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.
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?
For one simple primer on beginning the spiritual discipline of breath prayer, click here.
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:
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.
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.
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.
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:
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. :)
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.
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.
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”:
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?
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.
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.
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.
Today is World Autoimmune Arthritis Day--a chance to raise awareness for how autoimmune arthritis affects the lives of millions of patients worldwide, including their friendships. Have you lost friends since getting sick with your autoimmune disease? Do you find yourself lonely as you face daily pain, fatigue, and disability? Yeah, me too...
When autoimmune disease often keeps you stuck in bed, on the couch, or unable to do much after you spend all your energy at work, it’s easy to feel like building and maintaining friendships are impossible tasks. I know my friends get sick of how often I cancel our plans. It’s been happening for seven years… And chronic illness is so taboo in our culture. Everyone lives as though people should just get well like you recover from a cold or the Flu. But with diseases like ours (Ankylosing Spondylitis, Lupus, Rheumatoid Arthritis, and Chronic Fatigue Syndrome, to name a few!), we often don’t get well. We keep struggling with daily pain and our bodies often keep degenerating in their slow, excruciating march toward death. Frankly, you and I are visual reminders to the people in our lives that they too are not in control of their health or future. The fact that we are sick makes both us and others uncomfortable!
In the seven years I’ve dealt with autoimmune arthritis I have seen countless others decide to relegate their disease to a dark corner of their life. It’s a place only they themselves and maybe one other person can visit.
And I get it.
Let’s be honest, it is often embarrassing to be sick and let others see us this way. It’s uncomfortable for me to allow others to see me hunched over, shuffling across my school campus like a 90 year old (I’m 27); or doubled over in pain from chronic diarrhea. Or running to the bathroom every hour from persistent nausea. Or just mentally fried from being in so much damn pain. The invisible reality we carry often keeps us from engaging with others who are well.
But what if it didn’t have to? What if we could still have friends? What if you could take your illness out of a dark corner and let a friend tenderly bear your pain with you?
Friends, I believe friendship in the presence of chronic illness is possible and that our joy in life depends on it. You were never meant to carry this burden alone.
I’ll be the first to tell you that letting others into my pain is scary. Letting someone see me bawling over not being able to walk across the room or how I hate what steroids have done to my body is pretty much the definition of vulnerable. Finding friends who are safe to invite into our vulnerable spaces is hard and courageous work. But it’s also been the most meaningful work of my life with the highest pay-off in peace and joy.
How can you move away from isolation and toward community when you have a chronic illness?
- Accept the fact that no one else can fully understand what it’s like to be uniquely you with your distinctive experience of illness. We each have our own story, and even others who are chronically ill might not totally “get” your experience. Owning that your experience and life are yours alone can free you from expecting others to understand something they simply can’t and won’t.
- Refute the lie that no one else can meet your needs for intimacy or friendship in your sickness. It’s so easy to think that since no one can fully understand what you experience, then others won’t be able to support you in that experience. In order to choose friendship, you have to actively discredit the lie that others won’t be able to support you like you really need. It’s often not that others can’t support us, it’s that they don’t know how!
- Begin (and keep!) teaching your friends how to support you in your illness. Others typically won’t know how to support you without your help. I know, it feels like others should just know how to be there for you. They don’t. They feel confused about how to be our friends. They feel helpless and frustrated not knowing how to interact with us in our sickness.
So how do you teach your friends to support you? Some ideas:
- Talk about your disease with your friends (or potential friends). Share with them what it is, how it affects your body, and how you are afraid it might impact your ability to be a friend and have friends. Let them know it’s ok if they ask you questions about your disease.
- Be honest when your illness prevents you from keeping plans. Start letting friends know when you’re actually too fatigued to go out for drinks instead of just saying you can’t or that your plans changed. Let your friends know if you want to be part of their plans but fear that the get-together is going to be too difficult on your joints. Talk about how you can update the plans so you can be included. Be up-front about understanding that you won’t always be able to be included and that you’re ok with it.
- Remind your friends that you really do want to spend time with them. When you hole up in your apartment during a flare-up: to you it feels like survival; to your friends it can feel like being ignored. Tell your friends that you value spending time with them and are sad when you can’t.
- Tell your friends when you are super sick. It’s so simple it sounds dumb, but we get so used to being sick that we forget to tell others when things are rough. Try to tell your friends when you are extra sick or have a difficult medical treatment, test, or appointment coming up. Actually start letting them know when you have an infection or a super bad flare, so they can know what you are going through and that you might be a little AWOL that week.
- Let your friends see you sometimes when you are really sick. Sometimes we’re just too sick to be with others, and that’s ok. But a lot of other times we just don’t let people come over because we are too embarrassed by our messy dishes, gross symptoms, and lack of energy. A real friend is going to learn how to come over to your place when you are that sick and be ok with your messy place and annoying, un-exercised dogs. But they can’t do it if you don’t first invite them in.
Most importantly, today I hope you hear that pursuing friendship while chronically ill is worth the effort. Doing the things I outlined above is going to feel scary and vulnerable. It’s going to feel uncomfortable for both you and your friends. It’s something you will get better at over time and that you will have to, like me, re-learn in seasons when sickness kicks your ass all over again in new ways. But, always, always, it will be worth your energy. I cannot promise that every person you pursue will respond to you and your illness well. But I can promise you that someone will respond well eventually, that there are people out there who will let you teach them how to support you and be there for you in more beautiful ways than you can imagine today. I can promise you that the courageous work of choosing friendship over isolation in your sickness will pay for itself in more joy than you can imagine.
So, today, choose friendship. You’ll be happy you did.
Want to talk more about this subject? Join me today for a live-chat at 5pm EST at the World Autoimmune Arthritis Day Headquarters online.