I don’t know how to start again.
My fingers touch these keys trembling, having just traced two scars. One is for the placement of the medical device that was supposed to help me. The other is for its removal after we realized it was probably killing me. They sit just millimeters from each other on my chest, still red and raised, reminding me that the space between help and harm is thin and that hope is harder than most professional Christians and experts on the internet will tell you.
It’s been four months since my life changed completely.1 And it’s been two months since I’ve really written publicly. (By the way, since I’ve been so absent here trying to recover from sickness, I’ve paused subscription payments here through the end of November. Thanks for sticking with me.)
A question I hold, unanswered:
how to keep hoping
when hoping hurt me
I don’t know how to start again, but I know I want to begin to wrap words around this wound. I don’t know how to be an author on the internet anymore, but I know I want to speak into the silent places where your scars are still forming, because I know from current experience that silence has a cruel way of cranking the volume up on shame.
I just ate a handful of Glutino brand gluten free yogurt covered pretzels,2 which are one of the best things in my life right now—a fact which is both sad and something I’m not supposed to tell you. Even as I take small bites to savor every ounce of the perfect pairing of salty and sweet, guilt gnaws at me. Forty new pounds of water and redistributed fat now cover my face and arms and stomach—a sentence I intentionally wrote in passive voice—because it happened to me without my consent, seemingly overnight, while I was simply trying to survive.
High-dose prednisone (steroids) probably saved my life when I was first hospitalized in July, but now I don’t recognize myself in the mirror. Actually, that’s not fully honest—now I look in the mirror and often feel shock and sometimes even disgust. So, every bite of one of the few remaining good things in my life comes with the bitter taste of guilt, because how am I supposed to lose this weight if I let myself eat things like yogurt covered pretzels?
Again, I’m not supposed to tell you any of this.
Brené Brown and well-coifed Christians say that we should write from our scars not our scabs, and I’m over here bleeding on the page.
I’m not supposed to tell you that I’m weak until I am again strong.
I’m not supposed to share overwhelm until it becomes overcoming.
I’m not supposed to show you my struggle until I can tell you how to make yours stop.
This week I watched Dead to Me on Netflix. The plot and the pathology of the characters kind of makes me cringe, so I hadn’t watched past the first season when the show came out. But when my best friend told me that one of the show’s lead actors, Christina Applegate, had filmed the final season after being diagnosed with Multiple Sclerosis and gaining forty pounds from prednisone, I made a mental note: sometime, you need to see that.
I watched aimlessly through the remainder of the first and second seasons so I could get to the third. Before I started it, I looked the story up, typing “Christina Applegate” and “steroids” into good old Google. A People magazine story came up, where Christina shared how hard it was to not feel or look like herself during that time. She expressed that for the first time in her life, she didn’t use acting as a way to escape her grief but to channel it.
When I saw Christina Applegate’s round moon face and double chin, I saw myself. Unless you’ve been on steroids or love someone close to you who has, you probably wouldn’t recognize the signs. But to me, her body was like a billboard of a broken heart. Even though she was acting, I could sense her insecurity being in her newly swollen skin. I recognized myself in the way she carried her body, in the clothes they chose to complement her shape, and in the dull ache of loss in her eyes.
She let her grief live somewhere outside of her story. She allowed herself to make art in the middle of her ache. And in letting herself show up as an actor in far less than society’s ideal image, she became an icon for me.
Scene after scene, I felt solidarity. And then strength. The same strength that is fueling me to start again right now writing words to actually share with you, rather than holding back in the safety of only being seen by myself and those directly around me.
The day Jesus died, his friends’ lives completely changed. After Jesus was raised from the dead, they were hiding in one of their homes in fear. Each of them had left everything behind to follow this rabbi and share his message, and now the man was gone and the message must have felt like somewhat of a lie. They had to at least have felt so very confused.
I’ve written about this story so many times, and that’s probably because I need to keep hearing it. I need to know in every new season that there is room in my relationship with God for my needs.
Jesus had appeared to most of the disciples, but Thomas was not there for his initial return. The others are telling Thomas to believe, and he wants more. He says that unless he sees marks where nails pierced Jesus’ hands and can place his hand in the wound in Jesus’ side, he won’t believe the rabbi is alive.
One week later, the disciples are all behind locked doors, still so afraid of what the Roman empire might do to them. Jesus finds them behind their barricades and greets them with a word of peace. Then he turns toward Thomas and shows him the places where he has been pierced.
I’ve heard people of faith tell this story so many times I can’t count, and most of the time, Thomas is talked about as the example of what we aren’t supposed to be. They call him a doubter and judge his desire to see what is real as a far lower form of faith than those who don’t need evidence.
What most people don’t notice is that Thomas is the first of the disciples to name that Jesus is divine.
There’s a line about this in one of my prayers in The Book of Common Courage:
doubters
become the first
to call you Divine.
Both the doubt and divinity in this story make space for me to exist as I am in this season. Confused. Bewildered. Angry. Experiencing symptoms doctors can’t seem to diagnose. Longing to see faces that look like mine. Living behind a locked door, afraid of how those outside might harm me.
I don’t know what I believe these days, and my spirituality is expressed more in silence than song, but I know that when I think of Jesus reaching toward Thomas to witness his wounds, my spirit still rises up with wonder. And while the cross still comforts me, I am more moved by the mystery that even after the resurrection, God has wounds.
The image we are given of sacred, resurrected humanness includes wounds.
And so I sit here in my own woundedness, trying to see the places pain has pierced me as sacred.
Every tear I’ve shed after specialist appointments are just too much. Every panic attack I’ve had when pain and the enormity of my problems pushes me too far past my currently tiny window of tolerance. Every time I’ve recoiled at the sight of stretch marks all over my body. Every sharp word I hurl at myself when I wish I was different than I am. Every pang I feel in my heart when I see a large stranger looking back at me in a mirror.
In the resurrected Jesus, I see and reclaim a reality that so few dare to show:
Wholeness includes our wounds.
I don’t know how to start again. I honestly didn’t expect my health to decline so thoroughly again. I didn’t expect to revisit the liminal land of undiagnosed and mystifying chronic illness. I once wrote a book called This Too Shall Last, but when I entered this hellscape, I really was hoping totally debilitating illness was squarely in my past.
So many people say we shouldn’t share our suffering until it has already scarred over.
They place well-intended rules over what is private and what is public, cautioning against finding comfort in the comments section instead of Christ. And while I’ve waited to share my swollen face with you until I could consistently validate myself rather than look to you to fill that void, I also know that my problems and need to process aren’t going away any time soon. Write from your scars not your scabs is great advice for people who don’t have clotting disorders.
I don’t have the privilege of writing about pain in the past-tense.
A question I hold, unanswered:
how are we supposed to see
our wounds as sacred
if no one will show us theirs?
I have a sneaking suspicion that I’m not the only one whose life feels locked behind closed doors. I have a feeling that I am not the only one here whose trust has been shattered when help actually harmed. I am fairly confident that I’m not unique in feeling chronically disappointed by how life keeps kicking me down.
And I have a growing conviction that many of you also need to see someone else’s wounds in order to trust that even when you remain wounded, you are still on the way into wholeness.
I’m weary of specialists and experts. I’m tired of swimming in a sea of social media where people build platforms on telling us how to be well without showing us the scars that have shaped them.
The people who have most comforted me during this awful, long season of sickness are not the ones who say much but the ones who show much. The friends who are honest with me about their chronic pain or panic attacks or unanswered questions or overstimulation—who let me see their struggle—are the ones who hold me back into hope.
Solidarity is in the space between our hurt and our healing. It is the salve that soothes. It is the voice that speaks into the silent spaces where we’ve been sequestered with what seems unspeakable.
When we stay silent about struggling, we silence all the solidarity that could strengthen us within it.
So, I’d rather risk judgment than withhold mercy. I’d rather let you hear how hard it can be in my mind to see my larger body with compassion than maintain an image of being an expert. I’d rather be honest that I am hurting3 than hold back the broken-hearted kindness that might help you hope.
I don’t know how to start again after great loss. But maybe, like Thomas and Jesus show us, the way is through the wounds.
With love,
KJ
If this is news to you, check out my most recent IG posts from this summer. I went through a rough medical crisis, which is not entirely over.
Okay, I ate these like two weeks ago when I was attempting to write you this letter and just was too tired to keep going. I’ve started and stopped this letter probably twenty times…
I don’t feel like giving a big medical update, so I’m not. But, I will tell you a few things—I remain pretty sick. I have a ton of specialists, and they are still trying to diagnose whatever storm the anaphylaxis from the port started. I’m getting a bit stronger, but I still spend most of my days largely in bed. My job right now is healing. I’m having to relearn so much of what I’ve written about in books. It’s humbling as hell. But I am doing it. I am saying yes to my life.
Oh. How. I. Have. Missed. You. I have prayed and cried and begged the Lord to show you mercy.
I will keep praying. Thank you for showing your wounds. Screw the idea of only showing scars. Guess what? Bleeding is fucking lonely. And we need to know that we aren’t alone when we are suffering. You are imaging our savior well by sharing this brokenness.
I love you deeply.
As I once reminded you and stitched for you, keep fucking writing. Keep shedding light into the darkness.
Step on the neck of evil and take his dirty breath away.
The God of peace will soon crush satan under your feet.
I had never even noticed how even after the resurrection, Jesus still had wounds. Wow.
Good to hear your words, and as a fellow chronically ill person, it’s truly a balm to hear these words from someone in the thick of it rather than from someone on the other side of the struggle. Thanks for having the courage and perseverance to write to us.