I think hell might feel like being in an MRI machine—alone, trapped, and unable to move. Yesterday I had a two-hour dose of hell in that cacophony of noise, getting an MRI of my brain and spinal cord to find the cause of my new symptoms.
Flat on my back with a net of plastic placed firmly over my head like a cranium-shaped prison cell, I faced the terrible tunnel of noise and the fears pulsating in my soul. I was equally afraid of ruining the images with the tremors in my hands and arms and of being diagnosed with a brain tumor. Actually, I’m more afraid of living with these symptoms and getting no help. I’m afraid of my life denigrating into darkness, of becoming too unwell to scrape out meaning in the written words that have become my salvation.
For several of the one hundred and twenty minutes of hell, I sobbed without moving, feeling forsaken in this body of pain.
Unlike hell, I knew I was not alone.
Partners in the Mystery of Pain
In December I turn thirty, which feels like a welcome relief to my twenties. Every single year of my twenties felt like dying, except I couldn’t die. You might think I’m ungrateful for saying that. But at many times I wished I could just die, because that would be preferable to a lot of the pain I live with every day. Thirty feels like fear and relief, because the weight of history tells me there is more suffering to come, but hope like a foreign invader keeps me longing for a better life.
I taste death every day, and lately its bitterness sits in my mouth like coffee breath and the metallic-penny-flavored saline of my monthly IV treatments. Since July, my disease has roared its symphony of unrelenting pain quelled only by high-dose steroids—which make my face look oddly cherubic, an ironic contrast to the anger welling inside of me. A month ago, new symptoms emerged, and I’m not sure I can stomach the intensified taste of decay sitting acrid in my mouth.
How am I supposed to enter the next decade of my life with hope when my hands are shaking with tremors, pain is shooting down my arms and legs, and I sometimes fall from a lack of balance?
Of course, we all taste death every day. In a way, I am not special. We are all decaying and breaking, living in that long spiral of telomeres shortening further and further until we no longer breathe or blink. But for reasons beyond my comprehension, the flavor of death coexists with life in an unavoidable way in my young life. We are all a matrix of life-death, but the persistent pain, harsh-but-necessary medical treatments, and corresponding spiritual struggle make me vividly aware of the decomposition our glorious bodies endure in their short orbits around the sun.
I am one who grieves, one who dies daily, one who loathes the taste of death in my mouth, even as I curiously love the longing for life it imbues in my bones.
And I am not alone.
This morning I texted with my sixty-four-year-old soul-sister, who is tasting death even more than I am. Yesterday she and her husband had their first palliative care appointment, the unavoidable mark of his descent. She has spent the last two years preparing for her husband’s death from ALS. In the last several months, we’ve offered each other comfort most can’t give, a mutual understanding of life shaped by relinquishment.
As I texted her about their appointment and my own upcoming appointments, I had a sudden vision of sitting on the edge of a cliff, and I began to weep in the middle of the coffee shop full of customers where I had been writing for the morning. At this point in a hard week, I’m not even embarrassed by my overflow of tears; they are a welcome relief to my pent-up woe. If it makes others uncomfortable, forget them.
Sitting On The Cliff Edge of My Future
Several years ago my friend and I had attended a soul care retreat at the church we both went to at the time, before I lived thousands of miles away from the hug I wish we could share right now. At that retreat, we were instructed to spend an hour in solitude and silence, during which I was given the most vivid vision I’ve ever had. As you probably have gathered, I’m eccentric—but even I don’t have visions on the regular.
At the time of the retreat, I had just given up my dream job due to a terrible flare of my disease. My life felt upended by sorrow and limitations. I feared my future would be one long decline into the dark. Sitting in the wordless quiet, I saw Jesus take me on a walk through a forest, the type of walk I had longed to take in my actual body that had loved hiking but could barely manage the walk across the room. He led me to a cliff, and we sat together in wordless comfort looking beyond the cliff’s edge to something beautiful and vast and mysteriously far off.
When texting my friend, this is the exact vision that flashed through my mind and made me weep—call me crazy or call me comforted. I do not care.
She and I are at the cliff’s edge of our futures. We are those who grieve. We are those who know death. And somehow, we know Jesus sits with us at the edge of what we fear and long for.
Even as my hands tingle and tremble, bumbling against my computer’s keys in an unfamiliar way, even as fear of a dark future fills me with fury, even as I leave this coffee shop to go to yet another appointment where I may or may not find help, I know I am not alone at the cliff’s edge. The God who enfleshed himself in a human body like mine, who placed his unending glory and light into the terribleness of a body with telomeres that would shorten and fail, into an existence of frustration and limitation, who chose to eventually stop breathing and blinking—this God sits with me at the edge of my future. We sit in wordless comfort. I think he may even be weeping. The vista seems beautiful. I’ll let you know.
Cover photo by Benjaminrobyn Jespersen.
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