“All I know is that six days ago I was perfectly fine, then I had some tingling in my feet, and now I can’t even walk.”
I hold the hand of Rachel, a 40-year-old woman, and absorb the story of her mysterious illness. I listen to her describe the light of her life, her 18-month-old son, Joseph, and speak of her maternal grandfather, now deceased, who inspired her son’s name. I create room for her to sob as she tells me how much she misses them both right now. Near the end her mother, Sally, joins us, and together we pray.
Dear God – We pray for your deep sense of presence as we gather in your name. We ask for wisdom for Rachel’s doctors, that they might discover the cause of her affliction and restore her to health. Please comfort her heartache for those she is missing, and grant her peace as she awaits your healing touch.
“If you could come see Rachel today, it would mean the world to her. She told me you remind her of my father, that you comfort her the way he always did.”
Sally has stopped me in the hall; while Rachel’s unit is not on my rounds today, I accompany her back to Rachel’s room. Rachel’s husband, Dan, is feeding her lunch, as Rachel can no longer lift her arms. We speak briefly and agree that another time might be better. Back in the chaplains’ office, I look up Rachel’s chart and see a new working diagnosis: Guillain-Barre Syndrome.
Dear God – What a terrible condition to befall Rachel. I’m sure it grieves you even more than it does me. Please give her strength to battle her condition. Help me, too, to be the chaplain she deserves.
“Rachel appreciates your coming, but she’s too exhausted to see you—she just needs to rest. She’s a real fighter, though—she’ll get through this. We have her church and ours praying for her recovery.”
Sally has intercepted me outside of Rachel’s nursing unit. I ask Sally how she is holding up. Her lip quivers, but Sally’s a real fighter, too. She says they just need to get Rachel’s sodium levels back up and she can move to the rehab clinic to rebuild her strength. I review her chart and confirm this prognosis.
Dear God – It’s been more than a week now, and the light at the end of the tunnel seems always around the next bend. I know you are doing your best—Rachel’s family says they feel your presence at all times. Please bring strength to them all—and to me as well—to be ready for whatever may be required.
I check the census and find Rachel in the ICU. There, I find Sally, Dan, and Rachel’s sister gathered to one side of Rachel’s bed. Sally waves me in, then collapses in my arms. I close my eyes to feel her pain, then open them. I see Rachel asleep in her bed—unmoving, intubated. Dan and Rachel’s sister look on with me, in stunned silence. Sally lifts her head to speak.
“The good news is she is finally getting some deep rest. The doctor was just by and said her labs were a bit better. We might have hit bottom at last. We just have to hope.”
Sally thanks me for coming, then takes another long hug. It is afternoon before I can chart my visit. I learn that Rachel has been transferred to the ICU of a big hospital downtown, which her doctors feel can better address her continued deterioration. And that is all I will ever know of Rachel and her family.
Dear God – What work this is that you have called me to? You bring me into the midst of deepest pain, which I can do little to relieve, then pull me out without resolution. You teach me that accompaniment is my primary medicine, but that I am only one thread in the fabric of care. I must trust you to heal what I cannot, and I must accept that my care, while it feels insufficient, is nonetheless all that you ask of me.
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This story, now three years old, still chills me. As I said in an earlier essay, Practicing Hope, it can be so difficult to be fully present to and engaged with loss while, at the same time, not losing faith that light remains in the darkness. I draw inspiration from Sally’s continued expressions of hope, which were not simplistic wishful thinking but rather a powerful, determined search for light, for the strength to move forward despite daily discouragements.
Hoping against hope, when our desired outcome seems increasingly remote, requires us to shift our focus away from that outcome toward a goal that feels more achievable. If not improvement with symptoms, then perhaps an improved lab result. If not restoration of the ability to walk, then perhaps increased ability to navigate by wheelchair. If not remission of cancer, then perhaps reduction of pain and the peace of acceptance. Hoping against hope is an imaginative reframing of goals within the context of what seems possible in order to restore a sense of agency to those who are suffering. It is the opposite of giving up hope—it is an accommodation to reality that allows us to continue to hope.
To my mind, this is difficult work to do alone. The accompaniment of others in our darkest moments can pull us out of a vortex of discouragement and help us consider more broadly the spectrum of possibilities. The world’s great religious traditions do much the same by placing our personal crises in a larger spiritual and historical context, and by inspiring us with examples of others who have maintained hope despite equally difficult circumstances.
When supporting someone confronting a situation that feels hopeless, our task is to walk a fine line that neither encourages false hope nor discourages the work of hoping. Often that is best accomplished just by being present, listening to and acknowledging the difficulty of the situation, communicating our love, and supporting the person in their work of evaluating and reframing their goals. And, if one is a person of faith, trusting that God is present and active in all of this work without ever presuming that we know the outcome. If we can show up and do this, we will have done our part.
In these shortest days of the year, as many of us prepare for the long winter ahead, it can be difficult to find reasons for hope. Yet we often find it in the unlikeliest of places, including among those whose suffering is greatest. For me, the most profound message of Christmas is this: the light shines in the darkness, and the darkness has never overcome it (John 1:5).