Loopholes

Yesterday at church the passage we focused on is the passage in Mark in which you hear the story of the beheading of John the Baptist. Yeah, it’s a super uplifting passage. Ok, maybe “uplifting” is not the right word (unless your talking about John’s head, in which case, pretty accurate), it is a weird and disturbing story. So, for fun let’s do a quick recap.

Herod Antipas gets word that Jesus is around. His first thought is “Man, that’s gotta be John the Baptist! But, shoot, I already killed that guy!” He is obviously concerned. We then get a nice little flashback to how Herod came about to kill John the Baptist.

Herod first married the daughter of King Aretas IV, Phasaelis. However, he divorced her for his brother’s, Herod II/ Philip (seriously, his Dad was super creative with names apparently,) wife. Her name was Herodias. At some point Herodias divorced Herod II/Philip and married Herod Antipas.

Whew! Did you get all that? Anyone feel like that’s a lot of Herod’s/Herodias’ to keep track of? And yes, in case you were wondering, they all are related.

With all this spouse divorcing and swapping John the Baptist decided to do what John the Baptist does and opens his loud mouth. He very loudly proclaims that taking your brother’s wife as your own while your brother is still alive is against the will of God and let’s face it…icky.

Jacob Backer

Now, Herod actually likes listening to John. He thinks this guy is pretty interesting. He can’t understand a word of what he is saying but he enjoys trying. Yet, his new wife, Herodias is not a fan of being publicly called out. So like any decent upright amoral woman she sets to scheming to get her way.

Paul Antoine de la Boulaye

Herod throws a big ol’ party for himself and Herodias’ daughter (historically this would be Salome) comes out and does some kind of amazing dance for Herod and his buddies. Herod is moved and promises her anything she desires. Salome, being a devoted daughter and quick on the uptake, runs to her mother and asks what she wants. Herodias wants John’s head on a platter. Salome goes to Herod in front of all his cronies at the party and says “bring me the head of John the Baptist.”

Herod is troubled but not wanting to lose his street cred follows through and beheads John.

Alfred James

So, there you have it. Delightful little story right? My pastor did a wonderful job relating this to our own life. Talking about how when we follow Jesus or are so like Jesus that people think of us it can lead us to the dangerous place of confrontation even with our political leaders. It was a very good sermon and I urge you all to come some time to our services and hear some more great preaching by my pastor.

Yet, I did wonder at the fact that he didn’t point out the main take away I saw this week. (Probably because my takeaway isn’t nearly as holy). Every time I hear this story I think. “Loopholes! Herod, why didn’t you think of the loopholes?!”

This guy is a ruler, he should know better than to offer everything carte blanche. Yet, here he is offering all up without thinking of the possible consequences. Then instead of saying, “I know I said anything but don’t you think that’s a little overboard?” He just goes along with it because a man’s gotta save face. That’s a double whammy of crazy.

As I sit in my current situation, I am fairly wary of what feels like the universe’s exploitation of loopholes. When I was a child one of the things I would first do when given instructions it seek out the loopholes. For instance, if I was told that when I got home from school I needed to clean my room (a still dreaded task). I would walk home but probably go to the library first, thereby shortening the amount of time I would have to actually clean my room. Dinner came faster once I did come home and I would have to stop cleaning in order to join the family. The task may not have always been done timely, but technically I did as asked. Mom and Dad became adept at closing all the loopholes.

Jenny Kemp

I still look for the loopholes. It’s like a fun game. If you are the one to exploit them loopholes are awesome. But if you are the one they are being exploited against, well, just ask John the Baptist how that feels.

I was supposed to be starting my new treatment already but bureaucratic hoops and loopholes have been holding this process up. I still don’t have a scheduled start date. All the while the vasculitis is spreading more rapidly and more painfully. And it’s hard not to resent the loophole that brought us here. Unfortunately for me I can’t blame any specific scheming person here. This is just they way of the medical world here. It’s fairly infuriating at times.

Meanwhile, I’m sitting here feeling a little bit like Herod going “Well that was not what I was expecting.” What to do now?

Luckily, I’m not really into the whole beheading thing so we can cross that off my agenda. But I am kind of into the whole “saving face” thing. Don’t get me wrong, it’s not like I’m going around worrying I’m gonna lose my street cred as a sick person. I am a bit worried that I might lose my reputation (however flimsily earned or not) as a sick person with some kind of grace for others and herself.

Mark Kostabi

Part of my process of dealing with the difficulties of this life is to write out the story of my trauma and as I write I think about my nieces. I think about what they may encounter once they are my age and what I hope I could tell them if they ever have to go through what I have. What piece of hope in their lives can they look to when everything seems so dark? I write for these future women, who because they are related to me, have a higher risk of living a life like mine both medically and spiritually. That being said, that’s the reason I think so many people believe I do this whole life with even a modicum of love and grace. But that’s not really my doing at all. That’s just how I’ve learned to find grace. It’s easier to find when you are looking for it for those you love without question. Grace is the ultimate loophole and with the Holy it’s exploitation is never wasted or earned. It just is. It’s always there ready to be taken or given.

Sanjay Patel

But these worldly loopholes. They can make a person crazy. They can lead us to places we never wanted to be before. They can urge us to actions we never would have sought out. These worldly loopholes rarely leave room for worldly grace.

This evening, my sister and her two amazing children are arriving for a week long visit. To my mind they couldn’t have come at a better time. Who better to out-wait this current frustration with than my sister and those kids that I think of every time I write. My sister’s daughter is a teenager now. She’s old enough to know what I’m going through and understands it as much as anyone can. What will I show her? How will she remember back on this time if someday she feels the sting of bureaucratic worldly loopholes? Without their presence here this week I may be tempted to give in totally to my anger and frustration. But the Divine gave me a loophole of grace when my sister’s trip just happened to line up with this particular hurt.

Natalia Juncadella

I’ve decided that perhaps saving face is not always a bad thing if that face is one marked by grace. Perhaps, that’s what we should be doing. Treating our character like that at all times. Who is my best version? Just act out your best version even if internally you feel like a fraud. Actions shape us into who we are. Actions are our legacy just as much as anything else. So, go ahead, exploit that Holy loophole of grace and save that wonderful face that mirrors the Divine. And when it comes to making a deal with someone, see what kind of loopholes you leave behind.

Are you someone that leaves worldly ones? Or are you some that leaves Holy ones? I’m praying I leave the Holy ones. And I’m hoping that my face continues to be marked by that grace.

Thanks be to God.

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Divine Infused Knits

There is a reason I am so in love with the fiber arts. Within the crafting, if you choose to pay attention, you may find many answers to life’s deepest questions. You may find the comfort to life’s deepest hurts. You may find the hardiest laughs to life’s deepest joys.

That seems impossible. A ball of yarn, a hook, or two needles. It can’t be that simple. All of knitting is made of two basic stitches and those stitches are actually the same stitch but in reverse. Every stitch is just a variation of that one essential stitch.

I’ve been slowly working on a beautiful cardigan that has these gorgeous circular cables. Using yarn that my parents lovingly brought back from Dublin especially for me. It’s my first go at a cardigan and I was determined to enjoy the process from start to finish. I lovingly picked out which stitch markers I’d be using. I splurged on my first pair of ChiaoGoo Red Lace circular needles. I got my notebook extremely organized and made sure I had post it’s galore for every occasion.

The yarn was stitching up like a dream. Beautiful stitch definition. A lovely variation of heather. It got softer as it knit. It was gorgeous. I loved every single stitch. Then about 700 yards into my stitching I realized I had missed several important increases about 350 yards previously. Normally, this would stress me out. Yet, when I realized what had happened I was relatively calm. I had placed some lifelines within the work in several different places just in case. Beyond that, I had so enjoyed working with this yarn I was actually excited that it meant I got more time with this beautiful pattern.

The past few days I’ve let the cardigan sit in it’s place. I hadn’t taken the time to frog it back. I had other things to do. There’s no deadline. It’s just for me. I can take my time.

As you all know my health has taken another downward turn. It’s been a frustrating experience because as we try to get the right treatment it has felt like we were taking one step forward and two steps back. There are so many hurdles to jump through to get the right medicines to the right patients. So while I wait for treatment decisions, then for treatment orders, then for the doctors to get the right privileges it can feel as though I’m just taking giant steps backwards. Because even though treatment must be put on pause until all the t’s are crossed and i’s dotted my body does not pause. My body barrels forward into the painful experience of cascading vasculitis.

What started as just on my face and wrists is now my hands, arms, stomach, knee, and face. They put you on meds that make you feel pretty awful and the pain just grows. All the while you wait for everyone else to get everything in order. In can drive even the kindest person to madness.

When I woke up this morning and found that the vasculitis had spread once more it was difficult not to feel devastated. I wanted to cry but then I worried that if I cried it would irritate the vasculitis on my face and make it worse. So instead I took deep breaths. Reminded myself I’ve faced this before. That life is not defined by how many times you go backwards but by how many times you continue to move forwards.

I went upstairs and showed my parents and immediately they expressed their joint sympathy. I felt better. I pulled out my cardigan and started to rip out the many stitches I had already made. As I was merrily ripping away I thought about all the cabling I’d get to perfect. I thought about how much fun it was going to be to reknit this pattern. I thought about how proud I would be to see it finished in the manner I envisioned it. And suddenly the stitches stopped ripping.

I looked down and there was that beautiful life line. Holding all the stitches in place that I would need to put back on my needles. That wonderful lifeline kept me from moving too far backwards and made it possible for me to drop not one stitch and give me the foundation to rebuild it again.

I sat and started putting each beautiful stitch back onto my needles and thought of my family. How as my vasculitis continues to worsen, my family holds my stitches together so that I don’t regress too far. They give me a foundation to rebuild even when life feels like all my stitches must be ripped back.

As I neared the end of the stitches I thought about my Creator. How in my life every piece of my life is built with the essential essence of me-ness. The very fabric of my life, is just a variation on one stitch. That stitch is infused with a Divine heather that is sacred and beautiful and purely me. And even though today we are ripping back so many stitches, I can’t help but wonder at how much more beautiful the fabric of my life will be as my own Divine infused yarn gets one more chance to be stitched again.

I’m stepping backwards but my lifelines and my Creator propel me forward.

Thanks be to God.

Chemo-Baby

These past few weeks have been markedly difficult for me emotionally, mentally, and physically. Once again I find myself in that place where lupus, doctors, and myself must find ways to move forward when the way is not always clear. It seems that everyday the pain increases and with those increases the urgency I feel internally intensifies. Unfortunately, no one else on my team really feels how that plays out. It’s just me. Doctors and nurses do their best to write out orders, do their research, and send out orders appropriately but they aren’t living in the same state of being that I am. Which, leads to a slightly slower process than I would like.

I like having a plan and then following through. I like the organization of knowing what comes next. I feel like it grounds me. Tells me where to place my hands on the ride of life so that I don’t get thrown off. A calendar with dates and times that color coordinated brings me certain peace. I am not a neat person by any stretch of the imagination but I am an organized person when it comes to specific aspects of my life.

So, when I was told the new plan was to go back to doing chemo infusions and to wait for the call from the center, I assumed that meant I’d hear within a week. I also knew that I’d have to prepare myself for treatment. However, I did not hear within the week. I made phone calls. Orders hadn’t been written yet. Which led to some confusion about if the plan actually had been settled. (It had but it was settled on a vacation week.) A message on Monday let me know the doctor had written instructions. A phone call yesterday let me know they had been faxed over to the center. I’ve still not heard from the center but I’m releasing that stress. The orders are in. That’s something.

But during this last week of what felt like eternally painful waiting I found myself berating myself. Let me explain. I refer to chemo life as my chemo-baby. There is a certain amount of preparation and planning that is akin to planning for a small but life-changing creature that gets added into your life that shapes everything else around you. All the sudden you have this new thing and even if you’ve had one before it still changes everything. It also comes with some side effects that come with pregnancy because of the medications I’m on beforehand. Nausea in the mornings, but an stomach that will consume anything and everything the rest of the day, and high strung emotions. (Steroids, man).

The last week I’ve been making lists, cleaning, doing load after load of laundry, making Pinterest boards, searching for those old anti-nausea recipes, looking for my softest comfiest clothes and making sure they are up front, organizing my scarves and accessories, writing down specific dosing of meds for every day the taper, organizing my DVD’s again just to make sure I have the best bingeable shows on standby, padding my kindle with light and fluffy books, getting my knitting projects prepared 1 big project for home and 1 tiny project for “in the wild,” and of course I’ve spent a lot of time praying.

In short, I’m chemo-baby nesting. All this has made me feel rather selfish. Asking parents to make sure certain things are stocked makes me feel like more of a moocher than I already am. Looking for things to occupy my time during treatment feels a lot like supporting frivolous activities (which it isn’t and even if they were who cares? Frivolity is a gift and should be pursued especially in the dark times). I’ve been so focused on “me” that I’ve had a difficult time feeling good about myself in the process.

And then I remembered something a wise man once told me. I’ve shared it before and I’ll share it again. I should become friends with my lupus. My lupus, my chemo-baby, they are other creatures. They and I must learn to live together. And as I learned once before, friends create a space for their friends to be wholly themselves.

My chemo-baby nesting is not selfishness. It is a gift to my friend who needs a safe place to go through all of what she will be dealing with. The Divine lets me cry, yell, scream, and laugh throughout my darkness. The Holy teaches me friendship through abundant love. My Creator goes overboard in the amount of grace extended to me in my brokenness. Today, the Divine asks me to pay that forward and in kind to my friend lupus and my upcoming chemo-baby.

Such a simple lesson that I must learn time and time again. It is easy to get sucked under by guilt when you live an existence like this. There are so many things that point you towards your life being a negative drag as opposed to a positive uplifting one. Yet, the Holy reminds us that in our very brokenness we are made whole. I don’t know how it works. I don’t understand it. I can’t fathom why it’s true. But I know that it is. I’ve seen it. I’ve felt it. I’ve lived it.

So, for today, I’m embracing the nesting instinct. I’m celebrating a mind that thinks of what my chemo-baby might need. I’m thankful for a body with previous experience who knows what is comforting. And I’m thankful for the family that will do all it takes to welcome this new little creature into our life and make sure that I have hands to hold the entire time.

Thanks be to God.

Talitha Koum

After a two week absence from my local church (which is quite an absence for me), I was welcomed back with a sermon over the passage that has always seemed to be my own. I’ve written about it before and talked about it. I’ve clung to it over and over again. It seems that the Divine knew I would need it once more this week.

As is the pattern of life, the spiral of my spiritual formation draws me ever closer to previously understood truths that now can feel suffocatingly intimate. At once comforting and daring these truths stir in me a hope that I may someday fully live them out without first pangs of anxiety and fear. That somehow my story will fully become this story.

In Mark Chapter 5:21-43 we encounter the story of Jairus’ daughter with the interruption of the bleeding woman. I’ve included the text below from the New Living Translation in case you need a refresher.

Jesus got into the boat again and went back to the other side of the lake, where a large crowd gathered around him on the shore. Then a leader of the local synagogue, whose name was Jairus, arrived. When he saw Jesus, he fell at his feet, pleading fervently with him. “My little daughter is dying,” he said. “Please come and lay your hands on her; heal her so she can live.”

Jesus went with him, and all the people followed, crowding around him. A woman in the crowd had suffered for twelve years with constant bleeding. She had suffered a great deal from many doctors, and over the years she had spent everything she had to pay them, but she had gotten no better. In fact, she had gotten worse. She had heard about Jesus, so she came up behind him through the crowd and touched his robe. For she thought to herself, “If I can just touch his robe, I will be healed.”

Immediately the bleeding stopped, and she could feel in her body that she had been healed of her terrible condition.

Jesus realized at once that healing power had gone out from him, so he turned around in the crowd and asked, “Who touched my robe?”

His disciples said to him, “Look at this crowd pressing around you. How can you ask, ‘Who touched me?’”

But he kept on looking around to see who had done it. Then the frightened woman, trembling at the realization of what had happened to her, came and fell to her knees in front of him and told him what she had done. And he said to her, “Daughter, your faith has made you well. Go in peace. Your suffering is over.”

While he was still speaking to her, messengers arrived from the home of Jairus, the leader of the synagogue. They told him, “Your daughter is dead. There’s no use troubling the Teacher now.”

But Jesus overheardd them and said to Jairus, “Don’t be afraid. Just have faith.”

Then Jesus stopped the crowd and wouldn’t let anyone go with him except Peter, James, and John (the brother of James). When they came to the home of the synagogue leader, Jesus saw much commotion and weeping and wailing. He went inside and asked, “Why all this commotion and weeping? The child isn’t dead; she’s only asleep.”

The crowd laughed at him. But he made them all leave, and he took the girl’s father and mother and his three disciples into the room where the girl was lying.

Holding her hand, he said to her, “Talitha koum,” which means “Little girl, get up!” And the girl, who was twelve years old, immediately stood up and walked around! They were overwhelmed and totally amazed. Jesus gave them strict orders not to tell anyone what had happened, and then he told them to give her something to eat.

It’s quite the story. I relate to it for the obvious reasons. The pleading father for his daughters life. The doomsday sayers that predict only death. The woman struggling to fulfill her physicians orders to no avail. The closest followers of Jesus still confounded by the messy yet simple work of wholeness. It all feels pretty on point with my own experience as a child and as adult.

It’s a strange and well-documented phenomenon that there is a gender-bias in the medical profession when it comes to women in pain. Just this week I read a story about a woman who had suddenly gained weight, had terrible pain, trouble moving and breathing, and her doctor dismissed her saying she just needed to lose the weight. Only after extreme pain did her mother take her to an emergency room and insist someone do something. They found a 50lb ovarian cyst. 50 lbs! Can you imagine? Walking around in that state? Your organs being pushed aside and damaged because your regular doctor just decided you were fat. The poor young woman wasn’t surprised by the diagnosis though when it was finally discovered. She had experience and she knew something was wrong

While not every woman is dealing with a 50lb cyst, this is not an uncommon story. In fact, it is probably the prevailing story I hear from every woman I know and especially those with chronic illness conditions. We become labeled “drug-seekers,” or “high strung,” or “hypochondriacs.” It’s impossible for us to actually know our own bodies. It’s impossible for us to want to feel better. Why is this so inconceivable to so many physicians? I’ve come to the conclusion it’s inconceivable because some physicians have a very difficult time practicing medicine outside of a sterilized vacuumed environment. Unfortunately, that’s not where most traumas happen.

I’m in the midst of shifting doctors at the moment and doing it while in a particularly bad and painful flare comes with it’s fair share of stressors. So, when I came to church on Sunday and saw the text I breathed a sigh and knew that I would find comfort. But then yesterday happened, and all that text became all too real once more.

That bleeding woman. That wretchedly blessed bleeding woman. Crawling, grasping, thinking for herself. Oh how that story resonates with me. It is the story of my entire adult life as a patient. I can feel the dirt and rocks bite through her robes as she crawls on the ground. I feel the stares of the crowd as they look on in disdain at the unclean woman, some more than likely wanting to kick her out of the way but purity laws dictating they don’t.

But she crawls. She drags herself to the smallest shred of the Holy she can find. Perhaps hoping to sneak up on it. She’s learned that her voice won’t be heard. She knows that if she makes demands they will go unheeded. The only hope is to stealthily, doggedly, and hopefully steal a bit of holiness for her own.

Oh sister, as I sit in doctors offices listening to them say “your tests results don’t match your symptoms.” As I sit in my car and listen to voicemails that seem to take 20-odd years of diagnostics and throw them out the window, as I sit in a hospital hoping that this needle stick will finally be the one to find a vein, I think about how I would crawl through anything of it meant I could grasp a bit of that holiness on my own. I know what it is to have to think for myself when no one else who should be doing that is holding the end of their bargain up.

But man, as beautiful as that sister is, what a call of action for those of us in her position. Not even Jesus’s disciples paid attention to her. She doesn’t even have a name. We gave her one but it’s not her actual name…probably. She is relegated back to the narrative of sick even after her healing. That irks me some, a lot actually. 12 years of suffering somehow is how we define a woman as opposed to the thousands of years of her intelligent grasping of the Holy to find wholeness. Jesus notices her though. He saw it. He felt her. I suppose that would be more than enough for me. To know that Jesus felt my own desperation and faith. That He honors that in me. That’s lovely even if it means I still have to crawl to get to it.

But the story doesn’t end there. We still have Jairus’ daughter and “oh no!” We’re too late. She is dead.

But Jesus says, not so fast y’all. She’s just a heavy sleeper. (Can I get an Amen? Because woah, sometimes I can’t even wake up either.)

Here’s what gets me every time. Jesus doesn’t really do anything. He just grabs her hand and says Talitha Koum. “Little girl, get up.” The healing takes place as a call to action.

When I was a child there were mornings that my mother would sneak in to wake me up. These mornings were usually Saturdays and meant my doom. She would crawl up on the bed and say “little girl, little girl, time to get up.” And if I fussed as I usually did she would start to gently hop on the bed and say “little girl, little girl, get up.” And if I continued to fuss she would not be gentle but full out jumping and grabbing sheets and laughing in glee and say “little girl get up! We have a project to get done!”

It was always the worst and the best. It usually entailed bricks or paint or both. It meant there would be no cinnamon rolls that morning. It meant we would go to Home Depot at least twice and at some point if I was lucky I might here my mom say a curse. So, there was that.

That call “little girl get up.” Jesus uses that call to me. I feel him jumping on my bed maybe laughing is glee. Telling those around me “get this girl some food!”

Yeah, go ahead and get me the food. Sustain me, because the road to wholeness, is filled with crawling desperation. It is a road where one must think for themselves. It is a road where I will find myself cursing at the mess I’m in. It is a road that leads to the Holy but we must heed the call to get up.

Talitha Koum

Little girl, get up. Take my hand. Praise be to God.

Shameless Compassion

“If we want to be happy ourselves, we should practice compassion, and if we want other people to be happy, we should likewise practice compassion. All of us would rather see smiling faces than frowning ones,” so says the Dalai Lama XIV in An Appeal To The World: The Way To Peace In A Time Of Division

Compassion, a simple word and yet something that can be quite difficult to achieve. As the years move forward and I live more with this disease the art of compassion must be relearned over and over. It’s a never ending lesson in compassion for myself and for others.

This week the community chorus I am in is preparing for our spring concerts this weekend. (Which you should all go to by the way! Such Broadway fun!). Last night we had a rehearsal and as we were congregating and waiting to be placed on stage several of the women made comments about how I “never complain” and just smile all the time. Which made me laugh because the majority of my time is spent complaining. Just ask those who live with me. I’m a huge whiner. My internal dialogue usually goes something like this “Oh God I’m so tired! Why am I here right now? Am I nauseous or just hot? If I have to throw up what’s the quickest route to the bathroom? Why do clothes have to be so irritating?” It’s a constant litany of frustration.

And my smiling? Yeah, that’s called a defense mechanism. I smile because if I don’t, I’m not sure I’d survive. One crack in that smile and I’m not sure I’d be able to do it again. That’s the reality. That’s the truth of my life. What’s worse is that I am deeply ashamed of that.

For me, there is immense shame I work through everyday that is connected to my lupus. Some of it is for the obvious reasons. The fact that I can’t support myself financially. That I must live off the generosity of my family and friends. Some is that I am unreliable when it comes to my schedule. I can make plans but only God knows if I’ll be able to keep them. But there are other things that keep me shamed.

I’m ashamed of how I talk about myself internally. I know that I am created in the image of the Holy. So what gives me the right to disparage my being so deeply and so consistently. I’m ashamed of how I feel about this body. This body was crafted especially for me and yet, not one day goes by when I do not resent it for the pain it brings. Where is my thankfulness? How selfish am I?

This body, this disease is difficult. And I wonder at the many ways it’s pointed me toward the Divine while I fought back against it’s very existence.

I started this with a quote from the Dalai Lama. In the same book the Dalai Lama states that, “Compassion for ourselves means turning our attention to death in order to enrich our lives. If we accept death as part of life, we protect ourselves from frittering away our time with meaningless distractions.“

Well, that sounds so simple. Trust me, you can’t live in a body like this and not turn your attention to death. Death is always there. He’s either lurking in the background or you allow him to be a friend at your shoulder. You learn to integrate the reality of death in your everyday living.

But what are those meaningless distractions? I used to think it was the things that didn’t advance someone in life. You know, because meaningful things are like building families, or creating a space in your vocation that adds to the greater good. Sure, those are meaningful but for someone like me they just don’t look like same. I can’t have children. So I must invest in my family as is. I can’t work so I must find ways to add to the greater good outside of a career.

Some days that means I spend my day creating something with yarn for someone I love. Some days that means I help out with whatever crazy shenanigans my mother is up to. Some days that means I sit in community with others and explore spiritual formation together.

This week that means I give my all to my community chorus. I sing, I laugh, I smile. I join in song with others as we make other people tap their feet and sway in their seats. It means that what might seem like a silly little concert in reality is something much bigger. It’s added joy and wonder. It’s me being compassionate to myself. It’s me living out compassion with love poured out in the form of music.

Even while I have so much joy while singing in concert with others I do still struggle with my grief during those performances and rehearsals. I struggle to adapt to this instrument that is constantly changing. I must work diligently to bring myself out of my head and into the music. Yet, that also can bring the bittersweet taste of grief because one of the songs we are singing this concert is one my dear friend Cissy would jokingly sing as they brought out her chemo.

“Do you hear the people sing? Lost in the valley of the night? It is the music of a people who are climbing to the light. For the wretched of the earth there is a flame that never dies. Even the darkest night will end and the sun will rise.”

Cissy knew how to be compassionate to herself and her disease. She learned so quickly that smiles and laughter breed love. What could have been moments fraught with tension she made shine with joy. She let death sit beside her and laughed at his side. She was shameless and it is and was beautiful.

I think about Cissy and what was our chemo distraction and realize how meaningful that really was. Her song is with me forever. And how lucky am I to get to sing it again full out with a wonderful community! So, for this week as I prepare, I promise to sing shamelessly the music of our hearts. To smile. To laugh. And above all to be passionately compassionate.

This lupus awareness month, I hope you find a way to be compassionate to yourself and to others. That the yoke of shame might be lessened each day. That by advocating for those with lupus and funding research fewer people in the future will have to bear the burden of their lupus shame. Please consider making a donation to my fundraiser for The Lupus Foundation Of America. Every dollar helps and can mean the difference between feeling ashamed and being wrapped in compassion. Thank you.

http://support.lupus.org/site/TR/MYM/General?px=2099492&pg=personal&fr_id=1390

Molting Hope

Emily Dickinson once wrote that beautiful poem,

“‘Hope’ is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all -“

These past days, weeks, decades…I’ve realized that if that’s true, then my little bird of hope must be molting. Feather after feather has fallen to the wayside leaving a trail of hope for others to pick up behind me without many feathers left to cover me.

They say our spiritual formation is like a spiral. Starting outwards we spiral inwards revisiting the same lessons and revelations time and time again but each time on a deeper more shaping level. I wrote last week that I felt as though my life was built upon a deep well of sorrow. That’s not an inaccurate depiction of my reality. Years of illness and trauma leave behind a well of grief. Every time something new comes along you are forced to reevaluate your life. If you are paying attention you may be able to see how the Holy hand’s might be using these new circumstances to shape you and once again you are reminded of a lesson you thought you already learned yet now you feel that tightening spiral and feel the lesson hit a deeper more intimate place in you.

My friends, at times I feel imprisoned by the intimacy of these lessons. We are told that there is freedom in the Holy and that is true but those first touches of intimacy can feel confining and terrifying. The shaping hands of the Divine don’t always feel like caresses so much as someone plucking all the feathers of hope in preparation for some one else’s meal.

When I was 21, I shocked and perhaps concerned my parents regarding my health when I got a large tattoo on my back of two entwined phoenixes. As the first, and as far as I know, the only one in our immediate family to get a tattoo, this action made great fodder for the family. It did not go unnoticed that my dad had a heart incident shortly after he saw and received word of my tattoo. The common refrain was “Why in the world would you get giant birds tattooed on you?”

Why indeed? Why phoenixes in particular? Because even at a young age I saw the wisdom and tragic beauty of that mythical creature. A creature of magical and healing beauty that molts, dies in flames, and is reborn anew among the ashes of its previous life.

You see, I’ve learned this lesson before. My life is on track to burn in flames once more. And soon I’ll start the terrifying process of rebirth and what kind of phoenix will I be this time? What hope imbued feathers will I wear? How long will that next iteration live? How much tighter and deeper will this spiral take me?

I don’t have the answers to these questions. I just know that after every death there is rebirth. Thanks be to God.

Ghost Lives

This lent my pastor has posited the question to our community “What does it mean to be a Christian today?” As is frequently the case when I’m listening to my spiritual leaders I found this question to be timely.

I’ve not written in quite some time not because I have not been ruminating on things but because I’ve lacked the words to express exactly what I’m exploring. It’s a difficult time where I often feel as though the world is an upside down place. Sometimes I don’t know how to interact in this world in a way that is both authentic, healing, and kind.

There is a deep sorrow in me that never seems to dissipate. It’s an ever deepening well of grief that often becomes a breeding space for rage. This sorrow has been born out of an all encompassing love and watching it methodically be transformed into emotions that society deems negative creates another layer of grief and shame.

I was reading the phenomenal book Doc by Mary Doria Russell last week. In this novel Russell explores the character of Doc Holliday and his relationships with his famous friends the Earps. In one exchange Wyatt is telling Doc about his inability to love as a husband after the quick and tragic death of his wife. Doc’s response addressed in me that deep well of sorrow. “That is your ghost life, Wyatt. That is the life you might have had. This is the life you’ve got.”

Indeed, my sorrow stems from the love of the many ghosts lives I saw that died in my current reality. A life of motherhood. A life where I woke up most days and felt well. A life where I had a career that shaped the world. A life in which I did not wake up to deep violence in our country. A life in which the Divine was self-evident in everyone around me. A life in which I did not feel as though our very world was poisoned by hatred. My individual and our collective ghost lives.

Oh my friends, how those ghosts haunt me. They cling to my every action and thought. When people comment on how well I look my ghosts whisper “look at this lie you portray.” When I see my friends and family raise beautiful children my ghosts whisper “look what this disease stole from you.” When I see my friends fight over on the many factors of violence and then turn against one another in hatred my ghosts whisper “where did kindness and empathy go?”

How I want to rage at the injustice of the life we’ve got. And yet, the question remains. “What does it mean to be a Christian today?” What does it look like for me to live this out? What does it mean? How do I channel my rage and sorrow and let it transform into holy love?

Several years ago when I was diagnosed with restrictive cardiomyopathy I wrestled with the knowledge that my heart was literally hardening with scar tissue. I struggled envisioning a life in which my heart and soul remained fluid and compassionate. And here I am again wondering about the very same thing. I was reminded at the time that is the Divine that sanctifies us. That there is nothing in me that warrants and earns wholeness. That is a gift when I choose to live fully in my created being and in turn empty myself so that I may be filled by the Holy.

In Christ we see death leads to resurrection. That the things we grieve may not necessarily be infinitely gone. That our ghosts do not need to remain ghosts. They may become flesh once more. There is however one thing we often forget. We must fully live into the life we’ve got now. This life that is shaped around us and invite the Holy to inhabit us as we live it. I must hollow my being so that in the death of those many lives the Holy may perform the miracle of resurrection once again.

What does it mean to be a Christian today? It’s honoring those ghosts and living fully into the Holy. Doing the hard work of resurrection and transformative experience of turning sorrow and rage into holy love. Praise be to God.