Alone in My Body

by Liuan Huska

The thought that the pain might be chronic flashed into my mind while walking around Herrick Lake with a couple friends visiting town. I had limped about a quarter mile down the trail and someone had stopped to admire some Queen Anne’s lace. A queasy feeling snaked through my insides as I tried to focus on the dainty white flowers, to stay in the here and now, but my vision became telescopic. It zoomed out, out of my body, and suddenly I was looking at myself from above, the 22-year-old with chronic pain. Now the camera panned forward in time, and here I was at 25, 30, 40, in crutches or languishing on a couch, unable to walk around a small lake, staring wistfully out of a frail body while the rest of the world skipped and danced and ran. It was only a couple months into what would be a years-long journey with chronic pain, but that one small thought was already smothering.

Happiness equals reality divided by expectations, some say. As a young adult just out of college and newly married, I expected many things—long walks after dinner with my husband, bike trips along the Prairie Path, and international backpacking adventures. My reality, instead, was gnawing, prickly ankle pain spreading over time up to my knee and lower back. It was confusing doctor’s visits and ineffective treatments, and lots of time sitting on a black futon with my foot elevated. My grand expectations, divided into my (to me) dismal reality, led to so much negative emotion, so much misery.

Not long after the lake walk, I did start to talk about my ailments as “chronic pain” to others. It was a delicate dance between the words I used to describe my reality and the expectations that came with it. If I called it chronic, was that some kind of “giving up” on my part, giving up on the possibility of getting better? Should I keep asking for prayer, over and over, for the same thing? Was I going to be one of those people whose names show up regularly in the church bulletin among the sick and suffering? I didn’t want to be one of those people, but I was suffering, and I did need help.

Chronic pain is painful not just because of the physical sensations, but also because of the other unwelcome visitors that tag along—insomnia, depression, anxiety, social isolation and misinterpretations. This less tangible suffering, and the needs that come with it, is harder to communicate. When people asked me how I was doing, I couldn’t bring myself to say that I hadn’t fallen asleep until 3:00 a.m. the night before because I was having a panic attack. When everybody else stood up to sing in church, I was embarrassed to be sitting like the elderly with walkers, without external indicators to explain my nonparticipation.

I turn 31 this year. It has been eight years since my body first fell apart on me, and, to my great relief, I don’t spend my most of my time languishing on a couch. I still have some pain that is better or worse at times, but it is much more manageable. Through the years I have learned to identify the biggest needs I have living with chronic pain, and found help addressing those needs.

Absence of Meaning

What is chronic pain for? With an acute injury, we understand that pain is somehow a necessary part of the body’s healing. With exercise, the discomfort and soreness leads to health and fitness. Labor pain results in a baby. Chronic pain, by contrast, has no end goal. Its sufferers endure endless nights and days of torment, often ending up in the same place they started.

The meaninglessness of pain pulled the rug out from under my efforts at forward momentum. Before, I could look at this or that event in my life and say, “It was hard, but God worked it out for my good. It had a purpose.” Now, I struggled to see God at work behind the endless pain.

Christians commonly respond to this articulated need by trying to help those with chronic pain find a reason behind their suffering, but this can actually do more harm than good. Once, I went up to a prayer minister at a church I was visiting. After listening attentively as I expressed my desperation and confusion, the woman asked, “Are you harboring any unforgiveness in your heart?” Others with chronic pain can tell of similar incidents where well-meaning fellow believers went by the way of Job’s friends, interpreting the unfortunate circumstances of the sufferer as God’s punishment, a test of character, or intended by God to accomplish some other end. We want so badly to answer the plaintive Whys.

We can be more helpful, and more honest, though, if we simply affirm, with those who suffer, “This doesn’t make any sense. It’s hard. It hurts. It’s okay to be angry and frustrated and confused.” This being with and feeling with a person in pain, without having to tie up theological loose ends, does more to strengthen and encourage than misguided attempts to assign meaning to the pain.

Lack of Presence

Elizabeth Lewis Hall, in her essay “What Are Bodies For?,” concludes that God made our bodies for relationship, to join us to God and others. Pain distorts that purpose. The burning and throbbing in our muscles, nerves, and joints shrinks our field of awareness down to the confines of our own skin.1 Instead of connecting, the body in pain disconnects.

When I faced the nights of constant tossing to find an elusive comfortable position, when the buzz of dark thoughts in my minds crescendoed, I feared then that no one else could feel what I felt, could go through this with me. I was alone in my body.

What I needed most in those moments was presence. Warm, tangible, flesh-and-blood presence. My husband was wonderful with this, though sometimes even he tired of waking up in the wee hours to hold me while I cried. When his arms encircled me, though, and I felt the solid beat of another heart next to mine, I could let go of some of that heavy weight of darkness and pain.

Once, also in that first year of pain, my mom came to visit for a week. Food is her love language. As I ate her stir-fries and soups, the knowledge that I was loved and cared for sank into my gut, into my bones. Though I was having ongoing problems with insomnia, I fell asleep easily during my mom’s visit. Food, and practical mother-love, did its work.

There are so many ways a church can minister presence to those in chronic pain. Beyond the official offering of the Eucharist, we can also offer hugs, hot meals, and regular visits. We can listen without needing to fix the problem. We can provide company to doctor’s visits or treatments.

Those with chronic pain often wonder whether God cares, if God really hears and is near. Simply being present, even if it’s for the hundredth time, to lament, wonder, and hold out hope is a tangible reminder of God’s presence through Christ’s body, the church.

Distancing from the Body

After weeks and months, as my body didn’t respond to the usual treatments of walking boots, crutches, ibuprofen, and cortisone shots, I started seriously doubting its ability to heal. I wondered whether my body was good at all. Before, being in my body through dancing, hiking, or eating tasty food was a source of joy and an impetus for worship. Now, however, I wondered whether it wasn’t better to distance myself from my body, to get away from the pain by focusing on “spiritual wellness.”

Other Christians sometimes reinforced the idea that I could be well by focusing on “spiritual” things, like prayer and ministry. This did help to some extent, lifting my morbid gaze from the malfunctions in my body up to God. However, one unfortunate side effect of this line of thinking is that it splits spirit and body, prioritizing the former. I felt selfish, even unspiritual, for taking time to care for my body, for resting and being “unproductive.”

Many Christians I’ve spoken with who live with chronic illness or pain lament that they can’t participate in ministries the way others can; fatigue puts a limit on how many hours they can be up and about. They can’t commit to ongoing ministries because they don’t know how they’ll feel on any given day. They’ve expressed similar feelings of guilt or unworth for not giving or serving as they think they should.

As we follow Jesus, our God made flesh, it is crucial to hold the spiritual and physical together, to bring our ungainly limbs and inconvenient bodily needs (such as the need to sleep and eat), into the sanctuary, instead of leaving them at the door. We can remind those who suffer physically that our bodies are still beautifully and wonderfully made. We can ease the focus off of being “productive” in ministry as an indicator of spiritual health, and instead honor the need for self-care and Sabbath. When we do these things, we create space for those with chronic pain to listen to their own bodies—learning new rhythms of rest and work and ministry, being okay, sometimes, with not doing anything. We also pave the way for all of us, in pain or not, to rejoin body and soul, becoming more whole as a community.

Find recommended reading for living with chronic pain HERE >>

Notes
1. Elaine Scarry’s book The Body in Pain, expands upon the idea of pain as world-shrinking.

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