Becoming a Master of Disguise

Becoming a Master of Disguise

Lately,  I have been working on developing my make-up skills.  I am learning the secrets of bronzer, lip color, and the art of eye make-up.  I think that this is because I have been desperately trying harder and harder to not appear as sick as I feel. I know people who feel frustrated when they hear “But you don’t look sick.”  When I hear people say this statement to me, I think to myself smugly, “Good,  I’ve been working hard to achieve this goal. I better not look sick.”

I have been putting entirely too much effort into disguising my illness.  In fact, the irony of it all is that I have been pouring almost all of my sorely limited energy into disguising my illness.  I work so diligently on hair, fashion, and make-up that I end up collapsing in bed because I used up all of my POTSie, Masty, and Zebra spoons for the entire day in the 30 minutes that it took me to get ready.  Pointless, right?

Here’s the other kicker–I get so wrapped up in trying to convince people that I am able to be well and self-sufficient that I end up sicker, and I actually have the nerve to get mad at people for believing me.

 

I actually get mad at people for believing me! That’s crazy, right?  I want to look normal, be treated normally, and fit in with the general population, but I also expect people to read my mind when I feel like I’m dying.  I’m learning something revolutionary: People don’t read minds.  Well, generally they don’t.  There are those empaths that are so intuitive that they can see past my BS in a nano-second.  I have about three of them in my life, and thank the Lord, my husband is one of them.  Other than the psychic-seeming empaths, however, 98 percent of the population do not read minds.

I see two reasons for my dysfunctional behavior of covering up my pain:

The first reason for my need to pretend is that I feel the need to prove myself, perform, and not inconvenience anyone.  I have an ingrained sense of responsibility to protect people from my “needy” self, so I desperately try to convince everyone that they don’t need to be concerned about me.  This is probably because I have never felt worthy of nurture or care, and nurture and care make me squirm like a worm-digging, mud-pie building kid forced to don a stiff, unyielding fancy suit at a formal wedding.  Receiving care just doesn’t feel right nor does it feel natural.

My second reason that I can see is that we live in a culture of rugged individualism and fierce independence.  Western society struggles to see the need for interdependence, believing that the stronger we are individually, the more we are able to stand on our own two feet without any support from others.  This is one of the reasons why we as a society are so sick.  We have grown to isolate ourselves more and more, creating a bunch of little one-person-islands trying to pretend that we are content to “go it on our own” yet secretly hoping that someone will see our pain.  I have trended toward giving in to the pervasive message that our society is sending out:  Be strong; do it yourself.  This is not the truth of being created in the image of God.  We were created for relationship, to do life together, to be interdependent, and to grow and learn in community.

What I have attempted to do in creating this facade of independence is insanity.  Here’s the truth:  I am sick, and I need care.  I do not feel well, ever.  I actually feel like I have been hit by a truck, and then again by a city bus, and once again by a freight train.  Ninety-five percent of the time,  I have a fever.  If I stand up for more than two minutes, my brain stops working, my legs give out, and I will fall.  On a good day, I get hives when I am exposed to any kind of fragrance, chemical, or food.  On a bad day,  I will have difficulty breathing and will experience anaphylaxis.  I am on hard-core pain killers to manage the pain caused by my constantly over-extending and dislocating joints, and I frequently have breakthrough pain.  Every task, including walking ten steps down the hall, requires the energy that I used to expend on a 10 to 20 mile run.  I give myself pep-talks to brush my teeth or help my children brush their teeth.  I am better physically if I am lying in bed all day, but I am better emotionally if I am able to be out and engage in the world.  There is no cure for my illnesses, and despite what I try to to communicate,  I am not feeling any better this Holiday season than I was last year.

It’s not a pretty picture.  My illness, like my trauma, does not make people feel good.  That’s why I try not to let it show.  I want to make people feel good.  But here’s the deal:  In trying to make others “feel good”,  I am preventing myself from being known, making myself even sicker, and staving off actual relationships.  And then everyone feels even worse.

There is beauty in our messy, broken lives.  There is no real beauty in a facade.  Our false selves are hollow and ultimately push others away.  Our false independence creates in us attitudes of either arrogance or self-hate.  Our rugged individualism creates walls that end up being prisons.

So here I am, make-up-free, flat on my back, declaring that I am not okay.  I need people, and I need nurture, and sometimes I need people to sit with me in my suffering.  Within my Spirit, a voice whispers that we were all created for this kind of fellowship.

This blog post in obviously only a first step in my “coming out” process.  I stand in this liminal space, here in the blogosphere, declaring my need for interdependence, vulnerability, and truth, and I will carry it into the real world.  I will reach out to one person, and then another, and then another.

It might require baby steps.  I don’t plan on stopping the application of make-up, but I do plan on re-prioritizing.  Looking like I am well does not need to be my first priority.  Being daily transformed to the character of Christ, being authentic, loving my children, just connecting with others moment-by-moment, and taking care of myself spiritually, physically, and emotionally: These need to be my priorities.  If I am living into these priorities, then I am moving in the right direction.

We are not doing anyone anyone any favors by pretending that we are “okay” when we truly are not okay.  We are not protecting others, we are not protecting ourselves, and we are not protecting God.  We are stunting our growth and killing our relationships.  So, friends, as we step into reality and truth, let’s start trusting one another a little bit more, let’s lay down our self-sufficient pride enough to risk “looking sick” and making ourselves and others a little bit uncomfortable.

I am learning that I am falsely assuming that others want to hear that I am well when I am not.  I am learning that more often than not in my relationships, people ask because they care.  I am learning that as a body of Christ, we meet each other’s compassion with truth, not false images of wellness.  Our healing comes in our vulnerability, and our deceptions worsen our sicknesses. An old AA adage goes as follows:  “You are only as sick as your secrets.”  What if we lived in the open?  What if we laid down the masks? What if we met compassion with honesty and actually lived in community?  I know that my own life would look radically different, and I know that my load would feel undoubtably lighter.   We cannot bear one another’s burdens if we are not willing to disclose to others our own burdens.

Love has two sides:  Grace and truth.  Let’s meet others with both compassion and honesty as we live authentic, vulnerable, facade-free lives.

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Freedom Within Borders

Freedom Within Borders

As a child,  I was ultra-submissive.  I never rocked the boat.  I was terrified of breaking the rules.  I was rigid and well-behaved, trembling at the thought of doing anything rebellious.  As an adolescent and teenager,  I was the same meek, timid, rule-following legalist.  I craved structure, rules, and boundaries.  I even made my own arbitrary world of boundaries and structure because the set rules were not rigid enough.  They diagnosed my world of rules as “anorexia.”  I lived and breathed rules.  They defined me.  Without my system of  restriction,  I had no sense of self.  How sad is it when your identity is shaped by what you refuse to do?  I built this prison for myself, and I got way too comfortable in it.

Somewhere along the line, however, I broke.  After a lifetime of worshipping the rules,  I could no longer walk the tightrope that I had strung for myself.   I didn’t turn wild-child or anything, but I did let loose a bit.  I ate desserts.  I had real, legitimate conversations with God and asked Him what seemed like “off-limits” questions.  I allowed myself to get angry and express my anger.  I allowed myself to voice the truth of my suffering.  I risked relationships: real, meaningful relationships.  I watched tough movies.  I said words like “crap” without flinching.  I stopped trying to be absolutely perfect in every way.  And I embraced a new kind of freedom.  I also uncovered this inner rebel whom I had never before encountered.  I stepped out of my box.

Many people around me encouraged this new slightly rebellious side.  In anorexia recovery, it is difficult to really make strides toward freedom without stepping outside of one’s own rigidly structured habits.  I became more spontaneous, which allowed me to experience a new side of my own humanity and made space for joy and excitement.  As restrictive living lessened, my world expanded, and as my world expanded, I realized that I had been hiding from a bunch of phantoms that I had dreamed up.  Many of my fears were nothing but smoke and mirrors.

This rebel was helpful in recovery from an eating disorder, and I am extremely thankful to have tasted the fresh life of freedom.

In an unfortunate turn of events, however,  I find myself trying to navigate a new world of restrictions.  These restrictions are  imposed by doctors and my treatment team as we try to manage my chronic illnesses.  The Megan of my youth would have clung to restrictions and been the most compliant patient on the planet.  She would follow doctors orders at all times and never imagine pushing the envelope.  Unfortunately, this Megan is quite different from the Megan of my youth.

I have this need to push the limits.  Some providers on my treatment team call this going “rogue.”  With the unpredictability of POTS and MCAD, I am supposed to be in a wheelchair when I leave the house.  With the temperature in the 90’s most afternoons,  I need to stay inside because my body cannot regulate its own thermostat.  With my complex set of allergies and motility issues, I am on a strict diet, involving no processed food, refined sugar, artificial colors, animal protein, dairy, gluten, and fiber. Basically, I can eat about five to ten percent of food options out there.

I find myself bucking up against these medical boundaries that have been compassionately placed upon me.  The rebel in me says,  “No one can tell me what I can’t do,” so I sneak in a handful of teddy grahams.  I take the kids out in the backyard on a hot afternoon.  I “forget” to remind my husband to put my wheelchair in back of the car.  I scoff at the rigidity of the rules and try to do my own thing.  The rules seem oppressive.  It seems like people are trying to rob me of life and freedom and fun.  And since my rebellious years are a bit delayed, I act a bit like a typical rebellious teenager, turning on her heels away from those who love her as they summon her to a life that they know is more life-giving. She is convinced, however, that they are trying to rob her of “real life.”

So as I do my own thing, I reap the consequences.  I eat what I feel like eating, and I suffer tremendous pain and sometimes near-anaphalaxis as a result.  I take my children outside to play, and I collapse in the grass when my legs give out due to heat exhaustion.  I “conveniently” forget my wheelchair and end up in bed for a couple days after a simple doctor’s appointment.  I wail that it is not fair, and I all but beat my chest with my fists at the injustice of my life.  I pout, and if I had the energy, I would stomp my stubborn feet all the way to my bed.

I didn’t ask for these restrictions, and I resent them.  But I am reminded that they are there so that I can actually have a chance at life.  These restrictions are not like my self-imposed prison that I created so many years ago.  They are life-giving boundaries, placed around me so that I can move safely and freely in this life that is mine to live.

I have to avoid many foods so that I can be pain-free and empowered to pursue important goals in my life.  I cannot be the mother, friend, and wife that I was created to be if I am in the midst of allergic reaction after allergic reaction.  I have a wheelchair so that I can go out and enjoy the events and activities that other people get to enjoy.  What if I could see my wheelchair as a vehicle that could transport me further into abundance and hope?  I cannot go outside often, but I can be inside in a stable environment, reading stories to my little ones, singing songs, playing my keyboard, and writing so that my life can bring meaning and life to others.

These boundaries that surround my life look different than what I had expected my borders to look like.  That does not mean, however, that they are meant to be disregarded and cast aside.  In my rebellion,  I will suffer.  The rules are not created to chastise me or smother me.  They are created to free me to live more fully.

I still feel like a rebel, and I kind of like the rebel part of me.  I still want to eat chocolate cake, french fries, and maybe a really delicious salad.  But I want to live a meaningful, abundant life, and for me, that means learning to settle into a particular set of boundaries.

In the perfect world, where there is no suffering, pain, or sickness, this lifestyle would be unnecessary.  One day, when I know as I am fully known, I will be unfettered by a failing body.  But that is not today, and this is not the perfect world.  The Kingdom is not fully here on earth, so I will submit and trust that I can still taste the glories of the Kingdom as I navigate life within these new borders.

I am slowly learning to find freedom within these boundaries, and it is beautiful.

 

White-hot Forgiveness

White-hot Forgiveness

I wrote this article back in March, in the middle of the Lenten season.  It was shared here at Annesley Writers. I realized that I have not shared it here, on my personal site with you guys. 

I have this propensity to explode. When my blood pressure fluctuates, when blood doesn’t adequately pump to my brain, when my pain medications are wearing off, I am unpredictable.

The most difficult part of this issue is that I am agonizingly aware of my irrational temper-tantrums, and I live in fear of my explosions. One of my family’s biggest complaints about my struggle with my chronic illnesses (aside from my horrific memory) is that I have anger issues.

No amount of awareness of the neurological basis for this weakness can relieve me of the guilt that comes after snapping at my empathetic kids or my beloved husband.

I try to stay seated as this position helps with the blood flowing to the brain issue. I take medications to help regulate heart rate and blood pressure and to reduce the gallons of adrenaline my broken nervous system dumps into my body. These physiological interventions only work minimally.

I still fall into non-coherent, flames-shooting-out-of-ears nuclear blasts. They usually end with a humiliated chuckle, and an embarrassed muttering of, “Sorry, Mommy’s head turned into a volcano again.”

Internally, I am thrashing myself, resolving to control my temper better. Externally, I am emailing my doctor, desperately begging for some kind of medical intervention that will stabilize my labile physiology that seems to have my psychology hanging by a thread.

Cognitive decline, neurological conditions, and anger outbursts can bring even the greatest saint to her knees, and these deficits pull out the parts of me that I never want to have exposed to the light of day.

Lent seems to do the same thing, and the season of Lent this year has corresponded with a heightened awareness of my short-comings.

Hot tears, intermingled with hot bath water, Epsom salts, and essential oils, meet me in the rare moments of solitude and reflection during my Lenten morning bath times. Bathing is tricky with toddlers around, so I strategically schedule shower and bath time for early in the morning before my husband leaves for work. The tears flow more freely these days, triggered by my wrestling-matches with my volatile temper.

As my body is wrapped in the warmth and comfort of oil, magnesium, and sulfate-infused water, my spirit feels cracked and raw. I squeeze my eyes shut to find my heart hemorrhaging into this cleansing pool.  I can’t do this on my own.  I am at the end of my pathetically limited internal resources, self-sufficiency, functionality, and medical options.  My false sense of self dissolves with the salts in these purifying waters, and I ugly-cry until my fingers and toes are wrinkled and the water is luke-warm.

Lent is a time of preparation for Jesus’ cross.  We let go of something that feels important to us, and we take on spiritual disciplines that may have fallen to the wayside over the year.  We strip away the flesh in order to put on Christ.

I am so quick to judge these 40 days as tedious, but Lent, in fact, is designed to be the church’s springtime, as we pull back winter’s layers of death and rise with a spirit of repentance, embracing the full gift of forgiveness through the cross of Christ, and experience a fresh empowerment of the Holy Spirit to embody and further the Kingdom of God.

How many nights do I cuddle with my precious three-year-old daughter in her bed, whispering words of repentance into her ear? “I am so sorry that I yelled at you tonight, Baby. Mommy lost her temper again, and I was wrong.” Or how many times do I have to sit down with my husband after accusing him of something completely absurd to ask his forgiveness?

I keep asking forgiveness, and they keep forgiving.

My temper issues are only one example of a deeper condition. One thing has become certain over this Lenten season:  I am in desperate need of forgiveness and grace, every day, every hour, every minute. 

I frequently feel like Paul: I need something more! For if I know the law but still can’t keep it, and if the power of sin within me keeps sabotaging my best intentions, I obviously need help! I realize that I don’t have what it takes … Something has gone wrong deep within me and gets the better of me every time.” (Romans 7: 17-20, The Message).

My illnesses are getting the better of me. They capitalize on my weakness. This is such a hopeless feeling, except, except, I can hear a whisper…

  “Come now, let us reason together…” (Isaiah 1:18).

Lord, what reasoning do you have to offer? I whisper back. I’m a white-hot flame, ready to singe the next victim. I am lost in this chaos of a broken body and broken brain. The weight of it is smothering.

I died for this too. I died for you, with all of your struggles and all of your illnesses. I beat death for you too, Megan, my beloved child.

My tearful bath time comes to a close, I cannot lament any longer, and I feel a sense of closure, or exhaustion, as I rise to face the day.  Pandora switches songs as I wrap my diseased body in a towel.  God sings the second verse like a fresh breath of life.  I laugh out loud with the joy that only can come in the morning following a long night of weeping:

When Satan tempts me to despair,

And tells me of the guilt within,

Upward I look and see Him there,

Who made an end to all my sin.

Because the sinless Savior died

My sinful soul is counted free

For God the just is satisfied

To look on Him and pardon me.”

(Before the Throne of God Above, Charitee Lees Bancroft, 1841)

 

 

 

 

 

 

 

The Art of Surfing

The Art of Surfing

Two weeks ago,  I had a good few days.  I felt stronger.  I went outside with the kids.  I was upright more frequently.  I was thinking, “The feeding tube has helped! We might be getting somewhere!” I was not falling over when I stood up.  I didn’t have to lie in bed all day.  I hadn’t felt so well in months, maybe even years.  Ground has been covered.  There is hope for improvement, maybe even healing.  We finally found an intervention that really seems to be helping me to gain some forward momentum.

It was great.

Then, five days ago,  the fevers started again.  Every 8 hours, lasting for about two hours.  The pain starts in my fingers and toes and slowly spreads inward, through my body, like a poison, until it infiltrates my entire being.  My stomach, my core, shoots searing pain like a volcano, sending me gasping and retreating to my safe place in my mind to escape the agony.  With the fevers come the chills, which seem more appropriately labeled convulsions based on their intensity.

The POTS symptoms have escalated, and we suspect that I have a new allergy–to my tube feed formula, the stuff that is being pumped into me for 15 hours a day.  I am allergic to the formula that is helping to restore me back to health.  And insurance will not cover any other formula.

And everything crashes again.

I am a surfer.

I’m not a surfer in reality.  That would be disastrous. I only surf theoretically.  I surf the waves of chronic illness.  Some illnesses have consistent, predictable symptoms, though, I suspect that most illnesses do not feel very predictable.  My illnesses, however, are highly unpredictable.  I feel better one day, go out with the family, and I get slapped in the face with a reaction in the middle of a perfectly normal outing.  I am laughing with friends at noon, and by dinner time, I am moaning in bed in pain.  And the next day, when someone asks me what happened yesterday, I don’t remember anything out of the ordinary.  The waves are frequent, and the tide is choppy.  But I am getting better at surfing.

With unpredictable chronic illness, I find myself forced into extreme flexibility.

I have to be able to adjust quickly. Got something planned for today?  Can’t move?  Okay, so we take a rain check.  My actual health is not the only thing that forces flexibility.  Finances and insurance are almost as, if not more, difficult to deal with than the illnesses themselves.  I can do my infusions at home until I am forced to switch to a new insurance, that no longer covers home infusions.  Then I have to find someone to drive me to the hospital for three hours, three times a week.  Okay.  No biggie.  Shuffle the schedule.  It may be a little inconvenient, but at least I have access to modern medicine and a multitude of folks willing to shuttle me around.

Sometimes,  I long for the waves to just settle down.  I long for peaceful, quiet, calm waters in which I could simply peacefully float.  Maybe just for a span of seven days.

And yet,  here I am in this ocean, learning to ride the waves.

I am learning the skills of surfing on this ocean called life.  (I’m pretty positive that most people feel like his or her life is marked by some pretty unreal waves).  Some of the skills that help me navigate the waves of unpredictability are lament, gratitude, and laughter.

My friend Esther Fleece,  in her book No More Faking Fine, pours out her heart, which is a reflection of God’s heart, about the necessity of the process of lament. “When we lament to God,” she says, “we see Him more clearly on the other side.”  To chose to not communicate to God our brokenness, disappointment, and frustration, we miss out on actual spiritual intimacy with God.  It is not self-pity to cry out to God when life is difficult and painful.  To lament and weep before God is actually life-giving, and in doing so, we can regain our balance on that surf-board.  So I know it seems counter-intuitive, but my first skill in riding the waves of this health-storm is my ability to express my frustration.

My writing role model Ann Voskamp knows all about gratitude.  She was called by God to change her life through daily acts of gratitude, and she collected blessings like wildflowers in a never-ending feild.  She counted a thousand gifts in her life, and her life was forever changed.  It is the secret that Paul let out in Philippians 4:11-12:

I have learned how to be content with whatever I have. I know how to live on almost nothing, or with everything.  I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.”

Paul’s secret was thanksgiving, so Ann picked up a pen every day and wrote down her gifts.  And she says that there is always room for gratitude.  There is.  Every day of my life, in bed, or out of bed, in pain or pain-free, verticle or horizontal, there is always something to be thankful for:  Crisp bed sheets, a window to look out,  the sound of the birds, access to running water,  the presence of my God And on the days where I can only know for sure that God is present, when I know nothing else for sure,  I can be thankful.  I would rather spend a day suffering knowing that God is by my side, than spend that day free of suffering but in the absence of God.  God is good.  I choose gratitude.  I steady my balance on the board, and ride on.

Laughter is wonderful medicine, and it helps me hold steady on some of largest, most terrifying waves.  God knew how much I would need humor when God gave me my husband.  He is hard pressed to be serious, and in our conversations, I can be confident that at least 80 percent of the time, he is joking.  With a simple witty quip, he can stabilize me when I am struggling to maintain footing. We laugh more than anything else together, and it is balm to my soul.  I feel that sometimes, the choice to laugh is the choice to hold onto hope that the world is not crashing in on me at this very moment.  This moment will pass, and there will be joy.  For me, laughter screams “hope” when life looks quite dreary.

Lament, gratitude, and laughter:  These are vital parts of my survival kit for my topsy-turvy life.  It is okay to cry,  it is okay to count blessings, and it is okay to laugh.  God is here, on the bad weeks, when my body is so reactive that I can’t function.  God is here, on the good days, when I try to test the limits a bit and see what life could look like when I am healthy.  God is here, in the in between, when I am holding my breath and hoping that treatments will work.  God is here, when I am completely certain that He is NOT here because I can’t seem to find him anywhere.  And God is here, calming the waters of my soul, even when the waters of my life seem violent and difficult to navigate.

And because He is here, I can surf these waves and have some fun. I’m getting pretty good at it.

I almost forgot about you

I almost forgot about you

Once upon a time,  I suffered from a raging eating disorder.  It feels as though it were lifetimes ago, yet it has only been about five years.  A blink of an eye really.  Once upon a time,  I had simple (if you could ever call an eating disorder simple) eating disorder.  It was straightforward.  Anorexia Nervosa.  Restriction type only.

I kept it painfully simple.

My life was very simple: Do not eat.  Lose weight.

Even a starved brain could wrap itself around my restrictive lifestyle.  Eighteen years is a long time to starve, but I was single-minded, and I held on relentlessly to my disordered pursuit.  Many worked to keep me alive, and a couple times, I joined them in their efforts.

Then, in the most unlikely way,  even as few expected it,  I recovered.  I started eating.  I became comfortable with food.  I became comfortable with people, engaged in meaningful relationships with friends, my husband, I allowed my body to expand and stretch with pregnancy and (for the most part) embraced the changes.  These changes meant new life–new life inside of me, and a new life for me.  There was hope.  I finally became me, no longer a walking personification of anorexia.  I gained purpose, meaning, passion, energy, connection.

Over time,  life became more complicated.  I discovered that as I had recovered behaviorally, my body was still sick, even more sick than it had been before.  How could it be?  My body became a medical anomaly, unable to hold onto weight, unable to maintain consciousness, unable to do what bodies that are well-cared for are supposed to do.  Recovery did not look the way that I expected recovery  to look. I was a puzzle.  No one could figure me out.  “Simple” went out the window.

I remember going into the doctor in mid-November of 2014, two months after my youngest was born, sitting on her table, and with tears running down my face, begging for her to explain to me why my body was so sick when I was finally so “healthy.”  Testing began, diagnoses piled on,  and maintenance of eating disorder recovery took backseat.

Though I believed that it was vital to be vigilant to protect our recovery from the eating disorder, therapy work, nutrition work, and treatment focused on keeping me alive, discovering why my body was malfunctioning, and increasing my quality of life.  There was very little space to fine-tune recovery or challenge the thoughts that echoed my former ways of thinking.  When one is in recovery from decades of disordered eating, she needs to recognize that recovery is a marathon, not a sprint.  That marathon will take years.

As there are only 24 hours in a day,  I was unable to really give the marathon of prolonged recovery the attention that it deserved, so the seed of anorexia rested unassumingly in a pocket of my mind, not taking the forefront, but never too far from consciousness.  My illnesses made me thin, so the seed was satisfied enough to not have to make too many waves.  I hoped that it had disappeared, that I was miraculously cured of the anorexia, and that it would never bother me again, but I suspected that it was somewhere close, keeping a careful eye on things.

The illnesses accelerated.  My weight dropped lower, to a more dangerous level, and my doctors decided that a feeding tube would be the best medical intervention for my body as it was not absorbing or tolerating food.  The eating disorder was cornered.  When illness keeps you thin, you can pretend that you don’t really like it, that you would prefer to be a “healthy size,” and no one really challenges you, because, really, it’s not in your control anyway.   I even tricked myself into thinking that the skeletal place that I had sunken to was deplorable, unpleasant, and unwanted.   I did, however, deep down, feel most comfortable there, because, after all,  I spent almost 20 years intentionally living an emaciated existence.

Weight loss triggered those old blasted neuropathways: you remember, those really myelinated ones? The ones that I had traveled so many times before?  And though the weight loss was not intentional, it was still weight loss, and though it was the result of malfunctions of my body,  my brain had a difficult time distinguishing it from the weight loss of anorexia.

The first five weeks of the feeding tube were unexceptional.  Continual, around-the-clock feeding did not trigger too much anxiety about weight. I could maintain the illusion that my body would not really have to get larger.   About five weeks in, however, the words that I had dreaded hearing graced my ears:  “You definitely look like you’ve gained weight!” These words are meant to be complementary, usually coming from a place of love and compassion and desire for my well-being.  I try desperately to tell myself this, reminding myself of my near-death state only five weeks prior.  This is the goal.  Weight gain is the goal.  BUT I HATE WEIGHT GAIN.  And my knee-jerk reaction to the beautiful, kind, sweet, encouraging statement acknowledging healthy weight restoration was the urge to usher a swift left-hook to the nose.

No,  I did not punch anyone in the face, but in that moment, my world shifted.  I questioned the medical necessity of weight gain, feeding tubes, high calorie formulas, doctors in general, and I questioned the meaning of my life.  No joke.

Thus, in the past week,  I have observed my once docile, quiet eating disorder take the reigns of my brain and turn me into a raving mad-woman.  My dietician is thrilled that we finally get to talk about body image.  She is ecstatic that I get to sit in the discomfort of a body that seems to be quickly blowing up right under my nose.  “We finally get to do more work,”  she says.   Who needs more work?  I’m exhausted!!

Oh, I know that this needs to happen.  I know that my chances of physical healing and increased quality of life are higher when I am at a healthy weight.  I know that this is undoubtedly the path that I must travel to see at least a few of my dreams actualized.  (Remember that post earlier this week where a lamented the dreams that I lost?  This may be my shot at regaining some of those dreams. That can’t be bad!)…

And yet….

There is that familiar, unwanted voice that has all of the sudden gotten a bit louder.  That old “friend” has crawled out of the rafters in my mind and leapt onto center stage.

And I have a choice.  This is where the rubber meets the road.  This is where I have the chance to fully, completely, embrace recovery. Or I can hold on to that little bugger that has such an obnoxiously convincing voice.   So here I go.  Time to pick a side of the fence I’ve been inadvertently straddling for too long.

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

Sacred Waiting

Sacred Waiting

I wait beside the phone.   I wait for four different medical specialists to call. I wait for more specific diagnosis, prognosis, and treatment plan. I wait for scans, MRI’s, blood tests, and assessments. I wait for the new prescription to come in. I wait for the current prescriptions to start helping, the side-affects to wear off, and the pain to subside. I wait for my heart rate to come up or go down, or my oxygen saturation to go up. I wait for my fever to go down. I wait. Do I wait in vain? I often wonder.

 

Draw nigh, Draw nigh, Emmanuel

And Ransom captive Israel

That mourns in lowly exile here

Until the Son of God appear…(J. M. Neale, 1851)

 

The people of Israel were always waiting, always hoping. Their hearts were longing, and they held to traditions to remind them of the Savior, the King, for which they were longing. They did not choose to distract, lest they forget their longing. Our church universal is in a similar situation to the people of Israel at the end of the Old Testament. They were in exile, waiting and hoping for the coming Messiah. They didn’t entirely understand how it would work, or how He would come, but they held to what they knew of Him and His work in the past, anticipating and hoping for His future coming. We live in the tension and the glory of the kingdom that is already present on earth through the birth, death, and resurrection of Jesus Christ and the deposit of the Holy Spirit, and the longing for the kingdom that is to come, where God rights all wrongs and wipes every tear away from every eye. In the Spirit of the Israelites, we sing in minor key, “Death’s dark shadows put to flight” in one of the most popular advent hymns in the Christian church, this verse coined in Hymns, Ancient and Modern, in 1861.

 

My tendency, and I believe that human tendency, is to try to distract from discomfort and agony when there appears to be no present solution to the problem. When our resources are sapped, and we can do nothing but wait for answers or solutions, we try to ignore the pain and longing. This response sometimes helps us to survive. Chronic illness sets the stage for a lifestyle of waiting. We wait for explanations for confusing symptoms. When diagnoses are provided, we wait for solutions, if there are solutions. If there are no solutions, we suffer through the bad days and wait for days with decreased pain. We long, we desperately long, to feel well enough to function. We wait for a miracle, or we choose to focus elsewhere.

 

Waiting for something limited to this earth—like healing or the right diagnosis for me, often feels frantic and frenzied, filled with fear and anxiety. Waiting on the Lord, the waiting of Advent, is a joyful, hopeful, expectant, pregnant, and holy longing that knows and trusts that its object will ultimately come to fruition. Maybe this is a time where we redirect our energies to this holy anticipation of the Savior, the Kingdom, and His inextinguishable light. Not one of these promises can be rivaled. They cannot be undermined.

 

So this waiting that is found in my illness…maybe it is a sacred space. Maybe it is a thin point in our mortal world of flesh and blood where we can see the Advent kind of waiting more clearly. As I wait for the uncertain, I am reminded of the undeniable promises for which I wait. This waiting hurts, and it rubs me raw. My raw soul longs for a salve that is not always provided in medical answers and physical healing. It longs for the gentle, loving touch of the Savior, the Redeemer, the One who will right all wrongs and ultimately heal all hurts. My raw soul longs for the coming kingdom, and in a world broken and oozing with longing, we sing the minor songs of Advent together: “Veni, Veni, Emmanuel.” We may or may not know what we are really truly waiting for, but we are all waiting. I pray that our waiting may not be in vain, but may be a shadow-glimpse of the true illumination of Advent-waiting.