Post Fundraiser Update

I’ve been trying to process every piece of last night. Having Lyme in my brain means being mentally and emotionally present is often difficult, as well as short term memory loss, so I’m often afraid I won’t fully remember things during this time. (I have several “dark years” in my past, meaning I simply can’t remember them) I went through each moment last night in my head though, thanking Jesus for each detail that he orchestrated through friends who know me and love me really well. Praying he would really seal them in my mind, because even though I’m soaring right now, I know there will still be dark days ahead where I’ll need to look back and be reminded of all he’s done for me- and last night was something sweetly he gave beyond my wildest dreams. So here’s a few of my favorite moments- for my future self, and just so you get to know also. I loved the music, my talented friends and the sound of their voices. I loved the moments when I just stopped and looked around in amazement, with my heart so full of love for so many people in one place and feeling a glimpse of heaven. I loved hearing my Girl Gang speak to, about, and for me because their words speak life into me everyday. I loved watching Amanda and Hannah dance, pretty sure the spirit was healing me then and there through their movement. I loved being prayed over, I wish I had those prayers recorded and could clothe myself in them everyday. I loved the people who came up to me after with words from the Lord, both with direct confirmation while also bringing me so much hope. I loved the moment that Flora sat with me while we listened to her daddy’s music (even though moment later she tried to push me off the chair) I loved when baby Josiah kissed me goodbye. I loved when I got to introduce Clive to my friends. I loved the tears I openly cried with many of you, and also the laughter we shared. I loved drinking white wine on a summer night, and being able to stand almost the entire time. I loved the moment when I got to stop and pray over someone else. I loved the overwhelming feeling all night long of surreal, and the quiet in between moments trying to take it all in. I loved not being afraid of Lyme Disease, and knowing I was seen as so much more by the people who know me and love me. But mostly, my absolute favorite part, was when we sang and worshiped together. When the eyes were off of me, and pointed up at Jesus, and voices rung loud, and hands lifted high, declaring that the Lord is great. He is so great.

I feel compelled to remind all of you that I spent almost a decade hiding. I didn’t want anyone to know that I was sick. Having an invisible illness is bad enough, but not having a name for it made it even harder to talk about. When I started sharing it was a very slow processes and only a few were let in at a time, and even when it become public it was still presented in a way I felt like I had control over. God had been asking me to share for years, but I was prideful and fearful and full of unnamed shame. I was terrified that people would only see me as sick if they knew, or that they would leave or love me less. (It wasn’t crazy to feel those things, because I have experienced them before.)

But I’m telling you to take the risk. If you’re hiding, find someone to help you come into the light. (I’m offering right now) Don’t hide anymore, because when you hide you miss out on A LOT. There are people who will surpass any expectation you’ve ever been afraid to have, and it will bring them joy to love you when you feel the most unloveable. There are people who look like Jesus and they will serve you even when you have nothing to offer them in return.

A little over a year ago, for the first time, I shared all the ugly gritty details on a very public platform at a church event. I thought Jesus was asking me to share because he wanted to make me braver and stronger. It was terrifying, but I knew first hand that obedience leads to joy, so I obeyed. I don’t know if I’m any braver or stronger, but I know more of Jesus. I know more of Jesus because that obedience opened the door to being fully known by his people and being loved 10 fold, not less.

Coming out of hiding, and into the light, brought more people and more love than I could have ever imagined asking for. When I say obedience leads to joy, I don’t mean that he will reward you for obeying. I mean that the obedience he calls us to is always ultimately for our joy, and he delights in freeing us.

I have been chronically ill my whole life, and yet my life has been so abundantly full. That’s because of Jesus and his people. There are no sweeter gifts. Not even health.

I have not been given an official total yet, but from the numbers I’ve seen- the salary I will be losing going down to part time for the next two months was covered in last nights proceeds, which is such a huge testimony to me of God’s faithfulness and provision.

I’ll leave you with a big thank you, and also the quote Elise read from me last night at the benefit.

“Treatment in the long run should mean getting to be a normal healthy person for the first time in my life. Going through treatment is physical taxing, emotionally draining, mentally exhausting, and finically stressful.

However, spiritually I have never felt more loved by Jesus, or empowered by the Holy Spirit. He is leading me through every aspect of healing.

I have also never experienced such a powerful source of community constantly looking for ways to love me and serve me, and have never felt such an overwhelming care. This has been the sweetest gift to me through this process. My Doctor is a Christian, and has told me that I cannot get to health without community and people surrounding me with prayer and support. I knew I would not be alone, but I had no idea the lord would provide such a beautiful army to fight along side me. This disease has taken a lot away from me, but I’ve never felt more loved.”

Thank you for loving me.

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Love (Lyme) On The Brain

Hi friends.

I don’t want to write these words. But I am so well loved, and you’re all asking the same question, so it’s time to answer it.

My last Doctor appointment? It felt devastating. I felt scared, and sad, and defeated. Honestly, some parts of me still do.

See, when I found out I had Lyme disease, I immediately knew my biggest fear. What happens if it gets to my brain? I’ve seen Lyme disease change people, alter their personalities into people I cannot recognize. Feeling like my body is not my own? Yeah, I’m used to that. But my mind? No, I NEED the ability to know myself.

I heard a sermon today, and a lot of it was about body issues, and we were in the Songs of Solomon, and the dude told his girl like 13 times in one chapter that she was beautiful. Now, I’m not belittling for one second how much some women want and need to hear that. And that is important, and valid, and true. But that’s another blog post. Today, all I could think to myself was if a guy told me I was beautiful that many times I’d probably scream. I don’t have body image issues, but I’ve got plenty of other issues instead, so don’t get it twisted. Compliments are great, but I just don’t need to hear that I’m beautiful. Tell me I’m intelligent. Tell me that you love the way I love people. Tell me I’m loyal or strong or confident. If you love my soul, who cares about my freaking body. If the best thing you’ve got on me is beauty, let me tell you, there’s not enough beauty in the world to out weigh the rest of my mess. And my mind was running wild until it stopped, because there isn’t an ounce of me that believes any of it anyway. I mean, the ability for another person to be or do these things. Am I even capable of believing another person is actually safe? I don’t know. Jesus is crushing everything I think I know about this subject, so I couldn’t even tell you what I actually think.

But then my pastor said, “ultimately your safety and security comes from Jesus.” Okay, yes. This I can bank on. I know it.

So, Jesus, I do not feel safe or secure. Please be near to me.

I need you, I love you, I need you, I love you. Over and over we sang today.

My brain is infested with Lyme. Swollen. Unbalanced. Not producing what helps you retain short term memory, and the worst? Not producing what keeps your moods stable or level. (Depression for no reason? Fun.)

Since my dr appointment, I have asked myself 20 times a day, “what if I’m crazy and don’t even know it? What if I’m loosing my mind?”

I don’t want to lose myself.

I watched my father lose his mind and destroy everyone around him.

I don’t feel like I can trust my mind or my emotions, and that feels so unsafe. Jesus, I need you. Jesus, I love you. That’s all I can trust.

Physically, she listed off several reasons why I’m in pain again sometimes and why, and though it was very validating- it was also overwhelming.

I HATE feeling like I’m going backwards. I got used to feeling healthy, having energy, not being in pain. Hearing that I have to slow back down breaks my heart. Every time I slow down because of my health, I lose people. If you know my story, you know losing people is the most painful thing to me. I’ve got a long list of reasons why I have abandonment issues, but really, the world just doesn’t stop moving just because you have to.

So maybe my version of “you’re beautiful” is, “I’m staying.” Anyone, everyone. Tell me that over and over and over again, and when I cannot bring myself to believe you, tell me again. Cause at the end of the day, I could care less if anyone thinks I’m beautiful. Tell me you are still gonna be here when things get hard. Tell me you aren’t gonna leave when I have less to offer you. Better yet, point me back to Jesus- cause he is the one who defines what safe is.

Jesus, I need you. Jesus, I love you. Jesus, you’re near and you never leave me. Jesus, you’re steadfast and trustworthy. Jesus, you gave your life to be with me forever. Jesus, you are with me in the waiting. Jesus, you are true. Jesus, you are safe. You’re beautiful. I love you, I love you, I love you.

I’m living my worst nightmare, and I’m okay.

I’m living my worst nightmare. It’s true. When I was a child and dreamed of adulthood- it was always a healthy one. I had lots of dreams, and none of them included still being sick. They did not include waking up every morning to a handful of pills, diet restrictions, or treatment plans. They did not include chronic pain, or trying to plan around when I will or will not have energy. I never thought of having to work through a deep rooted fear of not being wanted because a life with me seems less. When I realized for the first time as an adult, almost 4 years ago now, that I was still sick, and probably always would be, it crushed my spirit in a life altering way. I’ll confess to you that led to many prayers of “if this life will always hold sickness for me, spare me now. Don’t make me live another moment, let alone another year, or another 20.” I was so fearful of the future, so fearful of being in pain for another day, yet a whole life time. I truthfully say, I am living my worst nightmare, and yet? I am okay.

 

In fact, I am joyful and happy, and so full of affection for this life of mine. My worst nightmare was no match for the power of Jesus. He used my fear to give me a greater freedom. So I want to share this with you so you will know that your greatest fears, the ones that make you question getting out of bed in the morning, or maybe even question going on living at all, they are no match for Him. He has conquered them already, and His spirit will empower you to do the same.

 

I’m kind of blown away by the ways He has used physical sickness to heal me emotionally and spiritually. The joy came before the physical healing did. The desire for more of life, whatever He chooses for it to look like, came before the physical relief. None of it came from me. It was not some inner strength I found, it was most certainly the work of God himself, transforming my heart and my life.

 

He has been so sweet to me, because now he is doing both. Just months ago chronic pain was a constant, and crawling out of bed for only as long as I absolutely had to because of never having any energy was normal. I now find myself realizing throughout my day, “I’m pain free,” and “this is what energy feels like!” It feels so strange and so wonderful all at the same time.

 

But you guys. Its scary. I’m terrified of getting used to it. Of course any good days are better than no good days. But the hardest thing I ever had to do was learn to live like a sick person, and now I’m trying to figure out what a healthy person lives like, and I’m still somewhere in the middle.

 

But before I update you on all the technical health stuff, I want you to know that I’m hopeful. I’m more hopeful than I’ve ever been. I am praying with great expectancy and great faith for healing, and for the first time in my life, I hear him responding to me. He is not saying no, either. I’m seeing him answer me before my eyes, and then sing over me, “I’m not finished yet.” I am confident that he has more health for me than I have ever known, and for the first time, I’m not afraid of my future. Not because sickness might not be my narrative, but because I know I get more of Jesus either way.

 

So Friday afternoon I go in for my next appointment. This is where my Doctor will assess if I am healthy enough to start my next phase of treatment. Specifically for the Lyme. This week I have been praying that she will be blown away by how healthy I am, and that Jesus would give me a miracle of new and clean blood, not ridden with lyme. I am praying that he will show off his power, might, compassion, and mercy by test results that can only possibly be explained by Him. And if that’s not the case, I’m praying that my heart will look back and see all of those things simply by how good He’s allowed me to feel the last two months, and that would encourage my heart to remain steady in starting the next phase. Either way, I am walking out in the freedom and hope of knowing that when I see Jesus face to face, I will be fully healed forever. For now, he continues to speak “Talitha Cumi” (Mark 5) over me, and I will continue to follow him wherever he leads me.

 

Thanks for walking along side me, friends.

Here’s an update for ya. 

Last week I started yoga private lessons from the amazing Kate Whaley. (She reads scripture and prays over you and you start crying and don’t even know why)
God created me to be a mover, but I have not been able to dance the last few months. I’ve spent my life “dancing through the pain”, and often struggled to understand why He would create me to be a dancer, and then give me a body that cannot always move. So I have been quietly grieving this the last few months, craving to cry out in the most intimate way I know how, but physically unable. Physical pain and lack of energy have taken much from my life, but this is a piece of my soul that feels like is slipping away. God gives me little graces like the ability to lift my hands when I sing on Sunday’s, and to sway back and forth, and the last few weeks even stand the whole time we sing. The last few weeks the pain has lightened, the energy has been returning and I have wanted to move- but I’ve been nervous to try. What if I’ve lost something I cannot fully get back? I have not been able to bring myself to try or to see what I’m capable of. I’m used to being strong, muscular, capable, flexible…not weak, not stiff, not needy, not this. I’ve never felt so free but when I get to improv dance, and the fear that I would never experience that again in the same way was paralyzing. So I started by sitting on this mat and breathing, and even a little bit of movement felt like coming home. There is something about a physical response to the Spirit who is ALIVE that is something special, y’all. He is alive and you can move with Him.

 

Its a whole different feeling though when someone can look at you and say “I can see you physically trying to protect your heart space in the way you carry yourself” (posture) and to be told we carry grief in our shoulders. I’ve had a chiropractor and a massage therapist tell me that I am constantly clenching my shoulder muscles and to remind myself to push them down throughout the day. But Kate told me to ask Jesus what I’m trying to emotionally carry, literally on my shoulders, literally causing me more chronic pain, instead of just pushing my shoulders down throughout the day.
So this morning I pulled out my mat, I sat down, I began to breathe and pray, and then I noticed my toes were numb. My toes and heals, and sometimes other parts of my legs. I knew exactly what it was- Lyme disease. I wanted to scream. The second I started moving again, because of pain relief, I get a new side effect- numbness in my feet. You’re joking right, God? Okay. No warrior poses for me today. I will just sit on my mat and breathe.

 

I’m afraid. I’m afraid of new symptoms, or maybe old symptoms that I never noticed before because the chronic pain was so severe it overtook everything else. Either way, ultimately, I’m afraid of what they will take from me. I’m afraid of where the Lord is leading me, and I’m afraid that once I get there I’ll be left all alone.

 

Why am I afraid of this? He’s never left me and he never will. He is good, and has promised goodness to me. But I am afraid to suffer more, though I know all the biblical responses to that.

So here’s an overall health update:
The new diet is hard, but I have seen a vast improvement because of it. Less pain, more energy. The diet has been less difficult because of several people in my community offering to cook for me, grocery shop for me, and help me meal plan. This has been a bigger blessing than I can fully express.

 

I’m not running marathons, but I am enjoying more of my life.

I have been in counseling the last few months as well. Emotions have a huge hold on my physical health, so I knew there was no sense in pursuing physical health if I was not going to work through my past trauma. I knew I had developed some unhealthy coping mechanisms, such as suppressing emotion, humor, and normalizing suffering and abuse. I wanted to learn how to retrain my brain away from these things, and knew I needed help. I have been seeing a Christian counselor, and she has been amazing. We have worked through a lot of pain management, and how to slowly start sifting through years of suppressed emotion. We will eventually get to some ptsd treatments for trauma, mostly related to being a sick child and post stroke family dynamics. (I will say I have more love and grace for my dad than I probably ever have right now.) I think counseling is awesome and everyone should do it at some point.

Lyme results came in this morning. You might have seen my earlier post. If not I’ll copy it here: “I’m anchoring on the glory of the Lord being revealed, and on what he has spoken, and that it is truth. Lyme Results: positive past and recent exposure, with multiple co infections. What does that mean? I got a mosquito bite at some point when my immune system was compromised (mine had been compromised since the day I was born) past exposure: anytime before 18 months ago. Recent exposure: with in the last 18 months. My body: both and some. My doctor: Don’t feel shame over this, it’s not your fault. My Brain: sees Satan holding a list in front of me of all the reasons he can speak “unwanted” over me, and with every diagnosis he delights in making the list longer. What my Doctor says I need: I’m too sick for her to treat my Lyme, it will just make me more sick. So she will be prepping my body to start treatments for the next two months, and then we will reassess. She says I need lots of people to be present, to put hands on me and pray, and to support me in what’s to come. My biggest fear? Getting sicker instead of better. This is a snapshot of what’s going on in my head- give me 24 hours before you ask me questions or I’ll cry and word vomit all over you. Okay, bye.”

Up next for now: more supplements, a scheduled appointment with a doctor to help with some of my Lyme symptoms, and to schedule a ANA blood test. And to get some finical counseling because these effing medical bills are adding up, especially with the new diet requirements.

Here’s the praise: when my doctor (who I love btw) pretty much told me “you need a community” a flood of faces came to mind.

The Essian Family: They have given me a home to live in, but more have become pillars on the foundation that is my life. They call me family, and treat me as such. (The girls sometimes call me “Faify Essian” and then giggle) I am thankful for a safe place to heal, or if God chooses, a safe place to be sick.

The Shelton Family: I would list out all the things these people are to me, but that would require a blogpost in and of itself. Let’s just say, they care for and love me so well, and they are my family.

The entire Paradox Staff: They are quick to pray, quick to offer grace when I obviously don’t feel good, and overall my favorite people. I hope I get to work with them for a long time, because it is the best getting to work with people you love so much. I especially am thankful for my boss, AJ, who cares more about me than the tasks I complete for him and has prayed for healing over me and anointed me with oil 2 times and counting. For Daniel who often stops to asks me specific questions about how I’m doing, he has the gift of long suffering because he keeps asking even though my answers don’t always improve much. (It means the world to sick people when you don’t stop asking even when we don’t get better) And for Heather who is present, constant in prayer and proclaiming truth over me, and asks before touching me Incase I am in pain. (Seriously that’s HUGE)

Camille, Elise, Danyelle, Nataly, Shannon, Jada, Aly and Bryan to name a few of the other people who are constants in my life checking in on me and caring for me well.

My blood family who has scheduled time each month to have family dinners, and who are a constant support system.
There are so many more. They pray for me, weep with me, rejoice with me, serve me, love me. They stay.

I leave you with some of Matt Shelton’s lyrics that I have been singing to myself all day: “though Heaven’s glow would mean relief, I will rejoice in the glory of the King.”

I am walking forward surround by love and support, and more by a Loving Father who is constant in his pursuit and healing over me. I am confident in him above all else.
Love y’all.

 

(P.s. I started writing a book.)

When his name is Healer, but he is not healing you. 

Failure. Worthless. Weak. Should be able to, but can’t. These are the thoughts that circle in my head on my worst chronic pain days. They transform into different shapes, twist every circumstance, and haunt my thoughts. 
They are classified somewhere between the following: lies from the enemy, anxiety, depression, and truth. That’s the tricky part. The exhausting mental battle to dictate between them all. And today I’m tired. 
When I’m tired it’s harder to be hopeful. It’s harder to remember this life is temporary. It’s harder to read my bible and see Jesus’ miracles of great healing, while I’m laying in bed in pain trying to be content that he has not chosen to do the same for me. It’s harder to believe I’m wanted or valuable to anyone. 
If I don’t hold my thoughts captive, I can easily start to sink in the overwhelm of emotional grief, and physical pain. 
So I am learning to stop and breathe. To stop and confess at the feet of the one who always wants me. To disarm the enemy and my own flesh by saying “yes I am weak and unworthy and incapable, and everything else you could possibly say is also probably true, but I have Jesus who covers all of that and HE is more powerful than my greatest sins, deepest fears, and even the most chronic of pain.”
My hope is not in healing. My hope is not even in relief. My hope is not in a life free of chronic illness. 
My hope is in the one who is already with me. I already have him, and I am his. He has given me the freedom to be weak and when I allow myself to sit in it, the fog begins to lift a little and I can see him more clearly. He is moving in mighty ways, healing me in ways bigger than the physical body of this world.
I am still tired, but my soul does not feel as weary. I know that His spirit will give me the endurance for whatever He has called me to, and everything else I can slowly begin to loosen my grip on and open my hands to him more fully. 
I’d be lying if I said I was not terrified sometimes. The thought of living a long life without any physical relief is daunting to me in a way that I cannot fully express. But he meets me there. I crawl to the bottom of his seat in his throne room and cry at his feet, and he sweeps me up into his lap and weeps with me. He speaks sweetly to me in ways I don’t think I need or stop to listen for when I am not desperate for him. 
And this is where I begin to see his light. When I can see that the very circumstances that make me desperate for him are a beautiful grace. And then my palms are not just open handed to him, they are lifted high blessing his holy name. 
So this is where I leave you, friends. Isn’t He beautiful? 

When Father’s Day is not happy. 

I don’t have many words. 
I’m about to start my day, and I know I’m not alone in this feeling of dread. This day is hard for many. 
There are men who long to be fathers, but aren’t. There are some who never knew their fathers. There are some who had awful fathers, and there is a wide scale of awful, but awful is still awful. There are people who lost their fathers. Then there’s people like me and my siblings. 
Who used to have a father, and in someways still do, though a massive stroke taking away everything we loved about him. 
And I’ll be honest with you. I am overcome with guilt because I should be thankful he’s still here, but the conflicting feelings of looking at the man who raised you, and not knowing him is the worst thing I’ve ever felt. 
And I am overcome with grief that the sweet little girl I live with asked me why I was not making my father a Father’s Day card, because I cannot explain to her that being in the same room with him makes me feel nauseous. That I’ve been praying for days to simply have the ability to follow through and call him. To muster up some kind of grace in my heart to wish him a happy Father’s Day, when I know, he is not a good father anymore. And the grief I feel remembering when he was. 
So here I am, 6am, crying my eyes out already. But I want you to know that I do have a good Father. He never changes. He never makes me feel worthless. He loves me more than I could ever comprehend. And on this day i cling to him for myself, but I also cling to him for you, because I know it hurts. I know you feel a pinch of joy when you see the happy posts from your friends through your feed, but I also know it stings. And that’s okay. 
If you need someone to cry with you today, or pray with you today…I’m your girl. I’m ready to weep with you, and I’m ready to rejoice in our good Father with you or for you, also. 
He is close to the broken-hearted. And saves the crushed in spirit. Psalm 34:18h

My sick girl psalm. 

Here is the psalm I wrote and shared at The Night Of Worship at my church. I’ve been trying to write about this for over three years, but the spirit knew exactly when he would reveal the words! It all flowed out one night after a conversation with AJ about my deep fear of not being wanted because of being chronically ill, and hurt of always feeling like a burden. I cried out to the Father and this is how he responded. ❤️

 

You say “your body is a temple”

But mine has always felt like a war zone

Before memories had time to form

My body started to attack itself,

It started the fight

Where either way I lose.

 

When you ask about my childhood;

You will not hear about my first words,

When I learned to walk,

Or my favorite places to go.

You will hear about symptoms,

Diagnosis,

Dosages,

And long blocks of time where I was too sick to play.

 

The next years of my life are not measured by grades,

But by which treatment methods,

Diets,

And ability to walk,

But never by names of doctors,

Because surely there have been too many to remember.

 

I can remember very little of the early days,

But a searing memory of my fathers displeased face,

After I yelled out, crying in pain.

This started in me the feeling of “burden”

I decided to learn how to suffer in silence.

 

Adulthood came with a rush of how can this still be my normal?

I never pictured my life still being sick.

I had decided I would not be the sick girl,

I would learn to fool each new person I’d meet.

I would preform, exceed expectations, anything to escape my reality.

Smile through the pain,

I win if they do not know

That I collapse in my bed when I get home,

and that sometimes it takes days to recover.

 

Something is different now,

My mind joins in the fight against my body,

I now see my body as the enemy,

I look for ways to punish it.

There are no answers for why my body is this way,

So I decide to take control and give myself a reason.

If I do not eat I can pin point why I do not feel good,

I start to believe having a reason gives me some kind of peace of mind.

 

I take long looks at my life,

I am so tired of being in pain,

So sick of sleepless nights,

And having no energy,

Is this what life looks like for me ahead?

Then I don’t want it.

I know I do not want it.

Now I cannot tell if it’s physical or mental,

All I know, is I cannot lift myself out of bed.

No desire to live,

No desire to be alive,

No desire for anything.

 

Every ache, each pain,

A shivering fear down my spine,

Dear god, how long will I be sick this time?

Will it be days, weeks, months, please not years.

Please don’t let me get left behind again,

With only the same four walls around me,

Surely even they grow tired of hearing me cry.

 

My prayers are bitter.

This is not the life I wanted.

How much suffering can one life take?

Please just bring me home now,

If you love me at all.

All I hear is silence,

Where are you?

You used to bring me joy even in my pain,

But now my heart is hard towards you,

And I don’t think I love you at all.

I look for ways to get your attention,

like a rebellious daughter,

while poising this so called temple you gave me,

Until again I find myself alone in a room,

Unable to move,

Sick. Alone. Again.

 

6 weeks, and nothing to do but face you.

What beautiful grace that bound me to face you and see you there with open arms waiting for me.

I cry out

“How could you want me? How could anyone ever want me? I am a burden, I am worthless and disgusting, I am the sick girl and I have nothing to offer you.”

 

“I want you so much, that my son died, hung naked on a cross,

he carried every burden, every sin, and every suffering so that you could have ME.

I know you have nothing to offer, but I have given you everything.”

 

Jesus said come,

“Let’s mourn the life you’ve never lived

And the life you know you’ll never have

Because I have given you this life instead

And it is good, good, good. ”

 

Jesus said, “stand up.

It’s time to live the life I’ve given you. ”

 

My sickness, this body, it’s not my identity,

But it is a huge part of me.

Carefully designed like each hair on my head, or

The color of my eyes,

And the gift of breath in my lungs,

He knitted me together in my mothers womb,

With a chronically ill body.

 

I have nothing to offer,

body, mind, or soul,

That is not gifts from my good Father.

So I walk freely knowing

this is no accident,

He has given this life to me with a broken body,

And is loving me perfectly just the same.

He never grows tired of hearing my cries,

And He has given me worth far greater than a healthy body ever could.

 

 

He says ” I have not promised you health, but I have promised you myself.

I am more. I am better. I am everything you need,

and I give myself to you freely.”

 

By His wounds I AM healed,

just not the way my heart desires, but that desire turns my heart to the truth that I am needy of a savior

and a savior I have been given.

What grace to know everyday by the ache that I am free,

fully dependent on the one who gives me everything.

 

Some days it takes me literally down on my knees because I have no more energy

to remember these things,

So down on my knees I will stay praising his name,

That his grace is sufficient for me.

Talitha Cumi

I desperately want to report some miraculous change. I wish I could tell you that since sharing at the Night of Worship I experienced some kind of supernatural healing, or some kind of crazy enlightenment. But my story does not look like the woman in Mark 5 who reached out to touch Jesus’ garment, her faith making her well. My story looks more like Paul asking God to remove the thorn in his side, and God responding “My grace is sufficient for you.” He says it over and over to my tired body. He whispers it to my bones, and sings it over me while I lie awake at night.

But since sharing this part of my story at the Night of Worship I feel like the enemy has just been twisting deeper the thorn in my side. I feel like I am crawling, and he is kicking me over and over. And sometimes, friends, if I am being honest, it is hard to believe that his grace is sufficient. Sometimes I grow weary. Sometimes I grow anxious. Sometimes I feel like a little girl afraid in the night, reaching for the comfort of her daddy, but surrounded by darkness.

I have felt my health grow worse, and I have little answer why, and I confess there is often fear in my heart.

My normal cloud of fatigue has become more and more just straight up exhaustion. I find myself doing less extra things, and going to bed earlier, and yet still feeling physically tired. I often feel like the wind has been knocked out of me, only it lasts for hours, or sometimes days. My body just so weak that it’s work to even breathe, which sometimes makes it physically painful to move my limbs, simply because there is not enough energy leftover. On Wednesday I laid still in bed and felt the energy leaving my body by simply pumping blood through my veins. My body is working hard for me. Some days I don’t feel as tired, but there is pain. It starts in my neck and slowly begins to spread by shooting down my shoulders and back. Some days it hurts to use my hands. Some days my bones and joints ache all over. Some days it takes so much mental energy to be simply standing when I feel this way, that my brain is foggy and it’s hard to think clearly. I have been more quiet some days because sometimes it’s too much to form a clear thought and then be able to speak it.

I try not to lie when people ask me how I feel. I never mean to. Sometimes I think I just desperately want to feel better so much that I tell people I do in hopes it will be true if I speak it. And sometimes I just say “I feel a little better,” because I’m out of bed and I really do. But there is so much life that I want to live and I feel my bounds and limitations heavy like chains. It’s hard to be only 24 and feel like I cannot keep up. My heart is crying out “I’m here! Don’t forget about me!” though I feel like I don’t have enough energy to offer to be a good friend. I feel the weight of the “should be able to’s” that the world puts on me, and that I put on myself. And then there are the fears. So many deep rooted fears that Jesus is revealing to me, and I no longer feel like any kind of independent woman, but just a little girl so dependent on her daddy.

I know this is grace. I know this is answer to prayer. I know that it is a beautiful place to be, that it is producing joy, and I also know that it is painful.

When it comes to energy, he has given me little. But I am trying to be a faithful good steward with my little. I am confident beyond measure where he has me spending my little. And though I have little faith when he calls me to more than I feel like I have, he proves to me again that it is his doing and his ability always, and never mine. I simply show up where he calls me, and he moves, and he concurs, and it has absolutely nothing to do with my capabilities. My limitations are not limitations for him.

When Jesus became human, he knew his limitations. (Can you imagine going from having no limitations at all, to being human??) When I grew tired of growing tired this week, I heard my pastors voice in my head, (which is pretty hilarious because we live in the same house now, maybe it wasn’t in my head and he was just talking. lol. I’m kidding. Hi Jim. ) “When Jesus was thirsty, he drank. When he was tired, he rested.” Jesus was perfect, and when he grew tired, he rested. Jim also said, “Jesus took on a human body to heal your body, and also to know what pain feels like.” This gave me two truths to hold onto:

1. I would never have chosen this for myself, but Jesus willingly became human so that he could heal me.
2. I am fully known by him. I cannot begin to fathom all the ways he could have chosen to heal me, but he did it in a way where he experienced pain so that I could be fully known. I am fully known by him, all of my pain, all of me.

So this is it. This is my joy, and my motivation. My sweet Jesus. He is doing nothing less than he promised, he is completing his good work in me. Right now his good work in me looks like using my limitations to make me so needy of him that there is no other choice but dependence on him, and no ability to hide it from others. He has not chosen to complete much physical healing yet, but he is healing my mind and my heart and my soul. My body is tired, but my spirit is dancing. I am so thankful for this life he has given me, but more so, I am thankful that I know one day I will see and reach out to touch my Jesus and I will be fully healed. And we will dance, and I will never grow tired because he came and grew tired for me.

So for now, I will rest until he “[Takes me] by the hand [and says to me], “Talitha cumi,” which means, “Little girl, I say to you, arise.””
‭‭(Mark‬ ‭5:41‬)

I am his little girl, and he decides when I rise. It is true that he has already raised me from the dead, but he is not finished with me yet. He is a sweet Father. So when I am tired I will rest, and when he calls me to arise, I will immediately get up and begin walking.

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.”
‭‭1 Peter‬ ‭5:10-11‬ ‭

The Aftermaths of Publicly Exposing Yourself.

Last night I read a psalm I wrote about my life of chronic illness at an event at my church. (I will post it once I’ve had a chance to read it to my mother)

I woke up this morning full of fear. “What have I done? I have fully exposed myself…to EVERYONE.” I have spent literally years of my life doing everything I can to hide this thing. Carefully laboring to place it behind the pretty wall I built for myself. Last night the spirit not only tore down the wall of comfort I found so very important, he also asked me to step out fully in front of the wreckage. Like true Faith fashion I made jokes about being dramatic to lighten the mood, but I had felt like throwing up for 5 straight days leading up to last night. It was monumental for me, and also terrifying. You don’t understand a life of something defining you, doing everything you can to escape that thing, and then somehow willingly giving everyone the power to define you by that thing again. I just..I desperately do not want to be known as the sick girl. Give me any other false identity. Any other legacy. Just not this. I’ve come to grasp the fact that I am the sick girl, and I’m even okay with it most days, just as long as no one knows and I don’t have to talk about it.

It’s a lifetime of repeated questions that I dread are coming. The idea that I can be open when I’m really not feeling well, just to in turn be asked the list of questions (with good intentions) what I have done to not feel good.

“Did you eat something you weren’t supposed to?”

“Did you forget to take your medications?”

“Did you not rest enough this week?”

Did you, did you, did you.

When I can exhaust every way, everyday to feel any kind of better, and yet if I don’t- it’s because of something I’ve done.

Sure. There are times it’s absolutely my fault. Sometimes I do eat something I’m not supposed to. (It’s very rare)
Sometimes I do forget to take something, or I run out before my refill arrives. (It’s very rare)
And yes, I am known for wanting to live more life than my body is capable. But I have grown leaps and bounds accepting my limits, and sometimes even when I do everything right, I still feel bad. (Not rare)

And what most of you don’t know, is that 90% of the time I actually do not feel good. Feeling bad is normal for me. Confessions; most the time when you ask me how I’m feeling, if I answer “pretty good today” or something like that, more than not I mean today is manageable. (I’m answering honestly, manageable is a good day.)

Pretty good means I think I have enough energy to complete my necessary tasks today.

Pretty good means my pain level is not making it hard for me to mentally function clearly.

Pretty good means I slept more than 2-3 hours at a time last night without waking up uncomfortable.

These are all my normal pretty goods. Don’t get me wrong, I am thankful for my pretty goods, especially that I have more pretty goods than not these days.

But on the days that are not pretty good, I fear and dread carrying the blame of it. I fear and dread the need you will feel to figure me out or fix me. Believe me. I have tried to figure out why I don’t feel good and why my body won’t fix my whole life. I promise you that every question you can ask me, I have asked myself literally 1000 times. So though you will just desperately be looking for a way to find me comfort, because you love me, the questions will mentally send me on a quest for isolation and it will be HARD to fight it. My default on those days is already extreme isolation, so I’m already fighting it with everything I have.

So this morning I woke up and my prayers were panic.
“God what if this is the thing I am known for again? What if this becomes the first thing people ask me about? What about the dozens of people that will corner me to tell me about the treatment method that worked for their friends cousins boy friends little sister? You will call me to be gracious and I’ll want to scream every time! What if this becomes my identity to them?”

I feel like God spoke in a very Fatherly way when he said to me: “this is not your identity. It’s just not. But what if this IS the thing I’ve called you to be known for? You have been running from the very thing you have confessed is how I’ve revealed my love to you. I want to continue to give you freedom. (He repeated a line from the psalm that I shared last night.) “Come, it’s time to live this life I’ve given you.” I want you to continue to grow in walking freely in your weakness to know more of my strength. You have prayed to be in awe of me, and I am answering you.”

Okay. Writing this has made me realize that I am very selfish, very prideful, and very fearful.

My flesh feels naked, it wants to desperately dig through the wreckage and start rebuilding a wall to hide behind. But my spirit is beaming, glowing because it’s being clothed in the glory and grace of Jesus Christ. More of my spirit has been awakened by God revealing more of his love for me, and the wreckage is no match for Him. I want to hide the glory he has clothed me in because it exposes my weakness. But He is a God of healing and redemption and will not allow me to lock myself behind a wall and hide. He has called me out, and there is no going back now. That is terrifying in so many ways, but what’s greater than the fear? What of his glory that is still unknown to me is coming? What more of his love for me that he will continue to reveal in ways I cannot comprehend? What more freedom does he have in store for me that I would get to revel in?

He is coming after all of me, friends. And I cannot begin to fathom. I love him so much.

From the Christian woman who marched in the Women’s March.

I spoke on the phone with my brother yesterday. We don’t see eye to eye on a lot of things, and often end up on opposite points of view. But man, we work to find common ground and have a healthy relationship. We both put time, effort, grace, and patience in and genuinely desire to know and understand each other.

I was, to say the least, disappointed by the amount of men and women who openly did not care to understand the women’s march, or those, who insisted they understood- but would only accept a twisted, misrepresented understanding. It was humbling and refreshing when my brother expressed to me “I don’t understand, but I genuinely want to.”
I bite my tongue a lot. But you all also know I am extremely vocal about what I think. I have failed many times to find the balance, and have been guilty of both complacency and going off on someone in an unhelpful way. But at my core, my honest desire is to lovingly educate. So when people who really want to understand ask questions, I am more than thrilled to have any conversation.

We spoke for two and a half hours as I drove home from my grandfathers memorial service last night. (Though I admit the first hour was unrelated to the topic, but also good conversation) He voiced to me that he heard what I was saying, and though had never thought about many of those things, could not argue and was happy to be educated. He told me he wished what I was saying was among the things I was posting, and that he thought for a “white privileged male” (his words, though yes, my family has been very privileged in many ways-including me, this American white woman. Being called privileged is not an insult, it simply the reality of the situation) to understand, the posts about the women’s march were very vague and not specific. He challenged me to share the surface we scratched together last night, and then said “when I get home, we will share a six pack and keep this conversation going.” You got it, brother.

I admitted to him, I didn’t like to get specific over social media (though I will honestly answer any question asked), I love to have these talks in person, because I don’t quite fit anywhere. I am an anti abortion democrat, a charismatic AND reformed passionate feminist Christian. WHAT. Feminism at its core, is so biblical, and most Christians I am in contact with do, in fact believe feminism, but just are not comfortable associating with the actual word because of the latest wave of “man haters”. Feminism is believing in equal rights. It means both men and women have the same worth and value, all of them in every color, shape, background. This does not mean we cannot celebrate the different strengths or gifts we might have, it simply means we have the same value. I’m not sure what person, with any understanding of scripture could argue with that. I, too, at one point of my life, did not associate with the word “feminist” because of the negative connotations, but then I realized…if I throw away every title that some people use and twist/misconstrue, then I can’t use really any words at all. I certainly can’t use the word “Christian” anymore if I decide that, and I also really think it could apply to most anything else. No entire group of people can be lumped in together. There are going to be people misusing it, people taking it to the extreme, people missing the point. (Insert comment about racist cops, how it is ignorant to say all cops are bad/racist, but it is equally ignorant to support and stand behind the ones who are.)

Literally. Everything.

So I became very passionate about claiming back the word instead, and educating people about what feminism really is. They almost always say “oh yeah, I believe that, I just am afraid to be associated with the extremists” and then I get to explain, that those people are responding out of hurt and wrong that has been done against them, and they need grace and love like everyone else.

Wow. Okay. Rabbit trail. But important. Back to the topic.

I started by asking my brother a simple question to get the ball rolling. “Do you know, that in my budget, I have to have a place for tampons? And not only do I have to pay for tampons, but in 47 states (including Texas) they make us pay taxes on them? Can you name one male gender specific thing, you absolutely cannot be apart of society without, that you are forced to also pay taxes on? Can you explain to me why I’m being taxed on a hygiene item I cannot go without?” I was genuinely open to hearing an answer, if there is one, (so far there’s not) but mostly just wanted him to realize there are a lot of things that he’s never had to think about before, that are just expected of me. It’s not his fault. I’m not blaming him. I just wanted him to be aware. And hi, to the women who are thinking “I’ve never had a problem affording tampons” some women have full time jobs, and worry about feeding their kids. So I’m thankful you’ve never had to worry about it. But some people do. I, myself, at other points in my life, am not embarrassed to admit I would try to bum off friends and even strangers because I started my period before payday, and was living paycheck to paycheck. (Now I carry extra with me all the time, so ladies, if you ever need one- please feel free to ask. I’ve got your back.) *if you’re offended I used the words tampon and period, you’re not mature enough to have an educated opinion on the women’s march, anyway, sorry.

So I went further to explain the following, between Trump, many of his supporters, our justice system, our society, and yes, even churches- this is why many women don’t feel things are very “equal”;

-Yes, “rape is illegal”, while men plead guilty and go free, while lawyers truthfully tell my friends it’s not worth the money or emotional strain because the chances of even the most guilty facing consequences is slim; while victim blaming and shaming is so normal, woman are afraid to speak up, and all while our own president promotes sexual assault and fosters rape culture. (If you are silent, or making excuses for rapists, you are also fostering rape culture.)

-The men who father the child, (rape or not) do not have to contribute emotionally, physically, or finically. Yes, child support is “legal” but let me tell you, I am SURROUNDED by single mothers who have court order child support, and go months, even years without seeing the payments. Yes, it’s illegal, and yet the men are not paying- and guess what? These kids still have to eat and be clothed even when the dads don’t care enough to pay and even when the justice system fails them and does nothing about it. So on top of working full time jobs, paying for everything themselves, including childcare so they can even go to work, they also have to provide enough love, care, and support for both parents, by themselves. All while being rejected by society and often times, even “the church”.

-Women are told they must keep their babies by some of the same people who want to take their health care away. Many of you, as you voice your genuine care for the unborn life, make it very apparent you do not genuinely care for the woman who may or may not carry the child. You tell her she’s a murderer. You tell her she’s going to hell. You reject her. You make her feel hated and worthless, all in the name of “saving” her baby. You tell her to consider adoption, and I ask you, genuinely, have you ever even considered adopting a child? Have you ever looked into the process of fostering a child who will be born into the system, and turn 18- never having an actual family? You tell her she must have her baby as you in the same breath, want to take away her healthcare because you’d rather pay less taxes. You also, want to shut down one of the only accesses she has to free sonograms, birth control, cancer screenings, std testing, the list goes on and on…
You also want to take away her government help, her food stamps, the welfare, because even though she works full time, maybe even has 2-3 jobs, she still cannot afford all these things, but you call her lazy and say she just needs to work harder.
I say this, personally 100% anti abortion…..BUT THIS ALL MAKES NO SENSE. These things cannot and do not go together. We cannot be yelling about the unborn life, when we will do nothing to care for the other lives.

I know, I know many of you would never say “women are worthless” but the things you are saying, and the things you are silent about…you are saying “women are worthless” loud and clear. You are saying you do not care about them. You do not care to even try to understand. Some of you, as women, have never experienced these things, you don’t personally feel oppressed or unequal, so you refuse to acknowledge your sisters who do. You can say all day long you are “entitled to your opinion” and yes, we are privileged enough, both you and me, to have an opinion. But ignorance is not bliss. Not caring is not an okay opinion. And your right to your opinion does not makes wrong things right. Somethings are just wrong no matter how you feel or think about them. You can say “I don’t feel this way personally, so I refuse to believe it’s real,” but that doesn’t change the FACT it IS real, it IS happening, and it IS wrong.

Though I do not fit into any group neatly or anywhere near perfectly, I was fully accepted with love at the woman’s march. I explained to my brother, that the march was not about seeing eye to eye on everything. It was so much bigger than any one issue. The march was about unity. It was about saying “hey I see you, I hear you, you are human, and you deserve basic human rights no matter who you are.” I cannot ask a pro abortion woman to care that I am passionate about the unborn life, when I am unwilling to also be passionate about her. I cannot ask a woman to care about sexual assault, when I will not also care about the oppression she faces as a minority. (I am crying, thinking about my dear friend, who fits into every kind of oppression I’ve mentioned in this post, and more.) We came together and said “I stand with you. I will no longer be silent.” ” No one is free, if one is oppressed”

This is so much bigger than Donald Trump. He is just a voice and a face for these things. But he is also the president, someone who should be held to a higher standard, and he should care what we have to say because we are apart of the country he is supposed to be leading. We are not going to quiet down. We are going to fight for each other, we are going to hold him accountable, we are not going to quit fighting for basic human rights. Even your right to have your opinion where you don’t care about my rights. It is not whining that Hillary lost. It is not something anyone should ever have to just “get over” to simply want to not be treated as subhuman. These are not new things. These are things we have been marching, protesting, and fighting for since before women were allowed to vote. All this is, is us coming together to find our voice. We are empowering each other because you have told us over and over and over that we do not matter and you do not care.

The same spirit who empowered a man to tear apart a lion, lives inside of me. That spirit empowers me, compels me to no longer be silent. The Father, creator of the universe, has made both men and women in His image, and He sent his son Jesus to die to give us worth and value that cannot be taken away. It is belittling to his death on the cross to devalue half the people he died for.

Knowing these things, believing these things, I cannot sit still. I cannot be silent. I cannot choose not to care. So I will continue to weep with those who weep, and rejoice with those who rejoice. I will continue to volunteer my time to counsel women at my church. I will continue to fast, and pray, and mourn, and sing. I will continue to beg God for love, grace, humility, wisdom, courage, strength, and energy. I will continue to fight through the mess with any women or man who is willing.

And I will continue to march along side them.

I am not lumping every single person who thinks differently than me into one group. I am saying these things are true and they are happening, and I’m begging you to care. Im wondering if you will consider, for even a moment, if any of these things are true about you. I’m pleading with you to try to understand. I’m employing you to care more about people than your party, your money, your comfort, your own experiences. I am saying, I love you and care about you even if you still choose not to. I am grieving the brokenness between us, while rejoicing that we will live in perfect community together for eternity, no matter how much hurt or strife happens between us here. And I will march next to you all the way there.