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.

With the Mind in the Heart

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.
— Viktor Frankl

This week has been about holding space for myself, and helping others do the same.

The space between activation and response is less about right, wrong, or forward than about softening, breathing, and being.

For a while I have been incorporating breath prayer into my life: breathe in, "Lord," breathe out, "have mercy."

At first the phrase, "Lord, have mercy" did not resonate with me. The classic breath prayer of centuries of the faithful did not seem personal enough for me. (I do have a penchant toward wanting be original.) But lacking anything better, I just began to pray.

In through my nose, out through my mouth.

Lord,

have mercy.

After months, the words mean more than I could have imagined, more than they could have meant without the physical alignment of breath and space and the cumulative moments of my stress and God's nearness. Even as a novice in the discipline of breath prayer, I am being strengthened in my inner being. (Ephesians 3:16)

I'm coming home to my breath. I'm coming home to God.

I marvel at the beauty that God created man to need breath. As a doctor shared with me this week, a human's most essential need is oxygen. We can live for a time without water or food, but not without breath. From breath we were created (Genesis 2:7), and the end of breath is death.

I remember wondering long ago how Scripture's teaching to "pray without ceasing" was attainable. (1 Thessalonians 5:17, ESV) It felt like an impossibility, an existence only accessible to truly holy souls on a plane of spirituality much higher than my own. 

But what if breath is prayer?

What if the very resource the body needs most to regulate life is the same resource that can connect our souls to God?

I pray as I breathe, drawing from the resource of my union with Jesus. In moments of anxiety, "Lord, have mercy." When sobered by the despair of a client, "Lord, have mercy." In the tiny spaces of inactivity, when I could look at my phone to fill the empty, I am beginning instead to reconnect to my breath, "Lord, have mercy." 

God's immanence and transcendence meet in the hum of respiration. Mind and heart find their union in the flow of the body's most essential function. I become me when I breathe.

At any moment in the day I can reconnect to my breath, and in so doing, reconnect to the fact of my secure union with Jesus Christ. Even when subconscious, my breath is prayer. I pray without ceasing, because I am.

And as I attune to the expansion and contraction of lung and chest, I receive the opportunity to expand from a constricted way of living. Breath allows me to offer my truest self to the world. As I receive the living presence of God, I can extend my grounded presence to others.

What if there is more space in your life for freedom and growth than you imagined? What if the space between stimulus and response is breath? 

The heart of the matter is: Stand with reverence before God,
with the mind in the heart, and strive toward Him with longing.
— St. Theophan

For one simple primer on beginning the spiritual discipline of breath prayer, click here.

I have calmed and quieted my soul.

Kathleen Norris writes, “When I stop running from my life, I can return to living it, willing to be present again, in the present moment.” (p. 18, Acedia & me)

Alone in a tunnel of noise, I called out to God. Surrounded by the cacophony of the MRI machine, I prayed. Though I had mentally distanced myself from my illness for months, here I was, still intimately in need of God’s presence in sickness. 

Even eight years into this mess of sickness, I struggle to know where to place illness in relation to myself. I can stop describing it, try to focus my energy elsewhere, and quietly move forward. Yet, it’s part of the atoms that make up my life.

Some spiritual guides of mine and my husband’s have written, “…whatever I disown winds up controlling me.” (Rich Plass & Jim Cofield)

As much as I would like to set illness to the side, it is part of my life.

There is a fine line between being more than your suffering and disowning your story. 

Just as the screeches and beeps of an MRI overwhelm, we are each engulfed in a world of noise.

After a long period of silence publicly on my blog, it has been difficult to find words. At first in the past several months I wanted to distance myself from the noise of the writing world, in silence to say that I didn’t have to speak. It was liberating to acknowledge I have a voice but that I can choose to use it when I want.

But over time, not writing did me a disservice. Writing has long been a means of my integration—a process that brings perspective. Writing grounds my place in this liminal life. In words, I can hold my life with open hands before God. Without the discipline of writing, though, I tend to listen to noise instead of focusing on what matters. 

As I come out of a long period of quiet, I’m reminded of the words of the Psalmist:

O LORD, my heart is not lifted up;
my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.
O Israel, hope in the LORD
from this time forth and forevermore.
— Psalm 131

 

I’ve calmed and quieted my soul. And in the quiet, I’ve learned I need to speak, not to be heard, but to walk the fine line of owning my story. 

How do you own your story? None of us can do it alone, and none of us can do it without work. Perhaps what we need most is a way to listen, discipline that parses the noise from the substance, that allows us to see our one, real life and God as its good Author.

So I will listen, and I will write.

How To Be a Badass Despite Chronic Pain

I'm gonna let you in on one of my best tricks for feeling like a complete badass. It's a bit quirky, so bear with me. (As my closest friends know, I am nothing if not quirky.)

Here's what I do when it feels like the world is conspiring against me to keep me discouraged, lonely, and hurting: I paint my nails red.

Whenever I feel powerless in my circumstances, I whip out a bottle of my favorite red nail polish and get to work. When my strength feels sucked dry by manipulative relationships, I put on red paint in an act of silent defiance. When joint pain just will not quit, I look at my red nails and say, "Pain, you don't own me!"

Red nails remind me there are some things in this hard life I can control. Red nails help me remember I am not powerless. Red nails whisper to my aching heart, "You matter. You are loved. And you are worth the effort to have badass looking nails!"

As 100% crazy as it may sound, red nails have become a visual reminder to my heart that I am free in Christ. 

Red nails tell me no one owns me but Jesus, and nothing controls me but His Love.

I might be in so much pain it's hard to not be a complete bitch at moments (Sorry, hubby!), but my red nails remind me I don't have to be controlled by any circumstance or person. The act of painting my nails red is an act of choosing to live by the essential truth that I am separate from my pain and circumstances.

Though pain and relationships can be frustrating, they can never separate me from Christ.

You might wonder how simple red nail polish could feel like such a profound declaration of freedom. It's partly because I'm obsessed with making meaning out of the tiniest of things. But it's also because I've been painting my nails red in an act of personal defiance for an entire decade. Ten years ago I was in a pretty controlling dating relationship, a relationship that was sucking my life dry of joy. My boyfriend at the time hated red nails. (I think his exact words were, "Those look like prostitute nails.") So I started painting my nails red whenever I felt controlled and sucked dry in my relationship as a personal little F U to my boyfriend. And it stuck! (Thankfully, I ended that relationship soon after the nail-painting started. And, in case you are dying to know, my husband loves my red nails. That would have been a deal-breaker...) 

What started as a miniature act of defiance became a means by which I could receive the grace and freedom of belonging to God. 

Things have been tough lately. Sickness and some crappy doctors seem to be in cahoots, trying to chain me to an attitude of powerlessness. But that's simply not where I have to live as a child of God. I belong to the God who hears my prayers, who will vindicate my life, and deliver me from every trouble (Psalm 54: 1, 7). I am united to Jesus, who is faithful and will establish and guard me from all evil, including mean doctors and the despair of chronic illness. (2 Thessalonians 3:3) I belong to a God who gives victory over the experience of brokenness and death (1 Corinthians 15:55-56). 

Ultimately, when I paint my nails red, I am doing the defiant, courageous work of rejoicing in my suffering:

 "knowing that suffering produces endurance,

and endurance produces character,

and character produces hope,

and hope does not put us to shame,

because God's love has been poured into our hearts through the Holy Spirit who has been given to us." (Romans 5:3-5) 

When I paint my nails and then look at their glorious redness all week long, I am definitively saying, "I will not live in despair because of my suffering. I can rejoice, even in this, because I have the love of God in my heart, ready to experience and enjoy." And endurance produces character. And character gives me hope. And I am not ashamed in this body of sickness, because the God of the universe has given me his love.

So, friend, paint your nails red. Take some time with me today to defy disease, death, and brokenness, and remember the truth that we are not controlled by the pain we experience. 

In the day of trouble the Lord delivers him;
the Lord protects him and keeps him alive;
he is called blessed in the land...
The Lord sustains him on his sickbed;
in his illness you restore him to full health.
— Psalm 41:2-3

Here's my current favorite red nail polish. It's a super bright red-orange. Click to check it out! You can purchase it at Target or Walgreens. I like to pair it with a gel top-coat to add to the shine and longevity.

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. :)

The Truth About Living with an Invisible Illness--on Christianity Today

Writing over at Christianity Today's Her.meneutics site today. Here is an excerpt of my article:

I forced myself to go church because I knew it’d be good for me, for my soul. But now I can’t stop fidgeting from the pain. Why aren’t these pews padded? My husband gently rubs my neck as I roll out my stiff ankles. My shuffling around is distracting the people sitting behind me.

I hadn’t left the house all weekend—too tired, too dizzy, too uncomfortable to do much at all. But I know my body needs God and his body. I want to be in his house to feel his presence in my pain.

Read the rest of this article on Christianity Today.


How I Learned to Love Myself as a Highly Sensitive Person

Sitting in the car in traffic with my husband is often excruciating. Suddenly the radio is just the slightest bit too loud and the air is blowing too hard. Oh wait, now it’s hot. I’m hot and I must get out of this inferno, stat. I’m simultaneously about to cuss and getting super nauseated, so I stick my head out of the window. While I’m shaking my head out the window like a mannerless dog, I remember the fight I encountered earlier in the day…And I feel so sad. I stop talking to my spouse and just think. Think, think, think about how sad it is that they were fighting and how I would have felt if I was them. And then my husband says something to me and I snap, like a teenager would verbally bitch-slap their mom after being asked for the thirtieth time, “When will you be home later, dear?”

And then I realize…oh, I am feeling really overstimulated. And I breathe. And occasionally alternately squeeze both of my arms like I’m giving myself tiny little repeated hugs, because my therapist told me it would help me calm down. And then I start feeling sane again and less like the mannerless dog and bitch-slapping teenager that abducted my heart for a moment.

Read the rest of this post here on Introvert, Dear!

This article was originally published on The Huffington Post

and was republished on Introvert, Dear on July 5, 2016.

To the Friends of those with Chronic Illnesses: You are a Gift

I’m convinced that authentic soul friendship is hard thing to do at any age and in any season. As a chronically ill young woman, it’s easy to think it’s an illness problem. But my hunch is that building and maintaining deep friendships is a task almost all humans struggle with on some level. We were created for connection but often don’t know how to accomplish what we seek. From their earliest weeks and months babies recognize the voice of their mother and mimic the facial expressions of the people around them. We are hard-wired for relationship.

But relationship eludes us. Connection is never quite what we long for. Our moments of deep connection are brilliant but fleeting, moments instead of constants in our lives. First Aid Kit describes the yearning for this type of beauty to stay constant in their title track “Stay Gold”:

But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stay

What if our hard work ends in despair?
What if the road won’t take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved’s not enough?
What if I fall and can’t bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold
— First Aid Kit, "Stay Gold"

In the past couple weeks I interviewed a few of my friends about what it’s like to be a friend to someone with a chronic illness. As I reflected on their words and friendship more generally, I realized that friendship is difficult for all of us humans. We’re like moths to a flame, drawn to the glow of intimacy. But we also know that fire burns. The small pains of friendship and the larger wounds of rejection and abandonment keep us from moving toward one another.

The presence of chronic illness in a friendship can make our frustrations, pains, and wounds more noticeable. So today, I write for the friends of those with chronic illness, the caregivers, the patient souls who feel simultaneously disappointed by our fickleness and drawn to us in love. The chronic illness community too often gives you a bad rap, focusing on your flaws instead of your love. Not today, my friends. Today, you are my teachers.

So what’s it like to be a friend to someone who is chronically ill?

On Acceptance:

Bess shared that the hardest thing about being a friend to someone who is chronically ill has been accepting she is not going to understand what I go through completely. Friends want to understand each other. But there is an element to chronic illness someone can never grasp unless they have been chronically ill. Even my husband will never fully understand what my experience is like. This fact can be incredibly isolating for both the sick individual and our friends. However, when both parties in a relationship accept our different experiences for what they are, our differences can become places of respect and cherishing rather than only frustration and pain. Friends, as a chronically ill woman I release you from the unfair expectation that you must understand my experience of being sick.

On Fixing and the Discomfort of Seeing Us Sick:

Bess also shared it’s been difficult to stop responding to me in fixing mode. She said, “Fixing is the opposite of intimacy. It’s harder to be in the pain with someone than to fix it.” Let’s be honest with each other, it’s wildly uncomfortable to see someone you love in pain. The urge to fix, to alleviate one’s pain, comes out of this place of discomfort. Friends, we have to become more comfortable with discomfort in order to keep knowing one another in the presence of chronic illness. 

@@We have to be more comfortable w discomfort in the presence of chronic illness in friendship.@@

Being with a friend who is sick is difficult for both parties, especially when a friend has to accept practical help because of their illness. Michelle and I reminisced about when we were college roommates and I often needed help from her to cut my food, brush my hair, and drive across campus or town. She shared, “It’s humbling for both people. By no means is it a chore. But I’ve often thought, do they know this is hard for me too?” It was good for me to remember that it’s hard for my friends to see me as sick and to offer help that they know I would rather not receive because of my own stubborn pride. It’s easy for those in the chronic illness community to focus on how difficult our experience is. But, friends, hear that I know this is hard, humbling, and heartbreaking for you, too. 

On Unpredictability:

If you are reading this, you probably already know that being a friend with someone with a chronic illness means your friendship can be pretty unpredictable. Some weeks I can spend a lot of time with friends and other weeks I’m homebound. Canceled plans and grouchy moods can leave my friends feeling like they are relating to a ticking time-bomb. “It’s a push and pull of how I will be received…It takes self-confidence to not think I am being rejected or that I’m not meeting your needs,” Michelle shared. I’ve gathered it takes some thick skin to be a true friend to someone with a chronic illness. Friends have put up with a lot from me—bitchy words in frustration, unpredictable moods, pushing them away when I’m not doing well, and the general flux of my rapidly changing capacity to be together. Friends, sometimes your friend who is chronically ill feels so overshadowed by her physical pain that she can’t respond to you as 100% herself. Your friendship helps me keep being me. Your friendship enables me to see past the pain, to remember who Katie Jo is. Let’s keep giving each other grace, because, unfortunately, that damn unpredictability isn’t going anywhere. 

On the Gifts of Friendship in the Presence of Illness:

When you can’t always get out of your bed because of illness, you begin to soak up the joy of the present moments when you are able to be outside, work, or spend time with a friend. I think the posture of immediacy my disease has forced into my soul is a gift I bring my friends. Bess shared the thing she loves most about being a friend to someone with a chronic illness is the push to be present, to enjoy what’s right here right now. Appreciating the present moment helps us embrace our true selves. Bess paid me what might be the highest compliment of my life: “You push me to accept my true self. I think it’s because you are so often pushed out of your comfort zone because of your chronic illness, and then you push others to do the same. You motivate everyone around you to be more fully themselves.” That might be part of the rub with your friends who are chronically ill, too. It’s scary to have to face our true selves! The burgeoning and illuminating sense of presence we who are chronically ill bring to our lives can be a bit overwhelming. Our sickness makes us face things about ourselves we would rather not face. And we know it highlights similar facets of your lives as well. Friends, let’s soak up the joy together when we get to share coffee, sit in the sun, walk in a park, or simply sit together on a couch. Let’s share the joy of “being” together as we each more fully become who we are.

Ultimately, you are a gift to your friend who is chronically ill.

You are a gift not simply for the help you offer and the comfort you bring. You are gift because of who you are, because in you I see the meaning of love, of holiness, of truth lived out through the dark places of life. Your faithful friendship helps me know that God will faithfully raise me out of this body touched by sickness. Friends, in knowing you I better know the love of the God who created us, of the victory of Christ’s love that conquers sickness and death in resurrection. You teach me to hope, to love, and to just be. Friends, please know that you are a treasure and gift in my life.