living on both ends - an exploration of best and worst

fragrances of love

The world is a rose; smell it and pass it to your friends. 
Persian Proverb

 

My climbing roses, I am training on a pillar - the full one is Sombreil, the other Kathleen. 

Tonight, the 15 year old bummed out on our evening of cooking to go to a friends, we made a deal that he would get up early and work on the pies before the neighborhood football game. I've been working on school applications for him, for next year, Friends schools for Philadelphia, thinking about who he is, and who he is becoming. His strengths and weakness, his struggles and joys. L says three words that describe him are grounded, delightful, and able, my three words for him are curious, creative and kind.

As I drove him, he asked me "How was your day?" "Hard," I replied, "I can't seem to figure out how to live with the RA." He looked at me "Seems to me you're doing a good job of that Mom."

I came home, cracked a bottle of Australian Shiraz called Raw Power, and found Barb's comment below.

Best – The world is a rose; smell it and pass it to your friends.

life

For years, to be clear for almost twenty years, best and worst, has been a source of Light and Life to my spiritual journey. Lately, it has become a source of frustration. My sons are at the point where it becomes more and more clear that our interactions, while no less sacred, are less public. And that is a very small part of the difficulty. The main difficulty in blogging my examen means that daily I have to really admit my worst, and inevitably for now, and for the future as far as I can see, the worst is how hard it is to move into acceptance of the limitations of the chronic illness that I live with.

That is a journey that is hard to blog. I need a better sense of humor and a stronger undergirding of Juluis of Norwich All will be well to blog it as I would like. It is the water that is slowly and inevitably reshaping all parts of me.

The 19 year old, home from uni, went shopping with me today because, although I did not have negative side effects from the Orencia, I am too weak to push a cart that contains the fruit of a major shop. A while ago, he told me that he liked the old me, the one before I got sick. "Yeah," I replied, "So did I."

But his comment made me think, in my world of face to face, he is the only one who really remembers the old me. L and I were married only three years before I was diagnosed and I was symptomatic before we were married. At the time, I thought the fatigue and aches were from raising three young children alone, helping my dad remodel the house we lived in, and working in a fairly stressful career as a tax consultant for a mutli-national firm. I was wrong because after we were married, after I left my job and moved out of that house to Australia, no matter how much I slept, the fatigue and aches did not go away. And although it seems like the 15 year old and the 11 year old would remember the old me, they don't seem to.

We moved here when I was in the midst of the hunt for a diagnosis. There are a few perceptive neighbors who seem to be aware that my life has changed, and they ask with sincerity, "how are you?" I always answer them - "better" as if not being better was a sin to be avoided even to the point where I casually and without thought lie about it. For the most part, though, people take the me who doesn't seem to do a lot as the me I have always been.

The 19 year old's comment awakened me to a bit, okay a lot, of magical thinking that I have been indulging in regarding Philadelphia. Going back to school, a new career, all of which might be possible, but in my head the scenario was enacted with the before Anj. We spoke today, as we shopped, of how he liked the mom I was, and he likes and is very proud of the mom I am now, and he misses the flare I used to have.

Cat left a comment the other day that spoke to how I blog about the RA as if it is one part of my life; not my whole life. That has been very intentional, it is just one part of my life and I never want to let it define me. But as I write, I wonder if I have the examen, if writing best and worst has been frustrating because I have been unwilling to be that open, with myself and others, about the journey of coming to peace with this chronic illness. But I am miss the daily practice, and I miss the insights that come, and I miss the feeling of faithfulness. And I miss the stories.

So tonight, as the 15 year old and I chop onions and celery to make their dad's stuffing recipe, as we roll out the crusts and make pies, I am going to be holding in the Light the query – What does faithfulness look like in regard to the examen? Where can I find Life now?

rapt

To trust
that the Eternal has substance
and that Goodness fills this world
with creation
despite the evil
that seems so more prevalent

It is a task
I cannot complete until I sit still
and open
my heart
asking, in whatever way I am able
Take me in Jesus.

Or why I love Willa Cather

I was looking through my blog last night, trying to find when I was diagnosed with RA and found this instead.

 

Ephiphany
Pem Kremer

Lynn Schmidt says
     She saw You once as prairie grass,
     Nebraska prairie grass;

     she climbed out of her car on a hot highway,
     leaned her butt on the nose of her car
     looked out over one great flowing field,
     stretching beyond her sight until the horizon came:

     Vastness, she says
     responsive to the slight shift of wind,
                                   full of infinite change,
                                   all One.

     She says when she can't pray
     She calls up Prairie Grass.

Query during Meeting For Worship with L this morning

A huge part of managing my disease is finding the meds my body will tolerate, that will also work to halt or lessen the joint damage that RA causes, and the systemic impact (fatigue, malaise, eye problems, internal organ problems, mouth sores, skin rashes) of the systemic nature of this chronic illness. Got that? OK.

RA is more than a joint disease, it is a full on body attack. I may look fine to you, but inside my body is at war with itself, and it is the disease that often calls the shots. The right medicine is like a good cease fire, think Christmas Eve in the trenches of WW1. The meds I have had the most luck with are all classed as chemotherapy type drugs, they are called bio-logics and if you want to know more, there is plenty of research available on the intertubes. J

My current med is Orencia. It is outrageously expensive, and that means one of my internal struggles with receiving it is whether I am a productive enough member of society to justify the cost. No, I am not. Yes, I actually think like that. It is given once a month as an infusion in the Doctor's office, those of us who are receiving infusions – Remicade or Orencia usually – often joke during the time we are hooked up to the IV about our reactions, and how worthless we are the day of and the day after receiving the med. My joints feel almost immediately more mobile, but my body often feels like it just got slammed. Which technically is kind of right. And that brings us to another struggle I have; the last two ways my body has reacted to this infusion. Migraines are a typical reaction for me, and those are easily managed in this non-career outside of the house, teenage children world I live in. I go to bed, and when I wake up the migraine with the visual aura nauseousness and debilitating pain have decreased to some simple pounding or a general feeling of being on the edge of something that I need to be careful about. Not completely gone, but not completely there either. But the reactions I've had the last two times have been compounded by illness I think I carried into the infusion. Sometimes it is hard to tell if I feel feverish and achy because of an RA flare, or if I am coming down with something. After last month's infusion, I spent almost three weeks in bed, arising only to care for my sons, act well for L when he was home, and grocery shop when I had to. After a week it occurred to me I might have the flu. I did.

So, I have found myself putting off this infusion. I needed to be well for the retreat, I had too much to do, perhaps I was getting a cold I did not want to aggravate from the impact of the drug. So little time to get it done, so many reasons not to. Sunday, after an hour in the garden, the ankle that wasn't sprained hurt worse than the one that was. Monday I woke with hot joints all over. I found myself not wanting to chew anything because my jaw was so swollen, nestled into the corner of the sectional that becomes my refuge and my prison. Yesterday, I made the call and I scored because the office manager had already ordered the med and it was waiting for me. I told her how happy she made me; she laughed and told me that she loves to make me happy. I go in this morning.

So during Meeting for Worship this morning, L texted that he was going to have a time of grateful appreciation that God had provided what he needed to finish a pressing project. Actually those are my words – his words are "My query will be how happy God makes me when he gives me what I need." L's simple faith often shames me in a good way. I texted back, ever the stickler for accuracy in words – "that is a reflection of gratitude not a query. But it really helps me with my query - I am going to ask God to give me what I need in the infusion and then trust that She will do just that!"

So I sat with that that ask this morning, and asked to be given the trust also.

The X-rays on my ankle showed that my fall from the raised garden bed resulted in just a sprain, the Orthopedic Surgeon was surprised, based on the swelling and the bruising, that there was no fracture. She also told me that there was no x-ray damage showing from the RA. I'm one of the fortunate ones, I was diagnosed quickly by a very young Rheumatologist who understood the importance of early aggressive treatment, and as soon as insurance requirements with the cheaper drugs were satisfied, I was put on the biologics. Five years after diagnosis, my foot x-ray shows no damage to the bone. Ten years ago, that would be considered a miracle; she told me, thanks to the new bio-logics, it is becoming a bit common. It was what I needed to hear.

I carry that with me too this morning.

Our St Lucia

 

Sometime when St Lucia is asleep

Her paw curls around itself.

The nails bared in the curl

like a lioness

in a dream of the hunt.

And I am reminded of her

innate wildness, sheathed in cuteness,

and the wildness of the Creator,

sheathed in Goodness.

path as gift

Best of the weekend – On the weekend, I attended a retreat, a School of the Spirit renewal/reunion concerning the topic of spiritual restlessness. And when I try to reflect on what was best about the weekend, the piece that comes to me today is an Opening into moving beyond acceptance of my physical limitations, into coming to peace with them. And what that brings to the Light in me are two desires. 1) That I would always have my own money, that I would never live in a state of dependency on another for shelter or food or wants. And 2) that I would in some way contribute for the good of our world.

It feels as if I have always carried these wants; I could reframe them as the want to be independent, reliant on no one and the want to be, in some way, immortal. Are they common desires? Do they drive others choices and imaginations too? They have been longings that have mostly felt just out of reach; for the last eight years I have been dependent on my husband for financial keep, and my contribution to the good of the world seems laughable. And when I ponder the question of “What do I want to be when I grow up?” these unfilled wants have been the submersion of the iceberg that has interrupted or driven the flow.  Deeper those these desires, but not as directive I think, has been the want to find the Path of Obedience. And the path of reality. What I can do, the impact I can have, has always been limited by who I am and what I struggle with.

This weekend, we sat with queries given by the facilitator Dan Snyder - What is my question?  What is the question I am living?  What is the question I've been living since I was born?  What is the essence of the pattern and what is the fierce leading edge of the pattern in the way it is leading me into the rest of my life? And I realized that my questions of how do I have immortality in my impact, and how do I obtain total independence have probably been the wrong questions. And as I sat with how these queries interact with the great spiritual restlessness I have felt and am feeling currently, well..here is a small piece of what happened.

In a small group, in a small piece of what I shared, out of my mouth came these words and this image – “the image I carry is of cutting open the belly, of individuals and institutions, sticking my hands in, pulling out the bowels and the shadow that has been unnamed, and then of encouraging those present to sit and breathe the fragrance wafting from that shadow and see what it will tell us.” A woman asked “do you want to do this to other people?” And I answered “I can’t not do this; to myself, to others, to places, to institutions.”  

And although I often carry that work in silence, there are times when I can’t not speak to what I see, feel and smell; naming what is real to me, even though I am certain that no one else has that experience. No… the reality is that I am certain no one else wants to smell what is emanating from the bowels. And I am worried that naming it will cause others to look at me as if I am three-headed, which maybe I am.  

The wording, I think, is important – it is not that I want to bear witness to this stinky mess, to naming what is hidden in our bowels, it is that I can’t not bear witness.

So maybe my question is how do I surrender to the path I have been given, instead of the path I want?

From Sandra Cronk’s Dark Night Journey – “we do not choose a path. We experience the path as given. Walking in trust, along the path that is given, is our way of saying yes to God.”

 

the problem of pain

Worst of the weekend – A week ago Sunday, I stepped out of my raised garden bed at our community garden clean up, and into a hole in the ground. And even my super power bearing Wellies could not stop my ankle from turning, and the resultant swelling, bruising, and pain. A week ago Sunday night, when the pain was too severe to allow me to walk, my rheumatologist encouraged me to go to the ER, or see an orthopedic surgeon the next day. Hours in the ER and the thought of the last two visits for other members of my family being denied coverage because the insurance company deemed them not emergencies, meant I was content to stay home, rest, ice, elevate and compress the foot and see what happened. Well, it got better, I could walk on it for most of the week, although it was still swollen and discolored and painful, and I needed to cancel some appointments to give it proper care.

Which brings me to the weekend and a commute to the retreat from our rowhome in Philly, a four or so block long walk to our parking spot, a flight of stairs to my room, another flight of stairs to the shower, and a walk from the parking lot to the convent where the retreat was held, stairs down to the dining room, stairs up to the snack room, and two flights up to the lounge where we gathered for a small group meeting time.

No rest, no ice, the only elevation was propping my ankle on the chair placed in front of me, and trying to figure out the conflicting needs of the RA to sit on the floor and move, and the sprained ankle to rest and be elevated.

So my ankle throbbed all weekend. Not enough to bring tears, but noticeable. Monday it was ballooned again, and I have an appointment to get it looked at today. Of course, the swelling and pain are considerably lessened since making the appointment.

both hands

A quote from Kenneth Brigg's Double Crossed: Uncovering the Catholic Church's Betrayal of American Nuns, has spoken to me, to many questions I have carried, and to the imagining of my future. I added the bolding to highlight what spoke to me.

 

"Sister Jeanne Knoerle illustrates the dynamism and continual evaluation that this new priority (the call to justice) could stimulate over time. A Sister of Providence, former president of Saint Mary-of-the- Woods College, and program officer for the Lilly Endowment, Sister Knoerle looked back in 1984 at how her mind had changed. A decade before, she had helped write a community statement that urged the sisters "to raise our awareness of poverty and powerlessness so that, as a result of reflection and inner conviction, our lives and ministries may assist in the elimination of those causes and their effects." In an unpublished paper for her community called "Ministry: Focus and Direction," she said that in retrospect "we erred" in fixing on that goal, not because it wasn't important, but because it was too narrow. Just as crucial but neglected, she added, was "our traditional role as religious to assist others with compassion and love to cope with the painful realities of their lives."

"I felt then, as I do now, that besides, working to create a more just and humane world, we need to recognize the continuing, inescapable human reality of sin and injustice and pain and recognize that we hav an important role to play in helping people deal with the effects of those evils," she wrote. "

partnering in co-creation

She often told me that she did not know God; that she could not quite wrap her head or heart around a personal God, present to our every day. I would listen, and then continue to speak about the personal Divine I had experienced. She offered me compassion and strength with my hearing loss, something we shared in common, the struggle with my joint pain, stiffness and fatigue and when I was diagnosed with cancer, her competent 68 year old arms wrapped around me and she whispered into my good ear "I am so mad at God right now." It took a while to name the deep feeling of gladness in my soul, she was mad at a God she had mostly doubted was real.

A while ago, we shared a weekend retreat. The Big Wind blows was the icebreaker Friday night, mainly because I remembered how much she enjoyed the game from two years ago, and the cornerstone was an extended Meeting for Worship Saturday am. The topic of the weekend was "expectant waiting" ; she told us Saturday morning she was waiting for her best friend to die, I was waiting to see if the Living Christ I know would be accessible to me. She had been waiting since summer, and now it was fall and the communication indicated the time was very very close. I have been waiting since late summer and the lack of communication indicates I am still out of luck.

Sunday morning she received word that her friend, as this plain speaking birthright Friend put it, had rejoined the river of Eternity, had rejoined the River of Life. I sat with her words as we wrapped up the weekend, and settled into our First Day Meeting for Worship. And as I sat in expectant waiting for whatever the Spirit would bring that morning, I had a strong desire to walk into the middle of our circle, spin as in the game we played Friday night, come back to my chair, say "The Big Wind blows" and sit down.

Of course I had that desire. Of course I ignored it. Another time, another place was brought to mind. A week of intensive group work for adult survivors of childhood abuse; an isolated woman with secret trauma. Myself during the opening music worship called to sink to my knees, and after initial resistance, finally moving into obedience and onto my knees. The isolated woman behind me saw my action. Two hours later she found out I was one of her group leaders; two days later she shared her deepest hidden secret, bringing it to the light after some thirty years. She wrote to me later"when I say you sink to your knees, I knew I could trust you with my darkest story, I knew Who brought you to your knees, and I knew you were a woman of obedience. "

When there is little clarity, obedience to the Wind of the Spirit becomes more difficult. The risk of blowing it seems greater. But my heart's desire has not changed, although my connection with the Living Christ certainly has. And of course, it occurred to me at that point that a similar situation existed during the current Meeting for Worship. Somebody else might need me to give the message I was resisting.

She is sixty eight years old, she has been a Friend all her life, her wisdom and voice are ones I listen deeply for and to, and yet I have never heard her give a vocal ministry during Meeting for Worship. I stood, moved to the middle of the circle, intentionally and with great care I extended my arms, I twirled, once, twice and then I moved back to my seat, stated "The Big Wind blows" and sat down. Immediately, she popped up, "And the river of Life flows on."

You see I know there is nothing in myself that is worthy of being a part of her message. My tears welled from tasting and seeing that God is good. Even if I cannot access that Goodness in the way I am used to. Later, she told me that she needed my message to give hers. Yes, I knew that.