suffering

I am writing a book.

I recently announced on Instagram I have started writing my first book. I waited for months to finally announce it publicly, trying the terror of uttering the words, "I'm writing a book" on for size with my family and friends first. For the record, both saying and writing the words still feels scary.

Suffering has been a larger part of my life than I ever could have imagined. As most of you know, I became ill at 2o years old as a junior in college. Though illness has not been the only thing in my life since then, it has dramatically shaped and formed my experience for nearly nine years. 

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A story about illness sounds depressing, right? But a story about the multiplying joy of Hope in the mire of suffering—that’s a story I cannot keep to myself.

In a culture allergic to grief, we are often loathe to find hope articulated honestly enough to fit the contours of our private suffering. But the longer I live with pain and the comfort of knowing Jesus, the more I know I have to share my story as boldly as I am able. 

I hope to weave together three important narratives to empower others to experience joy in their own suffering: 

  1. My experience of chronic illness illustrates the power of relationships to mediate meaning and hope in the midst of suffering. 
  2. As a therapist, I find my experience of transformative relationships echoed in the insights of interpersonal neurobiology: our brains thrive most in empathic, secure relationships, so much so that our brains retain the ability to heal from trauma and pain in response to relational attunement. 
  3. My story and the insights of interpersonal neurobiology are ultimately brushstrokes of the larger picture of God's mysterious love toward humanity in the person of Jesus Christ. Within God's Story, our stories of suffering gain unparalleled meaning and life-changing hope. 

Suffering can catalyze joy. And it happens through relationships. I hope and pray my story touches your own, bringing possibility alongside your great sorrow. 

Realistically, writing a book on suffering while continuing to suffer with illness and pain means this book could take a long time to write. But I will press on. I'm closer to the beginning than end of this process, but I am glad to have started and to be including you.

Your pain, whatever its source, moves me. And the joy of Christ propels me. I pray we can find and dwell in Joy, and that my writing in some small way might draw us further into the love of the God who is coming again to make all things new.

When All is Well, and It Hurts.

I feel better than I have felt in eight years.

Please don't miss the gravity of this simple statement.

I am at the closest place to remission I have ever been in the eight years I have lived with autoimmune disease, and it is a simultaneously sacred and scary place.

Since graduating from my master's program in May I have been thoroughly soaking up the wonder of being well. My husband and in-laws generously gave me an inflatable standup paddleboard as my graduation gift, something I have lusted after for years, and I've since spent most of my free days paddling on open waters, dwelling in the sun and fresh air and capacity of an unencumbered body.

I have been experiencing a season of nearly unparalleled freedom, and I have embraced it with my entire heart.

Embracing the joy of today comes with a willingness to accept the grief of tomorrow. Because of some life decisions my husband and I are making, I know this season of wellness could end in a couple months. This season of wellness is quite possibly limited. For several weeks I have chosen to dwell in the joy of what is rather than the impending anguish of what is to come. There is wisdom there, and I am proud I have allowed myself the space to dwell in the present. And yet, as I drove across town last night, I remembered the soft tap of my soul and the Lord: "you need space for sadness, too." Praying, the question I knew I needed to sit with was, "What do you need to grieve?"

What do you need to grieve?

I can't say I completely know the answer to my question. Through attending to my story through the tool of the Enneagram, I know I need to grieve several places where I historically felt unseen and misunderstood, and where my emotional world was invalidated from childhood through the present. I also know I need to grieve some painful experiences from graduate school.

But, today as I stepped on the bathroom scale for the first time in a month and realized I had lost ten pounds, I stopped. The ten pounds in many senses does not matter, but what it symbolizes does. Ten pounds symbolizes activity, life, movement, and change--an effortless physical freedom I have not known since I was a 21 year old.

For a moment I danced my naked body, rejoicing at what I saw in the mirror: stronger legs and arms, tone where tone has been lacking, the curve and shape of my former self. I danced to the thrilling reward of days in sunshine with a moving body and an uninhibited heart. 

But plans. Planning means choosing the substance of our days. And in the late summer and early fall, that means choosing the probability of a smaller, more holistically-arduous existence. This is a hard concept to relate with or without details (some of which I, frankly, am just not ready to share). Outside of being me, it is easy for others to simply think that since I cannot know what the future holds, I should only hold out hope for it being better than I imagine. But I do know my body, and I do know how, like a well-oiled machine, my body needs particular ingredients in order to thrive. Take one of those ingredients away for even a week, and it screams in pain and refuses to move without great struggle. Thus, I hold out hope for the potentiality of a better future than I can imagine, and I live in the reality of knowing impending pain is both possible and probable. 

I will not borrow trouble, but I also will listen to the voice of the Lord telling me to attend to the grief in my heart. I will hope. I will thrive. I will glide across the lakes of Colorado with joy illuminating my very presence. And I will bring stillness to my heart, strengthening my soul for whatever lies ahead. 

When all is well, and it hurts, I simply have to be present to it all. The joy of my season in life right now is so expansive it almost physically hurts at times. And the sorrow of now in relation to where I have been and where I might be headed hurts as well. But if there is anything the past eight years of dwelling with God in sickness has taught me, it is that joy and sorrow are necessary friends. One cannot survive without the other, and I will accommodate them both.

Radio Interview on "The Truth About Living with an Invisible Illness"

Today my radio interview with Bill Feltner on "His People" was broadcast on the Pilgrim Radio Network across five states and online. It was such a joy to share my story on a new platform. I'm learning that public speaking is a place where my love for the gospel, hope in suffering, and desire for others to know that Hope can come out in an incredibly powerful and unique way. Writing will always be my first love, but speaking is certainly on the list. I'm now actively praying for more speaking opportunities to share my paradoxical story of how God can make suffering a place of joy. (And if you want to discuss a speaking opportunity you can fill out a request form here!)

Today's interview was on my Christianity Today article entitled, "The Truth About Living with an Invisible Illness." In the interview Bill asked questions about my "invisible" disease (Ankylosing Spondylitis), what life has been like since I got sick, how I've experienced stigma around my illness (but also beautiful community!), and what it's like to be a chronically ill graduate student. Here's the audio of the broadcast:

Hello World! Chronic Illness Video Blog #1

Alright, world. I've felt more than a little inspired in the last few days wrestling with integration as a counselor, writer, and sufferer. And I have decided it's time to take yet another step in making my invisible illness visible to the world. Here's my first ever Video Blog (Vlog? Is that archaic/lame?), inspired by the hilarious Lindsey Feldpausch. God's put a calling on my life to share my hard and beautiful story of physical suffering, and this video is a step toward the goal of helping others come out of their own silence and invisibility into the embrace of God and his Body. Here I am--raw and unedited. :)

When Pain Makes You Feel Joy--capturing the small opportunities.

This morning has been rough for me physically. Every day I experience "morning stiffness" upon waking up, and some days the stiffness just doesn't go away. Today I had an 8am class, so it was pretty painful to make it to school and sit in a non-padded chair through the three hour lecture. I never know when my morning stiffness is going to last all day, so I often push past the pain and try not to dwell on it, thinking it will likely subside soon. But sometimes it lingers, and the pain can be so intense that it brings small tears to my eyes. Not necessarily because I'm overwhelmingly sad, but because it really hurts. 

Being in intense pain while listening to a lecture is hard work. And I realized this morning that when I recognize the truth that I am sacrificing my personal comfort for the sake of learning to better help others feel the comfort and hope of God's coming Kingdom, great joy enters into my present experience of pain. Though it's sometimes healthier for me to stay home, there are times when I can push through pain. But in either way that I cope, it is imperative that I stay mindful of my experience. When I am mindful in the moment of the fact that it is truly difficult to be a student with chronic pain, I am presented with an opportunity to respect myself and revel in the calling God has put on my life. It's a godward moment, a space in my heart to submit my experience of pain to God knowing that he wants to use it for the good of others. Small moments like these when I'm wincing in pain are sometimes sacred spaces where sadness over my authentically hard experience mingles with the joy of knowing God is working to redeem pain in all its forms--and that I get to help others know this coming redemption. It is by no means an invalidation of my sadness but rather an active and mindful experience of it in the presence of a God who cares about it intimately.

So as I sit here typing and feeling rather woozy, I am smiling inside even as I wince and close my eyes at the world that's beginning to spin around me because of the pain. But I write even now because I so want you to know that joy can enter into our sadness when we let ourselves experience it. It doesn't always. It won't always come. And we don't have to dutifully force ourselves to feel it. But it can come. And It will. I truly believe that a gift of suffering with chronic pain is that through it God often enlarges our capacity to feel joy. You might feel like that is the farthest thing from the truth right now, and I respect you for feeling that. I've felt that way too. But I also long for you to know and experience the truth that God deeply cares about your pain, so much so that he sent his  Son to live in a broken human body, experiencing the worst physical pain imaginable in addition to the existential weight of your and my angst, so that he could redeem it and banish it from the world forever. Jesus knows my pain and your pain and he conquered it. When he comes again, our pain will end forever. And in the meantime, the very Spirit that raised Jesus from the dead can live in our hearts, tenderly helping us face our pain and find joy in and despite it

And that's part of the beauty of these sacred, pain-filled moments--they exist because the Spirit of God lives in me. My pain-filled moments can be invaded by joy because they are an opportunity to commune with the Living God. This is somewhat heady, existential stuff, but it's also the stuff that faith is made of. So, if you have the mental energy, wrestle with it, wrestle with me and with God by reflecting on the following verses:

Jesus...”made himself nothing, taking the form of a servant, being born in the likeness of men. And being found in human form he humbled himself by becoming obedient even to the point of death, even death on a cross.”
— Philippians 2:7-8
“...I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him...that I may know him and THE POWER OF HIS RESURRECTION, and may share in his sufferings...[that] I may attain the resurrection from the dead.”
— Philippians 3:8-9a, 10a, 11b
Therefore, my beloved brothers (and sisters), be steadfast, immovable, always abounding in the work of the Lord, knowing that
IN the Lord YOUR LABOR IS NOT IN VAIN.”
— 1 Corinthians 15: 58

In the Lord our laboring in these small, pain-filled moments is not in vain. Sometimes pain can make us feel joy, because in it we can know the suffering love of Jesus and the real power of his resurrection. And, friends, there is no greater joy than beholding the love of God in Christ.

Turning over

Have you ever been afraid that you can't stand on your own? Last night I woke up in the middle of the night, needing the bathroom, and instead of easily getting up, I felt stuck in place. My joints had become so stiff in the hours of sleep that I wasn't sure I could even turn myself over to crawl out of bed. I'm used to pain in the middle of the night, but I've never had to even think about waking my spouse to help me out of bed. But last night I did. Luckily, with much struggle and some groaning, I was able to to get up by myself. But the stiffness was startling. "Go back to sleep. You will be ok," I whispered to myself. This morning I woke up to the same feeling, to stiff joints screaming in pain, taunting me to stay immobile. I'm not a morning person in general (Morning KJ is "grouchy KJ"--ask my husband!), but I will say waking up to intense pain is just a difficult way to start the day. Will I feel like this all day? Is my disease getting worse? When holding my coffee cup is painful and turning to set it on the side table elicits a deep groan, it's hard to not feel discouraged about the approaching hours and coming week. But in letting myself just "be," to simply sit and wait out the siren-screeching stiffness in my body, my mind and heart can find the space to be at peace. It's been a painful morning (like most of my mornings x10, dammnit!) but I feel peace. Why? I'm loved by God. No matter if I can make it to work today or do any school work, I am loved. Knowing I am loved by God gives me space to accept today's pain and its intrusion in my life. 

Beginnings

Perfection, in a Christian sense, means becoming mature enough to give ourselves to others.
— Kathleen Norris in Amazing Grace

Well, I'm starting a blog. I've wanted to do this for a long time, but I've also been afraid of doing this for long time. I feel compelled to write about my experience living with physical suffering, but it's a subject that is hard to understand, somewhat taboo, and incredibly personal. Will you understand my words? Will you judge me as someone who has let "sickness become her identity"? Will I be making public that which should remain private? These have been the questions I've worried over, keeping me from sharing my story. But, even with all the questions, I still feel compelled to write--for you, women and men suffering with painful diseases and your friends and loved ones who hurt with you, and for me. Writing is where I feel closest to God and most myself. It's a process where acceptance and peace meet over the painful realities of life. In order for me to suffer well, I need to write. I need to wrestle and search hard after the truth in my pain.

But as an idealist (my overly positive way of not describing myself as a perfectionist!) I love this process but can get stuck hiding my words until they reach some ridiculous level of perfection. And in order to really keep up a blog (while in graduate school, while living with a disease...), this just won't be possible! I think blogging will be a good practice in true perfection and freedom. Kathleen Norris describes perfection as being "able to make a gift of oneself." So instead of only reaching for the perfect syntax, adjectives, and quotes to describe my experience, I hope to focus on making a gift of myself to others. So here are my words, however imperfect they may be on any given day--my words, my soul, my bad and good experiences--for you and for me. My words are my offering, my attempt to hold onto truth while the waves of sickness crash around me. So, hurting friends, welcome. Welcome to a place of honesty and remembrance of the truth that

We have this as a sure and steadfast anchor of the soul, a hope...[that] if we have been united with him in a death like his, we shall certainly be united with him in a resurrection like his.
— Hebrews 6:19a & Romans 6:5, ESV