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. 

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Our Truth-Telling God

I have a unique opportunity this evening.  I am sitting in my husband’s office at the church, pretending to be professional.  The children are in the nursery, my husband is at the satellite campus working on technical issues for Sunday, and I have two hours to myself in a real office just to be an adult. (I am a giddy, excited, child-like adult right now.)  I am currently rocking out to the Mark Swayze band, and my mind is like simmering pot boiling over with ideas for writing.  Where to begin…

This adult time is excellent timing.  There is much to say. God is so incredibly at work, and I haven’t the foggiest idea where to begin.  Jordan (my husband) and I attended a conference last week. We boarded an actual airplane, just the two of us, slept through the night, and had the chance to finally go on our anniversary dinner (only a month late–our eyes were falling out of our faces and we were crying blood on our real anniversary–not an exaggeration, I promise!).

Jordan had to talk me into attending this conference.  I was set on attending one closer to home.  I relented after some cajoling, and I am so incredibly thankful that I did.  I knew it was going to be an awesome conference when we encountered many obstacles as we prepared to leave.  When one is on portable oxygen and has to fly somewhere, the process of flying is complicated.  The portable canisters are charged and pressurized.  They are not allowed on airplanes.  In my head, I picture massive explosions and bodies flying throughout the cabin . I don’t think that really happens, but you never know.  So instead of my normal oxygen canisters, I have to rent a portable oxygen concentrator.  If we were to purchase one, it would be thousands of dollars.  Insurance doesn’t cover these devices (they are considered a luxury, because, well, you know breathing is a luxury). So we had to rent one. Honestly,  I was not surprised that mine decided to malfunction before we boarded our first flight.  Every minute,  the blasted machine would alarm furiously until we shut it down.  Everyone around us would stop and stare.  Who knows what they thought we were harboring as we made our way through the airport.  The problem is that I need oxygen.  Thus, turning it off was not an option.  We finally found a way to outsmart the machine.  May I add that my husband is a genius?  In order to prevent the machine from alarming like it was about to explode, I was forced to push a button to change the flow about every thirty seconds for the entirety of our flights and layovers. Oh, and you can’t just trade it out at another oxygen supply company when you arrive at your destination. No.  That horrid machine has to be returned to the location where you rented it.  Thus, the process of pushing buttons every 30 seconds for six hours was repeated on our way home.  Snag one.

The other snags were somewhat expected.  My throat developed that telltale scratchy feeling that always results in a nasty cold the night before we flew out for the conference.  So began my cold that continues to this day.  Picture this:  Your oxygen is delivered through a tube that goes into your nose.  Your nose is a snotty mess.  You can’t breathe through your nose.  Bad news.  The day that we arrived I also got a stomach bug.  We are talking constant diarrhea.  I had no idea that a body could produce so much crap.  And now I know.  Totally bad for POTS.  It lasted the entirety of the conference.  True to form, however, I pushed through.  I attended all of the sessions, times of worship, and prayer meetings.  I’m not saying this is good.  It is in reality kind of crazy.  But I didn’t really consider staying back at the hotel and sleeping.  Not when I came this far and God obviously had a huge plan for this week, as evidenced by all of the obstacles that were jumping in our way. I was way too curious to stay in bed. Thankfully, He sustained me while I was being psycho.  Hopefully, I didn’t infect too many poor souls while being reckless.

So here’s what happened:

God affirmed me so beautifully.  He told me that He is proud of me.  He revealed to me more fully what I am passionate about:  Prayer, writing, and worship.  He told me that I didn’t have to try so hard.  I don’t have to try to exceed my body’s capacity.  He is using me in the here and now, in my broken body, to expand His kingdom.  He said that I am gifted and He delights in me. He said over and over again that He loves me.  I learned about what He is doing in the global church. Guys, it is MASSIVE.  He is totally at work, like all over the world.  I want to be in on it.   We can be in on it.  In order to be in on His work, we have to start with prayer.  Prayer is the starting point.  Without prayer, the church is dying.   With prayer, like true repentant, travailing, awe-filled, desperate prayer, we have hope for life.   We have to wake ourselves up.

I struggled too.  I have lived a life marked by weakness that is evident to others.  I find myself desperate to prove myself as strong and capable.  I feel chronically less than the other people around me.  It is almost like I have to look up to them from my stooped down position. This position does not lend itself well to symbiotic relationships and friendships.  I so want to feel equal to others.  I want to be able to keep up with them, emotionally, spiritually, and physically, but I have lived a life that has felt stunted and dwarfed.  We knew many people at the conference with whom we attended seminary.  I feared that they would see me this time as they saw me in seminary: limited, pitiful, not friend material.   With 1,600 people attending this conference, I was the only one walking around on oxygen,  clearly underweight, malnourished, sickly.  I got the pity-smiles, lots of sympathetic compliments on my glasses, and curious stares.  NOT WHAT I WANTED.  I wanted to scream, ” I AM TOUGH! I AM DOING AWESOME! DON’T YOU DARE PITY ME.”  People who knew me from seminary lovingly asked me or Jordan what was happening that I had to be on oxygen.  Jordan was excellent at presenting a concise and accurate story about my medical situation.  I, on the other hand, somewhat (ahem, totally) in denial, hemmed and hawed and tripped over my words, trying to minimize the situation and diffuse any concern that might arise from others. (Concern makes me squirmy).  This led to the blockage of real conversations.  I was just so desperate to be normal, for once. Not to be pitiful and weak.

So if you are tracking with me,  here I am, being loved and cheered on by my Lord while simultaneously wrestling with my core identity issues which really trip me up in my interpersonal relationships.  God obviously knows what He’s doing.  As I write this, it is clear that He was telling me exactly what I needed to hear.  I am enough.  I am complete. He is proud of me.  He is at work in me.  He loves me.  I am beautiful to Him.  I, in the mean time, am wrestling these lies that have followed me through the decades that scream that I am worthless, pitiful, and ultimately a black hole in the world.  What contradictions!  I’m pretty positive that God is a truth-teller.  I asked Jordan to fact check the messages that God was giving me.  He said that they are in line with the God he knows and with the Word.  And I got this cool book mark that also says all those things that God was telling me.  So it was legit. The bookmark proves it.

Now I have a responsibility and a gift.  My mission is to be set free from the shame.  I am commissioned to begin to believe these truths about myself as a daughter of God.  He is re-framing my personal narrative and cleaning up my resume.   I asked Him in the shower this morning if I am a mistake, and He said that I am absolutely not a mistake.  He again said how much He loves me.  I am asking Him to show me what it may look like for me to be set free from the self-hate and shame.  He is providing glimpses.  In response to our shower prayer time this morning, God sent two people to tell me today that I look like Jesus.  Yep.  He’s pretty amazing.  And I believe that He is transforming my identity.  This is the healing that He has for me.  The dawn is coming, and the night will soon be over.

Zephaniah 3:17

The Lord your God is in your midst. A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy. 

Prayer and Healing

I have a confession.  I can’t always remember what I have written about in the past, and I abhor reading my own writing, so I may write about the same issues over and over and have no idea that I am repeating myself.  My illness causes “brain fog” which includes issues with memory, and then my low oxygen also contributes to the decline of mental function.  My husband has to listen enthusiastically to the same stories on repeat, and only occasionally reminds me that I’ve shared them ten times before.  He is super-gracious.  He also has to hear the same “spiritual revelations” over and over.  They certainly feel brand-new to me, but he claims that I had that same revelation a month ago, and the month before that one, and actually every month over the past year.  At least never get bored.

My poor husband, and probably, you poor readers, might get bored frequently with my Fifty-First Dates fashioned writing.  Just call me Drew Barrymore, stick a DVD in the player every morning replaying my life and my hallmark moments for me, and call it good.

Skim the stuff that I’ve covered before.  I pray that my memory is not quite as bad as it seems, but I suspect that I circle around the same mountains frequently.  If I say, “Hey look at that gorgeous tree!! I’ve never seen anything quite that exquisite!” , you can respond with, “Oh yeah, we saw that about two weeks ago in this same spot.  We are going in circles.  Moving on.”  Then you can lead me by my precious little hand to a new path that we haven’t traversed.  Deal?  Okay.  Thanks.

Now that I’ve gotten my caveat out of the way, I can’t seem to remember what I was going to write about today.  Oh, yeah.  Healing.  My doctors are concerned.  I’m teetering on the edge of a danger-zone, health-wise, and that is lighting a fire under their butts.  This is good and bad.  It is good in that they may actually start really investing some energy in figuring out what is making my poor body malfunction so tremendously (now that they have significant documented evidence of the level of malfunction and the danger of the malfunctions).  It is bad in that my body is in a state of extreme limbo and there are critical issues that are becoming evident.  This is scary.  I don’t want to die, not anymore.  I want to be a wife and a mommy and a living human being.  I don’t want my heart to stop beating.  So I feel that I am being taken seriously.  Good and bad.

It is intuitive to assume that when one is sick, she thinks about healing quite frequently.  One will probably also encounter many people who speak of healing, who desire healing, who are praying fervently for her healing.  Most often, it is solely physical healing, because physical infirmity is the presenting issue.  Thus, over the past two years,  I have wrestled mightily with the issue of physical healing, God’s sovereignty, God’s will, God’s goodness, living in a fallen, broken world, and the purpose of pain and suffering.  I have looked at so many different perspectives on these matters.  Fortunately, I have not encountered many people who have thrown out condemning messages.  No one has come up to me and asked piously, “Who sinned?  Was it you, or your parents, or someone else who brought on this illness?”, as  Jesus’s disciples inquired of Him regarding the man blind from birth.  No one has said, “if you have enough faith you will be healed.”  No one has condemned me for not being healed yet, and no one has even said that it is all in my head (that has only been alluded to by a few friends).  I have been spared so much judgement and opposition, for which I am so thankful.  I would have been hard-pressed to endure much criticism or condemnation from others as most of my condemnation comes from my own mental arsenal of lies.  People, for the most part, have been understanding, kind, and compassionate.  I still struggle with what healing is supposed to look like for me, what to ask for from God, and if there is a larger picture of healing that I am missing because I am too close to the picture.

Last night, a dear group of ladies (powerful prayer warriors) offered to pray for me and for my husband.  We met them at the church and took turns being prayed over.  As the three warriors prayed over my husband,  I entertained our little ones in the nursery, and then we switched places.  These women mean business when they get together to pray, and my husband was in the sanctuary with them for an entire hour.  It was fast approaching the children’s bed-time, so when my turn came, I requested the abbreviated version of what Jordan received.  As I was voicing my concern about the kids’ bedtime and not taking up too much more time, I realized that I was coming up against an issue of worthiness.  I felt unworthy of extended prayer. I put the brakes on my request for a shorter prayer time, and I told them to pray as long as they felt led to pray.  It is a vulnerable position to put one’s self in, to be prayed over.  First of all, there is the whole “laying on of hands” thing.  We all know that I’m not one for being touched.  Then there is my control-freak nature that has to step down into a place of submission and passivity, or so I thought.  So as the praying started, I bowed my head and tried to take a passive position, just to let these warriors do the battling over me.  Ten minutes in, I felt a stirring in my Spirit to engage more actively, to softly whisper the name of Jesus, to breathe prayers of agreement, and to whisper prayers of the Spirit as He lead the way.  In actively engaging in the prayer session,  I felt a new investment in the prayer time.  I felt like one of the warriors going in for battle.  I was fighting alongside them, no longer a passive recipient of prayer.  I felt an overwhelming energy and joy rising up in my soul.

As the ladies continued to pray, I was aware of an overwhelming focus on physical healing.  I don’t believe that the focus on physical healing was bad, or out-of-place.  I’m not sure what I think of it honestly,  but I felt the Spirit whispering ceaselessly, “I want so much more than just physical healing for you. Do you see what I’m doing within your illness? I am healing you.”  I knew that He was calling me to praise Him.  He is so unbelievably faithful, and His faithfulness has been more evident during the past two years than I have ever seen before I got sick.  I did not feel a sense of urgency for physical healing.  I felt gratitude, deep, mirthful, joyful, soul-embracing thankfulness.  This seemed out of place for the type of praying that was going on.  I prayed out loud, the ladies prayed more.  They prayed scripture, the armor of God,  Psalm 91, and parts of James.  I am in agreement with their prayers.  They were theologically sound, and they flowed from hearts of love.  I am so thankful for the opportunity to be prayed over.  In addition,  I felt like I had a bit of a different vantage point.

I certainly can’t make complete sense out of suffering, any form of it.  I don’t believe that God’s perfect will involves illness, death, and sin.  My experience of suffering, however, shows me a picture of God that I have never seen before.  My brushes with death have offered a depth of agony that has been met with an equally powerful vision of God’s goodness and grace.  The desire to share in Christ’s sufferings is legit, to share in Christ’s death, so also to experience the power of the resurrection.  There is this trump card that He holds that He flashes to those who are in the depth of suffering.  It’s like He’s winking at us, saying, “Don’t worry.  I’ve got this.  No matter what happens, I am making all things right.”  I have never had that glimpse of God’s hand of cards until I was at the utter end of myself.

I don’t know.  I will keep praying for physical healing.  I want to be strong and healthy and capable.  Of course I do.  I don’t thrive in vulnerable places, like illness.  I also know that our vulnerable places are the soil in which our master Gardener loves to plant the seeds of the Kingdom.  So if I need to stay vulnerable for kingdom growth, I’m good with that.  If He physically heals, I will praise Him.  If He heals in other ways and chooses not to physically heal,  I will praise Him.   My Savior lives, and He redeems, and He heals.  Sometimes His healing just looks a little different than what we expect.

When You are Broken and Untouchable

I am typing this post with about 30 percent vision in my left eye, fingers trembling because of my body’s crazy reactions to Percocet, and with a mid-grade fever.  Do you want a taste of what an end-of-the-world outbreak might look like?  Brush shoulders (or share some breathing space) with someone with EKC. Epidemic Karatoconjunctivitis is a freak version of pink eye, completely viral, resistant to all antibiotics and virtually any form of treatment.  In most of its victims, it attacks both eyes and shoots tiny razors into your corneas until you scream and run, begging someone to dig your eyes out of your head with melon scoopers (Well, at least that is my response).

Our youngest began his journey with this beastly mutation of pink-eye on the first day of our vacation, roughly two and a half weeks ago.  I watched as his eye disappeared. His cheek and eyelid slowly swelled to the point that they swallowed up his poor flaming red eye. 17 hours away from home and with no out-of-state insurance coverage, we sent pictures to every medical professional we knew. We began with eye drops, to no avail.  We progressed to oral antibiotics and watched the poor baby continue to suffer.  We breathed a corporate sigh of relief as we cross state lines back into our home state and promptly took him straight to the doctor the day after we arrived home.

After unnecessary delay, they admitted the poor child to the pediatric unit of our hospital with a diagnosis of pre-septal cellulitis, and a plan to run a round of IV antibiotics.  Evidently, you don’t mess around with eyes and babies.  I am glad.  I felt better to have him under more consistent care.  In addition, giving a child under the age of two burning steroid eye drops is not a feat for the faint of heart (or weak of arm muscles).  By this point, my husband had the infection in both eyes.  He spent the night in the hospital with our baby, while I stayed at home with our three-year-old daughter. My heart was ripped in half to leave our sweet little one, but his daddy was taking great care of him.  And I got to cuddle with my darling girl for two nights in a row.

My infection began 11 days ago, and of course, as evidenced clearly in the history of our family illnesses, I had to get hit the hardest.  As pointed out by our eye doctor and good friend, there is no “normal progression of an illness” for me.  I am so far beyond normal that no one knows what to expect when I get sick.  Our daughter’s eye began to get pink when my eyes started to manifest symptoms, and thankfully, hers has been the most mild case of the family.

It has been documented that in several other countries, EKC is a category IV communicable illness where all cases must be reported and quarantined for 2-3 weeks.  Our country is not as strict, but it probably should be.  You know that no one wants you around when the eye doctor doesn’t allow you to sit in his waiting room, and your PCP sweeps you back before you can say hello when you walk into her office.  I would say that it makes me feel special, but that would be the wrong word.  Talk about feeling like an “untouchable!” Maybe this is what leprosy felt like.  Thank goodness, this diagnosis only secures a quarantine of 14 days!

The day that I crossed the line into end-of-the-world-epidemic-level-scared was the day that my eyes started to BLEED.  When you start crying blood, you start envisioning all of those apocalyptic contagion movies that you saw as a teenager and young adult, or start wondering if you are becoming a zombie who may develop an insatiable craving for brains when she wakes up in the morning. Please note, no one else in my family had the pleasure of blood for tears.  That was unique to me.  About three days ago, I crossed another line.  I decided at that point that I could no longer look in the mirror without a precursor of a calm, encouraging pep-talk that that deformed, swollen-faced person with blood-red eyes is not an accurate representation of normal Megan, and than in a few weeks, I will hopefully have human eyes surrounded by peach, healthy skin, not purple, inflated rubber.

In seriousness, this has been a scary time. Vision is important. Uncontrolled infections are scary. It difficult and painful to be cut off from the rest of the world, even if it is for a couple of weeks.  I would never blame people for staying away. I would stay away also if I were in their shoes.  Let me not forget to mention that there have been a few generous spirits who have braved our quarantined home and loved us by bringing in happy meals for the kids and groceries.  We’ve even had a couple people drive us places, which was really risky on their part.  We’ve enjoyed a couple fun games of “ding-dong-ditch” as people have brought groceries and left them on the door-step.  We have been loved well by some special people in the midst of our crisis as “untouchables.”  It causes me to step back and wonder if I would love well in the midst of potential risks that loving well might hold.  I hope that I would.  I hope that I would step out of my safe comfort zone to love those leprous ones in our community who might “contaminate” us.  I hope that I could look the disfigured in the eyes and say, “I love you and am here for you.” I am infinitely thankful for those in our community who have bravely stepped past the boundaries and loved us in our potentially contagious brokenness. They have housed the spirit of Christ for us.

It is lonely and isolating to be sick, broken, and untouchable.  And just another opportunity to become one of the “least of these.”  Thank you, Lord, for the opportunity to identify as one in such deep, desperate, agonizing need.  Help me, one day soon, to be in a position to be Jesus to those whom society deems untouchable.

 

The Descent from the Mountain

Oh Lord, how many are my foes! Many are rising up against me; many are saying to me, “There is no help for you in God.”

But You, Oh Lord, are a shield around me, my glory and the one who lifts up my head.  I cry aloud to the Lord, and He answers me from His holy hill. 

I lie down and sleep;  I awake again, for the Lord sustains me. 

Psalm 3: 1-5

Throughout the summer, we have had prayer night every Wednesday night as we are preparing our satellite campus for launch in the fall.  The sanctuary is lying fallow for the summer, in preparation for the coming birth of a new worship center.  In the sabbath rest of the building, we have established an informal time of individual prayer, followed by corporate prayer and communion.  Our average attendance is four to five individuals.  Two of those are my husband (the pastor) and me (the pastor’s wife).  My husband likes to say that we are small but mighty. I think that we are small and weak. I think that God loves using the small to display the His might.  We considered cancelling the prayer time in the beginning of the summer due to low attendance ( the poor nursery workers carve out the time to come and care for the pastor’s kids and no one else).  But, shoot, it is easier for them and it’s free child-care for us.  So in all reality, it is a win-win.

Really, though, we came to the conclusion that the numbers don’t really matter.  When two or three are gathered together in His name, He is in our midst.  And, boy, did the scripture become a reality this summer.  Unstructured prayer time is not super exciting in the church.  In my experience, people shy away from it.  It is quiet, there is no one leading, and you have to really use your own brain and heart.  This gets tricky.  It also involves stepping out of the solid and into the fluid.  That is scary.  I know, because I shy away from it.  Every single Wednesday,  I have strongly considered and weighed out the possibility of staying home from the prayer time and sending my husband and the kids.  I have good excuses.  Like being sick.  That’s my best excuse, and it is ALWAYS legit.  But despite exhaustion, pain, fevers, dehydration, and everything else in the book of chronic illness, I have found myself somehow sitting in the passenger seat of our car wondering how I managed to get ready and go without bailing.  (Hint:  It’s always God).

In the beginning of the summer, I would sit in the car and kill time before entering the building.  I felt so much anxiety about going into the prayer time.  When I got in there, I prayed on my knees or in a chair.  Sometimes,  I couldn’t actually go into the sanctuary.  It was too overwhelming.  I would sit in the narthex or a classroom to pray.  As weeks progressed, however, the sanctuary called me more and more.  Some days, God would call me to the exterior of the building to lay hands on the bricks and pray in tongues and sing worship songs.  The tears started a couple weeks ago.  A power that I can’t explain has begun to stir my spirit on Wednesday nights and bring me to my knees at the altar.  Last night, it landed me smack under the wooden cross in the right front corner of the sanctuary.  I wrote in my journal, prayed, and opened my Bible to the Psalms.  This book of poetry holds new weight in my life during this season of suffering, confusion, limbo, and waiting.  I opened to Psalm 3, and God plucked a chord in my spirit that resonated with the chord that David plucked as he authored this melancholic yet triumphant Psalm.  I have never before in my life experienced the word of God exuding such life as I did last night.  I cannot understand what happened in my heart as I read the words in that Holy Bible, but it was nothing short of crazy absurdly supernatural. “But thou, oh Lord, are a shield for me; my glory and the lifter of my head” morphed from words on paper to the most passionate cry that my heart could mutter.   I read those five verses over and over again.  I repeated them through snot and tears for thirty minutes, and I felt the electrical presence of the Most High God.

I wish that words could sufficiently convey my experience of coming face-to-face with the goodness of God last night.  If they could, however, it wouldn’t be quite as heavenly, would it?  I suppose that it is okay that I cannot fully communicate or even grasp what happened at the foot of the cross, in the crux of my sickness and brokenness.  That is mostly how God works anyway.  But I left with a clear assurance:  He is so unbelievable GOOD.  Our God is GOOD.  My God is GOOD. He is so GOOD.  Hear me.  He is a good God.  Did you get it? He’s good.

Moses came down from Mount Sinai with a radiant, shiny face.  I feel like last night was my own version of Mount Sinai.  My face, however, I’m pretty sure was not shining. It had black streaks running down it from not water-proof mascara (one would think that I would learn).  I was thrilled and overjoyed and completely dumbfounded.  We know, however, that any change in emotional (or spiritual) homeostasis likes to trigger buckets and buckets of adrenaline to be dumped into my system.  So, no, I wasn’t like Moses. I was like my POTSIE self after a God-encounter.  My reaction was not nearly as cool as Moses’.  I was just vibrating out of my seat as my inhuman supply of norepinephrine created in me a human hummingbird.  The physical ramifications of my God-encounter were excessive, if you ask me.  Really, can’t a girl visit the mountain of God every once in a while without a crazy POTS flare-up afterwards?  No? Okay.  No problem.  I’ll probably keep going up there.  It’s totally worth it.  The flare-up only lasted for about five hours.

This post is not elegant (I had hoped it would be, but it’s not).  I just wanted to get it out into the world.  He is our shield.  He is our glory.  He is the lifter of our heads, no matter what our backs are bent down by.  And if you missed it earlier, God is Good.  Got it?

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.