This essay was originally published in the Sickness & Health Issue of The Mockingbird magazine.
The poem “Footprints in the Sand” presents a person looking back on life; seeing two sets of footprints, then only one, they wonder, “Where did you go, God? Why did you leave me?” God answers: “I didn’t go anywhere. I was carrying you!” It takes a minute for the riddle — which Sarah Condon has accurately described as a “confusing math game” — to gel.
I’m sure the first time I heard this poem, probably in middle school, my mind was a little blown. But by high school, the sickly sweetness of it would have overshadowed any deeper truth. At first glance, Footprints is naïvely simplistic: There is no reason to fear. Jesus is literally always walking with you. Jesus carries you. This might not even be a metaphor, and it stands in contrast to a more intellectual, complicated Anglican faith that sees God as sort of “there,” but less materially involved. God is in the room, present with you in your struggles, but unlikely to reach into them. God is a mystery, not a school janitor. But the reality is that when you are suffering, a mysterious God is useless, almost offensive. Mysterious God is only acceptable when you can afford to tolerate a mystery, before you’ve passed the end of your own capability, when you can still stand on your own two feet. And so the bold claim of “Footprints” starts to ring a lot more true.
It’s easy enough to grasp that losing your health can start you on a downward spiral that is very difficult to reverse, and this is what happened to me. Since last fall, a medical intervention that should have been benign and, ideally, therapeutic, has instead set my already inflamed immune system on fire. On leave from work to take part in the trial of a medication to calm immune hyperreactivity (specifically, disorders called mast cell activation syndrome and dysautonomia), I was unable to return, as I desperately struggled to patch what had once been a large hole that had morphed into a sinking ship on fire. As tangible hope of quickly regaining anything resembling the health I once had faded, my mental health unraveled into a pile of flimsy threads; my life fractured like a continent by tectonic plates.
Over time, the symptom list and the triggers of the symptoms grew, until eventually illness had taken over every square inch of my body and my day, with only occasional, brief periods of respite, and never enough of them. I’ve read lists of clinical symptoms to try to get ahold of what is happening, but I know they lack everything in terms of their creativity. I grasp for words, but the louder and more desperately I speak, the more insane I sound, as every word falls short: nausea! lightheadedness! prickling?? — the words lose meaning to everyone but myself; eventually, they sound like nothing.
In “On Being Ill,” Virginia Woolf describes “the poverty of language” associated with illness: “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver or the headache.” Only people who are in similar trenches use words that come close. And I am desperate to find the words, because if I find the words, then surely someone can figure out what’s happening and make it stop? But my desperation can be even more isolating, and worse yet, a certain kind of onlooker to suffering seems to expect to be served the woes and desperation with levity so that the woes and desperation might become more tolerable to witness. Andrew Solomon’s otherwise glowing New York Times review of Meghan O’Rourke’s memoir on chronic invisible illness mused that “[h]er book can be humorless to the point of self-pity, and sometimes this becomes tiresome; even the dying can find grace in some levity sprinkled through their narratives of decay.” He at least acknowledges that what she went through was very unfunny but doesn’t seem able to relinquish the expectation that she be a little wittier about it.
I only hope to make it through this disaster alive. I imagine that God will not leave me here — that surely I’ll regain enough health before my money runs out, or my friends’ patience runs out, or my own will runs out. But the American medical system was not built for what I and millions of others are going through: a hard-to-pin-down neuroimmune disorder that has only in the past fifteen years acquired its own name and set of comorbidities. My finely tuned sense of what is happening in my body is useless when I don’t have the appropriate language to translate it to skeptical doctors, or the appropriate degree to be taken seriously.
Jo Ann Chaus, Niagara from the series Conversations with Myself, 2020.
As my physical distress grows, my need grows too, until I’m afraid it will eat me alive. “You’re falling through the cracks,” my therapist has said, and I imagine myself literally falling, slipping in between and crashing down on roofbeams, dispersing clumps of dust. I long to instead become the man lowered down to Jesus, avoiding injuries as my friends guide me to the ground. Maybe this is still possible. Maybe it is even happening.
When the sickness began spiraling out of control, I drew on my ability to ask for help. Trying to patch together a medical and social system to bridge me to the other side, my husband and I convened a core group of friends to meet weekly and discuss ways they could provide support. These friends surrounded us with prayer, stopgap meals, and phone calls. They bought the specific eggs, frozen meat, writing pads, and romance novels, I asked for. They made spreadsheets and called neurologists and home infusion companies. They worked from our apartment so that I would rarely be alone.
And I have been so grateful for it. But friends aren’t doctors — they can’t turn off your overactivated immune system or provide a prognosis to quell your anxiety. “How did this start; how and when does this end?” I ask countless times. These are questions for medical professionals. So I have turned over and over and over again to the professionals — through endless virtual and in-person visits — to the point that I am triggered by a glimpse of a white coat or a hint of an on-hold jingle. But the doctors haven’t gotten me better. At best, they’ve gotten me some temporary relief, and at worst they’ve cost me time, money, willpower, and energy. I’ve trialed an arsenal of medications and supplements, and waited, and tried them again. I’ve done acupuncture in two different countries; I’ve moved back to the U.S. to seek better healthcare. I have read and reread all the journal articles. I’ve asked countless questions and received no clear answers. Even in paralyzed despair, I’ve clung to life with the tenacity of a beetle on a blade of grass in a storm. “You’re a fighter!” my psychiatrist proclaims at the end of a session. I glare at him. I do not want to be a fighter. I want to take a nap. I find a new psychiatrist.
In her memoir, The Invisible Kingdom, Meghan O’Rourke describes the consuming need that grows out of untreated illness: “Your need, when you are sick, can squeeze up inside your chest, balling its way up and out of your throat … I pictured it as a thick, viscous, toxic gel that slid out of me at moments when nothing else could.” I know that no human was made to bear such despair, and neither was I. O’Rourke frames this conundrum: “It is unbearable — and yet I bear it.”
Bearing it, yet unable to bear it, I flail; I reach out, out, out for any possible help and except in rare moments it just won’t come. One afternoon in August, lying in bed in a cold, dark room, tired from medication but less distressed than usual, I hear a voice say, “This isn’t over yet, but it will be over soon.” The voice is oddly confident, and vague enough to be believable. Is this the voice of God, or my own desperation? In other moments, my body quiets and peace descends, as if I’ve been dropped ever so gently in a dewy open field after a long hot air balloon ride through multiple states and weather patterns. The balloon skirt settles around me, and I marvel at the blissful neutrality of my own body in homeostasis.
Outside of these moments, I wonder if pain is somehow evidence of God’s presence. How could we be expected to endure such suffering otherwise? How could we get from one point to another without the right equipment? My cardiologist said to me, towards the end of an appointment, “God wouldn’t put you on this earth and give you a problem you can’t solve” without actually solving the problem. The doctor is not God, after all, which is encouraging, but isn’t the miracle of living in the modern era supposed to be diminished suffering? When the reality of your body tells such a different story, the modern era begins to feel a lot more like the Middle Ages.
And so, for the first time in my life, I am literally on my knees, praying to God for an end to my suffering. From this place, it is hard to go on disbelieving in a God who is active and alive and almost carrying me in my moments (months? years?) of despair. I don’t know what this faith looks like anymore, but I know that God carrying me must be more than a metaphor. It must be more than communion, or the presence of a friend, or a cold compress to the head. It must be more than the relieving drink of water from the well. If God is a mystery, He must be real and palpable, nonetheless. What I’m begging for respite from must be moving around like fog under the table, pushing upward, causing wooden slats to buckle, splinters to fall off, causing power lines to fall and trees to crack open, causing the blind to see and the deaf to hear and the dead to walk. My God must be real. My God must lift me up and carry me.
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COMMENTS
7 responses to “One Pair of Footprints in the Sand”
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do you have a user friendly way to print these incredible articles? first world problem 🙂
Dear Sarah,
This may be no comfort for you, but I now know about you and am praying.
It’s immensely comforting!! Thank you, Pam.
The Firefox browser has a page/print icon in the address bar which then produces a print-friendly format.
Hi Richard: Mbird editor here. This article appears in our print magazine! You can purchase a copy at mbird.com/store, and if the cost is prohibitive, send us an email at magazine@mbird.com, and we’ll work something out.
I too am praying for your Sarah, even right this minute. As a home infusion nurse, I care for many people with autoimmune dysfunction and it can be such a conundrum, because of all of the things which influence this aspect of our health. “Tectonic plates” such an apt metaphor…
Prayer is always and ever the right answer. God bless you
Thank you <3