The Upside-Down Reality of Weakness

The Upside-Down Reality of Weakness

Paul’s life was a constant reminder that his own strength could accomplish very little.  That dang thorn in his flesh never gave him much wiggle room.  I imagine Paul trying to take a few steps in his own power, in some self-reliant deviance, only to fall face-down, back into dependence on his Maker. 

Paul, I feel you, brother. I keep forgetting this God-dependence thing, and I keep trying to walk in this soul-amnesia.  I foolishly think that I can stand on my own two feet and white-knuckle through this life in my own feeble strength.  As soon as I start to act a little cocky, wobbling along in my own power, I receive a sucker-punch to the gut, and find myself trembling on my face, totally helpless in the presence of my own thorns in the flesh. 

And there you are, saying, “I will boast in my weaknesses, for when I am weak, then I am strong.”  And here I am, asking, “what in the world is this upside-down kingdom about, where we praise God for our weaknesses, and glory when we reach the end of ourselves?” 


What counter-intuitive calculations lead us to the conclusion that the meek shall inherit the earth; that those who weep will rise in joy; that when I am weak, then I am strong; that the poor inherit the kingdom of heaven; that the King of the universe came into the world in a cattle stall? 

And yet, here-in lies our hope: Paul asked three times for healing, and God said, “MY grace is sufficient for you, MY strength is perfected in your weakness.”  So Paul, head bowed and hands raised in submission, said, ” I surrender.” 

So here I am, flat on my back, at the end of myself, reminded for the 134,582nd time that I am, indeed, weak.  And, Paul, you say this: 

Most gladly, therefore, I will boast about my weaknesses, so that the power of Christ may dwell in me. I am well content in weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong. (2 Corinthians 12:10)

I will celebrate in my weaknesses for this reason: They create space in my life for the power of the Almighty God.  And I will be content in my suffering for this reason: it opens me up to deep communion with my suffering Savior. 

And yes, Paul, we can laugh together along with rest of beat-up, face-to-the-floor humanity, because in Christ, all of this mess is simply grace. 

The cloud of cynicism eclipsed by the light of love 

The cloud of cynicism eclipsed by the light of love 

Over the last few weeks, my mood has gotten increasingly dark. Hope has proven itself to be scarce, and deep despair has sprung up like unwelcome weeds in my mind and heart. I’ve grown bitter, grumpy, antagonistic, and jaded.  

Part of the cause of my dark season has been pure exhaustion. No one in our house is sleeping well. Part of the cause of my soul-darkness is medication mishaps. Prednisone, psychologically speaking, is clearly not my friend. In addition, my treatment team has been having conversations about their own fear of the potential fatality of my conditions and what long-term prognosis looks like. With all of these factors at play, my typical resilient ability to reframe my daily suffering has been less than stellar. 

I find myself tired of fighting what feels like a losing battle for my body, I feel tired of desperately trying to maintain my tenuous grip on hope in a situation that appears hopeless, and I am tired of living this life of passing out, unexpected and unexplained reactivity,  chronic pain, and total dependency.  I am tired of playing wack-a-mole with 15 symptoms at once, wielding faulty mallets. I am bone-exhausted. 

I wrestle with God over healing, and I read of the “severe mercies” of God: when God withholds something good because He possibly knows something that we don’t (St. Augustine, Confessions XI, 25). 

But really, God? I’m too tired to see good in this. I’m too sick to feel hope.  And, if I’m really honest, I’m almost offended by this “severe mercy” concept right now. It seems a little bit like mockery.  And yet I know that God is good, that He is for me, not against me, that He loves me. 

I know that I will continue to pray for healing, and I know that for reasons that can’t always be grasped by my measly human brain, He doesn’t always heal. And I have my toddler-style tantrums when the medical tests yeild no clear-cut answers, when treatment is a continual crap-shoot because no one seems to know what to do with me. I sit and pout, looking longingly at the sky for that one rain cloud that will bring the much-needed refreshment for my body and soul. And I have snarky, angry comments for God when not even a single measly cloud floats in to give me a sign of possible rain.  

My humble honesty of the past when I approached God in grief on my knees is precariously teetering on the edge of a cliff called cynicism. I am entering into the danger-zone of hostile, accusing, finger-pointing.  The result of humble, grief-stricken, heart-wide-open brokenness is communion with God in suffering. When we come to God with  fist-throwing, accusation-hurling fury, we run the risk of walking away in entitled bitterness, estranged from our life-source. 

In this season, I am tempted to choose to be offended by God and interpret lack of healing as abandonment.  I am inclined to curl in a ball and believe that it is God who continues to hit me when I am down. Worse yet, I start to believe that He has walked away, apathetic to my agony.

But this is my opportunity to employ some sound DBT strategies. I can choose to engage in the opposite-to-emotion tool that I know has carried me through difficult times. God has a host of promises that are unchanging. These are the promises that I can count on:

Never will He leave me or forsake me. ( Hebrews 13:5)

Because of His great love we are not consumed. The Lord’s lovingkindnesses never cease. They are new every morning. Great is His faithfulness. ( Lamentations 3:22)

Neither life, nor death, nor angels, nor demons, nor anything else in all creation is able to separate me from the Love of God in Christ Jesus our Lord. (Romans 8:38-39)

Weeping may endure for a night but joy comes in the morning. (Psalm 30:5)

We are hard pressed on every side but not crushed, perplexed but not in despair, persecuted but not abandoned, struck down but not destroyed. ( 2 Corinthians 4:8)

My heart has grown uncomfortably hard, and I am ready for some softening. God’s promises knead my heart and soften it just enough for the fog of disillusionment to lift and for me to rememember the Father’s deep, deep love for me.  

Don’t get me wrong, God can handle our anger and accusations. He will not turn from us when we bring whatever broken mess we carry to Him, even when we are furious with Him.  He also wants to show us how deeply and unbelievably loved we are. And when we cling to the anger, resentment, and offense like they are our best friends, we tend to build walls up against the loving God of the universe (from our side). 

It is time for me to lay down my God-thrashing weapons and come to Him on my knees once again,  open to whatever healing may look like.  It’s time to drop the cold, bitter cynicism.  God wants to wash my offense away with His love.  

What if I’m not physically healed? I will not fear, because I will still have Jesus, and He is more than enough. 

What Really Matters

I continue to play wack-a-mole with my symptoms.  I don’t feel like I am moving forward or backward.  I’m just desperately trying to keep my head and the heads of my dependent little ones above water.  I am exhausted.  I collected a couple more probable diagnoses: Mast Cell Activation Disorder (my body thinks that it is allergic to pretty much the entire world and produces too much histamine. This makes me feverish, achy, dizzy, itchy, and miserable.); Ehlers-Danlos Syndrome (my body has too much collagen in joints, skin, and in my vascular system.  This makes me stretchy, which is cool in theory, but not cool in reality. It hurts, really badly, because my body is trying to hold my joints together, and my veins and arteries don’t properly circulate blood).  These two diagnoses often occur with the POTS diagnosis.   So we try ten different kinds of medications, desperately attempting to add a couple pounds, and cross our fingers that my quality of life can start to creep up somewhere above just staying alive.  

I have also completed a series of neurological testing (6 hours, total), which yielded fascinating, albeit somewhat discouraging results.  My short term memory, attention span, word recall, and executive functioning skills are suffering. They aren’t horrendous, but juxtaposed with my actual IQ, they are remarkably low. The neuropsychologist says that this is directly caused by the POTS. Limited blood flow to the brain and times of hypoxia can lead to brain function that looks similar to mine. Interestingly enough, so can traumatic brain injuries. Fortunately, if the POTS symptoms can remain under control, my cognitive function will not continue to decline, according to this guy, but he made no mention of any possible improvement; only coping mechanisms: the same ones that they provide for someone who has a traumatic brain injury.

I like to consider myself to be an intellectual, a deep-thinker, a writer, a teacher, a nerd. This whole cognitive decline thing is a massive blow to my ego and to my self-image. What is interesting, however, is that with this illness that has robbed me of my ability to remember conversations that I just had yesterday and caused me to have to think for a full 30 seconds to remember a word as simple as “book”, I have come to a deeper, more beautiful, profound understanding of my Savior than I ever thought possible. Cognitive decline is terrible, painful, and humiliating, but the “knowledge” of my God who meets me in my sickness, brokenness, and suffering far surpasses any knowledge that a fully functioning brain can attain without Him. 

Ephesians 4:14-19 says,  

For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.

I love the contrast of the two forms of knowledge presented in this passage. God calls us to an experiential, face-to-face knowledge of Himself, a knowledge that, through the power of the Spirit, allows us the ability to experience the breadth and the depth, and the length, and the height of the magnificent love of Christ.  This knowledge is not the form of cognition that I have lost. I know more of this Christ now than I ever knew before the POTS and the EDS and the MCAD and all the other health issues that are present in my body. 

God’s kindness prevails. His goodness is undeniable. God’s presence is here, in the midst of my suffering, as we wack the mole that rears its ugly head at any given moment.  This is the knowledge of the Holy attained as sickness of earth ushers me into the sacred this spaces of heaven. I don’t know that I would trade it.  Yes, it takes me a crazy long time to write sometimes incomprehensible blog posts. I can’t follow a train of thought as far as I can throw it.  But I know the Christ of my salvation, my suffering King, and He loves me. 

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Romans 8:37-39

From Invisible Illness to Visible Illness

I have crossed a line in the world of chronic illness.  It is a line that I never wanted to cross.  Up until this week,  on a really exceptionally good day, I could go out in public and hope that no one could tell that I was sick.  If I wore the right shirt, no one could see my port.  I could resist using my scooter, with the assurance that I would sit down if I thought that I was going to faint.  I could put on some makeup, fix my hair, shave my legs, and put on a cute outfit. To the untrained eye, I looked okay.  Just a really thin person with a pale complexion.  No need for alarm or pity. People pass by, unfazed.  I blend comfortably into the background.  The perfect wallflower.  This is where I feel safe.  I’ve been working harder and harder at hiding, suspecting that others are picking up on my secret.  I see it in their eyes, the recognition of illness, but I quickly look down or look the other way.  I recoil at pity. It nauseates me.  (Well, lots of things nauseate me. Maybe that’s not fair to say!) Up until this week, I could go out to dinner with my family, and with great effort, seem like a pretty normal young mom of tots.  I could go to church gatherings and seem like the pretty average pastor’s wife.  I could have coffee with friends and feel like one of the girls.  I was in control of how much people knew about my illness.  I was in control of if  people knew about my illness.  I could call the shots, and I could maintain the illusion of normalcy until it felt appropriate to share what feels like sensitive, privy information about myself, a 34-year-old mom of a 3 and almost 2-year-old, wife of a pastor, writer, singer, teacher.  I could let people believe the lie that I was pretty normal before this week until I chose to open up further.

Now, I feel like my choice has been taken away.  The portable oxygen tank and tubing coming out of my nose, reminiscent of the The Fault In Our Stars or other tragic movies about illness and dying, now alert people with first glance to my crippling conditions. I can’t keep my secret and share at my own discretion.  I can’t go out and expect to be treated just like everyone else.  As I step out of the car, I can choose to look into the eyes of pity or stare at the ground in embarrassment.  That is my choice now.  So I’ve needed oxygen for a while.  Getting on oxygen doesn’t intrinsically change my state of health, except to regulate my O2 saturation levels.  It does, however, change my state of health in the eyes of others.  Now I am officially, 100 percent, unequivocally sick.  My presence carries with it a state of tension, of awareness of our morality, an unwelcome reminder to many people.  I am now more offensive than I was a week ago.  And maybe I can start to let go of my false pretense that has probably not been fooling anyone but myself.  Maybe this is the beginning of acceptance, and even hope.

I struggle to understand the concept of “invisible illness.”  I am not sure what illnesses fall under the umbrella generalization term of invisible illnesses.  Mental illnesses, chronic illnesses that people generally cannot see, anything that is not obvious to the unknowing bystander I suppose.  I read on boards and on blogs about the burdens of carrying around “invisible illnesses,”  and I think that I understand to some extent.  Sometimes, we really just want others to know how much we are suffering.  We want to scream from the rooftops how much pain we are in, how “exhausted” doesn’t even scratch the surface of our deep bone-weariness, how much we are in emotional and physical agony.  We can’t just “suck it up” and get better.  For me, however, I think the majority of the time, having an “invisible illness” felt like a preferable option to having a “visible illness.”  I certainly don’t want to step into a room and be seen.  I like to settle in under the radar.  I don’t want to be a label or a stereotype.  I want to have the ability to present myself as I please at any given time.  I want the chance to write and share my own story, not to have “a story” written across my body.  I do think that I understand wanting compassion and understanding in the midst of indiscernible suffering, but I also want the ability and privilege to limit what people know about my illness.

I want to be able to share pictures on Facebook and not have people think, “oh, poor girl.” I want them to be able to see my joy and my hope and my peace.  I want them to see my healing, emotional and spiritual. I want my strength to be more apparent than my dependence on hospitals and oxygen tanks and other medical equipment to keep me going.  I want to run 5K’s and 10K’s and half marathons and marathons and have my children cheer me on.  I don’t want to have to explain to my three-year-old what these canisters that mommy has to carry around with her are (by the way, they are mommy’s friends, Jim-Bob and Frank. They are now my daughter’s friends too. And sometimes her babies need oxygen.).

So here is the core of my problem: (Spoiler alert:  It is not that my invisible illness is now a visible one.) The core of my problem is that I am too proud.  I am too self-sufficient, and I am too bent on being “strong.”  I don’t really want to be known.  I don’t want to be a burden, or in the spot-light, or heaven-forbid, to be pitied in any way, shape, or form.  I am a control freak (That was one of the doctor’s diagnoses for me at Mayo. No joke.).  You would think that by now,  I would be more adept at releasing control.  No control driving. Check.  No control with my schedule. Check.  No control of my body.  Check. No control of the amount of chemicals coursing through my blood. Check. No control of my finances.  Check.  No. I’m still a control freak, and by golly, I want to control what people think about me.  I am unwilling to be seen as sick.  But here, I am. Sick.  Clearly sick.  And I’m not in control of that.  Now, my therapists would offer me options of things that I can feel in control of so that I don’t feel totally helpless. That strategy could be helpful to some extent, but I think that really, I just need to let go.  Like completely let go.  It’s not mine.  None of this is mine.  People’s opinions of me, their appraisals of me, and their pity of me is not mine to own.

What is mine?  Jesus is mine.  He’s in control. And He is good. And He loves me.  And that is my foundation.  Visible or invisible illness, I have what matters.  I have an unshakable foundation, so I can lay down my illusion (I promise, that’s all it ever was) of control.  I can wear the oxygen, ride the scooter, pray for healing, and accept the answers, knowing that healing looks like many different things for different people.  And who the heck cares what people think???

The Advent of the Sunflower

The Advent of the Sunflower

September is fast approaching, with only a hot August casting a shadow on its advent.  July is punctuated by the first few brilliant sunflowers lining the roads and fields in the Kansas heat-wave.  They seem undeterred by the 100-degree plus weather.  They actually thrive in the sun, unlike myself.  It is a well-known fact that sunflowers are heliotropic, meaning they follow the sun from East to West throughout the day, at least until their stems become a little more solidified.  At that point, they maintain a position of facing the east. And they thrive.  They thrive in what feels a bit like a desert wasteland.  The impatient ones, popping up in late July, speak to the inevitability of hope.  In this life, hope seems to sneak up on me in the soul-scorching heat of a summer that seems to be suffocating.  This outdoor oven reminds me every time that I step outside that my body is failing to do what it was designed to do.  It possesses no ability to regulate itself in any environment, especially one of extreme temperature.  And in the hot-box of the summer months, my hope has slowly melted away, as ice cubes in a glass of lemonade left in the sun.  With the absence of the refreshing hope, all I feel that is left is the boiling reality of a failing body and an over-extended life.

Four years ago, the sunflowers brought hope through the tears of miscarriage.  The following year, the sunflowers lifted their faces to assure me that there was a light at the end of the tunnel of postpartum depression and anxiety. Two years ago, the sunflowers carried with them my second, sweet, agonizing experience of childbirth and new life.  Last year, the sunflowers offered a glimpse of grace in the grips of chronic illness and life-changing news. This year, the flower that symbolizes faith feels like an empty mockery.  I trust that they will not return void come September.

Because God is so excellent with imagery and symbolism, and because I am a mystic at heart,  I know that the sunflowers will carry with them a new message of hope and reassurance in this season of trial.  I will listen and watch and wait.  I will watch from the passenger window of the cars of friends who drive me to and from my appointments and infusions.  I will watch from my scooter that is my new means of locomotion in public places and events.  I will watch from a body that is significantly withered and weak.  But maybe those positions will help me to be more receptive to message of the Spirit in His glorious creation.  Oh good God, let my position not harden my heart but soften it to the outpouring of your Spirit.  Melt away the bitterness and plant the seeds of hope with the blooming of your sunflowers.  Let my face be like the face of that symbolic plant that follows the direction of the sun from the first light of the dawn to the last ray of the evening.  Let me not grow hardened and too stiff-necked to look to your face in eternal hope.  Christ is in me, the hope of glory.