living on both ends - an exploration of best and worst

Still flow, just not as fun

WORST- The flow I wrote of in best continued into the night, it continued as the 17 year old and the 19 year old disrespected our house boundaries and involved us in activates and choices we can't condone. Serious infractions of how we have chosen to have life together as a family. The 17 year old is grounded, the 19 year old was asked to leave the house and return to his abode at uni. As L and I centered in prayer asking for wisdom, I asked him –"What do we want the 19 year old to know? What is the main focus we want him to walk away with?" L replied, after our 15 minutes of meeting for worship with a concern for parenting, "We want him to know we are for him."

Earlier, I had told the 17 year old that I wanted them both to have a good life, to be happy. My parenting, our parenting, has always grasping tried to be geared toward that – whatever we can do to further the boys moving toward a more good life. "Even at the risk of relationship?" he asked, "You would do what you felt you needed to do toward that, us having a good life, you not enabling our poor choices, even at the risk of relationship?"

"Yes," I replied. "How can you not know that about me?"

L's words made it even clearer – we are for the 19 year old. And sometimes that means the full message of "We love you dearly, there is a sweet spot in you that is deep and true, we love having you home, we miss you when you are not here, you are truly yar at times. And when you make choices that involve us where we have made clear we do not wish to be involved, you are going to need to no longer be a guest in this house." That was what the time of listening and speaking with him was about, those words, that truth, the first motion needs to be love.

It is funny how that works, the 17 year old was grounded, the 19 year old was asked to go back to his abode. I miss him already, and I hope when and if he comes home for Christmas he gets what we mean.

flow

 

BEST - From Wikipedia: Flow is the mental state of operation in which the person is fully immersed in what he or she is doing by a feeling of energized focus, full involvement, and success in the process of the activity. Proposed by Mihály Csíkszentmihályi, the positive psychology concept has been widely referenced across a variety of fields.^[1]

According to Csíkszentmihályi, flow is completely focused motivation. It is a single-minded immersion and represents perhaps the ultimate in harnessing the emotions in the service of performing and learning. In flow the emotions are not just contained and channeled, but positive, energized, and aligned with the task at hand. To be caught in the ennui of depression or the agitation of anxiety is to be barred from flow. It is the same mindfulness as ecstatic lovemaking, the merging of two into a fluidly harmonious one. The hallmark of flow is a feeling of spontaneous joy, even rapture, while performing a task.

I read somewhere in the blog world, and I am sorry that I cannot remember where and give credit where credit is certainly due, anyway I read of the exercise of naming five things to be thankful for about having Rheumatoid Arthritis. At the same time, a family member sent me a video that tripped me the wrong way. The video was entitled An Invisible Woman, or something like that, and my perception was this woman giving a talk about how serving her family with no thoughts for reward or being seen or mutability in relationship was serving God. The video angered me in many ways, and as we all worked on getting Thanksgiving dinner together, L with the dishes and he and the 15 year old with the cranberry grinding, the 19 year old a whirlwind with setting up the extra table in the butlers pantry as a food and china landing area, setting the table, washing and chopping the potatoes in preparation for mash, and the 17 year old and one of his friends who is a girl sitting in the kitchen and talking with the 19 year old and me as I made pies, I realized some of the ways in which it disturbed me.

1. Jesus was about making people visible in all ways, the good, the bad, and the ugly – he was never about making people invisible.
2. Allowing others to minimize who we are as people is never about serving God; it is about something else.
3. If one person is doing all the work, the others miss out on the good feeling of being in the flow of the effort.

Thursday, for me, was all about flow. A paced, measured, steady, intentional creation of a feast, with energy, sharing, excitement and fun. There was an ease, a symmetry, and a marked lack of tension or stress. And as I think about this year, and compare and contrast it to that Thanksgiving four or five years ago when I shifted from being "the Invisible woman" who did it all myself, to being part of the process and sharing the work, I know it was RA that pushed me to make that shift. Not being able to do it all myself, meant I needed to take the risk to let the other members know I needed help. Vulnerability is hard for me; I have often made the choice to do it alone than take the risk of being disappointed with the response when I ask someone for help.

I have experienced flow in different areas as an individual. Thursday was about experiencing flow as a family; as a unit who were all fairly engaged in the process of creating a feast.

Feeling and learning about that flow is something I learned from having RA. I can't think of five things, but this one is huge. And I am grateful for how my reaction to my physical weakness of requiring help with the meal, or we would have no feast, has changed our holiday. Vulnerability, stating what I need without anger or manipulation, and then seeing what happens. I had to be prepared to give up the feast to be able to get the flow.

There was an ease, and an enjoyment of the process and of each other…..that felt like a taste of the Kingdom.

a thousand words?

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.”