Stars

April 1, 2025

On Christmas Eve I was served communion by a twelve-year-old girl wearing a crown of silver stars. 

It was magical.

The truth is, I struggle with boundaries.  Who is able to pray for healing, hands laying on the head of one broken and longing for something different.  Who can pray a prayer of blessing for someone at a crossroads, preparing for a life of new and possible.  Or healing from a life of old and grief-filled.  Who can marry you or me.  Who can baptize. 

And who can serve communion.

These sacraments that seem almost common.  Water, bread, body, cotton..  Wrapped up in rules.  Bound in control.

I know what you will say when I ask this question:  Why can’t we be served communion by a 12 year old girl wearing a crown of silver stars?

Rules.  Scripture.  Authority.

But it seems to me, that’s exactly who should be sharing sacrament with us, broken and weary. She, shiny and new.

In this time, in the life of the country in which I live, boundaries are drawn every day.  Tighter and tighter.  Soon we will suffocate.  Some already have and I must bear witness to this trauma and tragedy.

I have the privilege of knowing I will not be deported.  Of knowing I didn’t need to talk with my white son about what he should do if pulled over by police.  Of knowing that my marriage will not be stripped from me because of who I love.  Of not being denied an abortion and dying on the table of someone who pretends to know what they’re doing, underground, in the shadows.  Of not worrying that I will lose hormone therapy or take my life because of my trans-ness.  Because of my pronouns.  Because of who I am.  Of not losing my home because the rent is raised.

I have the privilege of being able to buy eggs.

And so, it’s time for queerness.  For eccentricity.  For breaking walls.  It is time for resistance.  For dancing.

It is time for communion.

The sacrament of communion is a space of blessing that is open to all of you.  It takes what is common, bread and wine, and it puts it in little bits and little cups and you pick a bit up and sip the small cup and something magic happens.

You are forgiven.

You are forgiven for not leaving the house to march in protest.  You are forgiven for buying fast fashion.  You are forgiven for judging someone walking down the street.  You are forgiven for not calling your representative, for watching DEI burn to the ground under the weight of sin and power.

You are forgiven for not knowing what to do to make a difference in the world and, so, binging a show on Hulu that makes you numb.  Something about cooking.  Or home improvement.  Or housewives. 

But, here’s the thing, when a twelve year old girl serves you communion, everyone else is forgiven too. 

Everyone.

What a disappointment, what confusion, what a challenge to understand, much less believe.

I still don’t believe it.  But despite my disbelief, I think it’s true.

This is what it means to be a person who follows the way of Jesus.

Everyone belongs in the beauty of the story.  Everyone is beautiful. Even when we see them and know that, for now, to us, they look really, really ugly.

I’m not a fan of this truth, to be honest.  It seems like we are choosing sides when we say everyone belongs.  The side of the oppressor.  It seems like we are saying power and control win.

But is there a way to be bold in our beliefs, to stand for equity and justice, to speak truth to power, to be loud and take up space and demand peace – is there a way to do this and still hold space for everyone?

Dear powerholders.  Dear 47.  Dear those who assault someone today.  Dear misogynists and racists and those who are trans and homophobic.  Dear sexist assholes.  Dear you who is literally binding someone right now to deport them.

You are on notice.

The space I am holding for you is small and you are going to have to stop, confess, and repent from your sin.  That’s my rule.  I guess that’s the boundary I believe in because I don’t think there’s any other way.

I suggest you start by going to Christ the Servant Lutheran in Louisville, CO on Christmas Eve and take communion from a twelve-year-old girl in a crown of stars.

I know it’s months away but if you go now, you’ll be able to reserve your seat.

If you don’t mind, could you run and not walk? 

This girl, who will offer you communion, was sent to 2025 to show us that there is possibility and magic all around.

That in the everyday life-ness of our everyday life, we can be blessed and loved and known and we can belong.

I think that’s beautiful, and I am preparing for the Christmas Eve sacrament even now.  I don’t know how else to make sense of this world as it burns.

I’m hoping bread and wine will help.

I’m not perfect – and I know it.  None of us are.  Lots to confess and repent for.  But I know it and I’m working on it.  I do this because the world of twelve-year-olds is important.  I do it so they can see that we know we’ve created disaster, that we’ve ignored the impulse of peace and created war.  So that they know how sorry I am even as I struggle to know how to begin to fix it.

I do it because I want, desperately, for there to be a world for her.  For her children.  For my grand-nephew Little L.  A world that is full of beauty more than destruction.  Growth more than devastation.  Peace more than whatever it is we are waking up to every morning right now.

The world right now feels impossibly broken.  Everyone I know feels it and, if you don’t feel it, I’m thinking you might be numb.  I have more questions than answers, and not the good kinds of questions like “What can we imagine for our future?”  or “How can we make a difference in our communities?”

These are questions that belong to a world of hope, not a world of trauma. 

But we are in a world of trauma.

I have to think that maybe, if we look very closely, we will find hope in those elements of sacredness that tie us together as beings and creatures of the earth:  water, breath, berries, dreams.  I have to think that something is possible.  Anything.  Like forgiveness.  Like hope.  And like twelve year olds at church wearing shiny crowns with silver stars.

Five Years

March 22, 2025

It has been about five years to the week when we shut the world down because of COVID 19.  Five years to the week when fear and powerlessness turned us into scared and angry humans.  We were scared of what we didn’t know and what we couldn’t control.  We were angry that we had to stay inside.  That we had to miss births and deaths and weddings and birthdays.  We were angry that we had to wear masks.  We were angry that those who didn’t believe in the science refused to wear them. 

We were broken.

We lost loved ones.

We were sick and the word quarantine became normal.

Many of us still struggle with long COVID, lives changed forever.

I wrote a number of stories during that time and I’m re-reading them as I move them to my blog.  Even as they bring up a memory of pain and deep despair, I would say, for me, the word I would use is loss.

I feel a sense of loss as I remember that time. I really barely remember it at all.

Here is the first story I wrote, a bit more than a year in. It was inspired by a song and video on Youtube. I needed to document my experience and talk about it. I was alone for most of this time. And lonely.

And so this mantra: Keep going.

And I did.

I know you did, too. And this is for us.

Once upon a time, let’s say in 2020, I was moved to see and hear the “Keep Going” song by Abigail and Shaun Bengson. Maybe you’ve seen it.

I am not overstating it when I say that I watched that video at least once a day for months. Months. First, I really love Abigail’s hair. Superficial beginning but I gotta be honest. But what I really love is the realtionality in that song. I wanted to hang out with them - AND Shaun’s parents. I wanted them to sing with me, a song of hope. A Keep Going Song.

Just like all prophetic songs, this one has worn a bit as we’re entering another season of death and despair. For me, COVID has become the container that has held the death of a loved one, physical health trauma - mine and others. It has been the casing for brokenness in the world and brokenness in my heart. It has held its share of joy and love too - a wedding, a birthday or more, a gazing at the sunset.

I guess I felt like I could really keep going in October 2020. Like I was super tired - but each time I looked into Abigail’s eyes, I believed. I believed that, even though I wasn’t right when she was asking, all right OR ok, I maybe could be. I believed that our hearts WERE breaking open I believed we WERE imagining something new for our kids. I believed we could keep going. Just like that. The keep going song.

With apologies to the Bengsons - who are amazing artists and you should stop reading this and find all their beauty-beauty and pain-beauty online immediately (come back, though). Ok, trying that again: with apologies, I am actually finding this quote a bit more to my life-ing:

“If you’re going through hell, keep going.” Winston Churchill

What I want to say is: I kept going. And kept going. And kept going. And now I find myself in hell.

I see you, too.

I don’t believe in hell. I don’t believe in some underworld fiery place where a devil waits for us to die so that he can torture us for all eternity. (First of all, it’s been done - thanks “The Good Place”). But mostly, it is incongruous to think that the creative force of the universe is just waiting around for us to mess up that that we can get moved over, like a bead on an abacus, from heaven to hell. Counting us, one by one into eternal damnation and destruction. Waiting for us to mess up so that we can add weight to whatever side the hell side would be. (I’m going to say left because I heard someone shouting at me the other day that the left are going to hell….)

But, with all that wrapped up in a great cloud of “who can really know?” unknowing, here is what I do know:

I DO find myself wanting to keep going. Right now, I want to keep going straight to a low-key but delicious dinner where, sitting with the Bengsons and the cast from The Good Place, I can look all around and see that we’ve all kept going. We’ve all shown grace and learned how to bake bread. We’ve all worn masks and got vaccinated. We’ve all sung a song to any one of a number of unsung heroes.

We are all (eating with) and walking each other home.

Which, I can pretty much promise you, won’t be hell.

From where I sit, today, hell is other people. But, from where I’m pretty sure I’ll be sitting tomorrow, all of us will be sitting around some big table and we will begin grace with: you are welcome into our home - we’re in Dayton Ohio. Yes, you guessed it, in Shaun’s parent’s house.

It is, after all, a keep going song- year x 2.

Too Much

This “Story” was the first post I made on this website, August 2021. I’m getting ready to retire my stories so I’m bringing the old ones over to my blog. It is so interesting to go back to see what life was like during COVID. I’ll pull more stories over in the next few days. For now, here you go. The desolation of COVID revisited.

It seems like each week - since maybe March 2020! - I say out loud: “It’s too much.” Like right out loud. As if someone was sitting across from me on my navy blue living room sofa. Drinking Fresca (the house drink of choice.). As if they had wandered in and sat across from me and leaned back with a small smile and said: “How the hell are you?”

The nerve.

Who of us doesn’t already know. The intense, burning, painful spot right under our skin that we worry with our finger knowing it will hurt. Deeply hurt. And yet touching it again and again, almost thankful for the pain because we know it means we are alive.

Which is fine for a week. Or two. Or a month. Or a year.

I’m bruised. I’ve worried that spot over and over again until deep purple and blue bruising has splotched my skin. But darned if I’m not going to go to bed tonight and then wake up in the morning and poke at that same bruised skin wondering if it’s healing.

Spoiler alert.

I’ve been quite sure, for a long time now, that God is energy. And I’ve hoped, for just as long, that the energy that is God we’ve named love. And that the God-love energy, when expressed in a deeply inter-connected way is what we call peace. And that this God-love of peace, when transformed and transforming is called justice.

No one is more confused than I about what all of that means together. Bruising, God and sofas. But I’m pretty sure it’s deep.

About as deep as that damn bruise.

Pieces

March 8, 2025

It seem to be my best friend, this puzzle before me.  Like the one before it who was my best friend and the one before that. 

 I complete a puzzle a day.  500 pieces of course.  I’m not ridiculous.

 Somehow, a number of years ago, while I was having what the kids those days would have called a “nervous breakdown” I decided to do a puzzle on the dining room table.  I was married then and had a small child so I was busy.  But after my son was in bed and my spouse turned on whatever tv show he liked, I sat before a puzzle and began the work of picking the edge pieces from the box and beginning to piece myself together.

 I had become broken.  I was working at the time as a Hospice social worker, a job I loved.  But I was the on-call person, the crisis averter, the nighttime driver all around the I-25 corridor in Colorado, and I was awakened by pager during the night while needed.  It was exhausting and, unbeknownst to me, it was destroying my mental health.

 I knew that the pattern would have to end soon, or I would collapse under the weight of it. So I asked to be moved to days and was given the go-ahead.  It was at the Christmas party for the company that I walked up to my supervisor to thank her.  It was at the Christmas party for the company that she told me I was to remain on-call.  I was stunned, exhausted, vulnerable and broken.  And I left.  I heard a crack and something broke off within me.

 I came crashing down and ended up in an outpatient program on a mental health hospital floor.  I would come and go for six weeks and I tried to pick up the brokenness and shove it back into place.

 But the space had grown too tight and there wasn’t room for me anymore.

 So I turned to puzzles.

 I love a puzzle because it gives you an opportunity to meditate on the things that build, that fit, that belong.  It helps you see that a life can be put back together even when the pieces fall apart.  And it unveils an image that was covered.  It creates something new where there had been nothing but pieces.

Like my pieces.  Like, it seemed, the pieces of the world.

 Piece by piece I rebuilt my heart.  Piece by piece I rebuilt myself.

 It has been 20 years or so now since those moments of uncovering and I recently returned to puzzling.  Not for the same reason, exactly.  My depression has long since gone and I’ve moved on from those trying jobs and relationships. 

 But I’ve been building myself again, needing structure in internal and external, piece by piece for a couple of years and here is what I’ve learned.

 I only like puzzles with clear color denotations.  It makes it easier to build.  Just like I like patterns in my life:  colors that blend, friends that sing, routine that brings comfort.  These are my pieces and these are the colors that help build the whole.

 I can do a 500 piece puzzle fast.  And once it is done, I don’t even give it a second look, I sweep the re-separated and broken up pieces back into the box and grab the next one. Just like I make fast decisions.  Just like I am willing to make huge life changes while staying agile and decisive.  When I see the image, the whole, I call it good and move on to the next broken piece of me.  This means I have work to do.  This means I believe that the ending is really just the beginning of what is next.

 I have a feeling that puzzling will be a companion throughout my life – especially in times that are so fluid and confusing that I will need some structure to help makes sense of them. Especially in times that are so broken that the pieces of my life lay around me like a shattered image of who and what I thought I was meant to be.  Especially in times that are so lonely, when I am so alone, that a celebration of color, building and finishing anything will reinforce my beloved-ness.

 Maybe that’s it.  Maybe, when I’m home and alone and thinking about life, a puzzle says to me:  You are alive, and you will rebuild.

 Piece by piece, my dear.

 Piece by piece.

Help Wanted

***I’m going to be bringing some older writings to the blog sometimes. Many of them have been what has helped me process my life in a way that has helped me now.

Below find a writing from July 2024 and, at the bottom, a brief note from Shandra February 2025.

Written July 2024

It took a turn yesterday.  I’ve been living with invisible illness most of my life.  Really, take your pick:  mental illness, fibromyalgia, IBS, Dercum’s disease, Ehlers-Danlos, Thyroid issues, newly created insulin resistance, severe pain disorder – a grab bag of conditions and illnesses that could bring me to my knees if I were to let them.

I was surprised that not everyone had disease like this, too. “What do you mean you’re not in pain all the time?”

I’ve been navigating quite well, actually.  Just trying to outrun the monster that is always in the shadows.

His name is “sick”.  And he’s an asshole.

Sick makes me tired at the most inopportune times.  The fatigue running wide and deep.  He makes me hurt.  Deeply hurt. 

Hurt in a way that knocks me to me knees, (would if I thought I could get up again) and makes me question most of my life’s decisions.  Hurt that burns, aches, and stabs, all that the same time.  He makes me trip as he laughs at my ability to balance.  He fogs my brain as I try to remember a word, a commitment, a conversation.

I have a lot of conversations that I don’t remember I had.  I lot.  It makes it very difficult to navigate my high-level job.  I forget I talked with someone and they refer to a conversation that, for me, didn’t happen.  And then other times I remember crazy-stupid stuff.  A strange encounter.  A story someone told or a meeting we had or someone’s favorite music. 

Sick laughs every time I’m uncomfortable because I can’t remember something I told you. 

He’s going to love it when I can’t remember your name. 

I’ve spent a lot of my energy in my life trying to pretend that, not only am I fine, I’m the best I can possibly be.  It works out well because I like doing things for people.  I like creating space for them, carrying and setting up tables and chairs for meetings or meals.  I like creating outlines that I facilitate in fantastic fashion.  I like being a professional with heart.  Almost like a magic trick, I think.  Look over here and see all the things I’m doing to create this sacred space for us and don’t look at my grimace, my slow walking when I stand up, my limp.  Don’t look at me sneaking my pain medication when my pain has become intolerable.  Don’t “check in with me”.  It knocks me off my game.

So now, now that sick has is becoming visibly disabled, I’m not sure my slight of hand will get me far.  In fact, it will look desperate.  Which I’m feeling this very second.  I feel desperate.

I’m not sure how I feel about becoming someone with a visible illness.  My illness, much like MS, ebbs and flows.  One day I need all the accommodations and supportive tools I can get just to function.  Another day, I’m totally fine and you would doubt the premise of my whole story.

The leap from invisible ( or even hidden) illness to visible disability is painful.  It takes some mental work to realize that what I’ve kept from you or from the world is now your business.  I now have to have conversations with people I really didn’t want to have.  I now have to belong to people’s gaze and misconceptions and judgement in a way I didn’t before.

I asked my doctor a few months ago if I should quit my job.  I was in that much of what I call a “pain crisis.”  I wasn’t doing great with my mental health.  I wasn’t doing great at my job.  I wasn’t doing great at being a functioning human being. 

Like I said:  Crisis.

She said that when people quit their job, they decline rapidly because it takes away what they like to do (if they’re lucky.). And I’m really lucky.

It takes away meaning in their life.  Which is what I need more than ever.

That conversation, and her compassionate and firm direction, catapulted me into the next phase of being sick.  I knew that when I told people:  I have a rare genetic pain connective-tissue progressive disease, I would someday have to acknowledge or deal with or confront or be directed by the word progressive.

A little clarity – rarely, when telling people about Dercums, do I use all the words or descriptors.  It feels overwhelming to me and, if I were them, I would start dozing off after one or two.  The one I leave out the most is “progressive”.  It feels like I’m either asking for pity, or I will be soon.

I don’t think I’m asking for pity.  And I don’t think I want it.  But I know I don’t want to be alone in this.

Help.     

Written February 2025

Looking back at this, I really see my wrestling with whether or not to quit my job.  And I am also wrestling with how to be honest yet authentic in my disease journey.

With work, I went to 20 hours a week in January and I’m loving it!  I haven’t had any sense of not being a functioning human being.  So I’m glad for the writing above.  Glad to know it helped me navigate that difficult decision.

Also, my memory is significantly better! I’m so thankful!