Hoping Against Hope

“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).

Dying is Often the Easy Part

Marge was in her late 80s, hospitalized for congestive heart failure.  When we first met, she was being attended to by her daughter, Karen, who welcomed me in.  “Mom’s doing better today.  She’s active in her church, she’ll be happy to see you.”  We settled in for a nice conversation about her family, her faith, and her friends, and Karen and I departed together.

When I returned two days later, Marge was in her bedside chair wearing a bright lilac print dress—a sure sign she was being discharged.  I commented that it looked like she was having a good day.

“Oh, yes!” she exclaimed.  “The doctor came by this morning and said there is nothing more they can do for me.  I’ll be going home very soon to Jesus, and to my parents, and to all who have gone before me.  It’s so exciting, I can hardly wait!  I’ve been on the phone telling all my friends.”

What can one say to that?  One might or might not share Marge’s theology, but her joy was infectious.  Wouldn’t we all hope to be so positive nearing end of life?  I joined in her celebratory prayer and wished her a good journey.

On the way back to my office I ran into Karen coming off the elevator.  “Have you seen my mother today?” she asked anxiously.  I told her I was just coming from her room, and that we’d had a good visit.

“Really?” she asked.  “Because she’s calling all her friends and telling them she’s going home to Jesus now.  They are freaking out, and I am, too.”

“I think you need to go talk to your mother” was all I could say.

If there is one lesson chaplaincy teaches endlessly, it’s that we can control or change so little.  I might have once thought a chaplain’s job was to say something transformative, but it’s much more about presence and listening.  Rather than feeling the need to be a font of wisdom, we need to trust the patient (or loved one) to know what needs to be said, and to leave them feeling deeply listened to and validated.  With rare exception, a chaplain fixes nothing.

It’s a helpful lesson, especially when dealing with mortality—the “problem” that can’t be fixed.  Whether through instinct or culture, though, we keep trying.  When the topic is our own existence, we tend to ask for whatever treatment is most likely to prolong our life.  At some point, though, for most people, death’s inevitability becomes clear, and we become reconciled to our inability to change the outcome.

When the life on the line is that of a loved one, though, it can be much harder.  We don’t feel our loved one’s pain or exhaustion. We don’t go through their deeply personal evaluation of the struggle to keep living vs. the possibilities of what lies beyond death (even if simply nothingness).  We focus instead on our own dread of the loss we see coming—perhaps because we have never known such a loss, perhaps because it conjures up painful losses from our past.  It’s a brutal reminder that life brings suffering that we are powerless to prevent.  It cannot be fixed.

What we can do, as a chaplain or as a loved one, is accompany.  We can try to be present to the other’s reality, to give them space to tell us difficult things, to help them feel known the way they want to be known.  I understand why Marge’s daughter and friends didn’t want to hear what Marge had to say, but that was Marge’s reality at that time and she wanted company in her joy.  This, at least, I could offer her.

I’ve often wondered how the conversation went after I parted with Karen by the elevator.  I wasn’t invited to join that conversation, and it wasn’t my job to insert myself. I have to trust that they could lead each other to where they needed to be.  I have my hopes, but I will never know.  I rarely do.

Practicing Hope

James was a middle-aged man whose metastatic cancer had caused paralysis below the waist.  When we met, he spoke of his leadership responsibility for his extended family, including children, grandchildren, and his younger siblings.  While acknowledging the possibility of dying soon, he felt his purpose in life was to heal and rehabilitate so he could resume his responsibilities.  To do anything less felt like failure.

James began treatments for the cancer causing his paralysis, but these made eating intolerably painful and he began wasting away.  He shared how deeply this scared him, but it didn’t weaken his resolve.  James reflected thoughtfully on how humbling his illness was, but also on the life lessons it was teaching him.  He wanted to capture them all to share with his loved ones during his remaining time on earth.

James was no stranger to hardship.  His family of origin was large and poor; his mother exuded love for God, but James fell into gang life.  James shared, in a matter-of-fact way, about being on the receiving end of bullets shot with the intent to kill, and about renewing his relationship with Jesus while in solitary confinement.  By his thirties he had earned his release and begun the life of a working family man.

The seeds of faith within James grew stronger as he confronted his illness.  He began speaking openly about his mortality, slowly building his trust in God to care for his loved ones when he could no longer do so.  At the same time his faith also intensified his will to push through pain toward recovery.  James began making steady progress, putting on weight, then walking a few steps, eventually climbing stairs.

As the prospect of discharge to home came into view, James wanted to explore “a new kind of prayer”—one that felt truly authentic, not formulaic.  Above all, he wanted to express gratitude for his life—not just the domestic life he looked forward to going home to, but every step of the journey that made him the person he is today.  He had come to embrace himself fully as a child of God.

I adopted the tagline “Practicing Hope Amid Loss” for many reasons.  Hope, like gratitude, is a muscle that develops strength with practice.  Krista Tippett adds, “[Hope] is not wishful thinking, and it’s not idealism.  It’s an imaginative leap.”[1]  The challenge of our elder years, it seems to me, is finding that place where we can be fully present to and engaged with loss while, at the same time, not losing faith that light remains in the darkness.  Some days that feels like quite the imaginative leap.

My eight visits with James, spread over four weeks, gave me a master class in practicing hope.  Since the onset of COVID our family has endured one health crisis after another, and sometimes I have struggled to imagine positive outcomes.  After one of these crises hit, my supervisor commented that it would be entirely understandable if I needed to take some time away from chaplaincy.  But I was finding that chaplaincy work was helping me keep my situation in perspective, even inspiring me.  Shortly thereafter I met James, and for that I am forever grateful.  He turned out to be just what I needed.

My training taught me to keep my situation “out of the room,” to focus fully on James and get my own needs met elsewhere.  It wasn’t difficult—James’s life experiences were so far removed from mine, and his personality and needs were so intense, that there wasn’t room for me in that room anyway.  Later, reflecting quietly, I could see how he was raising and addressing many of the same questions and fears that had been filling my mind.  He not only challenged me to adopt a posture of hope, he showed me what it looked like to practice hope in the midst of loss.

In the end, James’s hope bore fruit:  he received what he had been seeking—more time with his family.  In the end, I have been blessed, too—our health crises have left their mark, but our spirits have been strengthened.  Many situations we confront as chaplains—and as humans—seem to have no possibility of a happy ending.  I believe it is good for us to build up our muscles of hope whenever we can so that they may become a source of strength when the loss that surrounds us becomes deeper.


[1] Krista Tippett Wants You to See All the Hope That’s Being Hidden, NY Times, July 10, 2022.