Lupus: Be You With Them

I am frequently asked how someone can help a loved one who has lupus. My answer is one that tends to seem like a big let down to the questioner. Just be you but be you with them.

This is usually met with some blank stares or perhaps absent minded nodding meaning to convey understanding. A lot of time people equate the gift of presence as just physically being around someone. Let me be clear, that’s not the gift.

Last week I was out at one of my weekly gatherings that I go to. There was a new-ish member there who was clearly having a rough day. I inquired if she was ok. She informed me that the weather was causing a good amount of pain for her. In my urge to empathize I said “I know how painful weather changes can be. I’m so sorry.” This statement was not received well. She jumped on it immediately, “You have no idea! Until you too have an autoimmune disease you could never know!”

Well, clearly those who know me know that I do indeed have not just one but multiple autoimmune diseases. Yet, as we were in a public space and she was clearly in pain I decided to just apologize and let her be. There was no need to correct her because that could only have brought on an even bigger scene.

Cut to a while later and she overhears that I’ve been through chemo. Which then leads to the awkward question and answer session about what cancer (not cancer) I battled. But if not cancer then what? (Shock!) Needless to say, it was one of the most awkward conversations I’ve had about my lupus because I knew she was having a bad day. And bad days can equate to bad social interactions fraught with misunderstood meanings and hurt feelings. I left feeling a bit defeated and didn’t really feel like returning to be around that gathering again until my emotional defenses were back up again.

Unfortunately I needed to go back to that group several days later. I drove there with anxiety, pulled up and parked my car, and sat there for quite a while working up the energy and nerve to go inside to be with people. So, I took the time to remember why I went in the first place. I’ll see so and so and they always make me laugh. I’ll sit next to that person and we will giggle about our book boyfriends. I know that woman will rush across the room to envelop me in a hug. That guy always takes the time to connect with me. And so the list goes on. Because all of those people (a lot of you) make all the world in living a life like this one. Because you incorporate all of yourself in your relationships and it creates a healing loving space.

Strange as it seems, the new-ish member reached out to me after a few days. She was worried she had broken relationship with me. Of course she hadn’t! I know what those pain days are like. Grace folks. I need it and so does everyone else. I told her as much.

Her response floored me. “You were kind and gentle when I didn’t deserve it. You tried to preserve my dignity when I tried to throw it away. You saw past my anger and saw my pain. I didn’t know people who weren’t my intimate friends could do that.”

Y’all, for years I’ve been working towards living into the best aspects of myself. I’ve been trying to live a life that is marked by the grace I feel from the Holy that comes not only mystically but practically from all of you. And for at least one instance in my life I achieved that. That which seemed impossible was achieved.

And that’s exactly what it means to be you but to be you WITH them. It is the holiest parts of you that shape someone. Your humor, your laughter, your love, your insight, you kindness, your preservation of another’s self, your grace.

It’s quite simple really. Just be you. Which is to say it’s quite difficult and heroic. Because no one else can be you and fill that void. That’s all you.

What can you do? Oh my friends, live into who you are and please invite us to join you along the way.

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Lupus: The Sorrow, The Holy, The Community

I have not wanted to write lately about my life with lupus. I’m at a loss as to what to say anymore. What hasn’t been said already about it? These past years I’ve been fairly open about the struggles this life brings and as supportive as everyone has been of my writings it starts to feel a lot like selfish navel-gazing.

Yet here we are. It’s that time of year where I’ve committed myself to raising awareness of this disease and for me that translates into my writings. So here I sit, phone in hand diligently plucking out words with my thumbs in an attempt to find something worth sharing.

It’s been a crazy year that has brought immense joys and immense sorrows. I have mostly made peace with my body. That is to say I’ve come to expect that it will misbehave and cause me trouble. I do not fight that anymore. I do my best to make space for my illness to do what it does. What I find myself fighting most is the leadership within a medical community that still can not fathom an illness that they do not understand and a government that does everything in it’s power to keep many of us with physical and mental disabilities from receiving care and benefits. That battle has been excruciating in ways I cannot adequately express. It is a process that shames and belittles, a process that demeans and cuts to the quick. I think, in fact, that it is more psychologically damaging than the physical, domestic, and sexual abuse I endured in my previous marriage. When those in authority deny your very self it is crippling in ways I can not explain, driving oneself further into a deep depression where no light for the future can be found.

I have been lucky though. I have an incredible support system that constantly points me to the Holy spark within me. They care for my physical and spiritual needs and that is a great gift. They have sustained my existence. For if this disease hadn’t killed me by now my depression surely would have. If not for my family who continue to grasp me tightly when I find myself flailing in the darkest nights of my soul I’m not sure which reality I would be present in.

Still, there have been great moments of clarity that could only come through the trauma of illness and the steadfastness of those who care for me. I remember the moments in which it was clear I was fully embraced by the Divine. The very air was holy and weighted. I was in a surgical suite with a surgeon’s hands placing a port within my chest. The uncomfortable tugging inside my body was like a silent reminder to reach for the uncomfortable tugging on my soul. And suddenly there was Yaweh breathing the Spirit into every second and I felt wholeness for the longest and briefest of moments. I will never be the same. The scars of that procedure are more pronounced then any others I have and I sometimes wonder if that was meant to be my physical reminder of what wholeness felt like, the heady breath of holiness, and that all of this life is transient if we follow that tugging.

I remember the moment my youngest niece saw me and said, “You look normal! You have hair!” And the bitter sweet joy of hearing a four year old be excited to see her aunt look relatively healthy for the first time in her memory. It’s a moment I treasure even as it brings me sorrow that she had so few memories of what a “healthy” Aunt April looked like.

This is the brutal honesty of this disease. It brings great pain and exhaustion. It decimates your body everyday slowly and at times so swiftly you feel like you have whiplash. But not only does it do the physical harm it brings along a host of emotional wariness and strains your mental health to a dangerous precipice. And if you think that this only affects those with the disease you are mistaken because it is just as painful for those that love the diseased. Imagine hearing your child crying from pain and a recognition that the world around them see them as having no worth. Imagine seeing your sister worry over how her exhaustion will come in the way of bonding with your children. That her fear of being so sick will diminish her in the eyes of her nieces and nephews. Imagine seeing your friend crying in her car because she’s worn out and afraid to enter into the public space she was supposed to be going to. This is the reality. It’s messy and painful.

And still, I’m here. I’m as ready as I can be to face the new realities each day. Because of the Divine who embraces me and because of those around me that have dedicated themselves to not only love me but to be aware of what living a life with lupus truly means.

Thank you to my beloved Wiles clan. You lovingly force me into living fully into my created being. I can never reciprocate such a gift except by giving you as much love as my entire being can create.

Thank you to each of you who have adopted me as their own. Whether it is in church community, music community, or just because we are grateful friends, I’m thankful for your presence in my life. It is a gift to see myself through your eyes and a gift for your love to shape me as greatly as it does.

So this year as we focus our awareness on lupus take a cue from my most dearly loved. Grasp onto those with these invisible illnesses for dear life. The struggle cannot be won alone. We need you to show us the Holy. We need you to extend grace to us. Because we cannot be relied on to carry the burden alone. It is too heavy but in community we encounter the light that is wholeness and that brings a greater joy that outshines any pain or darkness.

Pray With Me Not For Me

What can I pray for specifically? It’s the question many of us get so very frequently and the question that can throw me into a panic attack.

For decades I have struggled physically, mentally, and emotionally with my health. There are so many moving parts to having a chronic illness. Your work life (or lack there of), daily symptoms, myriad of doctors, your constant fight for validation, the depression that inevitably comes, the exhaustion that never seems to release, and the relationships your health impacts are all a part of this thing we call chronic illness. If we are lucky we know what’s going on physically about half of the time. That’s if we are lucky. That’s if we have the right team of medical professionals, family and friends, and a willingness to be our own advocate. However, that still leaves another half of our lives that are in some sort of chaos.

I’ve pretty much made my home in chaos. I had two choices; embrace the reality of chaos or give up entirely. That giving up thing sounds like relief a lot of the time. Yet, I continue to try and embrace the chaos. I search for the gifts that this life brings. The family that supports me unwaveringly, the friends that laugh with me, the Spirit that surprises me, the Divine that shapes me. These are all things I am grateful for. I am also incredibly thankful for all of those people who pray for me.

And yet…those prayers that somehow require the pray-er to know intimate details of my life and/or health bother me. I have an inner circle who know basically all that I deal with. It is an intimate circle, family, spiritual leaders, and a few close friends. It’s possible that only 4 people aside from myself know the full extent and even that is questionable because no one else lives inside me. No one else lives like this. They live beside me. They live with me and love me and that is close. Most of the time, it is close enough.

However, there are always people who want to know more. They want those gritty details. What was your dosage of this medicine? What are your doctors looking for? How are you surviving financially? What’s the worst symptom? Are the meds what make you gain all that weight? How long will it take for this treatment to start working? If the treatment worked why are you still sick?

Y’all, prayers for each other don’t need to be a list of all the juicy details of our lives. The Holy knows us already. The Holy has a shaping in mind. Not everyone who prays needs all the information. How many times must we be stripped down in front of everyone in order for others to feel like they can pray appropriately?

For years I’ve told people that they could specifically pray for wholeness in my life. Still, that refrain has become exhausting because either people forget or they still want the details.

I often wonder what our prayer lives reflect about us. Are we list makers? Are we gossip spreaders under the guise of holiness? Are we a people who recognize the molding presence when we place ourselves in prayer? Maybe we are all of those. Maybe we should be wary about some of that or even all of that.

It’s terrifying to go into prayer knowing that we could be shaped anew. Our prayers may not always shape those we pray for but they always shape who we are. That’s the truth.

So why do we need such detailed prayers? Is it just to comfort ourselves? Do we think the Divine will pay attention more aptly if we seem more informed? I honestly don’t know.

What I do know is that I’m going to stop asking people to pray for me and instead ask them to pray with me. I still want wholeness. That is still where the Holy leads me. And in prayer together a step towards wholeness is gifted to us all. One prayer with each other at a time.

Where Is Your Citizenship?

When I was growing up I attended a Southern Baptist Church and while I don’t agree with many SBC practices or statements these days I do have some incredibly shaping experiences from that community. One such memory is that of Vacation Bible School. I know, I know, other churches aside from SBC do VBS but no one quite does Bible education the way Southern Baptists do.

Every day of VBS week would open up with a joint worship service and it would start with the procession of the Bible, the Christian flag, and the American flag. We would then pledge allegiance to each item.

I pledge allegiance to the Bible, God’s holy Word. I will make it a lamp unto my feet and will hides it’s words in my heart that I may not sin against God.

I pledge allegiance to the Christian flag and to the Savior for whose Kingdom it stands: one brotherhood, uniting all mankind in service and love.

I pledge allegiance to the flag of the United States Of America and to the republic for which it stands, one nation under God, with liberty and justice for all.

As I’ve grown both in age and spiritually I have been both thankful and concerned for this practice. You see, it was indeed shaping. I am glad to have those pledges in my heart and soul. Yet, I wonder as American Christian’s whose flag we claim first. If we go by how we describe ourselves “American Christian,” it would seem we claim our American citizenship is foremost in our identity and it is this that leads my heart to grieve and to worry.

In college I took a class in which one assignment was to go to various different churches and describe how their worship space was arranged and what that said about their church theology. What did that say about how they practice their faith? And that lesson perhaps more than any other lesson in college impacted me. I suddenly saw something heart wrenching. Many churches kept their American flags on their altars. Some accompanied by the Christian flag, many were not. And my heart still hurts over it. It’s a common practice in many American churches. 

I pledge allegiance to the Christian flag and to the Savior whose Kingdom it stands.

Several years ago Law and Order had an episode in which the ADA, Jack McCoy, asked a Muslim Imam if he was a Muslim first or an American first. I was outraged. I even complained to my father about it. Why would anyone subscribe to any religion if not to hold their beliefs first and that religious citizenship as priority beyond all else? 

So, when I see my many many Christian friends in worship, in bible studies, in prayer. I get excited. I think they’ve caught on. I think they’ve remembered their heart pledges to the Holy Word and the Kingdom! Praise be! 

But then the real world crashes in amongst us and I hear the rhetoric they spread in public or Facebook. We just heard a sermon on blessing and welcoming the stranger. I remember you saying “Amen” and here I see you spread fear sprouted from hate calling refugees, violent thugs, or invaders.

We just studied what the Scripture teaches about the oppressed. I remember you nodding your head in agreement. But now you say you aren’t oppressing them so their problems are not your own or even more offensive you state that the systemic oppression is “fake news.”

We pray for healing for those that are broken in body and that God would lead the right healers onto their path and then you rail against public policies that would make those prayers reality.

Whose citizen are you? Whose pledge do you honor in your heart? If I had my choice  I’d remove every American flag from every Christian altar in America. I’d remind people of those pledges we spoke as children. 

I pledge allegiance to the Bible, God’s holy Word. I will make it a lamp unto my feet and will hides it’s words in my heart that I may not sin against God.

I pledge allegiance to the Christian flag and to the Savior for whose Kingdom it stands: one brotherhood, uniting all mankind in service and love.

And as we approach are duties as citizens in America and go to our voting booths I can tell you what I will be thinking about. I’ll think about making the Bible a light unto my path. I’ll think about being a part of the revolution that unites all mankind in service and love. I’ll think about how my American citizenship is shaped more by my Kingdom citizenship than vice versa. And let’s be clear here. This is not about politics. This is not about Republican versus Democrat or Conservative versus Liberal. This is about whose Kingdom we belong. I know who I belong to. I know who that Kingdom calls me to be. Do you?

Just One String

Several months ago I started having a recurring dream. I think most people would consider it a strange dream unless you are a knitter. As most of you know I love to crochet and to knit. And as an avid fiber artist I’ve rarely felt daunted by a project. However, for some reason I was convinced that I would never be able to figure out how to knit socks. Especially because imagining how to figure out a method to create a seamless heel seemed impossible.

Yet, there I was night after night dreaming of knitting the perfect heels. Each morning I’d wake up and think that this was crazy. I had so many other things going on that learning how to knit a sock shouldn’t be the most pressing thing on my subconscious. Then the night would come and I’d find myself back in my sock heel dreams.

Finally, I announced, “it’s time to knit some socks. This is apparently something I must do.” My parents, while supportive, laughed a bit at the strangeness of my announcement. Luckily, my fellow knitters came to my aid and were all very excited for me.

At the same time as all of my sock dreams were occurring I was once again finding myself in another health crisis. My body ravaged by a purple rash that covered about 80% of my body. It was painful, exhausting, and made me a bit of a spectacle to see. As we had done before we started chemo treatments when all else failed. At the time I thought how wonderful it would be to have a small knitting project to take with me to treatments. It seemed like perfect timing.

However, I was struggling so much with pain that even a small amount of knitting was making me sick. I just could not keep up with the physical toll that my body was under. In those next few months I was beyond grateful to see the chemo was working and I was looking remarkably better. There was a deep excitement in me even though it was a difficult time dealing with so many new doctors.

Two weeks ago I went in for some test results. Biopsies of the rash and blood tests were ready to be reviewed. The doctor came out and said that all my test came back looking unremarkable. They had no clue what was going on with my body. No understanding of what caused the rash. No idea what we should continue to do but wait. Even wondering if my main diagnosis of lupus that I’ve been under for almost a decade now was even correct.

Now, I know I should be pleased that my results came back looking good. Yet, I was devastated because it changed the entire course of my treatment from something I knew worked to going back to the drawing board with multiple doctors.

22 years. For 22 years I’ve heard the same thing over and over again. “It’s clear something is wrong but we don’t know what.”

What am I supposed to do with that? I’m tired of living this way. I’m not well. The rash is gone but everything else is the same. Do I really have to start fighting for another diagnosis again?

It felt like the fabric of my life was being cut back into pieces and I just couldn’t imagine how I could seam it all back together again. Where is the Holy in this chaos of pain, illness, and confusion? How do we move forward like this?

And as I sat with this new turn of events I wondered how in the world I could turn with them. I just could not imagine a life in this world in which my body would not always be in conflict with itself. Will I ever find relief that lasts while I’m here on earth? It looks doubtful. It looks impossible.

So, as is often the case I took up my needles and decided to finish those socks. Socks that are made with only one string. It changes with beautifully bright colored stripes. There’s no cutting involved, just two needles, one string, and two hands. As I got to my final heel the steps that I needed to take to create it seemed insane. All the sudden I had so many more stitches on my needles. How will this work? Am I doing this right? Wait, did I wrap that last short row? Yikes! How did that stitch get there?

Then, like magic I saw it. A little bump. This tiny piece of fabric that said, “look! You’re doing it! You’re doing the impossible! You’re turning everything! And all it took was one string. No cutting necessary.”

One stitch at a time and that beautiful heel became a reality. Impossibly made from one string. Impossibly engineered by brilliant minds before me who left me an example of how to knit the most beautifully perfect heels.

My life is just one string. It changes frequently with vibrant colors of my personality and character. There are times in which I come face to face with the truly impossible and I am reminded that I am just one string…but the Holy, the Holy has two needles and knits my life together. And in those moments where there must be a heel turned it only takes one stitch at a time.

Impossible, yet inevitable when you place your string into the hands of the Divine. Thanks be to God.

Yahweh

One of the most difficult and rewarding parts of going through chronic illness, for me at least, is the opportunities it brings to quiet myself and focus on the Divine. I’ve mentioned before how I use my illness as a form of spiritual fasting. Anytime I feel overwhelmed by my illness, whether from pain, worry, or anger, I do what I can to lean into those feelings and then take them with an intentional focus on the Holy. I practice passage meditation and breath prayers practically everyday. They have helped center me and have allowed the difficult times shape me in positive ways as opposed to wallowing and spreading the pain.

Yesterday was the day I was finally able to get in to have my port-a-cath surgical placed in my chest. For those of you in the know you will recall that this procedure is done while the patient is awake. They thread the catheter through your neck right up to your heart. Then in your chest the cut open a little pocket above your breast line and insert the port and connect it to the placed catheter. It sounds simple and it is but all that movement and cutting is felt as tugging and takes about an hour or so. 28 internal stitches later and some surgical glue and you are ready to go.

As I went in to be prepared for the procedure nurses kept asking me if I needed anything and I kept saying I was fine. Which wasn’t necessarily the whole truth as I was dealing with a migraine at the time. But, I hate asking for things even when freely offered so I’ll decline practically everything. My prep nurse asked if I’d like some extra meds to help me relax and I said yes. With my anxiety disorder it’d sure be bad to have an anxiety attack during the procedure.

As I laid there draped for the procedure and I felt the first pinch of lidocaine shots I went into my now natural reaction which is to start meditating using a breath prayer. Typically I use the word shalom. Breath in Sha, breathe out Lom. But for some reason it didn’t feel quite right this time.

Several years ago I heard from someone that the word Yahweh is practically the first word on everyone’s lips as they enter this world. How? Because when whispered Yah sounds like a breath in and Weh sounds like breathing out. It’s an image that has stayed with me as I remember that the breath of life truly is Yahweh.

With that in mind I switched my breath prayer to Yah breathe in, Weh breathe out.

Yah…Weh

Yah…Weh

Yah…Weh

Yah…Weh

Swirling around me I could feel the very breath of life surround me. Molding me, steadying the hand of the surgeon, breathing laughter and joy into the nurses, intertwining with the breath that was already sustaining me.

My heart rate lowered and tears filled my eyes not from pain but from wonder. And perhaps the little extra bit of relaxation drugs helped but there is no doubt in my mind that as I breathed the name of our Lord that the Holy was present shaping everything around me. I called out for the Holy and in grace it not only showed it’s Presence but it actively shaped my experience.

Breath Of Life – Michol Childress

Yah…Weh,

…I Am

Yah…Weh

…I Am Here

Yah…Weh

…I Am Here. Breathe

Yah…Weh

…I Am Here. Breathing Life

Peaceful tears run down. A grateful smile graces my face. Holiness fills my body. And in those moments I find my whole being resonating with the Sacred tones of the Saints before me and the Saints after me. In breathing in Yahweh I have invited myself into the great drama of the Kingdom and all it’s citizens join in the call.

Breathe Of Life – Ferelwing

Yah…Weh

Yah…Weh

Yah…Weh

Yah…Weh

What are you breathing in today? What or who are you inviting into your being? What breathe is shaping you? Today I hope you’ll join me in breathing in Yahweh.

It’s A Dog’s Life

When asked if I am a dog or cat person I can firmly answer that I am a dog person. In fact, all my family would count themselves as dog people. My sister and her family have a sweet dog named Leia. My brother and his family has a beautiful golden doodle named Daisy. My parents have shih tzu named Rosie. And I, of course I have a shih tzu named Khaleesi.

I live with my parents and that means I live with Rosie too. We are a two dog household. Both of our dogs are rescues. Khaleesi was rescued from a puppy mill. She was locked into a small cage and bred over and over again. She rarely was out of her cage. Her life before she was mine was confined with little to no human contact. This has led to a sweetly affectionate dog who is afraid of most things and anxious when her momma (me) is not around. Rosie was rescued as well. She was found wandering the streets of Houston, Texas. When Mom and Dad got her we quickly realized she was partially deaf and mostly blind. She has a strident bark and is pretty bossy but loves to cuddle and hops when we come home.

Last week my face started to swell up, ooze lymph fluid, and bleed. My eyelids swelled up so much that my eyelashes were folded into my eyeball. It was highly unpleasant. I spent the majority of the time with cold compresses on my eyes and virtually blind. I got cranky. I complained a lot. The first day of my eye’s swelling I showed my mom and she promptly expressed her sympathy for her poor blind dog Rosie. Imagining how she must have felt wandering around the streets of Houston blind and in pain.

Now, I must admit, I have enjoyed teasing my mom about that reaction. Poor Rosie?! Poor me! Rosie is better now. Your daughter is sick right now! Love on me!

And, my mom and dad did just that. They loved me through all my complaining and pain. They brought me cold compresses. They let me sit as they brought me food. They did all they could to support me.

And as I sat there blind and in pain I started to have a little more empathy with our Rosie. Suddenly her bossy and strident bark made a lot more sense to me.

As I often do I started to evaluate what this experience teaches me about my relationship with the Divine. I have heard my father say, “people who have not lived through a crisis or tragedy have poor theology.” The reasoning of course is people who have not had to confront what it means to have faith during a particularly difficult time do not have the experience in discovering how the Divine can hold you through that pain.

Now, I love Leia and Daisy but both of those sweet dogs were brought into our family as puppies and haven’t had to experience a life with hardship. They are sweet and devoted pets. However, Rosie and Khaleesi have had a much different experience. And their love is given to us at a more precious rate. For them to break through their past experiences and trust that we will always take care of them is a harder trust to win. And yet, we have won their trust and love.

And I wonder, what kind of dog would I be? Am I Rosie? The dog who has lived life shut off from most of reality, lost to the world only to be rescued and loved so deeply that my strident and bossy attitude is met with laughter and mercy? Am I Khaleesi, a dog who was used and abused to the point where she was cut off from everything and everyone. Rescued and loved so deeply that I am held in loving arms and my anxiety is acknowledged and prepared for lovingly? Or am I a Leia or Daisy? Dogs who have known nothing but love and love their owners without abandon?

I am convinced that I started out as a Leia and Daisy but have lived a life that reflects the hardships of a Rosie and Khaleesi. With that knowledge I can only hope that the kind of faith and love Rosie and Khaleesi have in us, I can have in my relationship with the Holy.

Do I hop in joy when I feel the Holy’s presence? Do I relish the loving arms I’m held in? Do I celebrate the loving and safe space the Divine has created for me? Do I remember that the Holy sustains me and is owed my unabashed love?

You see, as theology goes for dogs, Khaleesi and Rosie probably have pretty good ones. And I pray that as my theology goes it may mirror the ones Khaleesi and Rosie have. One that recognizes what beautiful grace it is to be rescued, taken care of, and loved through all the trauma.

May it be a dog’s life for me. Thanks be to God.