Saving the Unsalvageable

As anyone with a chronic illness can tell you there are times in which finding hope seems impossible. You have a flare and one symptom turns into two symptoms. Somehow two symptoms turn into four symptoms. The symptoms start to multiply so quickly that it’s easier to state what doesn’t hurt than to list everything that does hurt. With every new symptom new limitations get placed around you and you find yourself isolated from the world around you.

Several weeks ago my vasculitis started rearing it’s ugly head in my direction. First my cheeks and nose were covered. It then continued to slowly spread until it covered my head, ears, throat, neck, and chest. That was frustrating enough. Not only does the vasculitis change how I look physically but it also causes intense neuropathy. Aside from the neuropathy my internal pain increases as well as internally the vasculitis takes hold of me. Sore throats, nose and mouth ulcers, consistent coughing, migraines, and fevers come along for the ride too.

As many of you know I find great solace in knitting and crocheting. As my physical limitations increase I found that the creative energy I spend in fiber arts brings a sense of healing to my battered emotions. So, when I noticed the vasculitis spreading into my hands I almost lost any sense of hope for my existence. It was like having everything I hold dear being torn away from me.

So, shocking as it doesn’t seem to anyone who knows me I decided to continue my crafting despite the physical pain. That was also a pretty risky choice because it meant I could be helping the vasculitis get worse by not resting my hands. I researched different techniques for every stitch to minimize hand movement. I timed my activity time so that I would stop and rest. I’d ice my hands frequently to encourage healing and pain relief. In short I did everything I could think of short of completely cutting my crafting out of my life during this time.

This time of year is a busy time for a crafter. We are more than likely preparing multiple gifts for multiple people on our lives. In fact, if anyone gets a present from me they should assume it’s handmade. It’s just who I am.

This week I started a knitting project for one of my nieces. I was so excited to buy the perfect yarn, find the perfect pattern, and spend the time I knit thinking of the beautiful woman she is becoming. Every stitch is made in prayerful thoughts for the woman she is and will be.

This project was special and attempting to work on it while dealing with my physical pain was an intense experience. My knitting speed was significantly slower. My brain power was also significantly fuzzy. Every movement was felt but I knew every discomfort was worth it. After 36 hours of dedicated knitting I had finally come to the final touches for the project. I just needed to add the edging. It was around 8 pm and I was tired. I thought to myself that I should lay down my needles and start again the next day when I wasn’t so tired. However, it was just too tantalizing to put down. I dove in with little preparation. After a few minutes I realized that I had made a mistake. I tried to go back and unknit or tink my way back to fix it. In my haste to start the edging I had not placed a lifeline in my project and that proved to be it’s literal undoing. In a matter of seconds a 2 inch by 2 inch portion completely unraveled. This was not a matter of a few dropped stitches. The entire piece was ruined.

My heart began to race as I searched my brain for a way to salvage what I had painstakingly put my heart and hope into. The more I stared the more I realized that in that moment nothing was salvageable. I lost it. I started crying and muttering and my poor parents had to sit in horrified silence as I had a complete emotional breakdown.

You see, it wasn’t that I made a mistake. It was how hard it was for me to even attempt to do the project only to watch it be destroyed in the final stitches. Hours of pain. Hours of prayers. Hours of new adaptation. Hours of hoping that I had not lost one more piece of myself. All lost in one mortifying second. What else was there to do but lay it down and grieve so that perhaps the next day I may find a way to salvage the unsalvageable?

Here’s the hard part. Here’s the part that I can barely bring myself to acknowledge. What affected me the most was realizing that I knew that project was really how I viewed myself. It wasn’t that I was the knitter. It is that I’m the one being created.

I often wonder about my Creator when I engage in the act of creation. Does my Creator feel like I do when he see’s a new pattern taking shape? Is every moment of my existence a stitch from the Divine? How many hours of pain did the Creator spend when it comes to putting me together? What hopes does my Creator craft into my very nature? How often does the Creator see me and find the seemingly unsalvageable?

These are not easy questions to sit with. They are even harder to come face to face with when you find more of your life becoming limited. How can I be salvaged? It feels so impossible. Who would want to pick that up and try again?

Yet, that next morning in high stress and apprehension I did pick that project up again. I spread it out lovingly and carefully on the dining room table and slowly began to unravel it row by row until I could see a way to make it right again. Then I slowly, gently, and with hope began to pick up each and every stitch back on my needles. I whispered encouraging words to myself and the piece as I did so. Things like, this is possible and just one little stitch at a time. Even going so far as saying, we can do this, as if the project had the ability to help in it’s own creation.

All stitches found and accounted for I sat back down in my chair and started knitting again. I’m happy knowing that my niece will still benefit from the time I spent creating with her in mind.

Now, we can leave this story here. There are plenty of truths we can glean from my knitting fiasco. In fact, I’ve been dwelling on it for a while thinking how it brought me to a closer understanding of my Creator.

However, I find I can’t leave it at that. It seems the Creator had one more truth to share with me.

I do feel isolated from the world around me when I am sick like this. The picture of what is unsalvageable in me shapes a lot of my interactions. In fact, I struggle greatly seeing any value in myself when it comes to my relationships with others. I think that it must be exhausting to be my friend. That I must seem a continuous Debbie Downer. I think my presence could only point to how broken this world is. Yet, I also logically know that community is not about me. So, I do all I can to engage and cultivate my community.

As is always the case I find that my engagement in church community is always a reflection and reminder of who I am called to be. So, I do all I can to be present even when it’s difficult. I show up even on days where I’m more purple than caucasian. I attend even when touching is painful. I manage my time so that I can be present even though my energy is failing. All in all I do everything I can to be in community despite how isolated I may feel. I don’t want you to read this as me giving myself a pat on the back. I don’t feel that I deserve one. That’s what you are supposed to do when you join community. You choose to be present. You choose to engage because community is not about you and how you feel. It’s about everyone else and how you can love and serve more wholly.

Today I went to my church. I was exhausted and as is typical in pain. I looked sick but I put effort into how I presented myself. I put on my nice clothes, worked my scarves in their elaborate braids. I dressed to minimize the physical aspects of how sick I am.

I arrived and greeted people. I stood up to sing in unity. I bowed in prayer in communion. I joined in active listening to the word prepared for us. I celebrated birthdays and mourned the hardships of others. In short, I participated in my community even though I felt pretty unsalvageable.

That alone would have been enough. That act of being a part of community would have strengthened me to move forward despite my own doubts. But today the Creator and my community gave me more than I could have imagined.

As we prepared to pray in community Deanna Larson, a woman who has taken me under her wing at church, stood up front and did something that I’ve never witnessed in all my years of church community. With incredibly loving and humbling words she recounted the struggle my health is. She said even kinder words about me than I deserved. Even more humbling she petitioned our church to hold a 24 hour prayer vigil for me. In her love and wisdom she stated that while we often wish we could carry each other’s burdens there are times when we can not. That the only thing we can do is surround each other in love and prayer.

As I sat in the pew and listened to my church community lift me up in love I felt the hands of my Creator picking me up while gently and encouragingly putting each of my stitches back onto the needle. Because in the world of the Creator nothing and no one is unsalvageable. Every stitch is made in hope. Sometimes it takes a little longer to knit life together. But the Creator shapes and molds us in love for our communities. We are crafted beautifully to be used in service to others. And every once in a while, when we feel the most pain. When we feel the most lost. When we feel the most isolated. When we feel unsalvageable our communities become the very hands that help us knit it all back together for good.

How humbling to see yourself in creation and in community. Thank you to all of you who have joined in my community. I hope that as I am knitted new once again that my usefulness will point to the beauty the Divine brings to all of us. It all feels like too much and not enough. How grace-filled it is to be that which is created. How wonderful to be unsalvageable and through redemptive love and grace be made beautiful once again!

The Excruciating Wait

I’ve been largely absent from most of life these past couple of weeks. That happens when my body decides to take over. You’d think that after 20 years I’d some how get used to it but I never really do. I sit here covered with a giant vasculitis rash that looks like some sort of contagious zombie disease. It’s excruciating and disgusting. I find myself secluding myself from the rest of society. Lord knows I hate going out and looking like this. But the real struggle is the fact that my body continues to add more symptoms to an already overwhelming existence. Knowing there really isn’t anything else to do anymore but wait and hope. We’ve done all we can and still we wait.

How tiresome it is to always be waiting and hoping. Waiting for it to stop spreading. Waiting for the pain to ease, waiting for my energy to return. Waiting to see some silver lining in all of this. Hoping that one day I’ll look into the mirror and not see my illness. Hoping that I will find something to laugh about. Hoping that I walk this journey with as much compassion for myself as I have for others. Hoping that I not fail to remember that my physical health is not my definer.

The past few weeks my Pastor has led our congregation through various Old Testament stories. What has stood out for me as how often those stories revolve around waiting and hoping. We read those stories about Abram waiting for a child or Israel waiting for Moses and think how impatient they all were. But, were they really that impatient? I find that doubtful. The stories are narrated in short segments but span great lengths of time. These character, these people were waiting for years for their hopes to be realized. I totally understand Israel wanting some way to see that promised hope realized. I imagine their prayers sound a lot like mine do. The prayers where we try and convince the Divine that we are ready for our promised hope.

In that anxiety filled waiting we can make the worst decisions of our lives. We grasp for anything that looks promising and lose sight of what is true reality. It’s in the waiting that we know true fear. The fear of the unknown is always greater than the known. When we act out of that we lose sight of who we are called to be.

As I wrestle with that knowledge I wonder how I will survive this current wait. Am I doing it with integrity? Am I grasping for the Holy or just grasping for anything? Am I continuing to live out of who I’ve been created to be? I honestly don’t know those answers. I know what I strive for but as I sit through this excruciating waiting period I can barely look beyond my current predicament to see my own future. I worry that my hopes are not aligned with the Divine’s hopes for me. Yet, I still can not release them. I still wrestle with the story the Holy has given me.

So, I come to you in confession. I am exhausted by my waiting. I’m overwhelmed by my hopes. My Lord, I beg your patience with me as I struggle to learn patience. I beg that your hopes shape mine own. I cry out for your comfort for I know no other. May my waiting and hoping always be marked by you and not by my own faults. I pray that as I reach out to grasp I grasp onto you and none other. I will continue to wait and I thank you that you join me in the wait. Even as I wait for my promised hope you sit beside me and whisper those hopes into my soul. I am not alone even in my darkest questioning I feel your presence shaping me. Thank you.

My friends, for what are you waiting? Does it seem excruciating and overwhelming? Can you find your grace in the waiting? Can you recognize the shaping that takes place? Are you ready for your promised hope? I can’t answer that for you but I can support you as you ponder those questions. And I will wait with you through all of it.

Walking Alone Together

As is often the case I find myself grappling with my current reality. I struggle with depression and crippling anxiety. It’s fairly easy for me to automatically assume that my emotional and spiritual discontentment is based on my own depression and anxiety disorders. The problem with that is sometimes that gives me permission to not determine what is actually causing my discontent.

Yesterday I was talking and lamented that my current situation feels crushing emotionally and spiritually. Here are the truths of my current context: I know I am a mystic. I live with a severe chronic illness. I feel called to live in and cultivate community.

Those three truths when lived in together are hard to hold in tension with one another. There’s a reason history is filled with mystics who seclude themselves from society. There’s a reason why a lot of folks with severe chronic illness choose to spend a majority of their time by themselves. However, I believe that as a Journeyer with the Divine I am called to live in community just as the Divine does. This calling complicates things.

As I reflected on some of my struggling my wise mother pointed out that I was angry. And boy, is she right. I am angry. It’s a nuanced anger and by automatically assuming it was just anxiety and depression I neglected my own process to move through my anger. I stalled the healing process by refusing to acknowledge the truth of my own feelings. There are a lot of reasons I’m angry but I’m choosing to share one of those reasons with you all today.

A few years ago I made the conscious and intentional commitment to allow my chronic illness to be used as a tool for my own spiritual formation. Within that I discovered what can only be described as a tugging at my soul to write about and share the truths I was encountering through that process. I do not regret this. However, there was a consequence that I didn’t fully understand at the time. I have discovered that how I move through this life and illness impacts those around me in ways I did not anticipate.

I started worrying about if I was traveling this road with integrity and a modicum of grace. I put a responsibility on myself that was too heavy. If for some reason I failed to “be healthier” or failed to find a way to be content in my broken body I felt as though I was failing my community. I put that on myself. An unrealistic and false responsibility. It is not my job to win my struggle for anyone else. To be perfectly honest I know I cannot win this struggle or this reality. That’s why I travel towards and with the Holy.

And while that is truth, I still struggle with the realization that others will and do use my bodily and emotional experience as a way to lend credence their own theological beliefs.

Earlier this week I had a very vivid dream. In this dream I was talking to a stranger and was becoming increasingly agitated as he continued to reference my disease as a way to prove God’s providence. At one point I lost my cool and yelled out this specific phrase, “Stop using my body as a proof text for your own beliefs!”

I woke up and that phrase was ringing in my head. I immediately wrote it down. I told others about it because I knew and still do know that this is a source of my anxiety and anger. I do know that most people love and care about me. That they see my journey as one to inspire them, that they somehow see proof of their picture of the Divine in the fact that I still journey. People says it’s the power of prayer that I can still walk. People say it’s a testament to faith that I move forward. People say it’s a story of grace that shows who the Divine is that I still smile. While I cannot wholly disagree with these statements they make me feel like people are pulling these examples out of context and by doing so short circuits their own spiritual journey.

While I do encounter Truths that I feel led to share the fear that people see more in this vessel than there really is consumes me. My illness and how it plays out is not due to how others pray. Whether I get better or not has nothing to do with gaining or lacking divine favor.

I continue the journey like I started it, with the knowledge that prayer shapes those who are praying. That prayer brings wholeness by giving us the tools to deal with what may come. That prayer enables us to see who we are called to be. That prayer enlightens us to deeper truths.

I move forward in the journey like I started, with the knowledge that my illness is not a reflection on my or anyone else’s sins. That my illness is not a definer of my failings. That despite what others may teach my illness can only be used as a way to point towards the divine because it is through brokenness we most clearly see wholeness.

Without this knowledge. Without the reality of my mystic nature and my constant physical struggle I would not be who I needed to be in community. It’s not so that other’s can use my illness as a way to see the Holy. It’s so that I can see my greatest struggle as a way to discover the Holy. I will share with others the truths and I invite you on my journey but this body and experience is mine. The truths you lay upon it are just that, yours.

I regret putting a crippling responsibility on my own shoulders. It does not matter if others see the truths I speak. What matters is that I continue to be faithful. What matters is that I continue to speak truth regardless of how others interpret them. What matters is that I hear the Divine calling me forward and even in my anger I follow.

This is not the life I had wanted. It is not the life I hoped for. But, this is the life I lead and I am grateful, for it is life. It is life poured out in it’s most vulnerable. It’s a life that pulls me forward even in my fear. It does not end no matter what this body does. My life grows everyday into new realities and it is the only life I can’t live without.

As always the journey continues and I invite you along. What responsibility have you unreasonably placed on yourself? What truths are you trying to live into? Have you let others dictate your own reality? Will you choose to live out of the Truths the Divine gives to you? The road is long and hard but you are not alone. I’ll be with you as you discover those new realities that the Holy gives to you.

I Am Not A Warrior

This past week was a difficult one for me. To be honest I expect that this next one won’t be much better. The storm clouds have gathered and I must weather it. I alluded to it earlier this week in my letter to Cissy but I guess it’s time to just openly tell everyone what’s going on.

This week I started chemotherapy again. Thankfully it’s not infusions but the dosage is still pretty high and comes with the same side effects. I knew it was coming. I can read the signs. Still, it is never easy to lose more of yourself. I was not ready to go through this again.

As people found out they were all extremely supportive. Everyone wanted to say encouraging things and lift me up. I appreciate that. I really do. However, some of the things people said made me uncomfortable and honestly a little angry.

First let me start off by saying that it’s not anyone’s job to shape this journey for me. It’s not my parents or siblings. It’s not my pastor or my church family. It’s not my friends. That burden lies with me and the Divine. I’m not in need of broken clich├ęs to bolster my spirits. I’m not in need of anyone else’s claims for a cure. The only thing I need from people is their loving presence. The “fixing” and the hope must come from the Divine. And I don’t mean fixing as being miraculously healed. I mean fixing as being made whole.

I’m thankful I have so many folks in my life who care enough to search for the right words to support me. Everyone has come from a genuine and loving place. Yet, I kept hearing two words that people were using to describe me and I feel the need to stand up and say that those aren’t accurate depictions of who I am.

The first is that people were calling me a survivor. That doesn’t sound so bad until you actually follow it to it’s conclusion. To survive something that thing must end eventually. Lupus does not end. It stays even on the best of days. Lupus is still there. It’s not curable and the only way to survive it is to move on to the next life. Thankfully, I’m not there yet.

The next descriptor was one of a warrior. I’m a lupus warrior who fights everyday. Now, I know some actual warriors and they are an impressive lot with gifts and actions that I do not possess and am unwilling to do. This word conjures up images of war and not just any war but a war against my actual being. I refuse to look at it that way. I’m no warrior. I can’t be. I don’t want to be. I will not be.

So, that begs the question. What am I? Who am I? How do I do this? As is often the case I spent a great deal of time pondering those questions and today I found at least part of the answer.

I am journeyer. Not just any journeyer though. I’m a faithful one. I’ve been called time and time again to let my being bear witness to the wholeness that the Divine brings. My very brokenness somehow points to the Divine and it’s humbling and exhausting.

I’m faithful but I’m not doubtless or fearless. I’m not filled with joy over every dark path I’m led down. But I have been called to a faithfulness that spurns me on despite all my wants to stop. I’m faithful despite the fact that I wish my journey was a different one.

I don’t don any spiritual armor to battle my way through. That would be the exact opposite of who God created me to be. The Divine has called me to be shaped and I must be vulnerable and unarmed for that to take place. I must continue to listen and explore. I must be willing to live in grace and that is too hard to do when one is fighting.

All of these experiences have taught me something invaluable. I can still move forward through the pain and do it without fighting it. I can do it by embracing that pain. That pain reminds me of what it means to be human. It reminds me of what it means to be a Kingdom citizen. This pain brings me a closer relationship with the Divine because I can not see a life of worth without the Holy. If I were to allow myself to let those other words define me I’d find myself missing too much of who I am supposed to be.

I’m not a survivor yet and that is ok. It is even good. I’m no one’s warrior and that is peace-filled. I am just a faithful journeyer who knows that despite the darkness of the path it will end with the light. This is who I am. Wholly broken yet wholly marked by God. Thanks be to God.

Dear Cissy

Dear Cissy,

I’m so thankful for all of who you are and who you were with me. As I sat in the doctor’s office today I felt the loss of your presence more keenly. We used to sit side by side causing havoc for the nurses and laughing as they tried to figure out what to do with us. We used to hold each other when the pain was too deep. We used to dive into the deep waters of future hope together and discover divine truths we could not find on our own. Together we found how to live in our broken bodies.

Today as I sat on those stupid examination tables covered in crumpled paper my heart cried out for the friendship that strengthened me beyond all possibilities. As I heard the words that I knew were coming but I still did not want to hear, I wondered how I would do this without our partnership. I did not want to think about having to go back to a treatment that felt like torture. I do not want to fall into false hopes but I also do not want to fall into total despair. Our friendship kept those two realities in tension.

As I sat in the car driving to the pharmacy I thought of our laughter and tears. I thought about all the times I could almost feel your breath in my ear whispering words of encouragement and sorrow. I thought about how your body is gone but your soul continues to visit me.

As I sat in my comfy chair and pulled out my yarn I remembered that you would never let me do this alone. You are still my partner in this. I am not alone you lend me your strengthening love everyday.

You will always be my friend and while I wish to join you again I know that you think my presence here is worth every bit of pain. You will help me answer the tugging of my call and point to the Divine every time I feel lost.

So, yes, I may lose my hair again. Yes, the pain will get harder. Yes, I will be exhausted and worn down.

Yet, I also can say this; Yes, I will move forward. Yes, I will drive my nurses crazy from my silliness. Yes, I will be held when the pain is too deep. Yes, I will continue to dive in new realities that introduce me to the Divine in new ways. And yes, I will continue the legacy of our journey together in our broken bodies.

All of my love,
AB

Strange Stories Strange Realities

Recently I’ve spent a lot of time researching stories and why people find certain stories more compelling than others. What aspects of a story allows it to become a part of our life? What takes a story from good to life-altering? There a plenty of theories but one theory that I continue to encounter is that the more complex a story is the more drawn to it people are. Complexity encourages discovery. Discovery encourages conversation. Conversation encourages community. Once a story builds a community it has a hold on society.

My entire life I’ve been told I am weird, odd, and strange. Very rarely did I take that as an insult. It means that at the very least I’m not boring. Yet, what people apparently find strange about me are the parts of myself that I find come most naturally to me. This has made me wonder if my natural state differs so greatly from others or  if  people are actually more like me than they’d like to admit? What is it about my natural tendencies do people find so different or disturbing?

This past Sunday as I was visiting my former church we reflected on the story of the woman washing Jesus’ feet with her tears. I’ve always loved that story. It’s a wonderfully intimate look at pure love and pure hope in the Divine. It is a story that evokes all of my senses and I can easily imagine the atmosphere, the tastes, the smells, the feel of the oils, the sound of the woman’s crying, and the tenor of Jesus’ voice as he declares her sins forgiven.

I cannot remember a time when I did not know this story. A great benefit of growing up in my household was that I was told these stories over and over again. I often will tell people that my family sees life in stories. Some of that may be  because the ministers of the clan can find anecdotes for sermons but I suspect it really is because we are a clan of storytellers at heart. So, it’s not surprising that scripture, which tells the greatest story, took a prominent place in our life.

So, when Pastor Gunn remarked on the strangeness of the crying woman’s actions it was surprising to me that that had never occurred to me before. Indeed, this story that I know deep in the marrow of my being never seemed strange to me before.

And that is when it hit me.

Strange stories lead to strange realities.

My education in life has been the complexities of a mysterious God shared in strange stories. The greatest story is the most complex, most compelling, and when told right and discussed honestly builds community. Not only that, but I was indeed raised with storytellers who steeped me in strange stories and that led to a life of a strange and mysterious reality.

This is the calling. We tell the story to become the story. We let it define us and identify us. We become a community that is the story moving forward. What makes a story great is that it continues in each new telling. New life is breathed in every word. The strange becomes reality. Thanks be to God.

Awareness

As lupus awareness month comes to a close I find myself once again reflecting on how this disease affects me. I try to stay in the positive. I do what I can to let it shape me for the better but I must admit I still struggle with it. There are a lot of factors for why I do, not the least of which is my continuous reality of depression and anxiety. I must stay vigilant in doing all I can to keep my mental health in a good place. It would be difficult to do that without my other physical struggles but with them it often feels insurmountable.

Lately those struggles have been particularly present. As I enter back into an active flare my physical limitations frequently make me assume that my worth has diminished. I am constantly having to remind myself that my worth is never diminished by my disease. In fact, if I am being rational I must remind myself that the way my disease has shaped me may have increased my worth.

Why? Because my disease has forced me to view this world in an entirely different way. It has created a deeper empathy in me for others. It has inspired me to search for a fuller understanding of the relationship between Creator and creation. It has given me the reminder that I have made it through the worst days I’ve ever encountered and I am still here. It has taught me how to accept pain of all sorts. Perhaps the most powerful way it has shaped me is it has awakened a voice in me that refuses to stay silent. A voice that compels me to advocate for myself and others.

This voice speaks to compassion, love, and mercy. This voice speaks to vulnerability and honesty. This voice speaks to the reality that soul worth is true worth. This voice speaks to uplift and encourage. This voice speaks thankfulness to a Creator who can use the brokenness to bring wholeness.

Lupus is called the cruel mystery. I must agree that this disease is often very cruel and it is also mysterious. Yet within that mystery one can discover more than the mystery of an illness; you can discover the mysteries of a life that often stares over the edge. I’ve mentioned before those edge moments. Those moments when you must decided whether to continue or not. Those moments when control is a proven fallacy and hope comes in the form of desperation.

Despite all the things that this disease has taken from me, lost relationships, damaged organs, clarity of mind, feel good days, and a sense of stability; this disease has also brought me beautiful realities that outweigh every other difficulty. No price is to high for a life lived as mine has been. It is an overwhelming existence. It is an exhausting existence. It is a mysterious existence. My hope is that in most ways, and hopefully moving towards all ways, my existence is one that will always point toward the Holy.

It’s the end of lupus awareness month but it is not the end of awareness. I am forced into the awareness but you have a choice. You can choose to be aware or to not be. So, this is my plea, choose a mysterious life. Choose to find the beautiful realities. Choose awareness.