, we'll favor His wisdom over ours. We'll gather, we'll pray, we'll listen for the Spirit. And we'll feast on Scripture until it's running down our chins.

More Anglican Humor

2009-02-17T20:07:00.000-08:00

Stalling for time while I incubate my next real entry. Also, promised never to blog when angry.

So here's a joke instead:

Jesus said to the Episcopalians, "Who do you say that I am?"

They replied, "You are the eschatological manifestation of the ground of our being, the kerygma of which we find the ultimate meaning in our interpersonal relationships."

And Jesus said, "What?"

Anglican Humor

2009-02-14T12:20:00.000-08:00

Marginalia

2009-02-13T07:55:00.000-08:00

In the name of Jesus Christ, you are to serve all people, particularly the poor, the weak, the sick, and the lonely.

I broke my own rule today. I gave forty bucks knowing that at least some of it will probably go for booze and cigarettes for Shawn and his wife. Most of it will go for food. They are crashed in the apartment of a pot smoker who eats all their groceries in the night, but it’s that or a panel van under the bridge. Not much of a choice with nighttime lows heading for the teens. Meanwhile, they wait for the outcome of the low-income housing lottery.

Yes, we live in a country, state, and city where having a roof over one’s head is a game of chance.

I’ve always been partial to the margins—those spaces that frame the story, a whiteness that begs to be marked with argument and response or, as in ancient Bibles, the extravagance of precious pigments, silver and gold leaf. Illuminated texts, they are called: shot through with color and light.

And now I find myself in a new kind of margin, skirting the edges of the crowd. Where I’m traveling, the drunk on the sacristy steps interrogates this story titled “America in the 21st Century” or maybe just “Humanity.” Two young boys running the streets after dark duck into the bright light of the parish hall, all tough and bluster, for their only meal of the day. These margins are filled with question marks, broken windows, expired tokens. But also written here are love and mercy and worship. Everywhere: the fingerprints of God.

Alongside the story of the deaf homeless woman—her baby due in February—a jotted memory: the liquid green of light through leaves, lush hum of wings from the dogwood tree. There is nothing so merciful as a swarm of bees. Throbbing with life, singular of mind, they endure the cold. All winter, the innermost bees migrate outward toward the cold, making room for those on the edges to migrate in. It’s a perpetual dance, an unwritten contract, a blurring of margins that defies even January.

Never give cash. Except when the need is real and deep. And who’s to say what’s real, how deep the wound , how burdened the flesh.

Two crisp twenties. A brown paper bag of sanitary napkins—“womanly things”—his wife needs.

“Meet me here tomorrow, 12:30. You can store your food in the church refrigerator until your housing gets sorted out.” I waved goodbye from the doorway.

Hunched against late winter, he kept to the broken sidewalk that borders the city street.

Servanthood

2009-02-11T08:14:00.000-08:00

My sister, every Christian is called to follow Jesus Christ, serving God the Father, through the power of the Holy Spirit. God now calls you to a special ministry of servanthood directly under your bishop. --Book of Common Prayer (BCP), 543.

When I was a teenager, it was my job to cook dinner for my family once a week. My mom said that she was preparing me to be an adult. Of course, it also gave her a night off. One night, with a friend from school alongside me, I was making a salad for part of the meal. That meant I had to also slice tomatoes and put a slab of lettuce on a separate little plate for my father. He didn't like salad. I was in a generally peevish mood that night--probably because I had a friend over and still had to cook the weekly dinner, and probably because I was, well, a teenager. With my friend as the perfect, attentive audience, I went off on a rant about how silly it was to make something different for my dad--it was still lettuce and tomato after all--and when I got married, I was never going to cowtow to my husband's every demand. A while later, my mother came into the kitchen and said simply, "Your father has overheard every word you said." Then she added: "I make a separate plate for your father because I love him."

Ouch.

Mom always had a way of getting directly to the point.

Unlike a priest--who is called to be pastor, priest and teacher--a deacon is called to be a servant. And in the upside down world of the Gospels, this is exactly what Christ recommends. You want to be great? He asks. (Here I imagine him thoroughly exasperated with his disciples' never-ending pissing contest to be His number one.) He gathers the disciples around him and says: "You know that among the Gentiles those whom they recognize as their rulers lord it over them, and their great ones are tyrants over them. But it is not so among you; but whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all. For the Son of Man came not to be served but to serve, and to give his life a ransom for many." (Mark 10:42b-45, NRSV).

But once we reach the epilogue--the Acts of the Apostles--the tone seems to change a bit. Irritated by squabbling between the Hellenists and the Hebrews over the distribution of food among the widows, the apostles proclaim: "It is not right that we should neglect the word of God in order to wait on tables" (Acts 6:2b). So they chose seven men "of good standing, full of the Spirit and of wisdom" to handle the details of caring for the marginalized. The apostles prayed and laid hands on these men--a precursor to our ordination liturgy.

These references to service in Mark and Acts both relate the word diakonia--service. Christ uses the same word (in verb form) to characterize himself, both in the passage from Mark and in Luke 22:27: ". . . I am among you as one who serves." And it's from diakonia that we get the term "deacon."

So just what does this service look like? For a long time, the servant role had negative connotations, especially for women who were trying to break free of gender expectations. Then, in the 1970s, the idea of "servant leadership" developed into a contemporary catchphrase--so much so that it is bandied about without much thought of its Christian origins. At its best servant leadership has the potential to do what Christ did when He washed His disciples feet: upset an entire worldview concerning leaders and the led. At its worst, servant leadership provides a kind of "good guy/gal" screen for leaders still operating under the old rules. Something like: "If I make it look like I'm doing this for your benefit, if I act like I give a damn about you, I can get away with some really oppressive leadership decisions."

Or maybe that's my cynical side talking. But I think we do well to remember that we are all prone to entanglement in the corruption of a broken world. So how can we reclaim the term "servant" from popular culture? How do we know when we are truly serving as Christ served, not merely playing a role? I would suggest there are three key signs of true servanthood.

1) The servanthood of the deacon has less to do with doing the roles typically identified as diaconal (such as charity, pastoral care, and social justice work) and more to do with a certain stance of the heart. All of the "doings" of deacons can be accomplished without a servant's heart--admittedly with varying degrees of success. And activites normally associated with the other orders--congregational leadership, preaching, teaching, administration, and so on--can be performed from a place of servanthood. This has something to do with love--as my mother's love for my father made her willing to spend an extra few minutes to provide for his particular desires--and it also involves emptying the heart of self-service and attachments, and actively rejecting the human lean toward heirarchy and disparities of power. Servanthood isn't about doing; it's about being.

2) The servanthood of the deacon may be evidenced in service to others--especially the ones on the margins--but the deacon is ultimately serving God. Charity is not servanthood. Labor is not servanthood. Fighting injustice is not servanthood. Servanthood happens when the deacon is oriented toward her true north. The deacon listens in the world for what wrecks God's heart, and seeks to bring healing and reconciliation in service to Him.

3) Just as Jesus washing the feet of His disciples caused some serious consternation, the true servanthood of the diaconate should--and will--upset the familiar order. If a deacon isn't causing at least a little scandal, a little anxiety in her community, she's probably not leaning into her servanthood quite hard enough. Diaconal servanthood requires the recognition of imbalanced relationship and seeks to restore balance--often by defying expectations.

The servant ministry of the deacon is to be a sign for others of "Jesus as servant"--that particular expression of God-among-us.

An Ordered Life

2009-02-08T15:38:00.000-08:00

In the weeks after my mom died, I bought my first mop. Understand, I'd been cleaning my floors all along. But my mother believed that a floor was not well and truly mopped unless one performed the chore on her hands and knees. Mom's rule--but I'd made it so completely mine that it never really occurred to me that there was any other way. At least, not until two weeks or so after her death. In the midst of a flurry of compulsive cleaning--a most physical manifestation of grief--it occurred to me: I could buy a mop.

And yes, I can see the thin line of not-quite-clean against the baseboards. Every so often during a so-called "spring cleaning"--which doesn't happen every spring--I deal with those edges. But mostly I've replaced Mom's rule with my dad's: "If you can't see it from the highway . . ."

I remembered this kitchen floor epiphany yesterday while wielding a sponge mop over linoleum that hadn't seen said mop in a very long time. (Let's just say, Mom would have been horrified.) I thought about how easily and unconsciously we adopt the rules set forth by those we love.

Except when it comes to God. God's rules--love God, love others--are fewer and far simpler than my mother's "purity laws" yet so much more challenging. And maybe this is why religious orders spell it all out in a "rule of life" their members must follow--a detailed explication of what those two simple rules actually look like when lived out.

For my friends who wonder what a rule of life looks like, check out a bit of Benedict's rule. The length and scope of The Rule of Benedict suggest he was something of a micromanager. But he's not alone. The Order of Julian of Norwich features a rule of life, or customary, that spans 50+ pages. So much for simple. In many communities, those entering the order are ceremoniously presented with a copy of the order's Rule which now trumps any rules they've made for themselves.

The word order and the word ordained come from the same Latin root which relates to "arranging" or "putting in order." Some people think ordination implies specialness and heirarchy--and there is some hint of that in the word root which also has to do with "ranking." But more accurately, ordination marks one's entry into an Order of ministry. (In the Episcopal Church ordained ministers include bishops, priests, or deacons; all baptized lay persons are also considered ministers responsible for living out the baptismal covenant.) An ordained person is said to have entered an "ordered life."

Over the next few blog entries, I'll reflect on some of the rules of the diaconate--as revealed in the diaconal ordination vows--and I'll speculate on how they might "order" a life.

As for the kitchen floor, I'm rather favoring the robot.

What do you ask?

2009-02-06T19:57:00.000-08:00

On November 8, 2008, I became a postulant for the diaconate in the Episcopal Church, a next step toward ordination as a deacon. After almost 18 months of personal and corporate discernment, it was a quiet transformation marked only by the silent appearance in my inbox of a letter from the Bishop. Quite a contrast to the postulancy ceremonies still observed in some religious communities where the aspirant knocks three times on the door of the convent. The superior answers the door saying, "What do you ask?" The aspirant answers, "The mercy of God and of the order" and is welcomed over the threshold. Over the next months or years, she'll test her vocation in the context of community. Does she truly "belong"?

What do you ask? The word "postulant" is from the Latin "postulare"--to ask or demand. The same Latin root gives us the verb "postulate" which means "to make claim for" and "to assume or assert the truth." This suggests not a timid request, but a confident declaration of what I believe to be true of myself and my call. At the same time, postulancy is a time of discernment. It is, as the Benedictine's advise, a time for me and my community to listen with the ear of the heart. No wonder we ask for mercy.