Ok, Friends!

It has been a while and I’ve missed you and I kind of haven’t missed this. I’ve had a weird mental relationship with this format of expression over the past few weeks. I’ve gone from “wow, I love this writing thing!” to “Well, time to write. But I’m not gonna.”

And I haven’t known why and I think I might know why and I’m pretty sure I have no understanding of the real reason why and I’ve decided to just let the question be the why.

These past couple of weeks that I’ve not been writing my story, I’ve been living my story. I finally had my MRI which is a story itself. I took two Valium before the procedure (as prescribed) and when the friend who drove me there and back told me that we drove through McDonald’s after the MRI so I could get a McGriddle, I shouted “We drove through McDonald’s!?” and then when she told me I had wanted to go through Hardees because they had great, and I finished the sentence for her “biscuits and gravy”, I knew that valium could not be trusted.

I hope that McGriddle was good.

The MRI showed no permanent damage.

So now that we know we are dealing with post-concussion syndrome (with possible tbi) and functional neurological disorder (which was diagnosed about 6 weeks ago and which, once I understood and began treatment for, has been a game changer), the next step seems more clear or maybe less murky.

I maybe don’t feel better.

But I feel patient. And I feel courageous. And I feel prepared. And I feel calm. And I feel loved. And I feel strong.

And, right now, for me, that’s enough. It’s amazing, actually, when you think about it. We are almost at the year anniversary of my fall

.

The week before last, I had to pick up a couple of prescriptions at Walgreens, and I told my friend that drives me to appointments that I wanted to go in by myself. A huge deal for me! I went in, waited in line, got my meds and then thought to myself, “I should buy something. And, I should buy something normal.”

I hadn’t bought anything at all in almost a year.

Now, setting aside for a moment what the word normal means, I had to stop and look around for a minute so that my sweet brain could decide what normal was. And, when I looked up, I was looking directly at the sponges.

Not only are sponges normal, I needed one. And not only did I need a sponge, I preferred a three pack which was sitting unceremoniously in front of me on the Walgreens shelf.

Except to say that it was sitting on that shelf bathed in light and waiting for someone to see it for what it was: normal and not. Worth the price I would pay for it and worth the time I would take to paint it.

It was beautiful.

I picked that three pack up, headed to the register counter, and promptly forgot my pin, how to use a credit card, and how to decide if I wanted a bag or not. When I left, the person checking me out was glad to see me go.

I don’t blame them.

And here’s the thing. I still have that story in me. And it is still fun to tell. But I would have been happy just to give you the pic I painted of the sponge, two views. And you wouldn’t know what it means and I would feel like I had told the whole thing.

I feel like I’m saying this is very serious when it’s really not and I’m leaving Substack when I’m really not and, usually, when I make declarative statements, I do the opposite thing starting the very next day so maybe expect more posts? Who knows.

But, for this very moment, I want you to know that visual art is how I’m spending my time, and it feels really important and I’m telling some stories that I’ve never told before and right now is their time to be told so I’m giving them the space to say what they need to say through acrylic marker and watercolor paper. Not through my keyboard and Word.

I’ll be back soon (maybe tomorrow) and maybe with a bunch of art to share (or maybe not).

Meanwhile, with whatever you’ve got going on in your life, I hope you feel patient. And I hope you feel courageous. And I hope you feel prepared. And I hope you feel calm. And I hope you feel loved. And I hope you feel strong.

And I hope you have a sponge.

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I’ve been thinking a lot about digging deeper into my life experiences, my understanding of who I am and how I got here, and the stories I don’t usually tell. It is a weird space because I tend to be pretty open. But, just like you, I have things from my 57 years that I also tend to keep to myself – many of these things are unexamined but real. So here goes: My story of being a smoker in the late 80s and early 90s. I don’t talk about it because of the stigma smoking (old school, no vape smoking) carries with it.

What I hope is that you will see a story of how belonging can be found even in the oddest of places and that, while smoking is terrible for one in many (most) ways, it was life giving to me for many years. A paradox I gladly lived.

I remember my first cigarette.

I grew up in a church and family culture where I did not see anyone smoke cigarettes. The only context I had where I experienced smoking, was on my high school campus where there was a spot at the back of the school, just outside, where my peers went to smoke when the need hit. For some reason I imagine a large cage like structure where kids squeezed in to meet their addiction. I don’t know that I ever really saw it for myself. Although of course I did.

And I don’t remember people smelling like smoke although they must have. They were a walking advertisement of where to find community when the need for nicotine and the demands of high school merged.

And so I went to college never having smoked a cigarette. I didn’t swear or drink either. And I listened to a lot of contemporary Christian music (which maybe doesn’t surprise you!).

Until my sophomore year in college, I was “fine”. And I remember the moment my depression said: Hey. I’m not going away and, in fact, I’m moving in. She did and I ended up dropping out of college for a semester during which time I slept all day and worked a bit.

During that time, I found myself at a New Year Eve’s party at the house of a couple of friends I worked with – sisters who taught me how to be completely unhealthy with alcohol use and cigarette addiction. I loved every moment.

And that first cigarette, smoked while I was sitting at their kitchen table, turned my life upside down. I was instantly addicted. Instantly enamored of how I felt when I smoked it – like a key was turning in a door that had been previously locked and when that door opened, my depression was waiting to help carry the nicotine’s furniture into my body/mind. They instantly became best friends.

I loved smoking. At that time, in the later 80s and early 90s, the culture of smoking and the culture of judging smokers wasn’t what it is now. There was a lot of smoking in cars, groups of smokers hanging out in front of buildings during a break. Even, at the college I attended and returned to after a semester away, a place called “smokers’ corner”. Smoking and drinking weren’t allowed on campus. But, for us smokers, just across the street from campus, in the most visible place possible in a small Iowa town, stood a bench or two where, with my smoking friends, we spent hours just being ourselves. And hours smoking cigarette after cigarette. This set-up brought its own kind of judgement from those who drove or walked by, but who were too amazing to smoke. Or too insightful. Or too intelligent (was what I thought they must think). I was never quite sure what separated us beyond that burning cigarette. But, for the most part, it was as if we lived in two different worlds.

I loved to smoke. Especially while I was in college. I loved everything about it minus the smell of nicotine smoke that permeated my clothing. And maybe the taste of the cigarette still in my mouth when I wanted to kiss someone or even talk to them too closely. Gum and mints were my best friend and, oh, I wish there had been Febreze.

And it was best, for the most part, to kiss or talk to another smoker. Less shame.

Smoker’s Corner was our gathering place, we smokers. In between classes, throughout the day, we would find our way to that very visible space and we became deep friends. Those friends, as well as a few I had held onto through my college depression, in some ways saved me. I was lost and broken and sad and they became my campus community. While none of us are close now, I’m still grateful.

There was a bench we would sit on - but of course we sat on the back, feet on the seat. Perched, I would say. And we were there in all seasons. I can still see us shivering, cigarette shaking just a bit with the chill affecting our hands. I can see us cupping our hands around a tiny match flame, daring the wind to put it out which, honestly, it often did.

Smoking is an addiction. But so is community. I needed both and they both unfolded before me.

One of the most impactful experiences I had during that time occurred when the campus minister, a man I didn’t know well but had met before, joined us on the corner one day. Very few people chose smokers corner as a hangout spot without a Zippo lighter and, in my case, Marlboro Lights. But there he was.

Rich invited us, this small little community of misfits, to plan and lead a worship service on campus in a few weeks. To create an experience around whatever topic we wanted. To invite others into community and conversation and to provide touchpoints for the spiritual journeys of college students. Our peers.

It was a wild invitation.

I was longing for spiritual touchpoints myself and we said yes.

So it was that we found ourselves, on a Wednesday night at church on campus, leading a service on the topic of wearing masks and vulnerability. On pretending to be someone we aren’t, just to avoid judgement. On inviting students who have been a few feet from that bench on smoker’s corner as they rushed by, back and forth from town to class, to consider ways in which they were outside the made-up norm. Ways in which their uniqueness placed them in the path of spiritual friendship and longing.

We showed up out of our deep connection to hope, the hope that whatever Divine Spark lives in our hearts, and at that bench on smokers’ corner, would journey with us to campus and set an ash of compassion alight in all those who came to hear our stories of the deep ache that accompanies difference and separation.

The blessing, of course, was that we weren’t alone. We smokers showed up for one another and showed up for those willing to explore why our destructive default as humans is separation rather than inclusion. Is independence rather than interdependence.

We felt respected and heard. We saw a first step. There was no radical change after that. Except, maybe, in the story I told myself at 21 about the meaning of life which, if I’m honest, was that I was alone.

For a moment I didn’t feel so alone.

After that service we went back to the corner, flicked our Zippos to light them, breathed in that nicotine, and lived our own unique communal life until we graduated.

Later in that semester, I was almost-seeing this guy and we decided to go to the Des Moines Arboretum on a first-ish kind of real date. I left my cigarettes at home. I wanted to look impressive and like a non-smoker. Of course, I was actually a cigarette addict and, as you can guess if you don’t know, not feeding an active addiction for a whole day sucks.

Once we got back to our small town, I grabbed my pack of cigarettes and walked to the coffee shop, which had ash trays on each table, so that I could smoke and read for a while. It wasn’t long before I heard the door to the restaurant squeak open and I saw my date, pack of cigarettes in his hand. Coming to read a book and smoke a cigarette, much needed as he had gone on a day long excursion date without smoking at all. We were both trying to show off to each other and wear an “I’m not a smoker” mask all day.

How funny that we actually both were. And how sad that we assumed judgment from our date before welcome. We were way off.

On the night before graduation, overwhelmed and deeply, deeply depressed, some of my smoker’s corner friends and I sat on the benches on the quad in the middle of campus and smoked our (almost) final cigarettes of our college career. It was well into the early morning, actually. And, as those Marlboro Lights came to their end, I flicked my cigarette butt into the middle of the quad, stood, stepped on it, and left it there for someone to find, used and crushed, a final statement that said: I was here and I’m alive. Ironic that a crushed cigarette would speak of life when its entire being causes COPD and the lung cancer that has taken a few beloveds into death.

I’m not proud of it. But it felt necessary.

It felt real.

It felt brave and also disrespectful which is what life felt like to me.

That cigarette was not my last. I smoked those Marlboro Lights for years. Most notably, for the entire time I worked as an assistant manager at Pier One in Overland Park, KS.

My boss (Marlboro Reds) and I would set an ashtray on the counter by the cash register and smoke the night away while we rearranged furniture, pillows, clothing, ceramic plates, and brightly colored napkins. It was a testament to the potpourri and candles that the store never smelled like cigarettes the next day.

I still have no idea how that happened. Because, damn, we smoked a lot of cigarettes.

I took my addiction to Colorado where I attended grad school. I began to date the person who would become my now-former spouse and, while he brought many lovely things into my life, one of the most loving and challenging things he gave me was an ultimatum: the cigarettes or him.

I think I was done with the cigs. I think I saw that that ultimatum was concern for my health and I became concerned for my health too. I saw a future for the first time. And I began Prozac when it hit the market, so the Divine Spark lit up the spiritual embers in my heart, too.

And so, I tried a few times to quit, and I finally sat one day on my sofa, holding a water bottle, sipping as I went, curled up in a ball, and quit cold-turkey.

Of course, the truth is that there were times I smoked after that but it wasn’t the same.

I totally quit completely decades ago. And I’m grateful. Addiction is a nightmare.

I was chatting with a friend a few weeks ago and we were finding common ground in many ways but, the most interesting for me, was that we both feel the same way about having been smokers. We loved it. We talked about our time smoking as if we were remembering an old friend. And we were.

We shared the idea that I have thought for a long time. That when I am dying, I want someone to give me a cigarette to smoke. It will be too late for healing and, anyway, healing is overrated when one is 99 years old. At least In my opinion.

I kind of want to prepare to go out with that taste in my mouth and smell on my clothes.

And then, with a little Febreze and some mouth wash, I will clean myself up and say goodbye.

Of course this won’t happen. And it shouldn’t. But how interesting to find someone else with the same story.

The love of smoking will never fade for me, I don’t think. But I don’t smoke anymore. I’m not a smoker now.

I’m just a person who is still looking for interconnectedness and community. I found it a long time ago, sitting on the back of a bench on the corner of a street on the side of a college campus on the courage to be myself.

I can still see us, friends who smoked together. Listening to They Might Be Giants on cassette, wrapping one another in love. Even though it came with smoke.

I can still see me. Hoping for a space and place.

I remember my first cigarette. New Year’s Eve. Late 80’s. I loved to smoke.

I absolutely loved it.

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In so many ways a trauma changes everything in a person’s life. And there are more trauma experiences than can be named. So much trauma. And so much change that comes. Bidden and unbidden.

I’ve had times of trauma, just like you have too. Some I would tell you about, if we were talking in my living room and the conversation turned to life experiences and how we have been molded into the us of today. Some I would only tell my therapist about as we thought about EMDR therapy to address the trauma my body or brain carries with me wherever I go. And some I might not tell anyone about because of shame or embarrassment or fear. Some stories build connection and some silence creates division. Painful, deeply painful division.

And so I find myself facing my trauma. The trauma that occurred on September 8, 2025 when I fell in my own living room. The trauma that resulted in a brain injury that is more stubborn than it has any right to be. The trauma that, when I wake up and feel, for a moment, that I’m fine and good and free, says: “Nope. Still here. I think you underestimate me”. The trauma that, as I fall asleep hours later says, as loud as it needs to, “don’t worry, I’ll be here in the morning. See you then.”

My trauma whispers way too much. Unless it screams. It is an asshole.

And it has broken me. And it has scared me. And it has destroyed much of who I was. And it keeps getting in the way of me becoming who I am now meant to be.

These next two weeks, in particular, are desperate. This is the only word I can think of. Most of my friends, (no really, most of them) are headed to Lamoni, Iowa, to provide staffing and support to 500 sr high campers during a week of camp we know as Spectacular (SPEC). This yearly camping experience has been the center of my year for almost 40 years. I’ve attended the camp every single stinking year since 1987 except for 4 times. Except for, as of next week, 5 times. Twice I was “uninvited” because someone got mad at my team mate, once I broke my wrist, once I didn’t want COVID and this week because of my f-ing brain injury.

This one feels the worst. It feels like something is being stolen from me.

I’m so desperately sad that I won’t be there to provide support for those campers who just need someone to believe in them and I won’t be there to be in relationship with my friends, who are staff and camper support. Others will be there to do this important work. But I should be there, too.

SPEC is my love language and I’m suddenly unable to speak.

This truth has created a swirl of honest reflection on my part. I’ve been thinking about what has been taken from me since September 8, 2025. It’s a lot. I’m going to list much of that a lot here. Since my fall I’ve really needed a level of realistic thinking which, more than what comes across as toxic positivity, places me square in my story, honors my (mostly numbed out) experiences, and acknowledges that this is a nightmare that, as noted, does not go away day after day.

In fact, when my mom said to me, in February (or March, who remembers?) that I will not go back to who I was, that returning to Shandra 1.0 is not going to happen, I breathed a little better. When someone sees what you see and says, out loud, maybe what you don’t want to say out loud, sometimes it feels like breathing for the first time in a long time. Maybe it feels like a gasping of air.

Maybe it feels like Shandra 2.0 finally feels seen.

So, here is my list. I’m asking you to bear witness, not feel pity. It’s a fine line, I know.

Here is what has been taken from me:

I’ve missed Christmas with family, my son’s reception after his graduation from Seminary, my nieces law school graduation, my nephew’s college graduation. I’ll miss my other nephew’s wedding in September. I will not be able to connect with my two year old grand-nephew like I would like to (following that bundle of energy around my house).

I’m not traveling to my usual yearly places: Minnesota, Colorado, Iowa, California, Washington.

I will not return to Alaska, my favorite place in the world, maybe ever. Travel is a far away dream.

I lost my ability to read. I had to start back with children’s books. I’m up to a middle school level with a page a day of something written for adults.

I can’t drive and have no plan to start because of symptoms that limit my ability to think quickly, stop my legs from bouncing, keep me from understanding signs.

I didn’t get to see my 4 year old buddy Oliver play soccer.

I wasn’t able to participate in a story telling (the Moth) competition in Kansas City.

I can’t drive by the offices where my friends work (where I used to work) and have someone hop in my car so we can go to lunch.

El Pico.

I am stuck in my home and can’t run errands.

By 2:00ish I’m “done for the day”. My energy is gone.

I can’t participate in conversations the way I used to. I don’t understand and I can’t follow what is being said.

I can’t have too many people in my house at the same time. The energy is overwhelming.

I have to be sensitive to my nervous system response to what is happening around me, and I often have to ask people to leave, or I have to go to my room to settle down.

My memory is deeply affected. I’ve lost entire conversations.

I’ve lost friends.

I have had to miss, for the first time in my 57 years, family camps. My summer is empty.

I don’t sing with others – I sing alone in my house.

I can’t do mazes or puzzles.

I can’t understand things – words, concepts, directions, maps. And I find it very difficult to make decisions.

I’m not flexible with my schedule or expectations.

I’ve not been able to see my son’s new house in Colorado.

My eating has become affected and I’m down to eating just a few foods. I’ve lost my joy of ordering in. Oh, and I’ve lost my ability to eat out.

My sleep has been affected.

My depression (which was gone for a very long time) is back.

I’ve lost my very pretty handwriting. My writing doesn’t look the same and I misspell words or miss letters all the time.

I’ve lost the ability to watch a show that I haven’t seen before. I don’t understand it.

I’ve never had to deal with headaches - I do now.

I’ve lost who I was. I either don’t remember or I don’t feel like her anymore.

Ok. I’m starting to disassociate so I’ll stop here.

While this list is overwhelming, it is what I deal with every day. As I look realistically at where I am now and what I’ve lost in my life, I understand that some of those things will get better. And, I’m sure, much better. But some are gone and I’ll only know what has left as time goes on. The me who used to think that I’ll be fine in a year, now knows there is no way to know.

I didn’t need to feel better today. I needed to be honest.

I’m wondering, what do you need to be honest about, too?

We all have our trauma, we all have pain, we all have a long stretch of highway that, while it leads us home, seems to get longer each day.

I think doing exercises like listing things one has lost after a traumatic experience can go either way depending on where you are emotionally. Today it feels good to name all of this - like an honoring of truth. Next week I might not have been able to do this.

My trauma whispers way too much. Unless it screams.

And it has broken me. And it has scared me. And it has destroyed much of who I was.

And it heals me. And it has brought me to a deeper understanding of who I am. Right now. And it connects me to you in these simple words.

In fact, in the next week or so, I hope I’m up to do a list of things I’ve discovered and added to my life. That list will be long, too. Joy and pain held all at once.

I’ll finish with some of the lyrics (I took a very few out, but you can find them online, of course) from the song “That Girl Don’t Live Here” by Courtney Hadwin. This song is how I’ve been feeling lately about myself and the me that’s becoming (and the me that’s gone) as all of the above gets taken from me, piece by piece:

I bet you’re gonna miss her
Now that she is gone.

If you’re looking for a girl like the girl next door
That girl don’t live here any more
She moved out when I moved in
And you’re never ever ever gonna see her again
I know you loved her, so did I
But she had to leave so say goodbye
If you’re looking for a girl like you had before
Well that girl, she don’t live here any more

The day she ran away
Is the day i came to stay
So boy you better listen when I say

If you’re looking for a girl like the girl next door
That girl don’t live here any more
She moved out when I moved in
And you’re never ever ever gonna see her again
I know you loved her, so did I
But she had to leave so say goodbye
If you’re looking for a girl like you had before
Well that girl, she don’t live here any more.

She moved out when I moved in
And you’re never ever ever gonna see her again
I know you loved her, so did I
But she had to leave so say goodbye
If you’re looking for a girl like you had before
Well that girl, she don’t live here
That girl, she don’t live here
That girl, she don’t live here anymore

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Pronouns

I have it on my backpack.

A gold pin that simply says: She/They.

Now, maybe you know what that means. Maybe you are a part of the LGBTQIA+ community. (And, as this is my story, I’ll use the word I would use going forward – queer). Maybe you are a part of the queer community. Or maybe you are an ally for queer people. Or maybe you’ve read an article online. However you get there, you know what they are:

My pronouns.

There are all sorts of things to talk about on the journey of pronouns. And perhaps you are an English major who just can’t let go of the “pleural problem”. (It really isn’t a problem.). Perhaps you don’t know why identifying pronouns is important much less even a thing. Perhaps you are a “they can do whatever they want to but there’s no way in hell I’m doing it too” kind of yahoo. (Sorry, I got judgy there for a moment).

Perhaps you don’t understand it.

I can’t soothe your unsettledness, really. But I can tell you why my pronouns are she/they.

It is simple, really.

I just can’t hang my hat on a false binary.

I can’t hang my coat on an either/or existence.

I can’t hang my purse/backpack/fanny pack on a system that is hierarchical (even though I am a part of the hierarchy), power dynamic centered (even though I have great privilege and power), and destructive (even though, to be honest, I destroy something every day as I live not-very-lightly on the earth).

Turns out, not so simple.

And so, you can use she/her but you can, just as meaningfully, use they/them when you speak of me.

Example:

Oh, you know Shandra, she is wild!

Oh, you know Shandra, they are wild!

Shandra is so hilarious she had me laughing all day!

Shandra is so hilarious they had me laughing all day!

Shandra – she is a quirky one!

Shandra – they are a quirky one!

Gosh, it turns out I am really concerned that you use every sentence in which you refer to me with an exclamation mark!

You probably aren’t surprised.

There are children, kiddos, young’ens, teens, young adults, medium adults, elders, all hoping you will see them clearly. And using preferred pronouns is one of the ways we can do that. It really is so simple.

We want to be seen and known. For who we are. We want to be loved and accepted and celebrated, not tolerated, for who we are. One of the ways we have all worked hard to do that in the past is to learn one another’s names. It has been important to us. As someone with an odd-ish name I’ve spent a lot of time either clarifying the way my name is pronounced when it falls from your lips or deciding not to say anything. But I know why names are important. They identify us.

Pronouns do the same.

The world is changing quickly. I hope you’ve noticed. There is no room anymore for “the good old days” (for a lot of people, they weren’t that good). There is no room anymore for “I just don’t understand kids these days” (they are just like you were – different and wonderful). There is no room anymore for “Don’t ask, don’t tell” (could we cover up uniqueness with any more of a thickly woven, strangling cloth?).

There is SO MUCH MORE!

Imagine being welcoming. Asking someone, anyone: What are your pronouns? Imagine being so open hearted that you identify your pronouns in conversation, too. Imagine being so compassionate that you enter into any conversation or human exchange not expecting homogony but rainbowogony! (huh? It holds up, I promise!)

This past week I watched a reel of a young beloved talking about people who do not use pronouns at all. My initial response was…”ok, too far”. (That beloved prefers you just use their name). But who cares if it is? And why not believe that it is meaningful and important to that person, and so, respect them as best you can.

Simple, just don’t use pronouns in conversation with that beloved. Just try even if it makes you uncomfortable, or it makes you judge them, or is if makes you wonder what the big deal it is. And don’t worry about messing it up.

Most folks would prefer you try and get it wrong than try at all.

And the question, “What pronouns do you use?” is so simple.

And there are questions we should be asking!

Questions about our being complicit to war. Questions about why we value guns in a society where our children are being murdered by those very guns. Questions about bullying and ending life. Questions about poverty. Questions about the very overwhelming racism that rears its ugly head every day. I could go on.

Maybe there is something I’m not seeing here. Maybe by getting mad at someone who uses and asks us to use they/them as their pronouns (for example), we are standing up to a system of violence and power?

Um, I’m pretty sure that is the exact opposite of how this should go.

During this Pride month, think about it. I would bet for most of you, this isn’t a daily occurrence. I would bet that for some of you, you won’t even have the opportunity to practice because you don’t have people in your life who use, for example, “they/them” as their pronouns.

(Maybe, if that is the case, get out and meet some new they/them pronoun using wonderful human beings.)

Today I’m wearing a t-shirt that a dear friend of mine created for a youth camp in 2022. It says: God loves all Their children.

It really pisses some people off.

Using neutral pronouns for God is somehow more offensive than violence against our trans beloveds. I just don’t even know what to say.

Well, I guess I’ll say this: God doesn’t care what pronouns we use for Them. They care about radical love and acceptance.

Period.

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Happy Pride!

As I continue to recover from my brain injury, I am cheering on my queer beloveds from the sidelines. As you walk and sing and look absolutely fabulous, I hope you also feel safe and loved and like you belong.

So here’s to drag queens and kings, trans youth, rainbow wearing lesbians, old time gay men who walk the parade as they walk through life - regally and with determination. Here’s to the newly out (may you find only love). And here’s to our bi friends who sometimes have to fight to be believed. I see you. Here is to the queer kiddo, heart pounding in their chest when they see someone that looks like they feel.

And, love to the one who is healing from violence. Love to the one who got kicked out from your home. Love to the one who cannot, for whatever reason, even crack the door of your closet open an inch. Love to you who are queer who has no sense of belonging.

Here’s to the ones who push us to explore how to use pronouns. Who raise their littles without gender expectations. The ones who have been, in large part, ostracized by a church that claims to be based on Christ’s love. The ones who have fallen victim to misquoted or misunderstood biblical literalism.

The ones who have spoken up and said, “there is no sin here in this loving relationship. There is no sin here in this consensual connection”. The ones who long for, seek out, and create a chosen family. The moms who are offering free mom hugs and the ministers who are, this very weekend, asking for forgiveness for a church that has condemned you to a hell that doesn’t exist just because those in the walls of a building are afraid of difference.

You are loved beyond what these human hearts can hold. God loves all Their children - but maybe, for June, you are loved a little bit more. It has to do with glitter and padded hips and face paint and leather, I’m pretty sure.

Happy Pride.

Friends, I’ve had the disappointing experience of not being able to use or even understand words much in my life right now. So, as always since September, (and lets be honest, we all need this kind of grace almost all the time), please forgive any typos or writing where you go “hmmmmm…that makes absolutely no sense.” I’ve had to embrace my limitations more recently and I’ve been setting one goal a day. That’s all I’ve been able to manage. One goal. Today, it is getting this to you. I’ve brought over some writing I did in March but hadn’t yet shared. This is that writing. Thank you for your generosity.

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"Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.” Dr. Martin Luther King, Jr.

I’ve been thinking a lot about connection, relationship, friendship- but also love- that can be sparked by just a fleeting moment and create deep belonging for a lifetime, I’ve been thinking about lack of connection, aloneness, separation -but also pain- that can be sparked by an emptiness and create deep shame for a lifetime.

Both are true everywhere we are and everywhere we go. And, sometimes, we may find there is this impermanent barrier through which we flow. Back and forth, belonging and shame. Back and forth.

And, I’ve been thinking about why some of us are at least a bit more sheltered from brokenness in relationship than others, I’ve been rolling the idea of privilege around in my brain.

I still feel confused a bit so you probably will too. Which, maybe, is the perfect place to start.

Relationships are a privilege and I’m not sure I’ve ever used that word exactly in that way before. I’ve been absolutely naïve. It’s like that picture of the world where points of light exist all around and are connected by energy and dots of light, around and around, seemingly connecting the planet.

And not so much that I’m privileged to have my son or be an auntie or even best friend. I mean, I am of course. Those relationships and so many others are deep and built on time and showing up for one another and navigating the pain and joy and grief and changes of life together.

What I’ve been reflecting on is how we are present to one another. And, how we are sometimes cruel. But, even if you have just one person in your life, life becomes a bit more manageable. You aren’t so alone in grief, you aren’t so alone in joy. You have someone to tell your stories to, back and forth, reminding one another of the “times when”, moments that were shared and have become the story of your shared life.

Or, you have someone to remember; their smile, their outreach, when the days are long and you are often alone. (This is why it is essential to look for and act on moments of connection, even if they are brief.)

Think of your community, your people – the people you’ve come across in your life who somehow just seemed to fit without hard work. Sometimes we find these people in a job or a faith community. Sometimes at an AA or NA meeting. Sometimes in a local theater performance of the 1940s Radio Hour. Sometimes in school, people we share third period with when we pretend to be learning math when, what we were really learning, is how to belong to one another.

But that’s not really what I’m focused on internally right now. What I’m focused on are the light points of connection that some have, some have lost, some long for, some will never know – at least not in the way they need to, in order to feel that they belong in this world that, has always and even more so now, felt empty and devoid of any connection at all. It isn’t that the light isn’t available, I think that isn’t accessible.

And, to be clear, the light of belonging is for everyone and, if true, we all belong to it.

What I’m talking about is the light that we create as human beings that only sparks when we take the time to blow on its embers.

This is a critical difference. We all belong to one another and that belonging, if we could visualize it, would look light a T-Mobile add (lights across the planet). But we also have a responsibility to build connection and communities of belonging where people FEEL love in the form of food, safety, healing and hope. This one is on us. And if we could visualize it, we would see that we have, by our ignorance and ignoring, lost one another in a messy ball of lights like the ones we throw away each year that have clumped into a forever tangled string. They remain that way while we fritter time away, too busy to do much more than take care of ourselves.

And, that is fair. Take care of yourself. But, please, seek to reach across boundaries and boarders so that those light sparks can begin to draw one another in.

I talk about relationship and connection as something that emerges from privilege because it does. I look around my life, how I’ve found people with whom to journey, how I can find someone to be here with me when I’m alone, how I’m deeply rooted in a family that has created the foundation and structure of my life. I look around and see people with whom I’ve traveled, who I’ve met over time, who I’ve hurt, who I’ve confessed my unkindness to, who I’ve reconciled with, apologized to, sung with and prayed with and cried with at the lack of compassion. And those with whom I’ve struggled over what it means to live gently on the earth so that people and planet will not be destroyed but thrive.

All of these things, all of my relationships, come because I attended church or school or have a tight knit family. They come to me because I’ve paid for workshops or paid for college, had the good fortune to attend grad school, have held a job. My relationships are mine because I have food and a place to rest and Siri as close as my hand to find directions to an event in the city. These special people, without whom I would not survive, are people I dedicate care to and they, in turn care for me when I need them. But I have a house to visit, theirs, when I want to bring them dinner and I have a house to visit, mine, when they want to drop of flowers and well-wishes.

And digging even deeper, not only do they have a house for our dinner, they have a warm house, one with dishes and silverware and toys for their child and a filter for their water.

My point, I guess, isn’t that these things are needed for connections to be forged, but they sure as hell help.

Now, people make all sorts of connections and build all sorts of relationship without the trappings of worldly “success”. And in many ways, they forge relationships because of shared experience and pure grit. They maybe aren’t sure what it takes to belong (they are treated as outcasts and they are pitied but not embraced), but they long for it, and they fight for it. And it is harder. It is hard to forge relationships when one moves all the time, or doesn’t have stable housing or is always deeply, achingly hungry, or is alone and can’t leave the house, or is old and forgotten, or is an addict. It is hard when one lives in the shadow of society and culture and is invisible or pitied or ignored.

And, listen, we are not getting better in this. I mean, people. Shit.

I’m sort of getting into the weeds of this so let me just bring you back to my image of light and see if it helps make sense of my musings today.

The way I visualize connection is through points of light that are connected, heart to heart, by rays or beams or ribbons or threads (take your pick or, if you have another visual option, share it with me in the comments!).

I believe the way to belonging is when all the points of light, all the hearts of us: people, the planet, life, are connected by those beams of light, brought into a world where all people know radical love and acceptance. All of those light points – harmony! This connection takes work and persistence. It takes a willingness to be bold when living as a peace maker. It takes courage to reach beyond one’s own point of light to draw another in. It takes the honesty towards oneself to know that we are not always in connection ourselves.

It takes education and a willingness to give away power over others.

It takes openness to be drawn in by others.

This web of life is not static or stagnant. It lives and loves and breathes and changes as we change.

My privilege shows up when I don’t feel as connected to this web as I am invited or loved to be. When I’m alone, I have at least one person I can call. And I have one person who will come over right away. I can afford Doordash when there is a type of food that would remind me of the past or strengthen me when I’m sick. I have a home where I am safe and warm. And a tv when I want to stream a comedy and laugh. I have friends who check up on me. I have family that will accept me and catch me as I’m falling. They will buy me a plane ticket to come home to them when my depression is overwhelming. I have education that give me status and they have put me in front of people over and over who have honored what I have to say and teach. My gifts are being used and appreciated. I’m on medication that I can afford.

All of these things are truth wrapped around me like a blanket of privilege that can, even in the darkest of times, assure me that there is and will be light.

(I know there is darkness in and around me, too. I’ve lived in depression and I’ve known her by her full name: abyss).

But, when I went looking even then, I saw that point of light and I walked, day by day, step by step, towards it.

When I look honestly around me and see people stuck in despair of all sorts, I notice, if I’m really paying attention, a faded or fading light of connection. And it breaks my heart. Bright light belongs to all of us.

And this one is on me. On us.

This is the darkness, the brokenness, that comes from having little that is valued by we who have much. When I imagine this great web of life that I know connects us all, I see people who assume they will never see light again (if they ever did to begin with). People who wait for me to look them in the eye as I rush by.

I must not care as much as I think I do. Because I do little when I see a faded light. Even when it is my own.

But. And. There is belonging of all sorts and in all ways. And to think that I have that and someone who is different than me doesn’t is to be ego focused and unkind at best. Judgmental and hateful at worst. Or even violent as they are stripped of their dignity and belonging through any number of means this country seems to be ok with right now.

How the F are we ok with this right now?

My community has a principle we hold as central to who we are called “The Worth of All Persons”. I pretty much believe that what those words mean are that everyone belongs in the light. Everyone belongs.

But we actually must not believe it at all – or believe it enough to fight for it. Because there are hearts of embers and ash everywhere. Maybe what we are saying is that we will work for a world where each one knows and lives with light connecting them to all others. To our planet. Those without our privilege. Those who have decided there is nothing more for them.

And that we will do that work in hope.

And if we are saying that, we had better get to work. We are losing, and embarrassingly so. The time is now and the world is darkness like I’ve never seen in my life. We don’t have to search for those who have nothing, not even hope. We simply have to turn around and look.

See, there is someone who needs you to tell them the story of belonging. Someone who needs you to look beyond your privilege to unwrap for them the places where they already belong. They just need to see it and feel it in their bones. Someone who needs you to invite them to heart connection through food, shelter, education, equity, a lack of poverty, celebration of who they are.

Someone who wants to invite you into their world, as well.

Someone who needs you to fight for them.

And maybe you are that someone. In life, at one time or another, we each are.

And what I would tell them if I could prepare them for your outreach is: Beware. People with privilege have no idea what we’re doing when it comes to walking with those who don’t. We are forceful and ignorant to the struggles, and we think we are right.

Maybe, what I would tell them, is that, in fact, mutuality will be the only way we get through this. Believing that we are in this together and that belonging is both a journey and a place.

And I guess I think that we will know when we are there because light will have driven out all of the brokenness. I don’t expect it to happen anytime soon, but I can’t give up hope that it will.

If you believe in the worth of all persons, in the worth of the planet, then stop with me, just for a few more moments, to look around and see what is not visible – broken threads of light that for some people are newly clipped, and for some people never existed in their memory. There are plenty of opportunities for you and I to be whole-makers, light-bearers, love-sharers.

And, just like people need us, we need them. No one is above the other, no matter the strength of the beam of light that touches them.

Maybe you are in darkness yourself.

All of this is to say, get up and off your ass and look around (And that sounds harsh but I say that with so much love). You may be the one who needs to share the light right now. Or stay wrapped up in your blanket of comfort hoping your housing comes through any day. You may be the one who needs to sing a song of light for the world. Even if you hum it.

I don’t know the tune, friend. But I know it will come from your soul.

We cannot say that we will change the world with our compassion. Because we aren’t.

What we can say is that we have the privilege to walk in the light (if indeed that is so), sometimes bright, sometimes ember, and that everyone else has light in them too. What we can say is that when we lay down the trappings of privilege, or the fierce protectiveness of our life because of the scarcity we find, when we see the hand that reached into our depression and pulls us up, or the conversation that is worth stopping for, we will, as the hymn says, be singing a new world into being.

I think, maybe, that this is what’s called for here: A song of light. A tune that is brighter than we can see and sweeter than we can hear. Maybe belonging is this song when all of our lights are connected and we can sing, with gusto, that we are living in the light together.

That song will not be sung unless we, those of us who talk about the worth of all persons but who only provide the bare minimum of connection, get over ourselves and begin again – loving everyone with a love so fierce that we all find ourselves in the melody of light. All of us, heart to heart, shining.

And so, may we shine.

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This morning I’m returning to a story I wrote in 2021 to my, at the time, favorite food - Brussels Sprouts. Come on, I was looking for anything positive in the world at the time and, it turns out, vegetables fit the brief. COVID was raging and I was often alone. I needed a Brussels sprouts size of joy.

I’ve been reflecting on that time recently and comparing it to where I am in my healing journey. Here, first, is the story from 2021. And then below I’ll add some thoughts from 2026 Shandra.

Dear Brussels Sprouts,

Let me start by saying “thank you”. You’ve been a constant companion for the past 18 months. Salt-kissed, oven roasted, bright green, delicious. Every single time. Delicious.

Your crispy green leaves, just a few, clinging to my favorite bright yellow bowl. Salt and pepper flaking the bottom and a silver fork resting on the lip.

Delicious.

I sheltered in place most of 2020 and a lot of 2021. One time I ordered grocery delivery and, of course, ordered some Brussels for dinner. I put “one”, thinking I was ordering a pound. What came to my doorstep was one sole sprout. And I loved it.

You are a strange joy-bringer. You, a vegetable either loved or hated. But you were a friend for me and it was a gift that, even strange and unusual (how often does one talk about the gift of Brussels Sprouts?), was meaningful and life-saving.

I think it will be interesting for us humans to look back on this time and talk about that which saved us. For me, Brussels Sprouts, a baby named Carson, and Fresca. Zoom too, I guess, but differently.

Each of us will have a story to tell about the place they found safety and, sometimes, tenuous joy. In the midst of a daily repetition, a bird song. When the room became so small from the walls closing in it felt difficult to breathe, an Iris. From a bed on a ventilator, a dimmed light and a nurse-squeezed hand. On a packed airplane filled with fear and desperate people, a bright yellow mask the color of the sun. When hanging an “out of business” sign in a window, a memory.

Sometimes, often, that was all we had. A memory.

This terrible time isn’t over, of course. There are vaccines to get. Please get vaccinated. There are beds to fill. Please remember the sick. There are beeping hospital noises to quiet. Please pray for the families of the dead.

I know it seems impossible to figure out how to walk each other through this - and stay together. We are so different. And often, so selfish.

But meanwhile, the pre-heating oven has beeped. The knife has cleanly done its chopping job. The olive oil has coated and the salt has kissed. It is time to spread those sprouts thin on the pan and roast them. 410 degrees, 12-ish minutes.

To you who is reading this: I look forward to the day you can stop by for dinner. It will be once this painful, deadly, unbelievable, tragic pandemic is over. To be honest, I don’t think it will be for a while. But come by as soon as you feel safe and you can. I’ll be waiting and you know what we’ll be having.

I eat them every night. Like a green salty mantra. I’m pretty sure I will make you a convert.

See you soon.

Shandra

Ok - 2026 Shandra here.

I’m entering my 37th week since I feel in my home and sustained what I suspect was a traumatic brain injury along with what has now turned into post-concussion syndrome.

Over 9 months. 5 seconds of my life that has turned me into someone completely different and has taken away so much from me.

On top of my difficulty assimilating new information, learning a game for example, or reading beyond a 5th grade level (well, reading to comprehend). And, on top of not being able to go places with a lot of stimulation like lights or sound or a need to turn my head side to side as I look for groceries on shelves. I am now dealing with overwhelming and paralyzing fatigue. Sometimes it lasts a day. But, it has lasted over a week before.

When this happens, I’m not “take a nap” sleepy. I’m stuck in a brutal in-between place where I’m unable to participate in life. I can’t, on my worst days, even be bothered to look outside to hang with my favorite neighborhood birds.

This overwhelming fatigue comes with so many chronic illnesses. I’ve had something like it before when my Dercum’s disease or my fibromyalgia comes in strong. But not often and never quite as bad as it can be now.

And, even in my “good” energy days, I am still pretty much done with the day by about 2:00.

I am tired like COVID tired. The tired that, for many of us who had COVID, brought tired in a way many of us had never felt tired before. COVID tired was a little different, at least for me, because I stayed in bed and slept on and off throughout the day. I can’t do that now or I would never sleep at night.

But there is similarity to be found in the fundamentals of the fatigue: Overwhelming, frustrating, uncontrollable, disturbing, and hopeless. That kind of fatigue, during our COVID years, that felt like it would last forever and, for those with long-COVID (those often misunderstood and forgotten), it did. It has.

But for most of us, we would wake up a few days after our COVID time started, and feel ok. Maybe not better yet. But ok. And part of that ok-ness came because we felt a shift away from fatigue-despair into returning to daily life. Which was great even though daily life was sheltering in place, staying six feet apart, masking and ordering groceries online.

I want to say here that I am a firm believer in the science that told us all of these things were vital to our survival. They weren’t perfect. Not all of us survived.

But, here’s the thing.

The me that is now “Shandra 2.0: The Great Fall of 2025 and Beyond”, feels like I have COVID. The old school COVID. The COVID that knocked us on our asses and took a lot of things away from us.

I am that tired if not, in a different way, more so.

And I have returned to the “I can’t leave my home” space. Just like in 2021. I am back to ordering my groceries online. I have to be discerning about how I spend my energy and who I spend that energy with.

I am sheltering in place.

The painful part of all of this is that you do not have to shelter in place, too.

The world has not stopped. Essential workers aren’t the only ones leaving their homes each day. Most of you (not all, I know) are able to go and run your errands and visit your friends and play with your children and grandchildren.

Most of you can attend graduations, in person, that are happening in person. Most of you have found some relief in vaccines which, even if you get the flu or COVID, has made those times of illness much less intense.

I feel like COVID is once again ravaging my life although I call it TBI. And I’m stuck in one place and I can only watch as the world goes by.

I feel, I guess, alone. Not because I’m here by myself but because you aren’t at your home alone (or with your pod) as well.

Now, I don’t want you to be stuck at home. And I want you to live a full life and dance through your days. I want you to live your life struggles and joys and hopes and brokenness out there. In the great world.

I want you to thrive.

But, as you are doing so, I want more than anything to thrive too.

I will say this. Stepping away from my deep fatigue (that turns my life to quicksand), I’m re-building a life. When I’m not tired, I’m creating. I’m writing and creating visual art in new and unexpected ways. I’m having friends over and contributing to the world through my making of art-cards (more on that another time).

It really is the fatigue that has been getting me.

I don’t think, five years after I wrote my letter to the Brussels in the world, that roasted veggies are the answer this time. I rarely have the energy to roast them and my food options have become very limited due to my body somehow deciding that I have safe foods I can eat, but anything outside of that list of maybe 20 things are a no-go.

So what does bring me joy? Where am I finding that encouragement and connection? If not Brussels, then what?

My answer, today, is my art. As the creative part of my brain opens or unlocks now pathways that are grounded in color and pattern and new skill, I find hope there. I tell my story there. I pay attention, watch my ever-changing life but also do more than watch it.

I live it.

Brussels brought me joy because they were common and steady and delicious.

I find the same thing in the circles that I draw, over and over. Common. Steady. Saturated.

Delicious.

I’m so grateful to this morning and to Shandra of this day for having the energy to write this. I didn’t know if I could do it. And, please forgive any typos. I can’t proof this anymore than I have already. As you know by now, I’m tired.

For dinner today I’ll likely have something not quite as good for my body as Brussels Sprouts. The original chicken Cup Noodles or some mac and cheese. Maybe an apple and peanut butter.

But, just as I found comfort in the salty yummy-ness of the sprouts, I’ll find comfort in the warmth of food well known.

I guess all of this is to say that I hope you have a good day. I hope you can in some way connect to something joyful.

I hope you know, even if only through reading this, that you are not alone.

I look forward to the day that we can meet at El Pico for dinner. It will be once my painful, unbelievable, tragic situation has softened and I’ve been able to navigate some healing of my nervous system. To be honest, I don’t think that will be for a while. But we can meet as soon as I can drive. If you get there first, I’l take that yummy shrimp with veggies and cauliflower rice dish they have.

I promise myself that time will come.

And how I look forward to it.

See you soon.

The story below was written for the closing ceremony of a camp for high schoolers that occurs every July in Southern Iowa. I’ve been a regular part of this camp, that sees between 400-600ish campers each year. As you read it you will see that, one, I am a retired preacher (it is very sermony) and, two, it will give you a glance at what types of activities happen at camp.

The camp offers participants experiences with worship, leadership, performing arts, visual arts, sports and community. I have found that it transforms the lives of those youth that attend. Not 100% of them, of course. But most of them.

It has transformed my life too. This camp, called Spectacular (SPEC), brings together not only hundreds of youth, but over a hundred staff who are trained in youth safety and community building. These staff give up a week of vacation every summer to be there, and they pay a registration fee! I’ve never met such kind, loving and dedicated people. These are my friends who I have been working along side for decades in some cases. It takes a special heart for a person to give of their time and leadership to a bunch of beloved youth who need consistency, kindness, and a space for safe sharing and listening.

I’ve attended, in one role or another, SPEC since 1987. I’ve been a leader in worship, in singing, a comedy skit partner, a performing arts director, and a spiritual guide. I’ve witnessed true vulnerability from youth who feel safe, some for the first time. I’ve experienced miracles as 500 youth long for and work towards radical love and a call to action. I’ve walked with people in deep pain and listened to their stories. Some that have made me fall, later and when alone, to my knees in despair for lives broken at home. I have worked to create a space where authenticity is valued and kindness encouraged. And I’ve not done it alone.

I had the honor of sharing a closing statement for the camp a couple of years ago. The theme was “Hope in Action”. I want to share these words with you today. I think they might give you a great sense of what it might mean for us to belong to one another in hope.

And, of course, in today’s political and social climate, words of hope are needed more than ever! (I mean, what the hell is happening? Oh, of course, destructive and selfish control, power, and hate. That’s what’s happening.)

Which makes SPEC more needed than ever,

This all has a deep sadness around it because for only the fifth time since 1987, I won’t be able to attend SPEC. My brain injury has made it impossible. And I am brokenhearted. Re-reading these words, written a couple of years ago, helps ground me in what matters most: Hope for our future - a future of belonging where everyone is a part of something greater, and behaviors that are damaging and destructive are not allowed but transformed by the call of community which is to love all of us.

And, finally, I want to mention my mom on this Mother’s Day. She is the one who got me to SPEC in the first place. Where I’ve attended since 1987, she has attended since the 1970s. My mother has made the way for me to be engaged in the most meaningful work in my life - and we have done most of it together. I follow her lead wherever she goes because I know she has created a space of love with others in a way that builds and nurtures radical belonging and community. And I’m just grateful to be a part of it all.

She is the trailblazer and I am the follower. She has never steered me wrong. Happy Mother’s Day, Mama.

And so, to the SPEC community:

We have done so much hoping here, together. We’ve hoped for trust and laughter and equality. We’ve hoped for belonging and kindness and protection. We’ve hoped that someone would show us the love of God that is always, always there. And we’ve hoped that we would be a beacon of God’s love that would create a place of safety here.

And, I want to acknowledge that there isn’t always safety. There isn’t always laughter or trust or kindness.

And that is true for any of us. Life is too complicated and deep and challenging to have that all the time. We all know it.

But, also, hope.

When someone asks me what we’ve done this past week as community, I am going to tell them that we’ve done hope.

Hope in action that was a beacon when one of us was lost.

Hope in action that was your life-song when I forgot the words.

Hope in action that was friendship when I was lonely.

Hope in action that was the promise of love lived when I wasn’t sure what to believe in anymore.

Hope in action through high fives and missed volleyball serves and cello playing and too long ice cream cone lines in the dining hall.

Hope in action through deep prayers for the earth and one another.

In embroidery and conversations with people we had just met who felt like forever friends.

Hope in action through pickle ball and devotions of highs and lows and stories of love which I’m pretty sure is what this is all about.

Hope in action through forgetting quiz bowl answers and being told that it is ok. It’s ok.

Through ukulele and dance and through communion and that moment in community that was really, really, well, real.

The beauty in these hopes in action is that they are now in our collective memory and now we are changed.

We are new.

We have a story to tell.

We have a difference to make.

We have the taste of something the world longs for.

The hope we’ve been talking about all week.

It is time to get going. To play our last games and eat our last meals in the commons. To have our last nighttime devotions. To cheer on our teams one last time.

It is time to pack up and get ready to travel far and not far. It is time to say goodbye and remind each other that we are not alone and that we will always love this time and these memories.

It is time to know, deep in our bones, that when we look back on this experience we will see that what we have done, is hope.

Hope so loud that it can’t be ignored when we turn it into action focused out there. Action that, grounded in love for ALL OF US, becomes transformation that becomes a world of peace.

All of this is really important because there is a lack of hope in the world that is destructive and dark. It is causing brokenness that we can’t even begin to imagine except that we are living it. It is causing us to hate one another and fear each other and it will break us if we let it.

But the hope we found here, the hope we find in the stories and songs we’ve heard and sung this week, this is what’s real. This is where we find truth and light. This is where hope shines.

So maybe what we’ve done for one another, we can do for the world. I don’t know. Can we be this bold?

Can we say that we will no longer let hate divide us?

Can we say that we will change our behavior when it is hurtful and not respectful of the love we want to plant in this beloved community?

Can we say that violence doesn’t belong on this planet, lovingly created by God to live and breathe in peace?

Can we say that we belong to one another so deeply that when one hurts all hurt?

Can we act like this is true?

Can it be true?

No matter who you are or where you come from, this community is for you. And it is. It is for you.

But this feeling? This belonging? This wild hope? It has to be for everyone or it will fade and we will be here, next year, and nothing will have changed. It has to be for everyone.

That is our call: To love God and love one another. And to do it so that all of us, all of us, can breathe. Can live.

I hope for you peace and deep joy. I hope for you the knowledge that you are loved and welcomed and that you belong just as you are. Exactly as you are. I hope you will remember this time together with the knowledge that were a part of something meaningful.

And, if you forget this hope, I pray that someone around you will remind you that it is yours.

I promise I will do it if I can.

But, if I’m not around, I pray that you find it in the beauty of the world all around you.

And I pray a blessing on us – that our hope, put into action, will be a blessing to all of creation.

You are deeply loved. And I’m grateful for you.

May the spirit of belonging be with you and breathe through you on your way.

For hope.

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I have not been in storytelling mood so I’m sharing something I wrote a couple of years ago right around Valentines Day. Recently I’ve learned how tenuous even the strongest bonds can be and that friends aren’t always friends forever (there’s a little Michael W. Smith for those of us who attended church camps circa 1986). Losing anyone is a blow and a close friend, deeply painful.

This has made me hold onto my people even more than I was.

So I’m sharing a story I wrote a couple of years ago about two of my dearest and definitely my oldest friends. We are still going strong and I was overjoyed recently, to chat with each of them on my birthday.

You will see this is a bit dated but I’m keeping it as it is. I hope you can feel the love and I hope you have some love in your life today, too.

(Note: I will use the word “girls” here (because we were) even though the word has been used to demean and belittle me recently as an adult. When men call you a “girl” when, in fact, you are a womyn, they are saying that you should know your place. It irritates the shit out of me. There’s no reason for it.)

Girls

1973.

I can see it clearly – me in my page haircut at three years old, walking into the nursery at church in Canoga Park, CA. We had just moved from Chicago. My parents, avid and dedicated church goers, were faithfully going to church right as we were beginning to get settled into a new place and space.

I’ve heard that memory is a remembering of the story you told of the story you told of the story you told of the memory itself. (And so on.)

I’m not sure I believe that, but I have no proof either way. Nevertheless, I’m pretty sure that this image I have burned on my mind and heart is exactly like I remember it to be. Why think otherwise?

Sitting at a round, child-size table were two girls and I can see them as if they were right before me now.

One of those girls had dark, beautiful, think and full hair. The other, tight blonde hair pulled up and brushed to perfection into two curls held by those hair ties with plastic balls on them.

Why, in my memory, the only thing I remember about that morning is their hair, I’ll never know. But it is. Clear as day. Dark Brown and Blonde. And me, right between the two. I think the word for my hair back then was: Mousey. I can’t disagree.

No matter our beginning, we became the best of friends. I see us even now:

Riding (dangerously) in the back of the Volvo station wagon my parents owned, legs outstretched, driving to lunch or home to play.

Gluing our arms together with Elmers’s glue so we could tell our parents that, unfortunately, we had to go home together after church, because we were forever stuck and were now a pair. Or a three.

Eating at Pizza Cookery, sawdust at our feet.

Fighting over a boy with an actual shove into the bushes in the front of his house. (what were we thinking, J?)

Sitting on the top of bunkbeds listening to the Starland Vocal Band singing about Afternoon Delight. How were we supposed to know exactly what that meant? We listened to the record, over and over, hopping up onto the top bunk after it started and then, hopping down to re-start it when it was over. A rhythm that was both comforting and unnecessary.

Vacationing together. Playing together. Singing and doing church plays together.

Attending church camp together where I learned the ridiculousness of forcing kids to bow their heads and close their eyes before the prayer for breakfast. I still think it is ridiculous. Just pray if you want to. Jesus doesn’t care how you do it.

Climbing on rocks and walking on trails and swimming in pools. Being baptized. Twelve girls that day, all lined up in our white dresses, heading towards our fate, something which would free us and haunt us all at the same time.

Side note: I flunked table setting and was taken aside into the church kitchen to sit on a stool and practice, over and over until I got it right. I can see the other girls playing this game where you had to be on your knees., tapping a balloon back and forth over a low net like balloon tennis. Oh how I wanted to be a balloon tapper instead of a napkin folder!

We were, in all the best moments of those years of childhood, together.

Time goes by. I moved six years later to the Midwest, and they stayed behind. They forged a best-friendship. I didn’t get to be a part of their story for decades. There was no “three of us” then. Just life, passing time, going on about our days and years.

J got married and I flew back to California to attend her wedding. I slept on the bottom bunk the night before and J the top. What I remember about that trip is getting lost driving the LA highway in the LA traffic and missing J’s house by miles and miles, stopping at a pay phone to call and figure out where the hell I was. I also remember how beautiful she was, my dear friend, as she walked down that aisle.

M and I went to college together but didn’t exist in the same groups and so those memories are throw aways for me. She may feel differently. I can’t think of any reason we didn’t connect except that my severe depression kept me closed to the world. In fact, maybe we did have a relationship there. I have no idea. Mental illness is a bitch that steals joy and memory.

And then M turned 50. I’m sure that I was invited to her party because of our past and I was thrilled to go. I flew to California and J and I attended the party together. It was a blast from the past.

Another side note: I was wearing the ever-fashionable ripped jeans. When M’s mom (who has since passed away) saw me (after decades) she asked my in a growl if I couldn’t have found pants that weren’t torn to wear to the party. I loved her for the comment. The party was pure delight and it reopened our friendship in beautiful ways.

I won’t take the time to tell you all about how we have rebuilt that which had collapsed with time and a lack of attention, but please be assured that float tanks, Lake Tahoe, pedicures, and laughter have all been involved.

Over time, one of us has bravely come out and married her beloved, a woman who brings her deep joy. One of us has lost her mother, a loss that cuts deep. And one of us is facing a progressive disease, something that feels more manageable when I am with them and less manageable when I am not.

I’m telling you this story because those two girls are on a plane coming to spend this valentine’s weekend with me. It has been getting harder for me to travel so they are coming here. I’m also telling you this, before they land in Missouri, because I will be unavailable over the next few days. I will be laughing and maybe crying and definitely loving the memory of the girls we were and loving the promise of the womyn we are now.

Our hair is different now. Well, two of us. M’s hair is still luxurious, untamed and wild. J’s hair is free of the confines of those tight bands and curls. And my hair is a little more blonde and a little longer (a shag – still with a nod to the decade that created us). Maybe, actually, we are exactly the same.

What I want you to know is that old friends are the best friends. I want you to know that our stories matter. Even if they are pain. Even if they are love.

I want you to know that I love those girls, just beginning our journey of life and I love us still, just past the middle, still exploring what it means to be friends and beloveds to one another.

They land at 10:30 tonight and I already know what our first topic of conversation will be:

Matching tattoos.

I have high hopes but the answer will be no. Even with that certainty, the conversation as we explore the possibility, will bring me pure delight.

See you soon, girls. Fly safe.

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Hello!

I’m going to be honest; this post feels like something I needed to write today. I’m in my last day of being 56 years old and I’m feeling sentimental and needing to acknowledge the threshold before me.

So I’m writing this to get my story out from the inside. I hope it means something to you. And, my brain is not in good shape today so typos be damned, I’m sending this out anyway. I’m sharing these words from gratitude not from a place of fixing myself. I’m sharing these words because they are longing to get out of my brain onto this paper. I have no idea what they will mean to you. But I hope you will recognize yourself somewhere here. I hope this will have meaning for you, as it does for me. So here we go!

On the last day of 56 –

I end this year grateful, broken, healing, trusting, loving, in despair, hopeful, and sometimes not hopeful. Oh, and scared for us all which, in the face of everything before us, I think is terribly appropriate.

I’ve divided year 56 into two parts: The good and the bad. Before the fall and after the fall. Brain one and brain two. Shandra 1.0 and Shandra 2.0. I’ve divided you, 56, but that may not be fair. Am I living on a spectrum of being and am I living in a pendulum swing so far swung that it may never swing back to where it was?

Yes.

On September 8 I fell in my home and sustained a concussion, a mild TBI which has since become both Post Concussion Syndrome and a Traumatic Brain Injury.

And in a lot of ways that was it for me. And 56.

For three months, I mostly stared at the wall across from my spot on my raspberry sofa, heating pad on my back. I didn’t feel anything which, for someone with a disease that causes severe pain throughout my body, was great. I was numb.

People came and went, supporting me, sitting quietly, just holding space.

At some point I knew I was unable to finish a project that I had started -an event that I am passionate about - and it was passed on to someone else.

At some point I realized I couldn’t drive or leave the house due to concussion side effects.

At some point I fully retired. My post-concussion and TBI were too loud and demanded quiet attention.

At some point I started PT and then OT and then hypnotherapy and then somatic movement.

At some point I started creating art and my right brain began to unlock new ways of being creative while my left side shut down and stopped answering the door for a while.

At some point I began to be able to have a conversation with a friend.

At some point I lay on the floor, staring at the ceiling, listening to music that made me sad, and just stayed there. For a really long time. When I finally got up, nothing had changed.

At some point my disease kicked back in and I felt pain again after a few months of feeling nothing.

At some point I began to be able to feel and express simple emotions.

At some point I realized I couldn’t comprehend even the most simple of stories and I stopped trying to read or listen to podcasts or watch shows that I haven’t already seen.

At some point I found someone that I love to drive me to appointments.

At some point, I found out that I hurt a long-time friend so badly that he completely and suddenly ghosted me. This one was rough.

At some point I realized that I will never return to my old self. That the old Shandra died when my head bounced on the floor. And I realized that it was ok. And maybe even beautiful.

At some point, I decided I couldn’t watch football where heads bouncing on the ground is common and we value those players who get up, shake it off, and keep playing.

And at some point, I became an artist, exploring and producing art that I never would have been able to make, that takes skill I never had access to before I fell.

Most of that is about the fall. Which makes sense because most of you, 56, has been the fall.

I have a couple of thoughts about things that plague me. Things that I don’t need fixed by myself or anyone else. Things that just are.

I fear that in the most vulnerable state that I’ve ever had, I’ve over asked for support. I feel like I’ve reached the limit of asking for help and I have to think long and hard about who to ask to help me with things.

To be clear, this in no way comes from my friends and family. It is just something I wrestle with.

I fear that I’ve forgotten so much of what has happened this past year that my conversations with others will be affected as I long to remember certain parts of the relationship journey that are simply gone from my remembering.

I fear that I will feel terrible about this possibility even though I can’t do anything about it.

I fear that I’m not really sure how I interact with people and my environment. Am I so different that people are talking about how this fall affected me and changed me in terrible ways that I can’t see from the inside? Like have I become cruel or do I suddenly lack empathy? Would someone tell me if this was true?

I fear that I will never read again. Drive again. Watch an hour long streaming drama again. People tell me it will just take time but, eight months in, it feels like time is running out.

Mostly, though, I fear that at some point I will lose the new me that is rebuilding into a new, creative, and vibrant person. I’m firmly in brain #2/Shandra 2.0 and I’m content and happy to explore what is new and different in my being. The fall took part of my brain capacity but it added a lot of creativity that is expressing itself in completely new ways.

As I’ve said before, I don’t believe things happen for a reason. I did not fall because of someone’s plan or the greater good.

But I fell.

And so what is meaningful to me is that I have good friends who completely love me even when I don’t remember a story they told me. I have family that are faithful to me and walk with me each step. Who tell me everything will be all right. I have a home that has been a comfort. I have acrylic markers that create, over and over again. I have whimsy and vibrancy and laughter. I have a team of health care providers who understand that somatic therapy is what I can do right now. I have breathing and music and writing and journaling and I can read a fun children’s book to myself and delight in the simplicity of a deep message. I have color on my side: bright pinks and deep reds and smooth blues and growing greens.

And I have a deep sense of contentment now. While that is recent it is sustaining.

On the evening before every birthday, I journal a list of sorts where I use the words “I am…” as a prompt. Every year, of course, something different emerges. Again, I don’t try to change it or fix me. I do an honest accounting that lets me say goodbye and say hello.

I shed the old to make space for the new.

Here is a part of my list on the eve of 57.

I am fine.

I am whole today as I will be differently whole tomorrow.

I am an artist.

I am more meditation, breathing, and quiet listening than I ever have been.

I am retired due to my health.

I am a survivor of a concussion/TBI.

I am vibrant in spirit and being.

I am a friend, a daughter, a mom, an auntie, a cousin, a niece.

I am one who collects art.

I am a plant lover.

I am disappointed every time I miss something important for my family due to side effects from my fall.

I am broken.

I am healing.

I invite you to reflect on your year. How has it been? Where have you found beauty and where despair?

And, maybe take some time tonight to make your own “I am…” list. I find grounding oneself in a truthful accounting of a year honors the work, builds the foundation for the next year, and helps you say goodbye to what was before.

I’m nervous about 57. That has been a hard one for me to wrap my brain around. But time moves on and years come quickly and change is inevitable. So I’m going in knowing that I have finished 56 with grace and love, and a bit of clunkiness and I will enter 57 the same way.

Thank you, friends, for being a huge and meaningful part of my past year. I hope that we will continue on our way to belonging together with hope and a sense that we are not alone.

57 is ready to go and she is excited to journey with you. And with brain 2.0 we are bound to have a big year!

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Last night was the bird party in the tree behind my house. I missed it because I had ignored the Evite, thinking it was spam. It was probably for the best. I’m sure they had bird things to talk about, stories of flying and singing to share, and complaints about the short spring which seemed to come to early and depart just a day or two later.

I could have participated in those conversations, I suppose. But I would have mostly listened which I guess is a good quality to have at a party. I’m just not sure I would have a had a good time and I’m pretty sure Robin would have felt they had to entertain me.

So in the end, I basically watched the party through my binoculars. They knew it, too. And they acted as if it didn’t bother them. I mostly pretend that it is my backyard, after all. But the party venue, the tree in the backyard that is slow to bud and flower, is a haven for the birds.

Robin nodded to me at one point as if to say “hey” and I nodded back, “hey”. That was enough for me. Acknowledgement that I’m a part of the great story of birds.

The Bluebirds were there. They’re not big partiers so I’m pretty sure they were mostly there to defend the bird house. They got to that birdhouse first and started a family. Mr Bluebird has been seen sitting on that birdhouse for a couple of weeks now. I can only imagine his excitement as his family grew. I would bet, though, that once they got to the party, they enjoyed themselves.

The best part, probably, was that everything was over as dusk ended and night began.

Everyone loves to leave a party early. And the Bluebirds didn’t have far to go before they were home. 20 feet, perhaps.

The Cardinals were the hosts although Mr. Cardinal was the big draw, what with being bright red and all. I’m afraid to say that Mrs. Cardinal likely did all the work while Mr. Cardinal preened and looked amazing. But at some point, they were able to just enjoy themselves and their company.

I think Robin was invited because he had done a lot of the heavy lifting around the neighborhood, checking for sturdy branches when it was windy, making sure everyone felt like they belonged in my backyard.

To be fair and specific – the Backyard of the Birds.

This morning I saw Egret stop by the backyard for the first time ever. I was watching because I heard the honking of the geese family and wondered why they were back so soon. But they quickly flew away and a long bird with wide white wings landed in the Backyard of the Birds, announcing herself with those wide wings and her long neck.

I had been watching for Heron who was in residence last year. Even though it wasn’t Heron, I was delighted to welcome Egret. Everyone else was at their vacation tree or tending their nest so Egret came and went without much fanfare. I really hope she will be back. She classes up the place.

How lucky am I to be able to be in relationship with my bird friends. I don’t have much to offer and I’m often too busy to even pay attention, but they are cool with that and so it’s totally fine.

I have been nursing a broken heart, which is something we have all experienced, I’m pretty sure. The party of the birds offered me, just for a moment, freedom from my ruminations and a space for remembering that I am surrounded by the love of others. I am not alone.

But grief is a funny thing – one can lose a nest or get caught in an overwhelming wind, or even lose a friend, return to Backyard of the Birds, begin to feel better, and then wake to wind or a lost nest that has been tended to with love, and feel the grief starting over as if it had never gone away.

And, it hadn’t.

But the pain doesn’t mean that nest building isn’t worth it.

Building is always worth the effort, even when it eventually becomes ashes. In between the building and the burning there is joy and belonging that makes any pain worth that pain.

But it still feels really shitty.

Thank God Egret classes up the place because I’m too sad today. And anyway, I’ve been prone to swearing and mulling the relationship that has become broken over and over in my mind.

I’m grateful to live in the Backyard of the Birds. And I’m grateful that Robin, Egret, the Cardinals and the Bluebirds are such boisterous singers. Oh, and I loved those brief goose honks. They remind my that no one gets stuck. There is always a time to fly and always a time to return.

I’m pretty sure that singing is what will heal, over time, my broken heart. I’m going to start with a hymn, the “Hymn of Promise” written by Natalie Sleeth.

These are the first two verses.

In the bulb, there is a promise
In the seed, an apple tree
In cocoons, a hidden promise
Butterflies will soon be free
In the dead and snow of winter,
There’s a spring that waits to be
Unrevealed until its season
Something God alone can see

There’s a song in every silence
Seeking word and melody
There’s a dawn in every darkness
Bringing hope to you and me
From the past will come the future
What it holds, a mystery
Unrevealed until its season
Something God alone can see

I would add this as verse three:

In the bird there is a love song

In the tree a harmony

In the wind there is a calling

Bringing life to you and me

In the yard there is a family

Holding grief and hope to be

All together facing future

Seeing life is still to be.

I think that during dusk this evening I might stop by the big tree in the Backyard of Birds. I believe that I can hold still enough for them to know I’m there but forget I’m there.

In this way I plan to grieve. Even if it takes days. Months. Years.

I think it might take years.

I don’t think the pain will be as sharp or severe for years. It will become a quiet ache.

And I don’t think the birds will stay forever in this backyard, I’m sure they visit others, too.

But maybe, if we are both open, I can provide a bare tree branch and bird home, and they can bring me a hymn of promise.

And next time I’ll be sure to open that Evite. I love a good party.

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I’m going to take a minute for my brain. Maybe you will recognize something here that can be a support for you. Maybe you will see a piece of this story as what it is meant to be: Hope. Maybe you you will know that your own story is in motion; piece by piece, bit by bit, heartbeat by heartbeat, you are. And that’s pretty much an ok being to be.

I want to share with you how I am in my TBI journey. The challenges, stagnant pieces, movement, and newness emerging. Every day is different even when I do almost the same thing as the day before. And that, at least, keeps me on my toes.

I really hate to say that I’m better. Because my better isn’t your better and I’m still very wary of where those words lead. I’m still uncomfortable with “I’m so glad to hear you’re doing well!” As if I’m going to the store and shopping for honey-crisp apples. As if I can drive to, well, anywhere. As if I’m going to be able to go to the graduations of my niece and nephew in May. Better brings expectations. Better means today I’m more than yesterday.

I’m not better today, I’m just different.

I have some lovely new subs here, (welcome!) and so a quick update. On September 8, 2025, I fell in my home and sustained a concussion (mild TBI) and pretty bad whiplash which jacked up my neck. Ever since then, I’ve been fighting for myself. And the past seven months, as I’ve lived with an ongoing TBI, have been very difficult and painful and I’ve been numb, melancholy, angry, irritable and even paranoid.

But, I’ve had so many people show up for me in so many ways that I've never been willing to let go of myself and my journey towards the what’s next for my life. When I’ve forgotten who I am, there have been many beloveds who have, over and over, reminded me that I’m a bit of sunshine, a bit of storm, and a bit what the hell? I’ve laughed around my dining room table, I’ve shared with friends who sat in my flower chair and held space for me and my despair. Who’ve told me about their lives and hopes for their lives.

But I add to my fall a rare disease (Dercum’s Disease) that causes a hell of a lot of pain and sometimes keeps me from being able to sleep, or sometimes walk, or sometimes feel steady. And so I have layers and layers in my story of well-being. We all do. It is just that, right now, my layers are pretty much chaos.

As of today, almost seven months in, I’m pretty much past the headache, sensitivity to light, stay away from devices part of the journey. I can sit in light and I can navigate energy differently. I’m less sensitive, although not much. But some. Sound still gets overwhelming. My nervous system is less fight/flighty but, put me in a new -and especially unknown- situation, and my leg is going to bounce, my hands are going to shake, and I’m going to be unable to hear what you are asking and I’m going to be unable to answer you.

And, if I push too much, I spend the next few days feeling like I’ve been hit by a truck. My recovery takes a while.

While I stay at home, mostly, I’ve been to Michael’s (briefly) and the ER (seemingly forever) and to the park and to a friend’s house. I’ve been able to attend my cousin’s remembering service for about half and hour. I’ve begun to think of other places I might go.

My boundaries are stretching.

I’m also working diligently to strengthen my brain to do what I lost in the injury - reading, memory, comprehension, ability to listen to a podcast or watch any of my favorite streaming shows because I have no idea what is happening.

I can finally do about 9th grade work, but not a lot of it in a week. One or two things. And I still read kids books at home to practice learning.

My boundaries are broadening and I’m remembering.

But, to be honest, I don’t think much of that is the point for me. Those updates dip right into where I said I didn’t want to be. I just tried to show you how I’m better.

But I’m not better today, I’m just different.

And for someone who doesn’t think I’m going to ever return to the me with what can be called “brain one”, I’ve been living a somatic body-focused life that is actively creating “brain two”.

And I’m pretty sure I’m going to like her.

It does not make me sad that I may never be who I was. It makes me an explorer. It makes me a dreamer. And it has made me an artist and a color-focused thinker and I’m really very content.

If I could drive to places when I wanted to, and be ok nervous system wise, and if I could show up for family where and when I longed to, I would be just fine. I would allow myself to be deeply grateful for how I spend my days and for who I am.

Here is a brief look behind my dark blue front door:

Every morning I spend time breathing, doing a little self-hypnosis, reading a kids book, singing a hymn, drawing in my journal to a prompt, and writing for 5 straight minutes.

I make breakfast.

And then I create.

One of the gifts I’ve had in this space is that, while the left side of my brain is obviously injured (I can point right to the area of injury), the right side of my brain is obviously not. This is why I can tell stories, write, have meaningful conversations that I’ll remember most of. Well, maybe not most.

And so, I’ve become an artistic wild woman. I have rituals and routines that, at any point of the day, will have me using acrylic or alcohol markers, mixed media paper or watercolor paper. And, my new favorite: tempura paint sticks. I color swatch, express feeling through hue and shade, I draw - lines, and, mostly, circles.

I have certain types of artistic expression I work on at certain times of the day. In the evening, I spend hours - hours - creating images

And I’ve never done anything like this. I’ve never drawn a circle in my life. I didn’t even know that these types of supplies existed. I was happy to fall into the “creative” category while not being an artist. Now I’m happy to be an artist, relying on my right brain to keep me as a creative in everything I do - especially explore art in my day.

(Please forgive the shadows in my pictures. I’m working on it.)

My right brain is unlocking pieces of itself that I didn’t know were there and they are unlocking fast. Really super fast.

Here is where I started at the end of 2025: (It holds its own charm, I guess.). Can you guess how I was feeling?

The other images are where I am right now.

I’m no fancy art woman, but I do get to watch a brain change in real time as what I create changes day to day.

I’m having a blast exploring the corners of my mind. I can step outside of myself and see that reading a children’s book is building connection in my brain and that drawing a pomegranate is expressing connection that I didn’t know was there (that shadow, though!)

.

I’ve been inside while seasons have passed me by. But I’ve been creating and expressing the wildness of pieces of my brain.

And that has had to be enough.

I fall asleep to a playlist I call: Fall Asleep December 2025 (noting its date of creation) and I never make it all the way through that music; my sleeping pills work and do what they are meant to do.

And then I wake up, not knowing who I will be or become.

I wake up, water plants as needed, put whipped cream cheese on my bagel (mixed berry and cinnamon swirl), breathe in and out through my nose, sing a song, and begin all over again with a new day.

I’m not better today, I’m just different.

I’m drawn to new types of art - more bold, more abstract. I’m drawn to new ways of being me - more bold, more colorful.

And as I honor the me that is being created, circle by circle, I can see that I will never be the same again. Brain one is gone.

But brain two? Every day, she and I dance a bit (wearing non-slip socks) and draw a bit, and breathe a bit.

And I love her.

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It felt like such an ordinary thing to do, go to the Emergency Room. Well, maybe not ordinary to you. But very ordinary to me. When one has a rare disease that affects all the things – skin, nerves, organs, pain, mobility, more – sometimes it becomes difficult to know what is for-Shandra-normal and what needs medical attention.

I once had a psychiatrist tell me I was a hypochondriac. I had not yet been diagnosed (by Kaiser) with my Dercum’s disease (or, hell, my H-Ehlers-Danlos, plus a small host of other things that are just a part of me but need tending, medication, therapy) and she was mad because I went to Arizona to see the premier doctor and researcher focused on these diseases. Now, Kaiser docs would have never diagnosed me (it is too rare for many docs to know about), but they should have been happy that I now knew how to go forward with a better understanding of my body and life.

I now knew why I felt like something I was feeling in my body, something held there, was stuck, was real.

I never, of course, talked to that asshole psychiatrist again. Even though she told me how lucky I was to have found her and how lucky I was that she didn’t take an outside call when her phone rang during our visit.

Kaiser has a great option available, which is that you can change your primary doc if the one you have isn’t working well with you. And, mine was not. She was the one who was mad enough to send me to the psychiatrist. And she also chastised me and threatened to take away care because I went out of Kaiser to seek answers.

I have to tell you at this moment in the story that you may be thinking – wow, Shandra. You are overreacting. There is no way this happened like this.

But if you have a chronic illness or disease, you are probably thinking – wow, Shandra. This has happened to me too. Just like this. And you are maybe thinking – not only are you not overreacting, but you are also under-reacting compared to my experience.

I am so sorry for you, for me, for us.

As soon as I changed docs in Kaiser, I found a great doc who told me that hypochondriac isn’t really a word used anymore and that I had health anxiety. Which, in my case, is perfectly normal.

I’m going to give you the example which will lead us back to my recent ER visit.

I’ve had some heart issues in the past 18 months or so. And I’ve had all the tests. My cardiologist told me that what is going to happen is that the Dercum’s disease will continue to affect my heart and that, while at that time I was working with him I was doing ok, there would be a time when I was not. He gave me some guidelines as to how to know if I was having heart issues that need to be looked at which were helpful and relieved my concerns at that moment.

But it is not lost on me that there are some things connected to Dercum’s and my heart. And these things cannot be “fixed”. I just have to stay vigilant.

So, on Saturday of last week I had some pressure, some sudden neck pain, some elevated heart beats per minute. And I ignored those symptoms for three days, telling myself that I’m fine.

But, on Tuesday, in the early afternoon, my BPM was over 100 (high end) and had even gone up to 130. I decided to breathe/meditate my way into a lower HBP. It didn’t work.

My sweet parents were just coming in town and they drove into my driveway from the airport and I hopped in their car, and they took me to the ER. Which is where mom and I stayed for 7 hours. Short answer, my numbers (elevated blood pressure and BPM) stabilized, my EKG was normal, my X-rays were normal, too. I was right on the cusp of whether they would keep me overnight for observation, but the doc let me make that decision.

I chose to go home. And I’ve been fine.

The health-anxious person in me clings to my doc’s words “I’m glad you came in.” Words of validation. When I was already glad I went in, but didn’t trust myself. I should always trust myself.

If you have been to a packed ER, you already know a version of the story I have to tell. In my experience, all of us waiting have stopped deeply breathing and are swimming in an ocean of fear wondering how to get to the surface.

The ER is a place of desperation. It brings out the brokenness in us. Every test holds the possibility for “good news” or “bad news”. Every person is coming from their wounded self, and the nurses get the hits. Everyone has a story and would love it if they could tell it. Every person does not want to hear the story of health anxiety from someone else.

It is always this way, and it was this way on Tuesday.

However, once we were all there for about 4 hours, we all decided that we could build a small but supportive community in the hallway chairs. We didn’t say it out loud, but we began to hold in our hearts the young woman who was vomiting blood while sitting a few chairs from us. We held her mother, too.

We began to share snacks, and one kind person walked my mom to the cafeteria so she could buy me cold chicken strips. This man and his wife had been there because she thought she had the flu. Something I felt was not worth the wait. Something she felt was. And I have to believe her, just like I want people to believe me.

There was a guy sitting a few chairs from me and I could lightly make out his conversation with some other guy. Their politics did not align, and the first guy got up and almost ran away calling the second (more liberal) guy a “pedo” (which, in case you aren’t sure, stands for pedophile.) Out of nowhere and knowing nothing. God, I hate MAGA.

The woman with the vomiting daughter looked at me as if to say, “what the hell!? Did you hear that?”. And I gave her my best, “Hell yes I heard it” nod of the head and we rolled our eyes. We both landed in the very appropriate SMH space. What a world.

I was taken back for blood work. The amazing nurse (all nurses are angels, saints, and overworked humans) and I instantly became best friends. (Well, I tried to show kindness). There were two nurses chatting while I was holding still for my IV. One of them was eating a banana and had just learned how to actually peel it so that it wasn’t squished. He asked me, “Do you know how to peel a banana?” and I told him that I absolutely do – from the bottom. The nurse drawing my blood was amazed. He had never heard of this. I would like to think that his life was changed for the better because of what he learned. :)

Mom and I finally made it back to a room where I worked with an amazing doc who, although I know was exhausted, took time to listen to me and show kindness.

But there was a woman in her own room that I will always think of when I think of that ER experience. I never saw her, but I got to know her voice and I could have chosen her from a line-up based on her voice alone.

She was MAD.

She was so mad that it was taking so long, and over the whole thing, and she was about to pull out her own IV. She called a friend who was also mad and was encouraging her to do it and get out of there.

They were both MAD.

That woman talked with her loved one who had brought her to the ER and her loved one on the phone (I’m assuming that loved one is the correct category) and just continued to be mad.

She was mad and loud. What I think is that she was naming what all of us were feeling.

I lost track of her while the doctor was in to see me and, while my IV was finally being taken out soon after, I asked the nurse what happened in the saga of the woman who was mad and the IV. She said that the woman had removed all the adhesive and was close to tearing the IV out when the nurses came and helped her and she was on her way.

I’ve thought about that woman who was mad a lot.

I think we share a number of similarities.

We are mad. Mad at the world. Mad at how long healing of our hearts is taking. Mad that we are stuck in an in-between space that seems to have no end. We are mad enough that we are in so much pain, that we will do a lot just to get out of pain. Even if it takes pain to get there. We are anxious. We hold that anxiety in ourselves, but we also surround ourselves with people who are anxious for us. And we, in turn, are anxious for them.

We are completely over this.

Now, I do not know this woman at all. And I am putting my own insecurities on her experience which isn’t fair to her but may, nonetheless, be true.

What I do know is this: I am deeply, deeply grateful for the care I received in a packed ER on Tuesday. I’m grateful for the chicken fingers which kept me from having to dig loose pistachios from the bottom of my purse to have something to eat. And I’m grateful for the guy who walked mom down the halls of the hospital to get the food. I’m grateful for the woman who took the time to connect when a moment of judgement and rudeness threatened us, sitting in chairs in the hall for hours. I’m grateful for the nurses who were still open enough to explore how to eat a banana and open enough to learn something. I would not have been that open.

And I’m grateful for the woman who has the voice that told her story to those of us lucky enough to be in the back rooms to hear it.

Because of her anger, we all knew that we were not alone in ours.

The ER is a place of confusion, fear, loneliness, and anger. But it is also a place where we can find belonging in a smile and a chicken strip. I’ll never see those people again. But I will remember them. Even if I have to read this story to do so.

I hope that today, and always, you find people who make a difference in your life, even if you only meet them once. Someone who makes your path easier, someone who listens to you in the grocery line, someone who is kind in words or actions.

I’m happy I’m no longer in the ER although I know I’ll be back.

I just have to remember to put a new pack of pistachios in my purse. Just in case.

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TW: Mental illness, despair, loneliness.

If you aren’t up for that today, I get it. I’ll catch you next week.

The Avett Brothers, a band I love, has a song called “We Are Loved”. One of the most beautiful lines, that has been important to me, is: “I have felt alone, but I have never been.” I’ve thought about these words a lot, and what they mean.

Who or what is it that is with me so that, even when I’ve felt alone, I haven’t been alone? Is it some divine something that rests in and with me all the time? Is it that I have family and friends that love me, even when I don’t see or talk to them often if ever? Even if I talk to them every day? Is it that I am able to be my own partner, knowing and loving myself? Is it that I have a child, someone I would call my person even though I’m sure I’m only one of his people, as it should be. Is it you?

Do I believe I’ve never been alone? I’m not so sure.

I would like to believe I believe it.

This really isn’t about just me. It’s about us,

Over the past couple of weeks, I’ve lost two family members.

I think that they both experienced aloneness and, I’m almost positive, loneliness. Just like we all have.

I didn’t know either of them well. But my family is tight and so we love and support each other. And so, they were mine.

However, sometimes no amount of love can chase the demons away. Not theirs, not ours.

No matter how we think we know each other, no one can know our hearts so fully that they can see into each corner, especially the ones behind the wall called loneliness. I think we think we can know one another that deeply, wall be damned. But we can’t. And that can become so overwhelmingly painful that our lives are changed because of it. We can become smaller and tighter and more protective. We can become numb.

But I don’t think we stop there. Our calling as human beings is to be so vibrant with love and hope that it is surprising. Surprising enough to transform a person’s heart. Surprising enough to reach into dark places and say, “it’s ok. I’ve got you”. Surprising enough to believe that there is something possible for us, and that something is belonging.

I want to be really careful here. Each person’s life is their own and we cannot force anyone to change or believe a certain way or feel a certain way. Someone can be loved with a huge love and still feel unloved. Someone can be included in life in welcoming and compassionate ways and still not feel like they belong. Still feel broken.

And that is no-ones fault. Not theirs, not ours.

When I was in college and into my early married and mother life, I was very trapped in depression. I tried to mask it and I was over functioning, for sure. I called my depression the abyss and I met her every day when I woke up and said good night to her every time I went to bed. Which was often. Sleeping was the hallmark of our relationship.

I’ve thought about her, my depression, more recently, as I’ve heard many of my beloveds talk about our current climate and the great fear and overwhelm that they are experiencing. My broader community is mired in depression and it’s not looking great for us.

This situational depression can cause great pain and can become so loud that if one reads the news or hears the story of war, they find they cannot navigate life. And, if someone is prone to a broader mental illness, one can find that they don’t know why they should.

As I write this, I am clear about how sad it is, how lonely we are, and how much despair rolls from our broken hearts each day.

But I also have to believe that there is hope – even if it will only come when we build the connection of light that moves heart to heart to protect and inspire. If we do not sing songs of love to one another, there will not be love. If we do not move the boulder of loneliness to the side for the one who cannot do it themselves, there will not be hope. If we do not blow on the embers of apathy, there will not be action.

It really is up to us.

Which is why I have hope. I believe in us.

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Those of you who…

I started writing these next words a while ago. They are limited in scope which is where I hope you will come in. Who would you list here? Please add your own “Those of you who…” sentence in the comments. (See my examples below). Let’s honor all of us as we remind one another that, although we have felt loneliness, we are not alone.

For you:

Those of you who can’t sleep. Who have minds that won’t turn off. Who are second and third guessing what you said, who you are, your life choices, your future.

Those of you who are tossing and turning on sidewalks and park benches.

Those of you nursing your child in the dark.

Those of you who work when the night begins. Who are judged for that work. Who risk your lives, night after night.

Those of you watching something, anything, until you fall asleep so you can feel like someone in conversation.

Those of you who are in pain all the time, who dance with the demon of mental illness, who sing with the sirens of physical pain.

Those of you who have faced the evils of this world: racism, gun violence, homophobia, transphobia, sexism, domestic violence, systemic destruction, ablism, patriarchy in all its insidiousness and misogyny in all its shadows, Christian nationalism, individualism, hate, trauma (to name a few).

You are not alone.

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I am so damn tired.

No fatigue. Although I did yawn this afternoon. Once.

No fear or racing thoughts that will not let me sleep. Although I have been getting up a few extra times a night.

No sadness or loneliness or apathy. Although right now I tend to find self-preservation in ignoring the pain of the world. And, actually, I am lonely today.

No watching the news. Although I’m very embarrassed to say that I stay up to date on what is going on through Facebook posts. This keeps the lens through which I look to see the world consistent. But, also, I believe that Facebook is mostly a cesspool at this point.

I know what is happening and I always fact check to make sure they are sharing real news updates. And I weep and also try to educate myself.

Actually, is that embarrassing or smart? I’ll admit it is hard to know anymore.

I’m just tired.

It tends to make me feel insecure. Like I can’t keep up. Or like I sound silly when I speak. Or stupid.

It tends to make me feel like I take up too much space. Like my self-love flag has flown away and I’m shouting for someone to catch it and I’m being shushed because I’m too loud.

It tends to make me second guess myself. Like maybe I DO have imposters syndrome. Do I? I don’t think so. But, it turns out, maybe I do.

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I was serving on a board a number of years ago and we were having a very important conversation that many of us saw through different perspectives. Every time a man on the Board spoke, they spoke with assertiveness, strength, almost as if it was their right to say and feel what they said and felt. And, of course, it was.

And every time a woman on the board spoke, including me, we apologized first.

“I’m sorry to say I disagree, but…”

“I’m sorry, I see things differently, so…”

“I’m sorry, can I share my perspective…?”

100% of the time, we apologized.

I know that men often apologize, too, and that I am overgeneralizing. But in that meeting, no man apologized before speaking. And, anyway, this isn’t about them. Although it is actually all about them.

I speak with a firm voice. I’m strong in word and try to speak with courage. I have lots of curiosities and I ask questions with boldness. I want to hear perspectives, and I have worked hard to take up enough space to show that my perspective has value too.

And still, I am called aggressive not assertive.

And still I become the problem when I speak up and uncover patriarchy and how it, ultimately, will destroy us all.

And still, I hear how lovely I look. How much younger I look when I smile. How nice my hair is.

How I look is the least interesting thing about me.

It’s exhausting.

It is essential to note that this is my experience as a white cis-gendered woman. And what I am saying barely scratches the surface of my lived experience.

And, to be someone from any number of communities that aren’t mine, or that aren’t a white cis-gendered straight man’s, means to not only be expected to apologize, it means to mostly be quiet and agree.

Or, and I think for the most part, to not be invited to the conversation at all.

____________________________________________________

Today is International Women’s Day. This becomes meaningful only when all women are celebrated and honored. All women are listened to and believed. All women can use the women’s bathroom no matter who or where they are. All women’s experience is valued. All women are at the table with equal voice. All women are in leadership at all levels. All women are no longer victims of rape, domestic violence, sexual harassment, hate crimes. Are no longer ignored. Are no longer judged for not being a man (As if man is at the center. Which he usually is).

All women.

Members of the BIPOC community, trans women, queer women, non binary and gender fluid beloveds, white women, disabled women, women of all sizes and shapes, women who are sex workers, churchy women and atheist women. Women who do not live in the US.

I think you get it.

And, especially, women who are a part of any group I did not name.

We are so damn tired.

We try, as women, to bring our perspective, create from our experience, tell our stories. Stand up against fascism.

But for the most part, we are not valued. Women are not valued.

In fact, right now, we are at war with patriarchy and misogyny. And we didn’t start it.

This isn’t a one on one war. It is a system on system war. And, the ironic thing is, we do not want war. But we do not know what else to do.

And so we fight, we women. We sing and speak and vote and march and stand up and support one another. And we raise our children and hope for a generation that values what we overwhelmingly value: compassion, courage, creativity, shared-leadership, song. Safety, security, equity, connection, belonging. Nonviolence.

(I just caught myself writing words that softened what I’m saying so that people don’t get angry at or judge me. What the actual hell?)

And, also, if you identify as a man, I invite you to just believe me that what I’m saying is true but it isn’t about you specifically. I know lots of good men. There is difficult and important work for you to do in the world towards the good of all. You can get started any time!

I hope that today, on International Women’s Day, you will learn the story of a women who you do not know personally. The story of a woman who does not look or think or believe like you do. The story of a woman standing for what is just. A woman who is a peacemaker, an advocate for change and equality. A poet, a survivor, a pain in the patriarchy’s ass.

Even, I guess, if you find the story on Facebook.

I am so damn tired today but I’m going to choose hope and revisit the story of Valarie Kaur who wrote See No Stranger: A Memoir and Manifesto of Revolutionary Love. If you want to hear her story, too, hop on over yo Youtube and watch her Ted Talk.

I hope it stirs your heart and wakes you up just a little bit.

Happy International Women’s Day.

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I do not know what to do.

I can march and proclaim, “No Kings”.

I can put a cross of ashes on my forehead at church while walking by the posters proclaiming, “No justice, no peace”.

I can call my representatives and ask them to step up for human beings not for human power.

I can learn about how to be anti-racist.

I can confess that I am not, by acknowledging the very truth that the system of racism runs deep and that I support those systems because they serve me in some way. It is the system of oppression that looms over women and immigrants and queer people. It is the system that oppresses so many.

I can be honest about how systems of oppression serve me. And then work to change them.

I can sing songs of protest.

I can quote Martin Luther King Jr.

I can persist.

I can give money and resources. To children to families.

I can attack systems that promote violence and understand my place in those systems.

I can admit that being a white feminist carries with it privilege that women of color do not have.

I can watch the news and weep.

I can write a note to my lonely neighbor.

I can chant “ICE out”. Over and over. “ICE out”.

I can vote.

I can cry tears of despair.

I can raise healthy and loving children.

I can write poetry that places others at the center of the call for justice.

I can memorize this poem of peace and share it at an open mic.

I can volunteer to work with elementary school children to help them strengthen their reading skills.

I can work for equity.

I can offer belonging to all.

And, still, I will not know what to do.

I cannot sleep; I cannot bear to be awake.

I cannot help but become numb, I cannot help but feel all the pain in the world and feel it deeply.

I cannot weep; I cannot stop crying.

I cannot help but fall to my knees in prayer; I cannot help thinking that prayer is a waste of my time.

I cannot learn about systems of power without seeing my complicity, I cannot stop telling you that I can rise above those systems. That I am working against those systems.

I cannot rise above those systems.

I cannot help but get deeply angry when ICE murders. I cannot help but crawl back into my bed, bearing the sadness of the world, but having the privilege to bear that sadness from crisp cotton sheets.

I cannot escape my mental illness; I cannot be stable without wondering when the tower of cards built with medication, therapy, breathing, will collapse.

I cannot be healed. I cannot stay sick.

I cannot bear to imagine children torn from their parents and detained for no reason. NO REASON. I cannot help but close my eyes when pictures of those beloveds are shown on the 5:00 news.

I cannot hold all the pain in the world; I cannot be honest and see that we are broken; I cannot walk past a neighbor without holding their pain. Just for a bit.

I do not know what to do.

Nothing feels like it is enough.

Nothing feels like it will “work”.

Nothing feels like I am making a difference.

I am a “one drop of justice-work in the ocean helps swell the tide” kind of person.

I am a “brick by brick we will build a world of equity” kind of person.

I am a “whatever you have to offer, that is enough” kind of person.

I am a “do what you have the power to do” kind of person.

I am a “bends toward justice” kind of person.

But at this point, I’m pretty sure that none of that enough.

We’ve passed the point of simple steps, and we are now at the point of “it is going to take something I’m not sure we can even do at this point.” Something so large we cannot yet conceive of it. Which is why, of course, that we do not know what to do.

And so, I fall asleep tossing and turning because I do not know what to do.

And I wake up with a bit of fear and a lot of confusion because I don’t know what to do.

And I live my day sometimes in willful ignorance, sometimes doing my very best to confront the systems of oppression that are a constant scream in our world.

I ask of you this. Rather than feel sad or seen here. Rather than feel like I just don’t understand. Rather than try to craft words to reassure me that small actions make big differences.

Join me. Take a look at yourself. How you spend your time. Who you love. Who you cheer on. Who you harm. Who you hate. Who you pray to. Who you actively work against. Who you actively work to support. Who you are raising. Who you came from. Who you encourage. Who you show your deepest self to. Who you rely on. Who you would die for. Who you hide from. Who you sing or dance or laugh with. Who you are irritated by. Who you call community. Who you shrink away from. Who you miss because you are deeply, completely alone. Who you would hurt. Who you would kill. Who you would save.

I will do this exercise of honesty too.

I don’t think this will help either of us to know what to do.

But maybe it will break us wide open. Wide enough for all the hearts in the world. Maybe it will create a clear vision for us, calling us to compassion and action. Maybe it will say “Yo, you cannot stay here. Get going”.

I wonder if it might be true that I will never know what to do.

But, what if, as people who have no idea what to do in this swirling chaotic, violent, horrific world, we all decide to say “enough!” as a point of birthing, emerging, hoping, working, loving.

What if we never know what to do.

But, what if, as long as we move and move and love and love, it is enough. Or, if not enough, a start.

A drop. A brick. An offering. An empowering. A bending towards justice.

I mean, do we just try?

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Yesterday I saw the most amazing thing. The little pond behind my house had turned into glitter. Or diamonds. Or little crystals of light.

I guess I would say: It sparkled.

It sparkled and was so captivating that I had to stop and bear witness to the magic I found there.

Maybe you’ve seen that type of magic before. And maybe I have too.

But yesterday it felt like a promise, all sparkling on the top of water.

And I need a promise. I need sparkling crystals of light.

I have tried to wrap my head around what meaning I’ve found in life recently that I can point to and tell you that, see, it is all worth it.

But for a very long time now I’ve not only not believed that everything happens for a reason, but I’m also suspicious of people who do. (If you’re one of those people, now you know that we don’t agree on everything. We’ll be ok).

As someone who lives every day with people telling me things like, “I’m having a lot of pain but I can’t complain because yours is so much worse” or “I’m doing fine. My life is a struggle right now but nothing like yours is”, I want to free you of the guilt of not being sick enough, not having enough pain, not having a life so screwed up that you can finally say: This absolutely sucks.

Because pain is pain and struggle is struggle and brokenness is brokenness and we don’t need to compare, and you don’t need to convince me that you’re in a terrible place and I will not try to convince you.

Even though we’ve set up life to be a competition, it really doesn’t need to be. And, I will not pity you if you won’t pity me.

Please.

In addition to my pond being the most expensive pond in all of town, what with the diamonds and all, it is also the most loved.

Because of the geese.

Geese are their own kind of magic and there have been geese on my pond for weeks now. I’m not a climatologist (is that a word?) or scientist (surprise!) but as I’ve reflected on why the geese have been at my pond for so long this winter compared to last, I would guess it has something connected to the climate crisis.

I think they are confused.

Me too, geese. Me too.

But they lounge on the grass in my back yard. I’ve caught them walking in a straight line along the backside of the path around the pond. I’ve seen them all slowly swimming until something I will never know whispers to one of them: get up, get going and they all get up and fly off the water. They get going.

Yesterday I walked by my window, no shade lowered, and they froze with my movement. Almost like they were thinking: If we don’t move, she won’t see us.

I could swear they disappeared for a moment.

In her poem, “Wild Geese”, Mary Oliver says this:

“whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh & exciting - over & over announcing your place in the family of things.”

― Mary Oliver, Wild Geese

This poem is beloved by so many people, myself included, and I think, for me, this part, which is the end, catches my attention because I am “whoever you are” and I am lonely and I do have imagination and I can hear the wild geese calling to me.

And I long, as so many do, to find my place in the family of things.

In other words, these words speak what it feels to be human to those who may not feel a part of humanity.

I think, too, that I love this because it doesn’t give me answers, but a promise. The promise that, like the geese and the diamonds who bring magic to my pond, I, too, am magic because I am a part of the great belonging. Just for being me.

Just because I am.

Today, and for days and months and years to come, if we are lucky, we will see sparkling water and we will hear honking geese wherever we find ourselves. All it takes is open eyes and an open heart.

Of course, the problem (opportunity) then will become: What am I going to do about the pain and brokenness, the violence and destruction, the dehumanization and separation, the individualization and the power so hungry it shreds lives apart and celebrates racism and sexism, homophobia and transphobia, ableism, fascism, all the things that will come for each one of us. Yes, even you.

Like the geese, we are all mostly living and are stuck and frozen here until something we will never know will whisper to one of us: Get up, get going. And we will all get up and not only post memes and talk about how horrible life is. We will get going.

It turns out, that whisper which is actually as loud as a honking goose, that get up and get going announcement in our gaggle, has been a sounding alarm for a while now.

The world is crumbling.

So let’s get up and get going. We need to figure this shit out.

Because if we do not get going, soon there will be no sparkling pond, no swimming geese, not even a family of things.

I hate to sound dramatic but, now that I think about it, maybe the geese sticking around this year and marching on the banks of the pond, honking me awake in the morning, is actually their way of over and over announcing that all belong in the family of things. Not just me and not just you. All of us.

Today the pond is flat and a dirty green. No sparkles along the top of the water and, as I look outside my window, no geese.

I pray it isn’t too late. But, I also believe, if I’m being honest, that the someday when it will be too late is coming quick.

Get up and get going.

Get up and get going.

We need, my family, to figure this shit out.

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Single.

Inspired by Valentine’s Day. And life.

Inspired by life.

“Single by choice” is the phrase speaks to how I live my life. A long time ago, in what seems to be another world altogether, I found myself to be single after nine years of marriage. Over the 20 years since then I’ve found myself not looking for a partner. Not wanting to share my home, or life even, with another person. I’ve found myself happy. And with a lot of pillows on my bed.

I found that I was settled into the idea, and rather preferred it, of remaining single for the rest of my life.

Sounds perfect. At least to me.

Of course, I have love in my life.

I actually don’t subscribe to the “one soul mate for me” idea, because I haven’t found that to be true. I have many. People I’m in love with in a very unique way. I almost can’t describe it. But, I mean, hell, let’s give it a go.

It is love like a garden, a possibility. People who are layered and who unfold before me with authenticity and bravery.

It is love like a painting, like creativity. People who sing sacred community into being.

It is love like a bubbling stream, full of laughter. People who see the world through eyes of joy and openness.

It is love like a quiet conversation, partnering in the very best way. People who listen and give you a chance to say I’m sorry.

It is love like communion, a sacred moment. People who are connected, heart to heart, by the energy of the universe that created us. People who show up for one another and for all of us.

It is love like a creek, flowing and fluid. People who are willing to do the work that comes when things change.

It is love like a protest, loud and brave. People who speak up for others, stand up for what is right, sing the songs of healing, safety, and belonging for those who have no voice.

If you are reading this, you might be a love of mine. I hope that’s ok. I can’t get past it, this being in love. It has a forever kind of hold on me. And it affects all I do.

When I look at my list, I can see what I value in life laid before me. And I can name many friends, family, and loves who carry just a piece of soul mate for me. And I love them all.

In truth, sometimes I get super frustrated, annoyed, overwhelmed, confused and sad. And I look for people who can bring me rest and comfort. Because still, there is love. Sometimes I feel deeply alone and desperate for relationship. And I look for people who will respond to my sadness with presence and laughter. Still, love.

And sometimes I just sit in the wave of gratitude I feel for people and planet. And it is so strong the only way to respond is by weeping. Or singing. Usually both if I’m being honest.

So, “single by choice” is actually a misnomer. I would actually define myself this way: Loved, beloved, and one who belongs. It just turns out that, in the instance of me, I have chosen to be able to throw my extra pillows to the side of my bed where there is plenty of room. I have chosen to hang art that calls to me in all the places throughout my house that I choose. I have chosen floral chairs and pink sofas and lots and lots of amethysts sitting around my lovely, warm and safe home.

I don’t think I’ve given up mutuality in my life. But I have, for sure, given up hours of “so, where do you want to eat?”

So, love and being in love is magic and transformative. But I wouldn’t be done here without naming the truth that many, many people are longing for this kind of love, even right now. The people who are lonely, grieving, victims of systems that rain violence and trauma and fear on them. Victims of people who do the same. People who thought they would be safe in the relationship, but who aren’t. People who will go all day today watching Netflix so that the quiet of a lack of phone calls or texts wishing them happy Valentine’s Day will not destroy them. People sitting on a corner of the exit ramp too tired to stand up for a dollar or two. Who have given up on the ideal, on the dream of love. People who will stay in bed all day, just “making it” until Valentine’s Day is over.

Love has its work cut out for us.

For today, please know that you are deeply loved by me. Each of you who will read this is being held in my heart on this difficult/positive/hopeful/desperate holiday of love.

And if it would help, below you will find a “Practice for the Broken-Hearted”. It will be here if and when you need it.

Love, Shandra

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A practice for the broken hearted

This practice is for the broken-hearted.

There are many reasons a heart may be broken - maybe something that happened or is happening to you. Maybe for someone else. Maybe the world. And all of it, maybe for all of it.

Whatever you bring here, there is room for it.

You will need a few pieces of paper and some writing utensils that are colorful - markers, pens, crayons.

Seated, close your eyes for just a moment and feel yourself grounded in your chair. Feel your feet planted firmly. Breathe in and out, following the natural rhythm of your breath.

When you are ready, open your eyes, place your hands over your heart. One on top of another. Gaze softly in front of you and see your heart before you. Imagine it. Acknowledge, just for a moment, that your heart is keeping you alive - right now. Gazing softly at whatever image comes to you when you imagine your heart, say thank you.

Choose a color of pen that will represent the feeling you have inside of you right now. Choose a color that represents the feeling of brokenness you carry.

Draw your heart.

Add color to represent that which is inside your brokenness. You may have one color, representing a broken relationship. You may have many colors, representing the broken promises you made or made to you. You may choose a color to represent the one for whom you pray. However you see it, draw it. Patterns. Lines.

Hands over your heart, gaze at your image. Breathe in the feeling you’ve had as you’ve drawn your heart. As you breathe out, imagine light going out through your breath and imagine that this light carries your feelings through your heart and out to the world.

Let the world hold your brokenness.

Now, writing over your drawing (or around it so you can read it), write a prayer of gratitude to the world for holding your broken heart. Thank the trees for rooting themselves enough to hold your brokenness in their branches. Thank your best friend for listening and carrying your brokenness along with you. Thank the clouds for receiving your brokenness with the moisture they inherit and thank them for the rain that falls to cover your brokenness with the promise of growth. Thank Divine Love for creating the world that can hold all brokenness and still create new life.

Whomever you want to thank, write a prayer of gratitude for them.

(If you have no one to thank, I will loan you my gratitude for the geese in my backyard that take my brokenness and fly in formation across the pond so that I can find healing in feather and flight.)

Put your hands over your heart and let your heart know that you would like to read it a prayer of gratitude. Trust that this prayer will nudge something inside of your heart that will, in the end, take some of the brokenness away.

Hands over your heart, read your prayer out loud.

One more time, breathe in and breathe out.

You may have to do this exercise over and over again. Writing different prayers, coloring with different colors. Broken hearts need tending. If you cannot imagine yourself doing this now because of pain or separation or fear, ask someone to do it for you. They can draw their heart, hold their heart in their hands, write their prayer of gratitude and you can know that our connection is so deep - like those roots - that any shift of energy, no matter whose breath it is - shifts your energy too.

May it be so.

I’ve been tired.

I think it is because I’m exploring more options for my brain to keep healing. I’m navigating physical therapy, occupational therapy, hypnotherapy, deep somatic therapy, and art meditation and therapy. And I’m continuing to have dear friends come over for a meal or conversation and usually both.

All of this is wearing me out! My poor brain.

(Please note that I can’t even begin to write about the world and the brokenness we find. I can’t even press the keys. But we all know. We all know.)

Two other big things happened this week that I know are contributing to my exhaustion:

First, I felt sad for two days.

It seems strange to say, but, for me who has not experienced deep (or much of any) emotion, sad was both painful and hopeful. I cried for much of those two days. I dove headfirst into the feeling I had missed for months. A sadness that broke me open and said: this is really, deeply, shitty. Because it is.

A sadness that lasted two days.

It is a start.

Second, I missed hymns.

If you, like me, grew up in a faith community with a hymnal, an organ, a guitar, some singers, and harmony, you will know what I am saying when I say that five months without hymns are lonely months.

Until my fall, I sang hymns or songs that had become hymns in my own life, every week. My faith community is filled with singing.

And, while I was not attending “church” before I fell, I was still singing.

And so, I reached out to my therapist and told her I might be depressed (nope, just sad - and that’s done for now) and I reached out to my two dearest of friends and told them I needed church song (yep, and they came over with guitar and voice).

And we sang. One of my favorites: “The Gift of Love”.

I’ve been reading poetry to myself. And, now, I have a hymnal in the stack of that which engages me each day. I’m turning to a page and singing for my life.

If you find yourself deeply sad and longing for song, I’ll sing a hymn for you this week. Let me know in the comments if you have a favorite. Perhaps that becomes my “I’m praying for you”.

I’m singing for you.

That, to be honest with you, feels a bit more authentic and a bit more my style.

Amen.

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I wrote this essay over a year ago. I was in the hospital in California, March 0f 2024, so that puts this in context.

This is about finding my song. I’m glad I found it then because I, obviously, really need it now. I hope these words bring you the comfort of harp and guitar this week.

It started while I was curled up from pain in a hospital bed. The specifics aren’t important, but the morphine had been given and I was barely responding. I was curled up like a bud. It was a miracle that brought the harpist into my room (a miracle named Mom). The musician came in with her small harp and played the song of my heart for me. Over those fifteen minutes my body uncurled, petal by petal, giving into the pain and the pain meds and the music. Letting that music open me.

God is a harp.

And She the player.

As I look back now, I didn’t realize that the music of my heart, that song which had been ignored or treated poorly or was rotting, was re-awakened. I had heard it softly here and there. I had even sung a verse or two. But, if I had to choose a word to describe my song, it would have been “dormant.”

Next came my faith community’s world conference. It was a big deal for me. Out of nowhere my song tapped me on the shoulder and told me to sing! And so I did. With good friends, in front of the conference, I showed up singing. I would show up many ways that week, in prayer, in ordination, in running around getting things done, in relationship with others I love and others I met.

But, when asked if I wanted to sing before or after my ordination night, I asked for before. I wanted to be authentically who I am, show my community who I want to be. The song.

God is a song.

And She the singer.

How freeing to find my song right where I had left it, in the rows of that grand Auditorium. Right next to friends and families I’d sat there with along the way. The place made me, and I sang it’s song. I sang our song. The song of community. I sang it with vibrancy and I prayed that it would thrive.

These were the first two entry points for my heart song. A third came soon after.

Every summer I hang out with a bunch of rowdy and precious teenagers on the staff of a Sr High camp called SPECTACULAR. This was my first year as a new kind of SPEC leader and I was nervous. I was set to open the camp at an opening worship and my friends, who I deeply trust, asked if I would sing: What a Wonderful World. Sing before I spoke.

I agreed and was transformed in the singing. If a song can soar, this was my flying. I don’t know if anyone else liked it – a bunch of teenagers? Hard to tell. But that bud that had begun to unfold in the hospital, that had continued to open in the auditorium, that bud had become a fully open flower.

And then four:

It was happenstance, really. I was at a beautiful campground on Samish Island in Washington and ready to be a part of a new community for a week. I loved everything about it. It was beautiful and I had a few good friends there. Some from so far back, our songs were intertwined.

What I didn’t expect was that my friend would say to me: Hey, they’re having a music festival Wednesday night in the Gazebo and I told them you could sing. They’re in that building practicing. Go on over. Check it out.

And so I did. It sounds ridiculous but maybe you’ve had this moment, too. I walked through the door of that large space and somehow was transported back to that hospital and my opening, back to that Auditorium and my thriving, Back to that stage with those teenagers listening to what I had to say. I was placed lovingly right in front of them. My new friends. The ones who, for some reason, were singing my song.

I’ve never felt so welcome.

Turns out my song is voice and guitar. And friends. My song is relational. My song is soaring love.

I’ve been looking for a place to fit. For a space to hold all of my wildness. A place not to tame me but to take my openness and make it it’s own. I now know it isn’t a location. I now know it is a friend or two. It is, if you’ve ever heard me sing, you.

I sang a lot that week. More than I have in years. I sang and soared in the singing. I was made whole in ways I cannot explain. I left there deeply content, deeply connected, and deeply grateful.

Gosh, it sounds magical. And it was.

Soon after, I was walking through the new Kansas City airport on my way to gate B25. As I passed B27 I heard something that sounded like my music. A man playing guitar, just sitting there, in an airport chair. Playing his song. I sat with him, listened for quite a while, matching my breathing to his notes. And then I asked if he knew my favorite song to sing: “The Rainbow Connection” made famous by that superstar singer, Kermit the Frog.

He didn’t.

After I picked myself up from some awkwardness of asking a stranger music maker if he knew a song by Kermit the Frog, he said: Do you know this?

Fire and Rain.

Of course I knew it.

We sang that James Taylor song together, airport guy and I, and we sang it well. Soft. Like we knew people were milling around and wondering if they were really hearing a guitar which seemed so out of place. But bold. Like we knew those people needed a bit of that music in their own lives at that moment.

When we finished, he nodded and said “nice voice.” I nodded and told him “thank you. My name is Shandra.” He never told me his name nor did I know the other couple of songs he played. It was natural when I got up and moved on. It was time.

God is a guitar.

And He the player.

I reflected on the experience as I was flying home.

These sacred spaces: a hospital bed, a conference chamber, a stage, and a campground. An airport.

I haven’t spent much time on my knees in prayer lately. Hardly any. I haven’t wept at the brokenness of the world for a while. I haven’t gotten quiet in the face of the awesomeness of nature. Maybe you think I should.

But I’ve sung. I’ve sung and sung, and I’ve sung some more. And, in that singing, I’ve remembered who I am, and I’ve deepened into God’s heart as I’ve deepened into my own.

I’ve held a prayer for the earth in my song. I’ve held deep grief and sung true hope. I’ve opened, like a flower that is so beautiful it stops you in your tracks when you walk by. Suddenly you become one who stops and smells the roses.

I’ve always done that, stopped for flowers. But now, turns out, I’m one of the open flowers inviting you to slow down and listen. I’ll sing you a song if you do.

God is a flower.

And She the opener.

And so, here’s to the future song of my heart. The music that will wrap around the words and tune. Here’s to the prayers that will be sung, the opening of my soul, the feeling I get when I sing that all is right and possible and honest and true.

I’ll give you my favorite few words from Kermit as my prayer for this flight and then this “what comes next” in my life:

“What’s so amazing that keeps us star gazing, and what do we think we might see? Someday we’ll find it, the rainbow connection, the lovers, the dreamers, and me. All of us under it’s spell. We know that it’s probably magic.”

If you want to sing this song with me I’ll see you in August. I’ll be under a Gazebo, in Washington, on a Wednesday night, singing with my music-making, flower tending, prayer singing friends.

And so, too, God.

I’m going to name what you probably could have already told me. Separating oneself into parts while, tempting sometimes, or even a habit or a preference, does no one any good. I had forgotten, just for a moment, that one of my top values is wholeness and belonging. Wholeness of being, of living, of creating, of music and magic and art and song and thought and grief and dancing joy. And belonging. Belonging to one another.

Feels like a ridiculous thing to forget. But here we are.

All of us, whether we believe it or feel it or have experienced it, are called to wholeness.

And not wholeness of denial or wholeness of separation from others or wholeness based on power which, in the end, is false and destructive. No, wholeness that brings light into darkness and a song into the nothingness of our broken souls.

In fact, singing when I’m broken or when the world is broken or when my loved ones are broken is sometimes the only thing I have to offer myself, and my broken heart.

And, sometimes, it is the only thing we have to offer the world.

Note: There are a number of links in this post to songs through Spotify. If that is inaccessible to you, you can find them on YouTube. They are worth the listen.

I have sung and valued songs of political protest sung for the wholeness of community and the world, for a very long time. I specifically studied songs of the freedom movement, but I’ve always been drawn to songs that sing lives of justice into being.

If you are paying attention, you know that there are thousands of people who are gathering in community, marching for freedom, and singing these songs anew. The same but completely different just as, shamefully, today’s issues are still, for the most part, the same but completely different.

This time these songs are shared on social media, and one doesn’t have to be there in person to sing right along with them. From Bruce Springsteen’s song “Streets of Minneapolis” to Joe Clark’s “Believe Your Eyes” to a Facebook post asking people to suggest songs and chants for the marching for solidarity this past weekend and “This Little Light of Mine” being sung the country over. And “Ella’s Song”, linked above.

Whether you sing the songs of Joan Baez or Holly Near or Nina Simone, or Pete Seeger, or Sweet Honey in the Rock, Jesse Welles, Millicent Sarre, Woody Guthrie or John Denver, (or whoever it is that I didn’t mention but who has transformed you and us), you are singing for wholeness, singing to repair that which is being torn right from us. Right from our cars. Right from our parent’s hands. Right from our schools and churches. You are singing a world of justice into being. Even if that world seems so far away from what we are experiencing today, that we can barely hear the melody.

So, keep singing.

Keep singing.

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Every culture, every community, every group of people will find their song somewhere deep within their struggle. While every song is not mine to own or lead, I am called to stand by others and sing with them. I am called to march, creating sacred space where another’s song can be shared and heard. I am called to create the sacred space of witness so that my song and your song and the songs of all of us can be sung without the fear of violence.

Although, maybe, I am called to create the sacred space of witness for songs even knowing that violence might come knocking on the door of protest at any time. Knowing that the singers may, very well, be victims of a system and its false prophets.

Beloved’s we are - and have been - being murdered at the feet of false prophets. They are counting on our surrender.

But, over and over again we get up.

And, over and over again, we sing.

The song “They are Falling All Around Me” written by Bernice Johnson Reagon, founder of Sweet Honey in the Rock, has been a constant companion in my life. (Linked below is a version by Holly Near, one of my favorite protest singers). It is often a song sung to witness grief and/or tragedy and has been used to honor those lost during the Civil Rights Movement (Freedom Movement), the AIDS crisis, and personal loss that needs to be sung and held close.

This line always calls to me:

“I have tried to sing my song right.”

Today, and tomorrow, and tomorrow, I am called to sing my song right. And you are called to sing yours. The power of this moment in our living history is that we are called to, altogether, song the song of that which will bring freedom and wholeness to our community, country and to this broken world.

We are called to sing our song right.

Over and over again.

So keep singing.

Please.

Keep singing.

These reflections emerged from some soul-reflecting on why I found it necessary to break my essays into weekly themes. I had shared that my mid-week posts would be focused on my journey of health and healing which, sounded great at the time, but damn if I can’t separate that healing journey from my overall life song. I’m having a hard time lately and I’m tired and overwhelmed and confused. Tearing those feelings away from my whole being just so that I can write a neat little post about them and about me every Wednesday feels inauthentic and dangerous, actually.

If I start breaking into pieces that which feels already broken, I will not allow all parts of me, inextricably one, to heal as one. And so, I’m going to “sing my song right” and bring you along. I hope you will share your song, too.

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A couple of weeks ago, I wrote about words and asked you all the share with me words that have so much meaning, they are hard to define. Here is your list:

Language

Feminism

Pleasure

Disability

Healing

Gratitude

Grace

Justice

Broken

These words, as any words you would put on this list, as maybe all words, are fluid. Never will you know what I fully mean when I say “Healing” and never will I know fully what you mean when you say “Pleasure”.

This disconnect comes because we are human with human experiences that vary widely and human beliefs built on lives of love and hate and power and fear and joy.

We are not the same and sometimes we use words, stretched out over all of us, as if we are.

I’ve thought a lot about how I want to name what I will use as the words to describe my health journey and here’s a first draft:

On September 8, 2025, I fell and broke my brain. Some would call it a concussion, I would end up calling it the moment my brain broke. I have, since then, been exploring healing and working through the idea that wholeness for myself may very well look different than the wholeness I thought was mine to explore and live as the Shandra I was. I have now moved into what is called “post concussion syndrome” and some days feel better and some days feel worse.

This new experience goes right along with my dynamic and invisible illness and my identity as disabled due to a radically painful rare disease. It walks beside my mental illness. It affects all aspects of my life and demands my quiet reflection. I have decided to write about it here.

And so, this is how I will be showing up in this writing space. Sometimes I will speak specifically to my healing journey, sometimes I will not. But all of this is part of me and, to know me, I need you to know that I’m not well.

To know you, I want to know what it is that is brokenness for you, too.

Whoever and wherever you are, please let my words be love for you today.

**And please don’t let this part of this post that is about me become more important than what I’ve written above about our sacred songs of protest. While important, so important as we all are so important, there are bigger and louder songs to sing right now. I’m just singing harmony - and, to be fair, a little off key.

If you want to leave a comment at any time, about your longing for well-being, your loneliness, your fears, feel free to do so.

Or your favorite protest song.

Leave a comment

But, if you are feeling quiet and small, know that I am holding sacred space for your song today.

So, please, keep singing.

I want to link a song by Spencer LaJoye here and one by Carrie Newcomer. These songs have become comfort to me as I, for the first time in my life, since my broken brain, fall asleep to music. They are quiet and hopeful. Songs of hope and healing, right into my sleeping heart. Maybe you will find them meaningful, too.

Hello All,

Today’s post comes from Emily Rose, a minister focused on peace and justice, who I trust to be a guide and teacher in my own life and I think she has something to offer you today.

Emily is an unwavering voice for justice and contacts her elected officials regularly and with passion. I asked her to write up the below directions so that you can feel comfortable doing the same.

Her post is easy to navigate and I think you will feel empowered to make a difference!

I find this particularly meaningful as someone who can’t leave the house. I’m reminded that there are ways to engage and that I’m not powerless.

And, after this past week (month and all of 2025) I need to feel like I can make a difference.

I hope that you will read through what Emily has shared and then decide to do something.

Please note: The vote on DHS funding for ICE ( and a whole lot more) is Friday.

Which means we are facing a deadline. If you have time to call your member of the senate, please do so! Or, share this post with someone who can. Today if possible.

This is it. The way to make a difference today that you have been looking for.

Step 1: Research Who Represents You

The first step in building a relationship with the people who represent you is knowing who they are. A great place to start is visiting www.usa.gov/elected-officials. There you can identify who your congressperson and senators are, and you can also see members of your state legislature and even city council and mayoral offices. My advice is to make a list with all the names and phone numbers and keep it somewhere easy to find. Bonus points if you add them as contacts in your phone so you can call whenever you want!

Step 2: Decide on How to Contact

A good rule of thumb is that the more effort it takes you to make the contact, the more impact it will have. Adding your name to a petition or firing off a post that tags your elected official doesn’t require a lot of your time, but it also doesn’t require a lot of a staffer’s time either. It can get lost in the noise.

Many elected officials have contact forms in which you add your email address, type your message directly into their website, and await a response. In other cases, you can look up the email address for your elected official and contact them that way.

The same can be said for sending physical letters or postcards. Some groups like Signs of Justice have targeted postcard campaigns like the Majority Project. This can be an effective way of contacting your representative alongside many others across the country, and doing so with a group that has already done research on various topics.

One of the fastest ways to contact your representatives is to call them. These calls are recorded immediately by staffers, so the impact can be felt quickly when there is a high volume of calls. My favorite tool for calling reps is the 5Calls app, or www.5calls.org. This platform is used by hundreds of thousands of people to contact congress, and they are even working toward supporting state and local issues.

When you visit 5Calls.org, you’ll enter your location or zip code, and they will automatically connect you to your congressperson and senators. From there you can choose from a list of 40 issues that are updated consistently to reflect what is moving through congress. When you choose an issue that matters to you, 5Calls provides you with research and background on that topic with links to outside sources. After you’ve read up on the topic, you can click who you’d like to call first. From there, you are given a script to read and you’re off to the races!

The great thing about the 5Calls app is that you can record if you made contact or left a voicemail. This data is recorded across your state and across the country, and you can see it in real time on their interactive dashboard.

I love this feature because it reminds me that I’m not alone, and thousands of people are making calls with me.

Step 3: Develop Your Personal Story

Elected officials work for us, and as such, our personal experiences and stories have power. When you choose to contact your representative about an issue that matters to you, spend some time thinking about why it matters to you. What is your personal connection to the issue? Do you know someone who has been detained by ICE, or do you have a neighbor who is worried for their safety? Do you care about the climate crisis because you want your child to have clean air and water in their future? Have you had personal experiences at our National Parks that lead you to want to protect them? Do you send your child to school, knowing full well that they will have to endure active shooter drills? Your “why” matters, and it lends power to your interaction with your representatives.

Even if you choose to use a platform that gives you a script, spend some time crafting your personal connection to the topic. If it helps, you can even write it down, so you have it with you if you get nervous.

Step 4: Make Contact!

After you’ve done all your prep work, it’s time to make contact! Write the email and send it, drop the postcard in the mail, or make the phone call – the key is crossing the threshold and doing what you set out to do! Don’t stress if your first phone call is a little flustered – there is a first time for everything and you’ll grow in confidence each time you practice. What matters is that you start!

Step 5: Connect With a Group

If you find that you want a more regular experience of contacting your representatives, check out a local group and connect! Many groups have regular contact with staffers and even hold in-person lobby visits to talk about issues. My favorite partner for this type of work is FCNL, or the Friends Committee on National Legislation. They have local chapters and emphasize building relationships with the people who represent us. They are experts at crafting an effective and impactful lobby visit, and they can walk you through everything you need to know.

I hope this gives you confidence to contact your representatives! Remember that they work for us, and our stories have power.

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If you are looking for ways to breathe into compassion, love, longing for peace, or to hold grief, Sarah Bessey has written a lovely post that can serve as inspiration and calling. I hope you will check it out. There are a lot of options, so spend some time and see which one calls to you.

(If the link doesn’t work - sometimes they are persnickety - go to Substack and search for her page. Totally worth it!)

Sarah Bessey's Field Notes

For when your heart is heavy but your resistance is steady

Hi friends…

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7 months ago · 155 likes · 23 comments · Sarah Bessey