All Is Not Well

Well, here it is. My least favorite time of year. The syrupy, forcefully inauthentic, and secular Christmas time. Christmas carols with bad theology (I’m looking at you, Mary, Did You Know, because she totally did know), Christmas music that is like drinking shots of straight sugar (Ugh no more Mariah Carey), people fighting for the toy of the year (ok, the interactive electronic baby finger monkey does look kind of adorable), and people pressuring everyone around them to be happy and thankful (don’t tell me how to feel).

I know I’ll get a lot of flak for writing this but I don’t really care because it must be said: Christmas is not the most wonderful time of the year. It’s the worst. The absolute worst.

There’s plenty of reasons for that, those above that I just named are a small sampling. During this time of year the absence of loved ones we have lost is felt more readily. Gathering with family can make you more aware of what you perceive to be your own personal failures. God forbid if you’ve lived through some major trauma during this time of year. Add in the state of our world, both nationally and internationally, and it’s hard for me to fathom how anyone is ok with the “Christmas spirit” everyone is always talking about.

Earlier this month I joined my choir in a Christmas concert in which we sang the Michael W Smith song All Is Well. It’s a beautiful song but I found myself getting angry every time I was singing it.

“All is well. All is well. Angels and men rejoice. For tonight darkness fell into the dawn of love’s light. All is well. All is well. Let there be peace on earth. Christ’s come. Go and tell that he is in the manger now.”

I wanted to scream that all is not well. All is the opposite of well! All is not ok. Even the good things in life are hard. That’s not well. And sure, we should celebrate the incarnation. But have you seen peace on earth? I certainly haven’t. Have we deluded ourselves into believing just because Jesus was born that nothing after his birth happened and none of the unwell things occurred?

Mary still gave birth in a stable. That’s not well. They had to run and hide from Herod. That’s not well. Oppression of the Israelites continued. That’s not well. Social and economic oppressions still occurred. That’s not well. War, violence, and hate still abound. That’s not well. John the Baptist still had to speak the truth of repentance. That certainly didn’t happen because all was well. Jesus was crucified and that’s definitely not well.

I do love Advent.I just wish our American Christmas reflected advent more accurately.

Advent is a time of preparation. We prepare for the coming of the Kingdom of God and yet because Jesus was born we are called to live within and as if the Kingdom of God has been realized. Yet just by looking around we can see that the Kingdom is already here but not quite yet. That means that preparation is happening specifically because all truly is not well. Furthermore, when the Divine does show up it doesn’t magically erase all the problems we are facing.

Go and tell Christ has come but maybe make sure Mary, Joseph, and Jesus have a safe place to be. Go and tell Christ has come but maybe stop Herod from murdering children. Go and tell Christ has come but maybe look around and instead of waiting for Jesus to bring peace, you make peace.

All truly is not well. Thank God that we remind ourselves to prepare a world for which all can be well.

So as we finish our this season perhaps it would benefit us to remember exactly why Advent is about preparation. Already here and not yet. Maybe we’ll remember the call to nurture a place for the Divine just like Mary did. It’s not over folks. It’s just begun.


Fangirling Through My Spiritual Formation

It probably isn’t surprising to most people to hear that I am a fangirl. Star Wars? Han shot first. Star Trek? Don’t call me a Trekkie, it’s Trekker. Harry Potter? The Dursley’s were not under the effect of a horcrux. Supernatural? There’s a gif for that and Destiel should be canon. Game of Thrones? R + L = J. Doctor Who? Is an alien and gender is fluid.

In my life the fangirl identity is something I’ve fully embraced. I love it. Fan-fiction, fan-art, fan theories, and fan controversies, these are the things that make stories into communities. Stories shape us. They invite us in and dare us into new realities. Stories can show us truths we may have been to uncomfortable to entertain before. To me stories are life.

When I decided I wanted to explore a new way of practicing my own spiritual formation it was only natural to look to my fangirl ways. What would it look like if I used fandom frameworks to explore Christendom and my own personal faith? To be sure the very word fan comes from the idea of a religious fanatic. Is there a way in which the balanced fangirl life could benefit my own spiritual life? The answer for me has been yes.

Why did I decided to “explore new life and new civilizations” in my spiritual practice? To put it simply, I needed new life in those practices. My current existence felt limited in the spiritual parameters I had allowed to be set for myself.

Some of you may relate to this experience. Whether you are of an age where life seems to be winding down or like me your body has determined life must be winding down, it can be difficult to see what your calling is in that context. I’ve mentioned before the fear of my best days being behind me and that my tools are quickly being stolen from me. What good can I do without my best days and best tools? Life started to box me in. I was suffocating. Where is the hope that I may add to the work of the kingdom? What will be my limited legacy? Everything I knew about my ability to do good work had been taken from me.

What is there to do then? Well, as my father has often spoken on, it’s time to improvise with the Divine.

It is easy to get bogged down in the “I can’t’s” of the world. I can’t help fund a ministry financially because I don’t have any finances. I can’t be a minister because I don’t have the ability to support my own training. I can’t keep a steady job because my health is unpredictable and precarious. I can’t. I can’t. I can’t.

However, the “I can’s” of the world are what brings new life. I can write about my truths. I can love creation. I can challenge myself to adapt. I can enter into hard conversation. I can be creative. I can. I can. I can.

This is what I love about being a fangirl. I love the creativity and the willingness to enter into the stories. To move them forward, to relish in them to find common bonds in them.

My dear friend and fellow fangirl, Lisa, sent me the book Family Don’t End With Blood: Cast and Fans On How Supernatural Has Changed Lives edited by Lynn S. Zubernis. It’s a series of essays and I can’t express how much I’ve loved this book. There is a unique social dynamic in the Supernatural fandom. For those not in the know, Supernatural is a television show. For me the most impressive aspect of this fandom is that, by and large, it is marked by compassion, empathy, and familial relationships. The cast and creators have a very open and engaging relationship with their fans. It is summed up well in this quote by Karen Cooke:

“I no longer watch this show. I am involved with this show. Intrinsically involved. I’ve been involved now for over ten years. The other day my mother observed that it seemed like It wasn’t the story I was involved with anymore. I was more involved with the people who made the story. ‘Definitely,’ I told her.”

What would it look like to no longer watch the story but be involved with it? To not just love the story but to be involved with the story makers? To, dare I say, be a partner with the Story Maker?

This. This is what I was searching for. It’s been here all along. Icons are fan-art. Jonah and Revelation are fan-fiction that has been canonized. Theology is obviously fandom theories.

In James 4: 14b-15 we are confronted with these words “For you are a mist that appears for a little while and then vanishes. Instead you ought to say, ‘If the Lord wishes, we will live and do this or that.'”

I’ve been consumed by my own vanishing mist. It seems so unsubstantial. What can something that vanishes really do? Is there an impact I can have? James says there is. James tell us to try and live into the Divine’s will and decide to live despite our own vanishing act. We must learn the art of creativity, of improvisation, of playfulness with the Divine. We, in short, must become fangirls and boys of the Holy.

Sure, ok. But April Beth? What lasting impact can that really have? Can that really change anything?

It already has.

An image that I have found both comforting and confusing is one given to us in that great canonized fan-fic, Revelation. Revelation 8:4-5 paints a picture of how prayers may and do impact the kingdom, impacting not only the citizens but the Divine itself.

“And the smoke of the incense, with the prayers of the saints, rose before God from the hand of the angel. Then the angel took the censer and filled it with fire from the altar and threw it on the earth; and there were peals of thunder, rumblings, flashes of lightning, and an earthquake.”

Interesting, when we pray, both in word and action it combines with the incense of the Divine. Throw out onto the world and watch as Thy Kingdom come. That’s what I call impact!

My tools are vanishing and yet God wills me to live and do. This challenges everything I once knew about my own capabilities but the Divine invites me to shape not only myself and creation but to join in the Divine’s own shaping too. My prayers, my life, my vanishing existence moves this story forward. I will not just debate the story. I will help create it. I am, after all, a fangirl.

Thanks Be To God.

The Rubric of Your Calling

Did you have a favorite teacher growing up? Can you name the reasons why they were your favorite? It could be that their excitement for their subject also excited you. Perhaps it was that they had a great rapport with their students. Maybe they had a phrase they repeated frequently that has served as great advice over the years. If we are lucky we have had at least a few great teachers in our lives that have helped shape us into the people we are today.

I can name multiple teachers that shaped me. My second grade teacher, Mrs Grosbach, taught me the importance of a smile and a kind word. My middle school band teacher, Mr Casteñeda, taught me that “repetition is the mother of all learning.” My eighth grade English teacher, Mrs Chesbro, taught me the joy of imagination when putting pen to paper. My first youth leader, Daniel Richards, taught me how a good cup of tea and a willingness to ask uncomfortably questions can be a wonderful way to welcome the Sacred into your life. My voice teacher, Claudia Kennedy, taught me that with good breathing and great passion music can be conveyed as more than a few notes from your voice. Then, of course, was my piano teacher, choral instructor, VBS teacher, junior high mathematics teacher, college music education professor, and teacher of all things about what it meant to be a fierce woman, my mother Linda Wiles. The number of things she taught me can not be contained by a few sentences.

That being said, all these teachers had at least one things in common. Whether they used a rubric and handed out actual grades or not they all did use a rubric when it came to education. What did they want me to learn? In what ways could they measure if I had learned those concepts? How would I know I had attained a passable understanding of these teachings?

For me, there is something comforting about rubrics even in their underlying challenge. I credit my mother for that. Before my mother ever gave me formal grades in a public classroom setting she was my piano teacher. Those of you who have taken private music lessons may have vivid memories of those wonderful and terrifying times known as guild auditions. If you followed music into your collegiate career you also remember the dreaded jury auditions. You’d prepare several musical pieces and performed them in front of musical judges where they filled out their own rubrics and at the end you would receive their notes and scores. In preparing for these my mother would often have her students play for her and others as if it was their audition. At the end of your performance she would give you a rating. I don’t remember getting very many superior ratings from her leading up to an audition. Part of that was because I rarely practiced enough to rate a superior but I suspect it was also a part of my mother’s teaching technique to remind me that I could always bring more to the music.

When I was in high school there was a year that I was having a particularly difficult time and my grades took a hit. Nothing tragic of course but enough that during mid-terms there was cause for concern. I remember having an argument with my mother about it. I should clarify, Mother doesn’t argue, she reasons with pure logic. I, however, argue with emotion and temper. At the time I was offended that I was in trouble for getting grades that weren’t as poor as another one of my siblings had received previously. I could
only see what I thought was a terribly unjust double standard.

Cries of unfairness and hypocrisy were wailed and in the face of my rebuke my mother said calmly something I’ll never forget. “Have you forgotten that I know what you are capable of? If this was you at your best you would receive my praise but I know better and so do you. This isn’t even your mediocre work. You will not waste your education with less than your excellence.”

It was a good argument and while I don’t believe I backed down verbally I know that internally I knew that she was entirely correct and I had lost the battle.
You see, mother is very adept with her rubrics. That’s because her rubrics are always changing. She finds her excellence and then says, “Well, I can do that which means I can do better than that next time.” Suddenly what was superior work is now rated average. The thing is, she doesn’t just design her own rubrics that way, that’s how she designs rubrics for all of those around her. You can’t help but be pushed to excellence if you let her influence you.

This constant striving for excellence is at once exhausting and exhilarating. It’s not about being the best in the field. It’s about being the best of who you are.

My father has also taught me about this concept. I have a habit of writing in my bible. I try to date when a scripture was preached on and if the preacher had any remarks that especially caught my ear and soul I’ll write it down along that scripture. There is one particular piece that my father said that I find myself referring back to frequently. He told us that in the work of Kingdom life we “must find the time to do our best work amongst all our good work.”

Do you hear it? That call to be our best selves and live to our highest callings.

I did.

I do.

It has been the source of my deepest grief and fear these past few months.

One would think that after so many years of living with this illness I would become used to it. That somehow I’d find a way to shut out the never ending pain and exhaustion. That while it may shape my abilities I would become more adept at adapting to it so that I would not be forced to refrain from life.

Yet, 20 years into this disease and it’s complications and I’ve found it only becomes more difficult, more pain-filled, more exhausting, and more secluding. At the moment, the cutaneous vasculitis covers more than half of my body. It shapes every interaction I have. How I move, how I breathe, how much energy I may have, how much time I have to spend with others, how I see myself, how I think about myself, how I believe in myself, every piece of me is sharpened or dulled by it’s presence.

There is sorrow that accompanies this reality. These past few months I have been confronted with another change in the rubric of my life. It was as if I could no longer see how my superior could ever be average again. In fact, it may very will be that what was once my mediocre might now remain the superior on my rubric for the rest of my life. Has this reality made it to where all my best work is behind me? I know that physically my best days are quite likely behind me. How does one find a way to do their best work when they do not have any more best days ahead?

The weight of that has suffocated me these past months. The problem is that my faith leads me to believe that the Divine still has some of my best work ahead of me but the sicker I get the harder it is for me to believe that I will be able to even attempt the work the Divine calls me to. Much like the prophets of old I have been saying to the Holy “Surely, not me my Lord.” There are others more suited to this work. Those who have energy, those who have not lost their quick wit, those who can walk in the sunlight to minister, those who can go at least a few minutes without feeling the pain of their brokenness seep through their thoughts.

Still, there’s that incessant call and that ever present rubric. If I could only see what was expected of me perhaps I’d feel a bit more at ease.

It seems though that our best teachers don’t really ever stop teaching us. My mother is frequently putting together concerts that are not only beautiful but educational. She was approached by a group and asked to prepare a concert around a theme of peace. She has taken that theme and moved it beyond peace but also to one of witness to injustice and how peaceful resistance can lead to new realities. In this endeavor she picked a few vocal pieces for me to prepare for the upcoming concert. She had said that there would be one challenging piece and the others would be easy.

Yes, Mother. I’ll perform and try my best.

Then the first piece arrived. A seven to eight minute aria that is not for the faint of heart. Difficult in vocal technique, musicality, and drama. I looked at it with great apprehension. I looked up several renditions on YouTube.

The horror I felt can not be overstated. My mother had lost her mind. I’ve not sung anything like this since college and even then I would have been entirely ill-equipped. I didn’t have the life experience to bring authenticity to the piece. Now at this point in my life I may have too much experience to even be able to perform it without dissolving into tears. My mother is insane. She could not be serious. She has shown an appalling lack of understanding of my own capabilities. It’s simply impossible.
I can not do it.

What’s a woman to do? I live with her. She is stubborn. Saying no won’t do. After all, she doesn’t argue, she reasons. I’m the emotional one. How do you tell your most important, most shaping, most successful teacher that her rubric is seriously skewed? I was beside myself.

It was in the midst of this crisis that I was able to attend a service where my friend Rev Kathryn Palen was delivering the sermon. She talked about our call and our journey. She remarked on what things in our lives weigh us down along our way. What does the Holy ask you to set down even though you can’t imagine journeying without it? I knew what it was for me that Sunday. The fear that because my best physical days are over that my best work is past me as well. Can I lay that down? Lord knows I’m trying to.

I came back that Sunday thinking of that truth and of that cursed aria my mother picked out. I started thinking about this woman who had known me beyond as just her child but as her student. This is a woman who knows exactly what I’m capable of.

“Have you forgotten that I know what you are capable of? If this was you at your best you would receive my praise but I know better and so do you. This isn’t even your mediocre work.”

I could hear what she would say to me now. It’s the words the Divine whispers in my soul every minute of my existence.

“You will not waste this life, your gifts, or your call on anything less than excellence.”

Yes Mother.

Yes Creator.

Yes Spirit.

I can not argue this logic. The rubric has changed but whose to say it was to lower my capabilities? Maybe it’s shifted to a new superior that only this life could bring.

I know it’s possible, I’ve seen it in my teacher. A woman who lost the use of her legs not once but twice and still walks, and even more impressively plays the organ beautifully. I’ve seen it in the woman who time and again picks up her life and manages the impossible. I’ve seen it in the woman who has raised three children that dream up fantastical ideas and create even more fantastical realities. I’ve seen it in a God who made the Word flesh. I’ve seen it in a God who calls the speechless and gives them a voice. I’ve seen it in a God who reveals the mystery of relentless call through the parents who remind me what true excellence is. I see it in myself who finds comfort and challenge in the rubric of my life.

Who is my favorite teacher? I suppose you all would expect me to say my mother. I will not lie and say that she is not high on that list. Of all my teachers she ranks second. My favorite teacher is the Holy One that has revealed itself in all the teachers in my life and who designs the very rubric of my existence. Thanks be to God.

Dark Days, Trampolines, and Joyous Love

Often I find myself falling into that dark place where hope seems impossible, pain seems never ending, and loneliness seems an eternal state of being. It’s easy to allow yourself to believe the negative script in your mind. As your health becomes a crisis all your previous traumas decide to become fresh wounds once more.

When these times happen it is important to find some practical plan to help combat the mental aspects of those dark places. Luckily, I have a plan in place that is made possible by my family. I’ve saved many beautiful letters of love and support from my siblings, parents, and my grandmother Ruth. I know I can pull those out at anytime and reread them. Those tangible reminders do more to combat the false narrative I hear in my head than almost any other strategy I’ve tried. But not only do those specific words becoming healing, they also bring to mind the many memories of when my loved ones lived out their love for me.

When I was a child my parents got us a trampoline. I loved that trampoline. I spent hours jumping around outside. I’d turn a sprinkler on under the trampoline, turn on my boom box, and jump, flip, and laugh the hours away. Frequently I would beg my big brother to come out and jump with me. John didn’t often want to play on the trampoline though. To be fair he was a teenager by the time we got it and I was five years younger than him. Not many 17 year olds would find it enjoyable to jump around with their 12 year old sister. Every once in a while I’d manage to get him out there but that was not the norm.

When I had my first brush with serious illness I was in too much pain to walk, let alone jump. I suddenly lost the ability to participate in the activity that I loved so much. I was a hyper kid. I was not talented at sitting still. So finding myself unable to run around and play brought some significant depression that I’d not dealt with before.

One day I had had a particularly hard day. I was in a lot of pain and I’d had some hurtful interactions with some of the other children at school. That afternoon and evening my parents had gone out. John and I were staying home by ourselves. I assumed we’d be watching tv all night. But, my brother, seeing how I was struggling emotionally, did something I’ll never forget. 

I was watching tv on my own when John walked in wearing his swim trunks and a t-shirt. I was a bit confused when he came over and picked me up off the couch and started carrying me towards the back door. Where was he taking me?
It wasn’t until he carried me outside that I saw he had set up the sprinkler under the trampoline. He laid me on the trampoline and I shimmied myself over to the middle. John climbed up on the trampoline and very seriously said, “Alright, hang on and try not to fall off.” My big brother started jumping and trying to pop me up in the air. 

I remember the hot fabric of the trampoline that had been baking all day in the Arizona heat. I remember the secret joy of realizing I was dirtying my nice school clothes drenching them in water mixed with layers of dust that covered the black fabric. Caked wth the muddy dust, I remember giggling when John would surprise me by achieving a great pop and feeling my stomach suddenly drop. I remember looking up at my brother and seeing how he was anointing me with the endless love he had for me. 

 You can’t imagine the amount of joy and laughter he suddenly welcomed into my day. What had been an awful day had been transformed into one of the most purely wonderful joys I had ever experienced. John gave me joy born from the selfless love of a big brother. That memory is one of my most treasured. 

 Two nights ago I was struggling. The anxiety was winning. I was confronted with the reality that I can not create a stable life on my own. I heard all the times my former husband had told me I had no worth. I recalled all the times I was told I was unlovable and a drain on everyone around me. My mind replayed every derogatory comment that was used to gaslight my own understanding of self-worth.

Heart racing, fever growing, migraine flaring, and hives inducing anxiety took over. Gasping for breath and clinging for dear life I took the time to read those loving letters and to count up as many memories I could think of where my loved ones showed I was worthy of joy and happiness.
With the morning came the show of vasculitis and the frustration that I almost allowed the false narrative to win. I texted both of my siblings expressing how I was going into a fairly stressful day. As always they responded with great love and care. One of the most comforting things was the knowledge that my brother and his daughter are visiting my sister and her family this week. 

When they are all together I love getting pictures and updates about their time together. Yesterday as I was scrolling through the pictures and videos they had sent me I paused to watch one of the videos. It’s a short clip where my 14 year old niece Emma is jumping on her trampoline with my 3 year old niece Ruthie. Watching Emma lovingly care and play with Ruthie and hearing Ruthie’s gleeful shouts of “Yay!” and her laughter brought me right back to that day so many years ago where a 17 year old brother did all he could to foster his little sister’s shouts of glee and laughter. 

 I won’t lie. These days are difficult. The pain is overwhelming. The anger can be consuming. The sorrow is ever present. Yet, even amongst all of that, my loved ones continue to pick me up in their arms and carry me to places where love-covered joy can be found.

 So, today I urge those who are walking through difficult days to take the time to bathe your heart in your most joy-filled memories. 

 And to those of you who love someone that are living those dark days, take a note from my big brother and sister, gift your loved ones a moment of joy. You never know how one small action will shape those around you. 

 Change the narrative today friends. Find your laughter. Live out your love. Seek your joy.  How beautiful it can be to encounter the love poured over you even as you’re walking in the dark. Thanks be to God.

When Lazarus Turns 64

These past weeks have been challenging ones for me. Like many others that have chronic illness, I also live with those frustrating mental companions known as depression and anxiety. It’s not hard to understand why I struggle but I often wonder if it is difficult for others to grasp the nature of my depression and anxiety disorders. It’s a rare occurrence when I’m not dealing with multiple health concerns simultaneously. Lately those concerns manifested in bilateral pneumonia, bilateral pleural effusions, the seemingly never ending presence of cutaneous vasculitis, as well as the systemic vasculitis that refuses to calm down. 

I wrote previously about my stress I was working through throughout Holy Week. As you may recall it stemmed from my frustration as I tried to find ways to continue singing and performing while my body was losing the tools that allowed me to do so. There was real grief in that. Yet, I don’t always feel like it’s socially acceptable for me to acknowledge that grief publicly. 

This past weekend I participated in The Chorus Of Kent County’s concerts. As my family can attest, I was a complete emotional wreck the two weeks leading up to those concerts. I’m fairly certain I drove my mother crazy with the amount of time I spent at the piano trying to sing my part while simultaneously playing the piano accompaniment. I practiced so intensely not because I didn’t know my part but because everything in my body felt wrong when I was singing. It felt as though I was physically incapable of employing the body mechanics I had been vigorously trained in throughout my musical history. Every once in a while I’d just stop singing because I felt like I could not breathe. Gasping for air, face colored with shame for the loss of the tools I used to possess.

It’s not easy watching and feeling your body slowly deteriorate disallowing you to participate in the activities that give you joy. I’d go to our rehearsals and everyone was so supportive and kind. However, I’d find myself embarrassed at my own perceived ineptitude. Several times on my drive home from rehearsals I’d pull over and cry for a bit. Sorrow was overwhelming but it was my burden to carry. Who wants to make others witness your hurts. There is no one here, aside from my parents, who know how I used to sound. So while everyone around me said complimentary things about my voice, internally, I was always thinking about how far my voice has fallen. It sounds ok but it’s not where I want to be. 

I realized that I needed to find a way to grieve but I couldn’t figure out where to start or how to approach my grief in a healthy way. So, I turned to the gift of fiction. Years ago I read the phenomenal novel, The Sparrow by Mary Doria Russell. The story pulls you through the messy and painful business of grief while juxtaposed against your faith. It provided me an outlet to work through my own sorrow and anger. I decided to take the time to read it again this past week. I wept through it but found solace in it’s words.

During one of our concert dress rehearsals one of our small ensembles were singing through the Beatles song, When I’m 64. As they were singing one of my choir buddies jokingly mentioned that she was closing in on 64. We laughed a bit and I replied, “Gosh, I hope I don’t make it to 64.” My friend giggled a bit but also tried to encourage me to not joke about that. I replied that I wasn’t joking. Just thinking about living another 32 years in this body was overwhelming. Sure, breakthroughs may happen but let’s not delude ourselves here. Even if they find a cure for Lupus it has already damaged my body in ways that can’t be recovered. 

32 more years of gasping for air. 32 more years of losing mobility. 32 more years of disfiguring vasculitis. 32 more years of a weak stomach. 32 more years of constant adaptation. 32 more years of constant and exhausting pain. God, have mercy. 

And while it would also mean 32 more years of relationship with dear friends and family. I’m not always sure it’s a good trade off for any of us.

When I express this the majority of people are, if not horrified, than at least highly concerned. It’s probable that they worry I’ll consider suicide. Let me put you all at ease, I’m not. It’s not that I want to actively seek ending my life. I just don’t enjoy imagining living like this for that long. It’s a delicate perspective to explain. If you’ve not experienced the toll that severe illness can take it’s unlikely that you can relate. 

My Christian friends will often try to comfort through faith platitudes. I always appreciate that they genuinely care and are trying to encourage me. However, I find most of those platitudes to contain poor theology and I’m never quite sure how to respond when I disagree with those well worn cliches. Sure, I smile and try to laugh my way through. I keep moving forward. I do my best to downplay the challenges but it doesn’t mean I enjoy any of it. I start to feel like a fraud. Every compliment over how well I deal with my illness makes me uncomfortable because if people saw me at home or heard my internal dialogue I doubt they’d think I dealt with it well at all. Truth is, everyday I confront my deep anger and hurt. 

Those folks who see my walk and see the Divine’s presence miraculously keeping me alive probably think I should be thankful for those times where I could have died and did not. Which, of course I am thankful, but at times I’m a bit resentful over those experiences. I’m sure that confuses a lot of people. I’ve never been able to adequately explain why I have some resentment. That is, I couldn’t until I once again read The Sparrow. 

The story follows a Jesuit priest who was the only surviving member of a mission that made first contact with intelligent life on another planet. He comes back to Earth maimed, despondent, and with a horrific reputation. Another team from Earth followed behind the original mission 3 years later only to discover a planet divided in violence which was blamed on the influence of the original team from Earth. They finally track down the Jesuit priest mortified to find him in the roll of a prostitute and witness what they believe is his intentional action to murder a child. Needless to say, those reports from the following team caused a massive outcry against the Jesuit priest. The full story is revealed in the inquisition by Jesuit leaders while the priest answers their questions leading the reader into a series of flashbacks that slowly reveal what occurred. One of the main questions that is wrestled with by the Jesuit inquisitors was how a man who was reported to have been experiencing a true mystical experience, so much so that his superiors indicated that he should be looked at in consideration of sainthood, could fall into such depravity.  

Now, I’ve never made contact with an alien species nor have I ever been considered for sainthood. I have however experienced what it feels like to have a crisis of faith after watching your world go up in flames. That constant rub of realizing you really were doing all you could to follow the will of the Divine and still you get epically burned. When I reread this book and came across a certain line I clung to it saying out loud “Yes! Yes! That’s it exactly!” What could that quote have possibly said to provoke such a response? I’ll tell you. Mary Doria Russell writes the following statement through the voice of the fallen Jesuit priest:

“He wondered then if Jesus expected gratitude as Lazarus emerged, stinking, from the crypt. Maybe Lazarus was a disappointment to everyone, too.”

Just sit with that for a moment. 

How many times have we heard the story of Lazarus? How often did you think about what the practical implications of that experience were? I’ll be honest, I never really took the time to think about what it would be like. I think I assumed he just came back to life good as new and smelling like a rose. That his story was only important because it was used as a medium to share the saving nature of the messiah. I don’t know why I thought that. I mean, even when Jesus arose he still had the wounds of the cross. Do you think Lazarus made out differently? I don’t know. It’s all speculation at this point but I think it’s worthy speculation to explore.

I wonder if Lazarus was overwhelmed and exhausted. I wonder if he said to his sister Martha, “I’m glad I’m here with you but I’m worn from the burden of this body.” I wonder if Martha replied, “God never gives us more than we can handle” or if she said “But look at the miracle you are! You’re an inspiration to everyone who hears your story.” I wonder if Lazarus ever learned how to reconcile his death with his new life. I wonder what the conversation he shared with Jesus sounded like. 

I think Lazarus would get why making it to 64 sounds like a bad trade off. I bet if I got to have a conversation with Lazarus he would understand the intricate reality of thankfulness entwined with resentment. To be a miracle manifested is a heavy responsibility. 

Everyday I feel my body lose a little more. Every song I feel the death of that gift creeping in. Everyday I feel the weight of maintaining a stance of thankfulness and optimism despite how utterly broken I am. Everyday I come to the Divine asking how I can find a way to be thankful that I keep getting thrown back into this life. If I saw Jesus there’s no question that I’d answer his call eventually but I’d probably grumble about it. Perhaps I wouldn’t grumpily openly to every one but I would grumble to Jesus. I know Jesus can take it. That he encourages that. After all, if I can’t tell Jesus that his call is a little more than I can handle how will the Divine pull me through. It is through my acknowledged weakness that I find the support and strength the Divine has cultivated around me. 

I don’t know the answers here. I don’t know how to walk this path any other way. What I do know is that I don’t want to be a 64 year old Lazarus but if that is what the Divine asks of me I’ll do my best to follow Lazarus’ lead. I’ll find ways to smile and be optimistic. I’ll find ways to move forward and when I inevitably come to the end of this life I know that like with Lazarus, Jesus will weep and then call me to his side. Thanks be to God.

The Journey From Anger To Joy

Often after I write a new piece or have conversations with others about where I’m at spiritually and physically people respond with a word that I have an uneasy feeling about. They say it’s inspiring or inspirational and ugh, that just seems too heavy for me to carry. I think that somehow people miss the hard work that goes into getting to where I am. It’s as though they think that the hardships I face, do not, in fact phase me or that I easily move to a place of hope. Or worse, that I am somehow in part responsible for their own motivation. I know it’s supposed to be a word of encouragement but I’ll be honest it weighs heavily on me. Let me be clear here at the very beginning today. When I share it’s because I started in a place of devastation, despair, grief, and fear. My writings, my shaping, my listening, and my voice all begin there. 

It’s not because I’m a whiner or a victim. It’s because in the journey of life we all face trials and tribulations. It’s because I do not want to stay in despair or fear that I choose to do the hard work of not automatically dismissing those realities.

When I first got diagnosed with Lupus I was grief stricken. Hoped seemed lost. The pain was great both physically and emotionally. I had to give myself the freedom to acknowledge those feelings. I needed to listen to my heart and soul. I needed to take those realities to the Divine and let my Creator mourn with me. This was holy grief.

When I was sexually and physically abused I was frightened and angry. Not because I was a victim but because I found it almost impossible to find a way to not only heal my own brokenness but to help nurture what healing needed to take place for those who tried to victimize me. This was not easy and joy-filled. Again, I held these realities close and welcomed the Divine in. I felt and heard my Savior weep with me and rage against the injustice of a reality in which these atrocities were possible. This was holy searching.

When I felt alone and abandoned by God my anger was palpable. It was no easy feat to keep my heart and soul open for a new word. This was holy listening.
In my limited experience on this earth I have learned few things, but I have learned this: when I allow myself to acknowledge my devastation the Divine will bring me through to new realities. This is what it means to engage with the Holy.

I move through devastation to despair, despair to anger, anger to calling, calling to hope, and hope turns to joy. I see that truth reflected in Scripture. I see it reflected in my relationship with my disease. And, this weekend I saw it in those across the nation and world who marched.

Now, before I go further I’d like to say this to my friends and family who had words to say about these demonstrations that were filled with concerns, confusion, and/or anger. I hear you. I’m thankful for your words. 

To the women who have said that they’ve never felt like a victim or oppressed, I celebrate that that is your experience! How wonderful! I’m happy that that is your reality. 

To the folks who call those of us who marched whiners, I appreciate that you are calling attention to our voices. I do not feel like I was whining personally nor did I encounter much of that, if at all, from the marchers I met. I felt like I was helping to safeguard the progress we have already made and giving voice to those across the nation and globe who needed one. 

To the people who have asked that I give our new President a chance. I am and will continue to do so. Part of that is the freedom to state my concerns openly so that as the leader of our country he may take into account my voice and the voices of others.

Now that I’ve thanked you all for your voices and I hope you know I genuinely do thank you, I’d like to express what surprised me when I participated in our local rally.

I anticipated a lot of people who would be angry and that they would give voice to that anger. In fact, there were some who were angry and did give that anger voice. Some brought signs I would not have wanted to associate myself with but that did not negate their anger or concerns in my opinion. 

And while there were those who were angry, the overwhelming majority of people I encountered and the atmosphere of the event were not marked by anger but by enormous love, acceptance, and gratitude. Indeed, these people had done the hard work of moving from devastation to anger. Then they felt that anger and heard a call. They responded to that call and found hope that others heard it too. Then even more astonishingly, when we gathered together we found great joy in one another and in the knowledge that our diverse experiences and voices could help safeguard what is good and right as well as shape what is to come.

Some may call this foolish. Others may call it inspiring. No matter what you call it, the truth is it is indeed shaping.

Wherever I go from here I will strive to listen to as many voices as possible. Your experiences matter. They are not just anecdotal. They are realities we all must grapple with. I am thankful for your stories, your wisdoms, and your voices. You shape me, praise be to God.

Oh So Difficult, Oh So Beautiful

Most days it’s pretty difficult to convince myself to get up out of bed. It’s even more difficult to convince myself to go out in public. It’s nearly impossible to convince me to go out on my own. With how sick I feel my energy is not where I’d prefer. Then there’s the fact that I deal with significant hair loss and one more piece of my self-confidence takes a hit. Add the vasculitis rashes I deal with and it’s downright hard to feel like I’m presentable let alone pretty.

One of the ways I combat all those negative feelings about my appearance is how elaborate I make my headscarves. It’s become a bit of a trademark for me. The more bling I can add the better. I’m constantly searching for new ways to wrap and braid my scarves. My thought has been if I’m gonna feel like people will stare at how sick I am I might as well make myself something worth looking at. In short, my headscarves and wraps are rarely subtle. It’s a small thing but it has come to mean a lot to me.

So, when I was accosted a few weeks ago while I was alone in public because of my headscarves it’s easy to see how affected I was emotionally by that. The man who accosted me was clearly not someone who knew sense in any intimate fashion but that did not lessen my anger or hurt. Some may have decided it would be safer to stop making such noticeable headscarves and wraps. That would help ensure I would not have to deal with that uncomfortable and dangerous situation. In typical April Beth fashion I chose to do the opposite. It only ensured that I would be even more fervent in how frequently I wore my headscarves.

Today at lunch I had the urge to go to Walmart and look for some more accessories for my headscarves. I mentioned to my Mom that I wanted to go after lunch. She looked at me as I would have looked at her if she had said she wanted to go to Walmart. She was not thrilled. I told her I’d go on my own. I had more energy today and I knew what I was looking for. I hate going to crowded places looking so sick but for some strange reason I really wanted to go this time.

As I was walking towards the accessories I walked past two sisters. They looked to be around their mid-thirties and they were looking at scarves. One of them was clearly unwell, wearing a bandana, and tears were streaming down her face. Not wanting to disturb this hard moment I walked quietly by. That is, I walked until I heard the other sister say, “Excuse me Miss?” I turned around. The young woman continued, “Um, how did you do that?”

Understanding I replied, “My headscarves? Would you like me to show you?” The sister who had been crying slowly looked up and said “You would do that?” I told her I’d do it right now in the bathroom. I quickly told them what supplies they’d need. It takes a bit to give the Illusion that you have hair underneath those scarves. After picking up two scarves, a faux bun, bobby-pins, and a headband. I waited by the bathroom as they made their purchase. We went into the bathroom and I unwrapped my headscarves. I started showing them what I put together under the scarves and while we got her faux bun attached another woman walked into the bathroom and started watching us.

“What are you doing?” she asked. “I’m showing them how to tie some headscarves.” “Can you hold on one minute?” the new woman inquired.

She stepped out and a short while later she was followed by another woman wearing a hat. The hat wearer said, “I just lost my hair and my friend got me this scarf but I couldn’t figure out how to tie it.”

“No problem. Pull up a mirror. I’ll teach you both.”

Soon a few more women wandered in and saw what was happening. There we stood a collection of sick woman tying scarves while the well women cheered us on and ooo’d and awed over our creations. I must admit that I started crying a bit. These women both talked about how difficult thinking about showing up to their respective Christmases looking as sick as they did. They’d both come to the store drug in by friends and family to search for something to make them feel beautiful, all the while internally feeling like that was impossible.

The sister told me that she wouldn’t have had the nerve to stop me but I was alone and she thought I might be more understanding. How thankful I am that I went alone today.

As we finished up my tutorial I gave them all my info and several YouTube channels that I found helpful when I was first learning. The women expressed a want to go and buy some more accessories for their headscarves and I said, “Well, that’s what I was headed to do to start with.” As we made our way back into the store I heard one of the ladies tell their husband how much better they felt about Christmas. That husband came up to me and said. “Pick anything you want out. You made my wife smile and that’s the first time in weeks she has. You just gave us our Christmas back. Let me give you some in return. Merry Christmas.”

I cried some more and picked out a pretty flowered headband. As we all made our way to the check out the cashier asked us where we all met. We replied, that we met here, just now. Laughing and hugging we left to each go on to our own lives.

But as I sat in my car preparing to leave I took a moment to wonder over the nudging of the Holy in my life. Of all the things I hate and worry over, of all the little silly things I do to try to feel good, it took both to bring a little Christmas to the world today. I’m so happy I’m stubborn enough to wear my crazy scarves and I’m so thankful that the Divine took something so difficult and made it so beautiful.

That’s Christmas, oh so difficult, oh so beautiful. Thanks be to God.