It’s a long hallway, but it’s not long enough. My steps are limited, as is my ability to grasp what my doctor just confirmed. “You already knew what he was going to say,” I remind myself as I approach the end of the hall. It’s freeing to turn the corner and leave behind the clinic that is all too familiar, and yet I still feel trapped. Even as I descend the staircase in the lobby and ask the valet to retrieve my car, I feel confined to what was just said upstairs in the clinic. Chained to a prognosis that I did not want my doctor to confirm. Tethered to the reality of my complex syndrome, the reality that leads to the affirmations I dread having to hear:
“We’re not seeing any improvement.”
“We’re at the end of our options.”
“Surgical intervention is probably our best route going forward.”
The man at the valet station opens my car door, and I take my place in the driver’s seat. It feels weirdly ironic. I’m in the driver’s seat pulling away from the appointment, yet what was said in the appointment is somehow in command of my life. The clinic becomes smaller and smaller in my rearview mirror, but the heaviness of the prognosis is unchanging and inescapable. As I reach the end of the long driveway, I begin to wonder what I should say to my loved ones. I stop at the red light, and my mind is flooded by the names of family members and friends. Images of each person quickly come and go, but they disappear altogether when the light turns green. I turn out of the driveway and onto Inwood Street, simply going through the motions while I think about my mom. What should I say to the loving advocate who has spent the past 26 years fighting for my well-being? How do I tell her that my doctors confirmed what I already knew — that we can’t slow down the progression of my disease? I’m at a loss for words, yet my mind must move on as I leave Inwood Street for Lemmon Avenue. That’s when my husband comes to my mind. What will I say to the man who vowed to be with me in sickness and in health? How will I find the right words to express the grief I feel toward the way our life together has unfolded? Do those words even exist? As I stop at each red light on Lemmon Avenue, I try to put together phrases and sentences that will cause the least amount of heartache, but each sentence is punctuated with pain. The light turns green, so I keep going. I’m still searching for the right words, yet nothing seems adequate.
Lemmon Avenue turns into Haskell, and I know I’m just a few minutes away from my apartment. I’m running out of time, but I’m also running out of words. I’ve searched through my mental Dictionary of Disappointment, the collection of remarks I’ve used in the past to describe the sad state of my syndrome, yet no dictionary entry satisfies me. I still haven’t found the right words to use.
But then I turn onto Swiss Avenue. To my left is my apartment building, and to my right is Dallas Theological Seminary. I’ve spent countless hours on that campus, engaging in the wonderful task of theology and learning to speak rightly of God, as my friend and professor, Daniel Lee Hill, likes to say. In those classrooms I’ve recited poignant prayers by Saint Augustine and sang exquisite hymns that I hold near and dear to my heart. Many lines and lyrics from these beautiful works come to mind as I realize that I have yet another loved One I need to speak to, the One who is with me and for me and knows how much I hurt. I pull into the parking lot beside my apartment and put my car in park. I still haven’t found the right words to use when I finally enter my apartment and call my mom and husband. Nevertheless, I do know the right words to say in this moment, the moment of stillness and silence before I vacate my car. In this calm moment before the storm of sorrow, I know which words I need to voice.
I close my eyes and take a deep breath as I prepare to replace the emptiness I feel with words that call forth a comfort I cannot explain. I embrace the quiet, only hearing myself inhale and exhale. I open my eyes and gaze at my hands, two painful yet purposeful vessels that undeniably bear my syndrome. Tears trickle down my cheeks as I finally whisper the only words I can manage to pray.
“Be near, O God. Be near.”
When I begin to write a post like this one, I have to remind myself that many will come to the end of this story and feel unsatisfied. They will want me to include some sort of inspiring or optimistic postscript. But I’m not writing this post for those people. First and foremost, I’m telling this story for my fellow patients, those having to embark on the treacherous journey that begins in a doctor’s office and never seems to end. However, I’m also telling this story for the friends and family members of my fellow patients. In my 26 years of life with my complex syndrome, I have learned that many friends and family members don’t know how to journey with chronic patients. Every patient is different and needs different forms of support, but I’m telling this story to give you a glimpse into what it’s like to try to sort through all of the thoughts and emotions that flood a patient’s mind as they navigate sorrow and suffering. It’s taxing to try to figure out how to explain what is happening and whom to actually tell. Which loved ones would care to know? Which friends would allow me to say, “This sucks,” without reprimanding me? Which professors or classmates wouldn’t try to force me to be optimistic when I am rightfully despondent? Which individuals would dare to continue the exhausting work of committed, faithful friendship?
If you desire to be one of those loved ones, friends, professors/classmates, or individuals but aren’t sure how to journey with chronic patients, then keep reading. I’m writing this next part for you.
In his book, Embodied Hope: A Theological Meditation on Pain and Suffering, Kelly Kapic writes, “Frequently, what the sufferer needs most is not answers but a loving presence and lasting commitment.”1 Those who are suffering, especially those who must endure long-term health complications and pain, long for their loved ones to be near. They need their friends and family to not just be present but faithfully present. Though every patient’s circumstances and preferences will be different, the following “do” and “do not” lists will help you do the hard, exhausting work of faithful friendship to someone in pain.
- Set an alarm on your phone that reminds you to text your suffering loved one. Perhaps the texts that mean the most to me are the weekly texts I receive from friends who want to know how I’m doing.
- Apologize if you forget to check on your friend.
- Ask your loved one if they would like you to accompany them to an appointment. Your loved one may say no every single time you ask, but they will appreciate that you ask.
- Ask your friend if they want to talk about their pain/suffering/sorrow/life events. My mentor often asks me if I want to talk about my life or talk about anything but my life. Sometimes it’s helpful to talk about what is going on, but sometimes I want to just talk about the books I’m reading. I’m grateful that he asks me what I want to talk about.
- Offer to hang out with your friend and do what your friend feels like doing. They may want your company while they rest and watch rom-coms on the couch, but they may want to go sit at a coffee shop and spend way too much money on a fancy latte.
- Ask what would ease some of your loved one’s burdens. When my husband was sick, my parents came to my apartment, took out the trash, and washed our clothes for me every weekend until he was able to do those chores again, chores that I physically cannot do.
- Show your friend that you care. Send monthly flowers. Mail them a card. Make them a meal. Have cookies delivered.
Please, Please, Please Do NOT:
- Tell your hospitalized friend to just let you know when they’re finally discharged from the hospital.
- Pretend that your absence was okay if you forgot to check on them.
- Make the day all about you and your sacrifice if you accompany them to an appointment.
- Try to force your loved one to talk about what they’re feeling.
- Stop asking your loved one to hang out simply because your loved one turned you down before. (You may have just asked to hang out on a particularly exhausting day. Try again. Don’t stop asking.)
- Ask what would ease their burdens but then choose not to follow through.
- Advertise your good deed. Your Facebook friends don’t need to know that you sent flowers to your loved one. Your Instagram followers don’t need proof that you made a meal for your friend.
Though I will not provide an inspiring or optimistic postscript, I will leave you with one final comment on nearness. Every November I reread Kate Bowler’s stunning memoir on living with cancer, Everything Happens for a Reason: And Other Lies I’ve Loved. Each time I read her story, I find myself resonating with different sections or scenes in her journey as a patient. What resonated with me last November was a description of her Mennonite heritage and what it’s like to be part of the Mennonite club. The description says, “They insist that suffering never be done alone. . . They will live and die together.”2 Pain is often isolating, but it doesn’t have to be. In the midst of suffering and sorrow, we can choose to engage in the exhausting yet life-giving work of faithful friendship. We can “insist that suffering never be done alone.” We can help satisfy the longing for nearness.
- Kapic, Kelly M. Embodied Hope: A Theological Meditation on Pain and Suffering. Downers Grove: IVP Academic, 2017.
- Bowler, Kate. Everything Happens for a Reason: And Other Lies I’ve Loved. New York: Random House, 2018.