Pain is the most individualizing thing on earth. It is true that it is the great common bond as well, but that realization comes only when it is over. To suffer is to be alone. To watch another suffer is to know the barrier that shuts each of us away by himself. Only individuals can suffer.
Edith Hamilton
How long must I wrestle with my thoughts and day after day have sorrow in my heart?”
Psalm 13:2
About three in the afternoon Jesus cried out in a loud voice, “Eli, Eli, lema sabachthani?” (which means “My God, my God, why have you forsaken me?”).
Matthew 27:46
In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, against our will, comes wisdom through the awful grace of God.
Aeschylus from Agamemnon
Blessed are those that mourn, for they will be comforted.
Jesus quoted in Matthew 5:4
I’m anticipating venturing into unknown territory. Thankfully Christ came, died and rose from the dead, and in doing so leads us out of death into a new kind of life. But the reality of living this Christian life is that I live it in community; dying is facing God alone. That can be a terrifying thought. If it isn’t, it should be. So, by looking at creation, particularly infinite creation (cosmos), I’m looking at the character, in part, of the Creator. And I am comforted by what I’m seeing.
But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the Lord’s praise, for he has been good to me.
Psalm 13:5-6
It has been three weeks since Dona died, my constant companion for 43 years. No one said it would be easy to endure this loss, I didn’t expect it to be easy, and it isn’t easy. But I am comforted and lifted up by memories; memories of how she breathed life into me over and over again. I am thankful as I think of her unfailing belief in her creator and savior. It was infectious.
And, of course, I am comforted by the support and concern of family and friends. I am thankful for their memories of Dona. Two days ago, I got a text from a friend:
“I’m acutely missing Dona today. There’s something I really want to talk to her about — she would have been my first call:)”
She went on to add:
“I’m sure you’re madly missing her!!”
Yes, I am madly missing her, but that acknowledgement of my loss somehow lifts my spirits.
Grief and loneliness joined with thanksgiving and comfort.
So, we move forward with the knowledge that those that mourn are somehow and someway blessed and will be comforted. Thank God.
Suffering has allowed me to empathize with the suffering of others more deeply. This new level of compassion is both heart-breaking and life-giving in equal measure. I am grateful.
I occasionally get questions that at first glance may seem impertinent or insensitive when posed to a person with Stage 4 cancer. But I am not startled or offended. Afterall, I write unreservedly in my blog about my mortality, and, most gratifyingly, my friends ask questions out of genuine concern and a desire to understand more fully what I am going through.
Recently, a close friend asked:
“Dona, you ever wish that you had died suddenly from an accident or heart attack instead of going through these years of suffering, not knowing when the medical team has no more resources to keep you alive?”
An insightful question I have been pondering ever since.
There was a time when I would have said absolutely, I would rather die suddenly than go through cancer treatments. After all, what other illness fills us with dread as we wonder about lumps, difficulty swallowing, or unrelenting back pain?
Another friend, a physician, told me about a patient that showed up at his medical practice with grave concerns about a skin condition. The doctor’s diagnosis was chronic, severe psoriasis. He told his patient the condition would cause pain, discomfort, interfere with sleep, and make it difficult to concentrate. There would be no cure. The patient relied, “Thank God it’s not cancer!”
We do not walk around fearing heart attacks, gallbladder attacks, car accidents, lupus, or sundry illnesses that can be very devastating and even fatal. It is cancer that fills us with fear. Within literature or human discourse there is no other disease used as a personifier of something malignant, evil, or spreading. (“Bitterness grew like a cancer until it consumed her.” “His hunger for power was a cancer that could not be stopped until he destroyed everyone in his way.”) We use the word cancer because it is a word loaded with all kinds of imagined suffering and dread of when and how it will take our lives. And unlike the animal kingdom we humans have existential angst and future awareness, realizing we are mortal and will leave behind loved ones, future dreams and plans and meaningful work.
Getting back to my friend’s question……
Early on when I discovered I had metastatic breast cancer I wrote a blog post titled “I like the new metastatic me.” It had nothing to do with being masochistic or pathological. It had all to do with welcoming the change of perspective on what was, and what was not, important in life. Consequently, I found a greater peace of mind because I had less things that I was holding onto and less to become anxious about. The new metastatic me simplified life and found me focusing on joy and gratefulness.
Although my cancer had progressed from Stage 3 to Stage 4, I was happy to find that my character development had moved from stage 1 to stage 2. Well, maybe Stage 0.5 to Stage 1.
That was then, this is now. In the last four years there certainly has been more suffering than I would have anticipated when I was first diagnosed with metastatic cancer. But I can say with confidence that after 4-5 years of living with this awful disease that I’m thankful I was not taken suddenly.
I am more others-centered now than 4 years ago. My character development has moved from stage 2 to stage 3. Well, maybe 1 to 2. You get my intent. I am trying to walk the line between braggadocios and false humility. The point is that I have more empathy and heart sickness when I hear of others suffering, whether from the terror-stricken children of Ukraine, the starving children of Somalia, or the grieving parent of a loss child or husband. I used to avoid reading BBC international news (I have an app). Too much tragedy. Now, I read and pray because it disrupts my own suffering and allows, what Mother Theresa called, “my heart to be broken with what breaks the heart of Christ.”
And this suffering somehow reminds me of the Great Hope.
“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
Romans 5:3-4
Before unpacking this, I must reiterate that the grace of God has been apparent every step away. He deserves the credit and glory.
Suffering can breed empathy:
When people are faced with a terrible diagnosis there is a choice that must be made. Will the rest of life be driven by bitterness and anger; resenting the unfairness? As I have heard on more than one occasion, “I took good care of myself: ate healthy, exercised frequently, managed stress, and even served God so how did this happen to me?”
As I noted above, there is an aspect of my chronic suffering that has bred empathy and compassion for those who suffer, whether from cancer, other ailments, heartbreaks, betrayals, extreme losses. My prayer life has been richer and more spontaneous as I read the news or talk with people who are hurting. And for those times I forget I have cancer as I focus on them.
I do not know why suffering has produced empathy, but I have a couple of theories.
The God of the cross
We have a God that suffers with us. The late John Stott, theologian and pastor of All Souls Church in London often said he could not worship a God who had not experienced extreme suffering.
“The fact of suffering undoubtedly constitutes the single greatest challenge to the Christian faith and has been in every generation. Its distribution and degree appear to be entirely random and, therefore, unfair. Sensitive spirits ask if it can possibly be reconciled with God’s justice and love.”
I could never myself believe in God if it were not for the cross. The only God I believe in is the One Nietzsche ridiculed as ‘God on the cross’. In the real world of pain, how could one worship a God who was immune to it?
John Stott, The Cross of Christ, pp. 335-336
In summary, my metastatic cancer first gave me a new perspective on what, and what was not, important in life. Consequently, I found a greater peace of mind because I had less things that I was holding onto and less to become anxious about. The new metastatic me simplified life and found me focusing on joy and gratefulness.
Second, suffering has allowed me to empathize with the suffering of others more deeply. This new level of compassion is both heart-breaking and life-giving in equal measure. I am grateful.
My character development has moved from Stage 1 to Stage 3! Will I ever get to Stage 4? Not in this earthly tent!
And this brings me, finally, to the point of all this. The end result of suffering is not character development but hope. (Romans 5:3-4) Hope in what? Eternal life and that time when Christ will “make all sad things untrue.”1 A cold, pitiless universe, full of random disease and tragedy, without God provides little or no incentive to develop character or hope.
If only for this life we have hope in Christ, we are of all people most to be pitied.
1 Corinthians 15:19
Yes, oh yes, I am thankful, suffering or no suffering, for every moment the Lord had graced me with!
1Originally spoken by Sam to Gandalf in J.R.R. Tolkien’s, The Return of the King. Often quoted by Tim Keller and NT Wright in their reflections on the resurrection.
The grace of lament is helping me to navigate this painful season of our lives and is also giving me a language to use in the face of widespread injustice and suffering in the world. It doesn’t minimalize or ignore the anguish but as we orient ourselves towards God and give voice to the pain we feel, his Spirit reminds of the eternal truths of God’s goodness and his steadfast love towards us.
Carolyn Madanat
Introduction
In a recent post Dona described how Carolyn Madanat was processing overwhelming grief from the sudden loss of her husband, Labib Madanat, in November 2021. At the time of Labib’s death, Carolyn had been recently ordained as a minister in the Anglican Church in England and was four months into her first post as a curate. As part of this initial apprenticeship she was assigned, as all curates are, to write reflections on significant events during her curacy and the impact on her prayer life and relationship with God. She shared this reflection with Dona and me. Though painful to read, it is just too insightful and redemptive not to share. With her permission and approval, we post it here.
I am no expert on the stages of grief or how trauma is processed, but Carolyn’s narrative of the months following Labib’s passing show both key waypoints and important routines that will help any Christian; both those suffering overwhelming loss or trauma, and friends and family walking alongside the sufferer. This journal is particularly helpful in showing how a grief-stricken heart and often exhausted mind can still use prayer to engage the Spirit; “reminding us of the eternal truths of God’s goodness and his steadfast love towards us.”
And so, again with her permission, I added text boxes to highlight those waypoints and insights.
Dave Eley
September 2022
________________________________
Defiant Hope in the Face of Overwhelming Loss
Carolyn Madanat
June 2022
Four and a half months into my curacy, my husband died suddenly whilst on a ministry trip to Iraq.
We received the devastating news by telephone call: thirty minutes after hearing that he had experienced a seizure and was unconscious, a follow-up call came telling us that he had died. I had no time to begin to process what had happened as I had to make immediate plans to travel to Jordan with our five children, where Labib’s family were arranging to repatriate his body from Najaf to Amman. Once there, we were drawn into the communal grief and mourning of family, church, and friends as we prayed and waited for his body to be released and flown to us. The funeral was held hours after his arrival; I was still in a state of shock and disbelief but Labib’s colleagues and family, in the midst of their own grief, carried the burden of planning and leading the service.
In the first few weeks I felt incredibly disorientated. For the ten days that we were in Jordan there was an established ritual of gathering with the extended family each day from morning to late night, receiving people who came to give condolences. It was emotionally and physically exhausting, trying to give comfort as much as receive it, but it provided a structure for our time and interactions with people. The constant stream of calls and messages brought assurance that many were praying for us, and this carried us through the early days when we could not form prayers for ourselves.
The importance of receiving counsel, even leadership, in deciding on a way forward.
Back in England, as per the norm, people gave us ‘space’ and showed kindness and solidarity in a very different way: cards instead of conversation, food left on the doorstep instead of shared communal meals. It was my culture, but I felt very alone and found myself trying to initiate contact with people so that I could explain why I needed them to keep speaking to me!
In retrospect, I really needed pastoral leadership; I didn’t want to be left to decide if and when I should return to work and ministry. I know that the intention was to not make assumptions about what would be best for me, but I was exhausted and needed someone else to tell me to take time to rest and recover. In the end it was my prayer triplet and a trusted family friend and counsellor who stepped into that role and helped me navigate those early days.
Stillness and quiet were not my friends. At first, I found it very hard to even read Scripture without crying, but I turned to the psalms that Labib and I had read together so many times and they became my prayers; I didn’t have to find my own words to say because the psalmists had done it for me. I found the discipline of a daily quiet time very hard to maintain, so I took long walks and trusted that God was with me and that He was somehow ministering to me. I honestly didn’t feel it particularly, but deep down I knew and believed it was so.
Advent began soon after we returned to the UK and I remember lighting the first candle, Hope, as an act of defiance against the enemy who had stolen from our family. There was something comforting in the symbolism and ritual of lighting the candles each night. What had previously been a fun family activity, took on new significance. However I felt, I wanted to declare -in this small way- that I still had faith in God whose light shines in the darkness and cannot be overcome by it. The ‘waiting’ of Advent resonated with me in a new way: it wasn’t about counting down to a day or a week of celebrations but anticipating the day when Jesus would return and make all things right, forever.
As I returned to work in the New Year, the daily routine of prayer with the staff team was an act of obedience. Often, I didn’t feel like praying but the familiar words of the morning prayer liturgy allowed me to participate even when my brain fog made it hard for me to concentrate for long. My prayer requests were for very practical things, usually focused on the needs of our children– for comfort, for the ability to sleep, for strength to get through each day, for stamina to sit through school and college classes; many prayers were answered, including some I hadn’t voiced out loud. I didn’t talk to God much about my own feelings of grief and exhaustion, but I knew that he knew, and that was enough. Throughout this time, I prayed weekly with the members of my prayer triplet which was a lifeline; other friends and colleagues messaged with offers of help and the promise of ongoing prayer. It was one way that I experienced what it means to be part of the Body of Christ and to belong to one another. God was taking care of me through his people, through my people.
Not long after Labib’s death, a friend who had also been bereaved sent me some books, including one on lament. As I read the book, I knew that I accepted it all in principle, but realised that it was the first time that I had actually thought about and experienced what it means to lament. I wanted to be able to express my sadness, disappointment and even anger, but without falling into despair. Mark Vroegop talks about a four-step process that God leads us through in grief and lament:
……to turn, to complain, to ask, and to trust. Importantly, the first move has to be a physical orientation towards God and not away from him.
I still struggled with the idea of complaining to God. Having spent so much time with Iraqi and Syrian refugees in Jordan and hearing their stories of losing multiple family members and friends, not to mention homes and livelihoods, I didn’t see how my loss could be compared to theirs. What I’ve started to realise is that lament isn’t about whether my suffering is sufficiently bad enough to warrant a complaint to God. Instead, it’s declaring, with God, that all is not right in the world and knowing that this grieves him too, while remembering that sickness, death, pain, and injustice do not have the final word.
As Vroegop says, “Lament is rooted in what we believe. It is a prayer loaded with theology. Christians affirm that the world is broken, God is powerful, and He will be faithful.”[2]
Through the year, I have become more aware of the role of lament in both my individual prayers and our corporate prayers as a church family. When the war broke out in Ukraine, when an earthquake killed hundreds in Afghanistan, my intercessions have included a strong note of indignation at the injustices that are being suffered in a world that is under the curse of sin and death; I’ve been led to boldly ask God to intervene as only he can, affirming that he is mighty and able to work good for his people. I’ve come to realise that part of our calling as God’s people is to lament the state of our world and to call on God to act.
I had to spend a few days in Jerusalem, sorting some of Labib’s paperwork, and connected with old friends and colleagues who shared the challenges they were facing in their own ministries. I found myself increasingly praying and interceding for them – for reconciliation and unity between church members and leaders, for Bible translation work, for the Gospel to touch the hearts of the non-Christian majority. Although I couldn’t step into the huge void that Labib had left as a leader in the region, I felt as though God was rekindling the love and concern I had held for the people of the Middle East for so many years when we lived and ministered among them. It was an invitation to stay connected to what God was still doing in and through brothers and sisters there, even if Labib was no longer with us. Since the visit, I have been interceding more often for ministers and ministries in that region that God has put on my heart. It has helped me to keep my own difficulties in perspective and to see the bigger picture of what God is doing in the world.
Over Lent I put together material for a Lent course for St Paul’s and the theme was the spiritual practices of solitude and silence. These are disciplines that even prior to Labib’s death I have found quite challenging. I am someone who works well as part of a team, and this includes praying with other people; my night-time prayer routine with Labib was an important part of our shared life together. As mentioned earlier, I’ve found quiet times particularly difficult in this season and the thought of sitting in silence with God just listening and waiting has felt quite unattainable, not least because poor sleep at night means I have a tendency to fall asleep if I sit still for too long. During the course we reflected on the story of Elijah in 1 Kings 19 and how he reached a point where, before he could even hear God, he needed time to recover from the traumatic experience he’d just been through; God ministered to him by providing food and the opportunity to rest.
It was very helpful for me to be reminded that sometimes we can be in a place where we just need to trust God and let him take care of our physical needs so that we will then be able to hear him speak. The combination of experiencing a sudden trauma and then needing to carry the emotional and practical needs of the family, in addition to returning to pastoral work, had left me feeling depleted after a couple of months. The Lent reflections released me from feeling guilty about not being able to sustain my quiet devotional times and allowed me to rest in God and trust him to carry me through that season. As my sleeping patterns have improved I’ve had more capacity for silence and individual prayer, although I still favour prayer walking over sitting.
The final reflection I have on how my prayer life and relationship with God has been shaped over this last year, following the loss of Labib, relates to Passion week and particularly Holy Saturday. Coming from a ‘low-church’ tradition, my engagement with Passion week has primarily focused on Good Friday’s Hour at the Cross and then the joy and celebration of Resurrection Sunday. This year, I co-led the Hour at the Cross service and found it very moving; I also had the joy of baptising a new believer on Sunday morning – as part of our Easter family celebration service. However, what resonated with me for perhaps the first time was the poignancy of Easter Saturday. Up until this year, it’s simply been an in-between day that I’ve not thought too much about, but it felt very different this time around. Holy Saturday seemed to encompass all that we had been experiencing over the previous months, which was the feeling of being somehow suspended between two worlds: one of overwhelming loss and one of defiant hope. A friend sent me a poem that finally put into words everything that I felt but hadn’t been able to express. It wasn’t that I suddenly had answers to everything, but I had a space to hold the questions:
‘Holy Saturdays are the days in between what has been laid to rest and what we are doing our best to hope will still rise … Holy Saturdays are brutally honest days when our hope and grief, equally matched, wrestle it out’[3]
Judy Peterson
I realized that trust in God’s goodness and feelings of sadness are not mutually exclusive; lament is a path to praise that travels through disappointment and pain, and being okay with not knowing everything. It is accepting the co-existence of grief and hope; mourning what has been lost yet grateful for what remains. Part of prayer, I have realized, is surrendering to God the questions we don’t have answers for and having the assurance that these questions are in safe hands. It is having enough confidence in God’s goodness and steadfast love towards us that we don’t need to settle for ‘glib’ answers to those questions.
I have already seen the importance of this in pastoral situations where there is a great deal of suffering and hardship, and the inevitable questions that accompany it deserve to be heard and held respectfully. Instead of trying to scramble for answers to ‘ease’ the pain, for myself or others, I want to simply acknowledge the presence of God in our pain and his promise to transform it and redeem it for our good and his glory, if we allow him to. Vroegop writes that: ‘the gospel empowers the followers of Jesus to enter the dark moments of people’s lives. Those who know the story of hope and who believe in God’s goodness can be conduits of his grace’.[4]
The grace of lament is helping me to navigate this painful season of our lives and is also giving me a language to use in the face of widespread injustice and suffering in the world. It doesn’t minimalise or ignore the anguish but as we orient ourselves towards God and give voice to the pain we feel, his Spirit reminds of the eternal truths of God’s goodness and his steadfast love towards us.
Bibliography and references
Jenae, D, When Mountains Crumble, Moody Publishers, 2022.
For most cancer patients I would imagine shopping for a burial plot would be a serious and sober pursuit! Nothing feels more final than looking at the place you will be buried one day; especially if that day is more imminent than hoped.
I suggested to my husband of 43 years that we look for our next real estate purchase at the Forest Lawn Cemetery in Buffalo, a beautiful 269-acre expanse where people walk, jog, and bike. (Live dogs not allowed for obvious reasons, but one may be buried with their pet for an additional fee.) Tour guides recount the biographies of famous residents including a US president, many members of Congress, Seneca Nation chiefs, and the inventor of modern indoor air conditioning. The walking paths, valleys and hills, meandering creek, visually arresting monuments and obelisks, and trees of all different species are enhanced by magnificent columbarium’s, mausoleums, and a stone chapel.
And thankfully it is not just for the wealthy and privileged. My daughter has seen a procession of Congolese refugees dressed in white slowly walking towards a child’s resting place.
However, I want to be very sensitive towards those who have every reason to be sobered, anguished, and grieving as they themselves have had or will have the heart-wrenching task of arranging a burial place for their child. It is quite heartbreaking to see burial stones of young lives cut short. The poignant short, engraved inscriptions tell the story of loss so unimaginable! So, the thoughts in this post may not be for you.
My latest real estate purchase
But that was not our experience. David and I enjoyed ourselves as the cemetery manager showed us plots and told us stories. I wanted a site under a stately tree on a hill. I figured this would be a challenge given that over 165,000 ‘permanent residents’ had picked sites before me. But eventually, the manager found two sites together that were exactly what I wanted with a bonus view of my favorite sculpture in the cemetery.
By John Field, Forest Lawn Cemetery, Buffalo
Of course, once the site is selected and secured, one must decide on a grave marker. I noticed some residents had a stone bench as their memorial. That was what I wanted. I imagined something like, “Hi! We were Dona and David Eley. Have a seat and think of the Wonders of God.” Unfortunately, that idea did not fly. The “Hi, have a seat,” sounds like me but more than a bit much for David. And our enthusiasm waned when told a minimum of three plots must be purchased to have a bench.
There are many residents of Forest Lawn who over the last three centuries have erected more than mere benches: monuments and mausoleums costing well over a million in today’s dollars. Awesome in their architecture and artistic flair – quite stunning!
A teacher, still living, purchased several plots in the middle of Forest Lawn and then engraved an unpublished short story he had written, in its entirety, on two massive stones. I read the sweet story but walked away wondering about human beings search for remembrance and possibly immortality.
And then there was the family who wanted to inscribe something profane that the deceased was frequently known to say. The manager nixed that. Children visit Forest Lawn.
An unmarked burial site
And then there is juxtaposition. On the morning we purchased our plots, the cemetery manager was late for our meeting because he had met a middle-aged woman who had wandered through Forest Lawn for a couple of hours looking for her grandmother’s grave. She waited 10 years to look for it. There is obviously a story here, but the manager’s concern was that she had been looking for hours on a hot morning and was becoming dehydrated. A search of the cemetery’s database located the unmarked site where the grandmother had been interned 10 years ago.
Back to me. Why do I want to be buried in a beautiful park in the middle of Buffalo; a cemetery locally famous for its rolling hills, fascinating monuments, and rich history? Honestly, it is because it increases the chances that family and friends might more frequently come here to exercise, stroll or picnic on a summer day, and in coming to Forest Lawn pause and REMEMBER me. I am not completely comfortable with this realization. Afterall, I will never know who has visited the site of my bones. And, I will not care. I will be in a place much more glorious.
Cemeteries are certainly reminders that we live in a broken world in which none of us will survive. We will all die, and each culture and individual have customs or preferences as to how to honor the deceased. Some will defy customs and choose radically different expressions for their worldview. My hope is that all worldviews will give way to God’s eternal view.
Burial sites, whether unmarked or colossally grand, will matter none to the eternal creator and sustainer who embraces those that trust him to deliver them from death! There is a place where we will be immortal. Earlier in this post I noted that my plot has a view of my favorite sculpture in Forest Lawn. This sculpture pictures that time of the great resurrection, where we are lifted into the arms of God. (1 Corinthians 15 develops the full impact of this.)
And then there is the famous monument in Utah for Matthew Stanford Robison, who, born paralyzed, died in his sleep at 11 years old. A poignant vision of the resurrection, it captures perfectly that time when we Christians believe that “all sad things will become untrue.”
Our 9-year old grandson accompanied us on one of our visits to Forest Lawn. He noted that many headstones were ideally positioned for jumping and climbing from one to another. We reluctantly told him that would be inappropriate. He told us he wanted his tombstone inscription to say, “Children are welcome to climb up and play here.”
Jesus will think that is just fine. (Matthew 18:1-5)
It has been a long day. I just finished chemo. I am in the Roswell Cancer Institute imaging clinic, waiting to be called for a brain scan MRI. David left to get groceries and prepare a late supper. I am disappointed, discouraged, teary-eyed, and, to make matters worse, a bit embarrassed.
7:00 pm
As I wait, I take the advice I gave to clients for years and have blogged about more than once: start journaling about the angst.
Confession:
I have been complemented by family, friends, and medical team on how well I’ve handled an abundance of difficulties throughout this process. And yes, I have felt validated respected and brave for my “handling it all so well.”
And yes, I have attributed my persevering, positive attitude to my dependence on God’s faithfulness towards me no matter what happens.
But over the last two days something started to emotionally unravel. It started with overreacting to my husband’s innocuous comments yesterday but thankfully having it all resolved quickly, more thanks to him than me.
I want to blame this emotional roller coaster on the steroids I am taking to heal the liver from an unfortunate turn in the immunotherapy treatment.
But…. Something other than steroid-craziness is going on.
My ‘end-of-the-rope’ was bound to come but I thought it would come at the ‘end-of-the-road’ when all treatment options have been tried and failed, therefore reclassified as terminal. Another counselor told me once that when you reach the end-of-your-rope – the point where you cannot climb back up but cannot lower yourself further – it is time to let go and trust in God. I love that image. I have rehearsed that end-of-rope/end-of-the-road moment too many times to count. In that future scenario, when told there is nothing else that modern medicine can do for me, I picture myself demonstrating great faith and even love and gratitude for my wonderful medical team. I become some kind amazing hero of faith in my eyes and in others. Ah, the follies of ego!!!
But I am having an end-of-rope moment now. This morning, I had an unexpected call from my oncologist to come in for an unscheduled visit. I was hoping he wanted to discuss weaning me from steroids. The opposite happened as my liver enzymes had gone up. He has increased, slightly, my steroid dose; meaning less sleep and immunotherapy still off the table.
I had an unexpected reaction to the consultation. I got visibly frustrated and hurt. Tears!
The irony and hypocrisy of the reaction is that yesterday I had complained to friends of hearing of cancer patients reacting similarly, being unreasonable and unfair to their medical providers.
Not that I went ballistic. Hospital security was not called. But I had tears of frustration, and I over-questioned my healthcare providers. I argued about use of words. “You say ‘increase’ in liver enzymes but I say, ‘slight uptick’ when I look at the graphs.” After spending more time with me than I deserved I patted my oncologist on his hand as he was leaving, an apology, of sorts. But it did not end there: as I was led to the chemo chair, I was told that my oncologist had just ordered in addition to the chemo an hour of saline for low sodium before the infusion. Come on! My feet were already in a crazy swollen state of discomfort I questioned the purpose of this. I asked the infusion nurse several times to call the oncologist finally reconsidered and gave me what I wanted. (If the low sodium was acute, he would have won that skirmish for sure).
8:00 pm
Back in the imaging waiting room, the technician finally called my name for the MRI. As we are walking to the imaging room, he said the scan would not take an hour, as I assumed, but only 15 minutes. That simple correction somehow, in some way, flipped the mood switch. Delighted, I became my friendly chatty self as I sensed that joy was beginning to take hold again.
The Lord heard my lament and gave me hope. David is thankful to see the smile back on my face!
9:00 am, Tuesday, August 9
But I cannot leave it at that. It is tempting to think of God smiling at us with approval when we are behaving graciously and mercifully to those around us especially when we are suffering and amid disappointments. Conversely, we imagine him clucking his tongue when we are miserable, irritable, and faithless. The thing about that is that it does not typically lead to a heart change. Why? Shaming is not affirming or inspiring. It gets us stuck in a spiritual arrested development. Spiritual maturity on the other hand fills us with the knowledge of God’s love that surpasses our understanding (Ephesians 3:19).
He made us to trust in his unfailing and never changing love. It is who he is, and the operative word is grace (unmerited favor).
Neither you or I can make God love us more or less by what we do when we have already thrown our hat in the arena of God’s faithfulness. And in a mysterious, wonderful way we are changed and willingly motivated to continue the good fight of our faith. (1 Timothy 6:12) We can let go of the end of the rope.
And, as Paul writes, “No eye has seen, and no ear has heard, and no mind has imagined the things which God has prepared for those who love him.” 1 Corinthians 2:9
This is something to fight for, something to live for!
Consistent, restorative sleep has eluded me for over 20 years. Therefore, an image so often talked about in the New Testament – falling asleep in Christ – has come as an unexpected comfort.
“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace.”
Victor Hugo
“That we are not much sicker and much madder than we are is due exclusively to that most blessed and blessing of all-natural graces, sleep.”
Aldous Huxley
“I want to die peacefully in my sleep, like my grandma.
Not yelling and screaming, like the people in her car.”
Anonymous
I love to sleep but for the last 20 years consistent, sound sleep has remained tantalizingly out of reach. So desperate for sleep at times I have found myself looking on with envy at homeless folks asleep on benches. When I was first diagnosed with breast cancer in 2014, I immediately discussed sleep with my oncologist. I assumed that cancer worries along with cancer treatment would be the end of sleep for good.
Sleeplessness in any degree is one of humanity’s great annoyances. Internet searches (not good sleep hygiene to do at night) are endless in describing and suggesting ways to recover our bodies’ routine and therapeutic need for the sandman’s nightly visits. Why he refuses to come and satisfy some of us is anybody’s guess. But for sure we cannot do well emotionally or physically without sleep. Twenty years of insomnia has left me wanting to strangle the sandman. Going for stretches without sustaining sleep has at times been as emotionally painful as my struggle with metastatic cancer.
Worrying about endings
A few people with metastatic cancer might not entertain thoughts about how dying might go for them. I am not one of them. Like the confession of the late Billy Graham, I too am not afraid to die as I have confidence in Christ receiving me, but I do worry sometimes about how I may die. I am like most people who would vote to die unsuspectingly at an incredibly old age at the end of a productive, meaningful life while SLEEPING!
To Fall Asleep in Christ
I recently landed on a book, Dying Well, by John Wyatt. The author, a British medical consultant and devout Christian, has witnessed many people in the last stage of their lives and offers insightful, encouraging, and very practical suggestions for believers facing death from illness or old age. This book is for anybody who is eventually going to die. Yes, we all should push the pause button of our busy lives to think how we would like our endings to go before the end is close.
Wyatt’s chapter describing what it means to “fall to sleep in Christ” was particularly comforting. To “fall asleep in Christ” is the term used in the epistles for the believers’ death. Jesus in the gospels and the apostle Paul in his letters describe the death of a believer as residing in a state of sleep awaiting their new eternal life. The early Christians understood something about this image of death. It is one of the reasons they had the courage and hope to withstand all manners of persecution and death. At death, the believer is, as in sleep, unconscious and unresponsive but none the less a person fully alive, being held safely by the love and power of Christ.
I have known the biblical expression for believers’ death for decades but never has the term meant so much to me as it does now; nor has it provided such hope and reassurance as it does now. Falling asleep in Christ to be woken up to the most glorious reality of all is my great hope and desire. I love sleep, I long for it and when I awake having had a good night of sleeping, I am exhilarated. So now as the pesky death and dying thoughts resurface so does the gentleness of the sleep metaphor. Is this pie in the sky thinking to make the reality of dying easier to swallow? No and yes! No, it is not the pie in the sky. The truths of scripture and God’s love for me did not originate with me and will not end with me. And yes, life after death has been the great Christian hope for people from all over the world for centuries. As Paul said, “if only in this life we have hope in Christ we of all people are to be most pitied.” (I Cor 15:19) According to John Wyatt, we can deduct from 1 Thessalonians 4:13-14 that “Jesus experienced the full reality of death so that we might fall asleep,” never having to know abandonment from God’s loving presence. Hallelujah! My imagination has taken a turn from the dreaded to the blessed! Falling asleep in Christ means resting in peace to be woken up by the lover of our souls at the culmination of history.
“Lucy woke out of the deepest sleep you can imagine, with the feeling that the voice she liked best in the world had been calling her name.”
Cancer metastasis tempts me to see all of life and relationships pivoting around the cancer diagnosis. If I’m not careful cancer becomes the only lens from which life is observed. It’s clearly understandable. Cancer demands attention. But as it turns out there is so much to life that cuts into the self-absorbed cancer life.
Story telling
I love stories; especially the real-life ones.
I love telling stories and not just stories about me and mine.
I love other people’s stories and draw awe, inspiration, humor, human pathos, delight and enjoyment from them as if they were mine.
I just don’t enjoy stories; I absolutely need them to keep me grounded and connected to people and to God.
Heroism, desperate need met by extraordinary compassion, grit and human feats of endurance, discovery, invention, sacrifice, visions, dreams, revelations and miracles are stories that I will tell if I have been privileged to know of them. I tell many, many, many stories.
A story of dear friends Audra and Jeremy are adopting a Down syndrome 19-month-old – nicknamed Hank – who is in an orphanage in India. They have never adopted or fostered. Audra has never been in a foreign country other than Canada (that doesn’t count), but she could not be more fearless, committed and excited. Passionate love has taken hold of her. Before she was dissuaded by the adoption agency Audra was determined to foster Hank in India for 3 to 4 months until the last court hearing and all documents were in place for her to bring him home. Audra and Jeremy were undaunted by obstacles; even the challenges of leaving her other three children in the care of Jeremy, the Dad. This couple was propelled by extraordinary and extravagant love. They only knew love’s longing to take Hank out of the orphanage, care for him, and ultimately bring him home to be part of his new family and church community; each which await his arrival with joy and anticipation.
The Bad Math of Jesus
God as shepherd and us as his flock is a common motif in the Bible for describing God’s love and devotion for us.
This parable is one of my favorites for describing the extravagant love of God towards his children.
Matthew 18:12-14
Jesus said, “What do you think? If a man owns a hundred sheep, and one of them wanders away, will he not leave the ninety-nine on the hills and go to look for the one that wandered off? And if he finds it, truly I tell you, he is happier about that one sheep than about the ninety-nine that did not wander off. In the same way your Father in heaven is not willing that any of these little ones should perish.
So, what is the big idea in this story? The extravagant love of Christ can look foolish, indulgent, and possibly even irresponsible at times.
Phillip Yancey has called this the ‘atrocious math’ of Jesus.
The shepherd leaves the 99 on a hill, not in a sheep pen or in the care of another shepherd. No! He leaves them on a hill, vulnerable and unprotected so that he can seek after the one sheep that has wandered away.
Does the shepherd not care about the 99 because his favorite sheep, Fluffy, is the one who wandered off? Of course not. There are no favorite sheep in this story. There’s no Fluffy or Nemo or Benji because this is not a story about animals. No one sheep is the hero in this story. The only hero is the shepherd who wants his sheep, all his sheep, home with him. And he will put himself and the other obedient 99 at risk in order to go after one foolish and wayward sheep to bring her home. The extravagant, sacrificial love of God is the big story here.
Audra and Jeremy’s love for a disabled child is today’s big story for me. But this love is extravagant and some including myself had wondered whether it is too extravagant. Extravagant, sacrificial love motivated by Jesus’s spirit and example is only thing that can explain it. And Audra and Jeremy would agree. They see it as a calling given by God of which they are delighted to follow for the rest of their lives.
Be inspired but more importantly respond to the calling of God to bring you home. And when you do don’t forget to be grateful and thank Him that his heart is bigger than his numerical calculations.
Being known by name is significant and a comfort in the midst of difficulty.
Naming tumors is a real thing. And I don’t mean naming the specific type of cancer. No, these are pet names. Arnold, Terminator 1, Terminator 2, and disliked politicians are common tags assigned by cancer patients. Most people report that naming their tumor is an empowering exercise allowing them to wrestle back a little control from a bully.
Unfortunately for me, I would need a baby naming book in order to find names for all the little tumors that are floating around. Fortunately, I’m not attracted to the name-your-tumor game but I’m not judging those who are. Whatever helps cancer patients not feel so helpless is probably a good thing.
But I’m intrigued by the need to name a thing or person. Assigning names, being referred to by names, labeling objects by names, and finding meaning in names fosters connection and intimacy to each other, our environment, and, apparently, our diseases. The importance of naming is found in both Testaments. Being named, having a name carries spiritual significance. God revealed his name to Moses. Jesus was named Immanuel, ‘God with us.” Both Peter and Paul were renamed by Jesus.
When I was first married, I complained to my husband that I wanted to hear my name spoken by him more often. Hearing my name by my beloved made me feel special to him and more connected. It capped off the special relationship we shared. No doubt he was initially perplexed by this marital complaint but happy to accommodate.
The following verses in the gospel of John at Christ’s resurrection are exceedingly meaningful and tender to me (emphasis mine):
John 20:15-16
He asked her, “Woman, why are you crying? Who is it you are looking for?”
Thinking he was the gardener, she said, “Sir, if you have carried him away, tell me where you have put him, and I will get him.”
Jesus said to her, “Mary.”
She turned toward him and cried out in Aramaic, “Rabboni!” (which means ‘Teacher’).
Imagine her relief, her love, her comfort to hear her name spoken by the Lord at such a time. It’s an image that carries me through this harrowing medical ordeal. Imagining the Lord of the universe saying,
“Dona, I’m here with you.”
“Dona, I’ve got this, don’t be afraid.”
“Dona, you will be with me forever.”
I don’t feel a need to name a tumor or tumors to feel more empowered or in control. He knows and calls me by my name. That is enough. That is everything.
What cancer has taught me about the joy of missing out (JOMO)
As it turns out an antidote for the subject of my most recent post, FOMO (fearing of missing out), is JOMO (joy of missing out). JOMO is basically saying “no” to the push to stay busy and connected with whatever presents itself in order to say more ‘yeses’ to activities that are more in-line with our values and interests. Many are jumping on the JOMO wagon. Productivity gurus are incorporating JOMO in their training. Stressed out working moms have self-help books to achieve JOMO. CEOs are trying to find balance and enjoyment within the pressures of fierce business competition. It’s all part of a new cultural phenomenon – searching for peace and joy within a world of relentless busy-ness, competition, and high expectations.
At first blush the acronym, JOMO, seemed forced and naive to me; but then I realized that it was exactly what David, my husband, and I were attempting to do since my diagnosis of stage-4 cancer. Doubling down on the present and embracing joy is integral to the 3-part strategy my husband and I developed to cope and grow.
1. Pursue the best possible treatments for the best possible outcomes.
2. Double down on the present. Experience joy where we can find it.
3. Think deeply about eternity.
And there is evidence that we are doing just that. Laughter has always been coveted in our relationship but there is now more of it as we appreciate grandson antics and their hilarious comments. There is more laughter as we look for the amusing in ourselves and others; reminding ourselves to not take ourselves too seriously. There is more laughter as we retell shared funny experiences. There is joy as we actively pursue our passion to see marginalized people treated with God-given dignity and value. There is joy as we worship in church. There is joy as we enjoy the natural beauty around our creek cabin. There is joy of family and friends. There is so much joy and delight in our lives that we’ve been blessed with. We are grateful. But ….
• This is easier to do if I’m not in pain
• This is easier to do when I have had some distance from a disappointing oncology appointment.
• This is easier to do because it is my story and not a loved one’s.
In other words, there is within the JOMO movement a limitation. There is an exclusion clause, unspoken but nonetheless imbedded in its good intentions. Stopping to smell the roses sometimes leads to being stung. Being stung too many times can lead to anaphylaxis. Smelling a rose must give way to getting help to breathe. There are life experiences that leave us limping along, breathless from the sheer pain and exhaustion of life’s journey. Sometimes I feel like that. JOMO becomes elusive at best and downright annoying at worst. And so I cry. (See: More on finding comfort from God.)
It’s here that the 3rd part of our strategy takes dominance over the “doubling down on the present.“ Thinking frequently and intentionally about eternal life with the God who loves me is fundamental to any nod of acceptance and significance that I give to JOMO.
“So Heavenly-minded that a person is no earthly good” is not born out in the course of my life nor for countless others. It’s quite the opposite: becoming more heavenly-minded has prompted the Jesus-committed to do what can be done to effect positive change in this world while at the same realizing that Christ will ultimately set all things right. And some have made great sacrifices to that end.
But what about the fear of missing out on all the beauty and companionship of this world?
Many years ago, my two young daughters and I were riding our bikes together in our neighborhood. The balmy gentle breeze of a Virginia springtime with its blooming azaleas and dogwoods, greening weeping willows, and scented pine and magnolia underscored the laughter of my girls. I was filled with an inexpressible Joy. I remember silently thanking God while at the same time bemoaning that it wasn’t going to be ours for long. A transfer to another location in the country was imminent.
I longed for permanence in beauty and perfection. It was then that I realized for the first time that the aroma of magnolias and the music of a child’s laughter were only clues and hints of glory – not yet fulfilled nor meant to be. He has placed “eternity in our hearts”. (Ecclesiastes 3:11) The permanent, perfect, and pure in love and beauty would my inheritance. I think I can wait. Lord, help me wait.
“Death Cafes” are springing up in cities throughout the world to address the subject of death and how-to live with death’s inevitably.
Apparently, the movement was started to give people a “safe place” to talk about death without being accused of morbidity. Billed as a philosophical inquiry on mortality, people looking for a grief support group will be disappointed. “Eat cake, drink tea and discuss death”, is the benign motto. The decor includes mugs, teacups and posters with creepy skulls, skeletons, and ravens painted on them. I admit that I’m put off by the skull mugs in the Death Cafes.
But these venues and discussion groups deserve more than half a point. The vast majority of Americans live in the mythical state of immortality. ‘Mythical immortality’ (my term) is the belief that other people die, I don’t. (See, ‘I Like the New Metastatic Me’) When we do think about death it is in the context of avoiding it. Anne Patchett writes:
“The fact is, staving off our own death is one of our favorite national pastimes. Whether it is exercise, checking our cholesterol or having a mammogram, we are always hedging against mortality……Despite our best intentions, it (death) is still, for the most part, random. And it is absolutely coming.” 1
Death cafes, though they deal with an inevitability ignored by most, do not capture rightly the travesty of death or the Christian hope of triumph over it.
The point of Death Cafes is to make death less fearful in an age of anxiety. I get it. But the death mug approach to the subject does not capture the travesty of death. I say travesty because the Bible makes it clear that death is an enemy that is finally destroyed with the coming of the new heavens and earth at the culmination of time. And that is where the Christian hope comes in. The story is not over with our deaths. There is the hope that Christ ushers us into his glorious presence where every tear is wiped away and grand reunions are still to come. So maybe what I could benefit from would be a café whose moniker is “death does not have the last word”. A safe place where my faith tradition is shared with others so that I hear stories about people who have died well within the confidence of being on the threshold of an eternal reality. Granted my death café sounds a bit exclusive as it would possibly not be very attractive to secularists or folks from other faith traditions; but at the end of the day, with facing my own mortality I want to hear a café filled with conversations about hope, faith, courage, love and forgiveness. I want to hear and talk about Jesus. I want to live life in the moment with increasing gratitude. Hearing stories about people who lived well up to the moment of their deaths is my cup of tea and I will happily eat some cake while doing so.
Ann Patchett, “Scared Senseless,” The New York Times Magazine, October 20, 2002.
“I want to die peacefully in my sleep, like my grandma.
Audra and Jeremy are adopting a Down syndrome 19-month-old – nicknamed Hank – who is in an orphanage in India. They have never adopted or fostered. Audra has never been in a foreign country other than Canada (that doesn’t count), but she could not be more fearless, committed and excited. Passionate love has taken hold of her. Before she was dissuaded by the adoption agency Audra was determined to foster Hank in India for 3 to 4 months until the last court hearing and all documents were in place for her to bring him home. Audra and Jeremy were undaunted by obstacles; even the challenges of leaving her other three children in the care of Jeremy, the Dad. This couple was propelled by extraordinary and extravagant love. They only knew love’s longing to take Hank out of the orphanage, care for him, and ultimately bring him home to be part of his new family and church community; each which await his arrival with joy and anticipation.
wanders away, will he not leave the ninety-nine on the hills and go to look for the one that wandered off? And if he finds it, truly I tell you, he is happier about that one sheep than about the ninety-nine that did not wander off. In the same way your Father in heaven is not willing that any of these little ones should perish.
and finding meaning in names fosters connection and intimacy to each other, our environment, and, apparently, our diseases. The importance of naming is found in both Testaments. Being named, having a name carries spiritual significance. God revealed his name to Moses. Jesus was named Immanuel, ‘God with us.” Both Peter and Paul were renamed by Jesus.
As it turns out an antidote for the subject of my most recent post, 
Many years ago, my two young daughters and I were riding our bikes together in our neighborhood. The balmy gentle breeze of a Virginia springtime with its blooming azaleas and dogwoods, greening weeping willows, and scented pine and magnolia underscored the laughter of my girls. I was filled with an inexpressible Joy. I remember silently thanking God while at the same time bemoaning that it wasn’t going to be ours for long. A transfer to another location in the country was imminent.
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