Chronic Illness · Chronic Pain · Grad School · Mayo Clinic · Mental Health · Personal · Recovery

My Lent Life: Uncertain, but Hopeful, Wanderings

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[image description: A simple pair of leaves surrounding a handwritten quote written alternately in lowercase cursive script and uppercase block print: “If you get tired, learn to rest, not to quit.” Source.]
“God, what do you want me to give up this Lent?”

I said this as a woman who easily has habits in the double digits that could be cut down, and just as many positive actions that could be taken up. (I’m always working on my discipline, but aren’t we all horribly and delightfully aware of our own limitations when we try to push past our old bounds, especially at this time of year?). I was prepared for the answer, but not the unexpected and still unfolding consequences of obeying God’s challenge to me this Lenten season.

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Last Lent, I almost felt like I had nothing to give up because of just how little I had at that point. I had no idea what I was going to be able to do with my life because of my body’s seemingly constant shutdown state. I was scared. I felt hopelessly lost. I wondered if any medical professional was ever going to both take me seriously and be able to help me in substantial ways because it always felt like one or the other (or sometimes neither). I worried about my future family – the spouse who would have to exhibit incredible patience, the kids who would wish for a different, more able-bodied parent than I could be – and my ability to grow into the partner and mother I wanted to become. There were spiritual highs and lows in the midst of a seemingly endless valley. I was waiting on God’s every word, and God and I were closer than ever because of just how few distractions there were, as well as the depth of God’s sweet and life-changing love and care for me being revealed in new ways on a daily, even hourly, basis. I had nothing to lose and everything to gain. It was a terrible, terrifying, trust-required-every-minute, hauntingly beautiful state.

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Then, within the span of 2 months (more specifically, 20 days of being underground at the Mayo Clinic Pain Rehabilitation Center from 8 AM-4:30 PM with new friends who then became my family), my life flipped 180 degrees. I couldn’t have dreamed for such a shift; I had stopped even daring to do so. I didn’t lose anything in that time; instead, I gained everything, even things I hadn’t realized I had lost. I’m now 7 months out of the PRC and my check-in survey numbers get better and better. My pain catastrophizing, pain interference, and depression index are down; my perceived control of life events and health perception are up. Amazingly enough, they actually look like the results of a “normal” (or barely affected by illness) 23-year-old female, not someone who lives with the severe chronic pains and symptoms that I have for almost a decade. I gained the ability to go to the school that I had gotten into by God’s grace alone – full-time instead of part-time or not at all. The feeling of being in control rather than “having pain drive the bus,” as the wise practitioners at Mayo challenged us to move away from – by hook or by crook. The parts of my personality I hadn’t realized I had lost – my childlike love of laughter, confident and motherly care of others around me, and unflappable optimism, to name just a few. Learning to see myself in a self-compassionate and hopeful light more often than not. My fingers on piano keys again. Belief in my ability to persist in long-term intellectual, physical, emotional, and spiritual challenges without throwing in the towel or talking myself into a corner of self-hatred. The proud moment of standing through an entire choir concert, and then repeating that feat two other times that busy day. Setting personal records at the gym and getting to the point where my fellow weightlifters give me “the nod” of recognition rather than quizzical expressions that show that they’ve sniffed me out as an imposter. I could go on, but we all have more pressing things to do.

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Because of these amazing leaps and bounds that God, my team of professionals, family, friends, online supporters, and I have made in my life, this Lenten season, by many standards, could not be more different for me from last year’s desperate desert cries – for better and for worse. But God isn’t done with me yet, and God always has a plan for my “for better and for worse” life happenings. Why was I surprised?

“Give up your defensive attitude for Lent, Emmie.” 

“Easy enough, God. I’ve longed to be an easier person with whom to have conversations involving constructive critiques and differences of opinions. I’ll use this time to continue growing into the woman I want to become – the woman I know you want me to become.”

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[image description: Emmie, the blogger, standing with her back to the camera in front of hundreds of paper cranes on strings. She is wearing a white dress and her bird tattoo is visible].
On the evening of Ash Wednesday, God threw a wrench in my “easy” Lenten fast. I was able to hear God’s words of challenge and encouragement because I spent the day barely able to move due to pain and exhaustion. It was a painful, but important, flashback to the season of forced Sabbath, when I learned the rich value of seeing myself as a human being rather than a human doing – when I learned to see myself as the beloved, as God sees me – the person who could never, ever lose or gain more of God’s love, despite all of my strivings.

“I also want you to give up the defensive attitude that you’ve used to build walls around you to ‘protect yourself’ from deeper intimacy with others – and, most importantly, with Me.”

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How did I possibly get here, with so many walls surrounding me as if I were a princess made of glass, too delicate for any hands to hold in all its complexity? I thought I was the queen of authenticity. Brené Brown is my grown-up crush. I thought I was surrounded by intimacy, never allowed to be lonely because of how ridiculously blessed God had made me in familial and platonic love. I thought I was listening for God’s every word. I thought I was giving myself space to be a human being – to rest when I needed and only to push when I really could. I thought. But rather than being known, I was determined to be inspirational, and I accidentally acted on the impression that they were mutually exclusive because if anyone ever really got to know the extent of my still messy self, they would lose their gilded image of me. (If you don’t know this about me, I have trouble with compliments sometimes because of years of abusive friendships. I get nervous. I’m working on trusting others. It’s the process of a lifetime, let me tell you. Ask me about it sometime because I’m beginning to realize more and more that I have quite the life story – the kind that shows God’s redemptive love in the magnificently bright glory that it deserves). Being “inspirational” gave, and still gives me, a sense of purpose in the midst of otherwise seemingly purposeless suffering. But being known is a need of every human being at their core, and I’ve been acting like I couldn’t have both. I can set up double standards for myself, like encouraging others to be more real and yet holding back on details about myself because I’m still learning how to live my best life despite my symptoms.

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I can be a black and white thinker, and Mayo Clinic kicked my ass into gear in a way that I’m still figuring out how to make more gray for my own sake of assimilation and balance. They taught us – gratefully so – to focus less and less on our symptoms to the point of not talking about them at all. This gave me the ability to spend the majority of my conversations talking about other, better things once again. Fun things. Joyful things. Interesting, more others-focused things. But I’m a person with many layers. While I’d no longer wear a shirt with my diagnosis on it, my symptoms are a part of my existence – and to be known, I need to be able to speak without silencing myself or tying a bow on top of every difficult thing I share, not letting others sit with me in a moment of grief, frustration, and numbness because I just want to move on and “let them off the hook.”

How did I get here? The list is too long to cover, now that I’ve been listening to God, begging for answers, crying out in the general direction of where I assume heaven is, and sitting with myself, trying to figure out how to open up again to the point where I let others who haven’t known me long sit with me, too. But all I know is that I can’t stay here. Instead of my own advocate, I’ve become my own drill sergeant. I told myself I was listening carefully for that still small voice, but I had begun to mute it with schoolwork and other responsibilities for dreams that I’ve been running to keep up with. I don’t need to run more; I need to sit more (metaphorically and physically). My body is fatigued. I need to re-evaluate and talk to myself like my loved ones and God talk to me. Yes, they push me to grow, to chase my future and present full speed ahead, but they do it with gentleness, support, and love. When did that escape my self-talk? Was it ever fully there in the first place?

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I don’t know what this will look like to take more time to grow in silence and in grace and to let my defensiveness go this Lenten season – to admit my weakness as I glorify God for my ever-growing strength. Maybe it’ll look like playing more piano. Writing more poetry. Reading more of my Bible. Boldly expecting far more in my prayers. Sitting in Sabbath rest more often. Getting more cups of tea to nourish budding friendships, and actually letting the friend across the table see me in my wholeness as I actively refuse the strong impulse to tie a bow on my troubles as soon as I talk about them, instantly moving on without a moment for them to enter into this precious liminal space with me. Letting more blank space into my daily schedule to leave room for more serendipity and God-breathed actions. All I know is that I’m not going backwards, for better and for worse. I won’t be able to stop entirely like I had to last November-June. I have a full year of internships starting this May. I will need to learn how to rest while still in high-speed motion.

I have no idea where I’m going spiritually and emotionally, though I know some of the steps I’ll be taking physically. But I trust the God Who walks with me, and I’m coming to the conclusion that I’d walk to the ends of the earth with and for this God, so I owe it to myself to nurture the body, mind, and spirit of the body I’m walking in during this life of mine.

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“Be still, and know that I am God…” – Psalm 46:10A (NLT)

“Give up yourself, and you will find your real self. Lose your life and you will save it.  Submit to death, death of your ambitions and favourite wishes every day and death of your whole body in the end: submit with every fibre of your being, and you will find eternal life. Keep back nothing. Nothing that you have not given away will be really yours.  Nothing in you that has not died will ever be raised from the dead. Look for yourself, and you will find in the long run only hatred, loneliness, despair, rage, ruin, and decay. But look for Christ and you will find Him, and with Him everything else thrown in.” – C. S. Lewis

“Our worst days are never so bad that you are beyond the reach of God’s grace. And your best days are never so good that you are beyond the need of God’s grace.” – Jerry Bridges

“I knew that if I allowed fear to overtake me, my journey was doomed. Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me.” – Cheryl Strayed

“Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God – this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is – his good, pleasing, and perfect will.” – Romans 12:1-2 (NIV)

“I have a great need for Christ: I have a great Christ for my need.” – Corey M. K. Hughes

“Breathe, heart, breathe –
beat, lungs, beat –

every moment that you
take a risk of any kind,
you are in danger
of being shut down –

however –

I, more than ever, before,
believe that the risk
of not taking the risk
is more costly than
you could ever
imagine.” – risky by yours truly

“Ubi caritas et amor, Deus ibi est.” – Ancient Gregorian chant

 

One thought on “My Lent Life: Uncertain, but Hopeful, Wanderings

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