I feel, I hear, I know, I think, God that you are real and I am small, standing here in my bare feet, I feel my heart, Beat Beat Beat the rhythm of life pulsing through my simple veins, with each pump your grace rains, through the corners of my body and soul, Life God, Life, I need more of you, Take me to where you are! the rhythmic corners of your beating heart, on the Street, where People meet, the Divine is seeking, to find and gather, those who are Scattered, Up Down Around and All about.
We are all dying. Some of us are just going about it faster than others. Here’s the thing, though; you don’t know how quickly you’ve been dying until it occurs. Death happens to you; you don’t happen to it. The 16th-century French essayist Michel de Montaigne said this: “If you don’t know how to die, don’t worry. Nature will tell you what to do on the spot, fully and adequately.” The Roman orator and statesman Cicero put it another way. To philosophize (or, in my case, to theologize) is to learn how to die. ” I’m in school every day. My dad has cancer, people I went to high school with are dying, colleagues are going into cardiac arrest, my denomination is on life support, and who knows how long I’ve got. If I do the math with the meds I take and the average life expectancy of someone in my shoes, I should move from the parsonage to a tent in the cemetery. Believe me; I’m not being morbid; I’m only considering ways to save my family money.
If you read through anything I’ve written, you know it’s been a brutal fall and winter for my family and congregation. COVID, cancer, and related misery have taken their toll. When combined with the suffering we want to remember worldwide, our hundred-plus-person prayer list is more than many of us can continue to bear. We are, as Psalm 40 says, in the mire, the mud. But, as I said a few weeks ago, we keep searching for a better way to pray.
My office phone rang at about 1:30 this afternoon. Someone had died. We would need to open their plot in the church cemetery to prepare for a funeral on Saturday. That’s how death works. I’m not talking about the biological mechanics of death. This person’s life and quality thereof ended long before his widow called. Most of the dying process (biologically and spiritually) happens before the person dies. Grief comes at the graveside. Grief is the empty room. Grief is calling a name and hearing no response. Death is now. Death is a front-row seat to life shutting down, emotional walls being built, fears being conquered, and life being lived despite, well, despite.
To paraphrase the Baghavad-Gita, we are both life and death, coexisting simultaneously. Despite death, there is life. Despite life, death remains. When we pull back the simplistic Cartesian veil of existence, we find ourselves somewhere in the middle with each other. Scoot over and make some room. Each of us needs to find a place, a community, and a home in the community of learners. Why? Because no one will make it out alive, and it is from that community of those who remain that we will learn to carry our grief together.
This winter has been hard on my congregation. So many people are sick with COVID, respiratory viruses, and other diseases that it’s becoming difficult to keep up with everyone. When I combine my congregational concerns with my father’s recent lymphoma diagnosis, I start dropping the balls I’m supposed to juggle daily. I went so far as to create a spreadsheet of prayer concerns (versus a list). It didn’t help. Once I got them down on paper, isolated in illnesses, homebound and hospitalized, church members, family, and friends, adults and children, life-threatening and chronic conditions, humans and pets, Ukraine, and America, I was even more overwhelmed. Where do I start? At the top? With the sickest? With my dad? The sheer human misery before me is too difficult to describe. I’m at the point I don’t know what to say to God about these concerns because I don’t know what to say. I am literally out of words.
I gather with a small group of church members to pray through our concerns and celebrations each Thursday at 10 am. After a few moments of Lection Divina, we read through each name and concern on our church’s prayer list. There are nearly 100 names. I wonder why we are reminding an omniscient and omnipotent God of realities of this God is already fully aware of. The exercise feels pointless. If God requires the constant repetition of my father’s name and the fact that he has Leukemia to bring him daily healing and comfort, are we praying to a God? Or are we just talking to ourselves? Is prayer, in the means we’ve constructed it, little more than a supernatural protection racket? We keep giving God our best words in the hope of blessings and eternal security, so bad things don’t happen to us. There must be a better way to pray.
Is there a means of prayer that does more than make us feel better by acknowledging our helplessness in the face of illness and tragedy? Are there prayers where we partner with God to help those who pray create and become the answers to their prayers? It’s gotten to where I don’t look forward to asking for prayer concerns and celebrations in our worship services. These are the most soul-crushing minutes of our worship hour. I do not want to deny anyone the opportunity to share their concerns. Yet once we share our pain, the joy leaves our sanctuary like air from a punctured tire. Persons with blessings feel too ashamed to speak up because they feel their prayers aren’t worth mentioning considering the “serious” concerns previously shared. That’s wrong as well. We must rethink how we pray, for whose benefit we pray, and if we’re praying to be heard by God or each other.
The most honest and genuine prayer I’ve been able to offer recently is this: “Look!” “Help” hasn’t gotten me anywhere. I’ve settled on the model of the minor prophets. If I’m asking God anything, I’m asking God to do what I know God is already doing: see the mess we’re in and, if possible, relieve some of this interminable suffering. I’ll be glad to do anything. I’m just tired of repeating names and recounting suffering. Point me toward one person who needs something tangible. That’s a doable place to start. We can answer prayers together.
We are waiting to see if the medicine is working. These things take time. I hate watching, listening, and trying to detect the slightest changes in his voice, eating habits, or outlook. The interplay between life today and the unknown realities of death trying to emerge tomorrow lurks behind every conversation I have with my father, mother, wife, and children. Unspoken yet spoken, their reality is ours. Will the copay be reapproved on January 1st? Despite all this weirdness, did they enjoy our attempt to have a “normal” Christmas? Is this the right medicine, and will it work?
At this moment, all indications are that he feels better; for some reason, it feels awkward and unreal. Things seem to move at either a snail’s pace or at a rate that doesn’t seem reasonable to believe. Do I only have the perception that he feels better? Does he feel better because he’s started the medicine, or is the medication really doing what it should? He’s only been on the treatment for over a week, experienced little or no side effects (that he’s told me about), and admits his latest blood work slows the slightest of changes in the right direction. Since he’s been on the medicine, nothing has gotten worse, and a few of the numbers have improved by a tenth of a decimal point. That’s where we’re finding hope. If a number moves one way at the level of a tenth or hundredth of a decimal place, it’s answered prayer, a reason for hope. If the red blood cells go in the other direction, what is it, despair and apprehension at the impending immediacy of death’s inevitability?
Perspective is everything. If your prayers are being answered and your father’s healing doesn’t seem like a false start but the real deal, you will have a good perspective. So for the moment, I’m holding back on my perspective. I’m grateful for what I’ve got, but I need more results before I need to say anything more than that.
The medicine finally arrived. Duly marked with labels indicating the radioactivity and biohazard contained within, with warnings proclaiming, “Chemotherapy Drug.” It’s a jarring image, a far cry from the friendly paper bag that our neighborhood pharmacy places my statin drug in once a month. Once you open the box and encounter that label, even before you get to the bottle with the medicine, it’s as if the universe is giving you one last warning: do you want to live or die? Do you want to ingest this distilled form of chemical or radioactive poison into your body to kill cancer cells or boost your red blood count? You have one more opportunity, and this is it. You can’t say we didn’t warn you. That’s what a label like this is trying to tell you. If you go down this road, this dance you’re doing with death is about to become more intimate. The label asks, “are you ready for that degree of mortal intimacy?” If you are and you trust your doctor, it’s time to move past the label and live life on a delicately balanced, biologically hazardous chemical edge.
He may have the medicine in hand, but I’m still scared. When will the side effects start to kick in? Will he tell me? I doubt it. I offered to come and sit with him for the first 48 hours. He wouldn’t hear of it. His support network there would look after him. Now, I will have to look on from a distance, at scary drug labels, and listen for subtle, desperate changes in his mood, voice, and tone. Or I can roll the dice and show up at this front door bearing groceries and love. I can say, “I’m staying for a few days, and I don’t give a damn what you think.” I do have options. I can be the answer to my prayers.
There are practicalities. We may have won the battle, but the war is not over. The medicine took too long to arrive, and it’s only approved until the end of the calendar year. We’ll have to go through this same struggle with the insurance company, the doctors, and maybe the VA once again in a matter of days.
The insurance company said they wouldn’t pay. In forty-eight hours, they gave an outright denial. How do you like them apples? A man is dying of cancer. A series of oncologists and hematologists at two hospitals decided on the proper medical treatment for this specific cancer and prescribed the appropriate medicine. It is an expensive medicine by any reasonable standard for those with and without insurance. The specialized pharmacy receives the request to prepare and ship the drug upon authorization from the insurance company that they’ll pay for the medicine. The insurance company says no. Who are these nameless people who’ve decided my father should die or receive a drug less effective than his doctors deem necessary? I want to meet them. Will you look me in the eye? Did you go to Sloane-Kettering for your residency? What do you know that his doctors, those who gave him a first and second opinion, do not know? Or is it solely a question of money? Paying out of pocket isn’t an option. Death, however, is always out there just beyond the horizon. There’s no copay for death. It may be easier on the pocketbook, but I’m told it’s emotionally draining and spiritually painful for the dying and those who love the dying. I guess this is my life now.
We appeal their decision. I say “yes” to life. Scripture asks, “death, where is your sting?” Paul, I can tell you. It’s in a rejection letter from Aetna.
How do I tell this story? It’s not about money, doctors, pharmacists, and insurance companies. Yes, they have their role to play. Even if you have decent health insurance and money in the bank, being diagnosed with cancer at the end of the calendar year is frightening. You know how some criminals are sentenced to two life sentences without the possibility of parole? Getting a cancer diagnosis in December is akin to receiving two death sentences at this same time.
This is because everything you’re required to pay out of pocket to begin your life-saving treatment in December, you’ll have to pay the exact amount again four weeks later in January. Although you’re only being treated in one month of 2022, you’re paying a copay (several thousand dollars) that is set for 12 months of treatment. You’ll pay that same exorbitant amount for the next 12 months in January. It’s the double whammy of double whammies. The following 11 months should be less of a financial burden. However, you’re starting with one heck of a hit. You and I know that poor people without financial means die every day when they shouldn’t. They could have accessed a life-saving treatment if they’d only had a few thousand dollars in the bank. What’s money when it comes to human life? Everything.
People will make hard moral and ethical choices to decide whether to buy food, find shelter, provide for their children, or pay for the medicine that might prolong their lives. We’ve created a world where these polarities exist and are far too comfortable living within them.
My dad can pay his copay for this year and next. Some people would use the word blessed. I prefer to say lucky. I like the old expression, “there but for the grace of God go I.” When I look around and see hardworking people struggling to make ends meet, struggling with life-threatening illnesses, and still getting knocked down each day, life seems random. Bad things shouldn’t be happening to these good people. They’re doing life right. They’re paying their taxes. They’ve raised kids who aren’t a drain on society. They’re in church, praying and helping their neighbors. Yet one wrong blood test, MRI, or CAT scan and their world can unwind in the blink of an eye. It’s not fair. Life ought to be fairer, but it’s not.
Yesterday, my father cried. In 48 years, I’ve never seen or heard the man choke up or cry. Someone from his church, simply out of brotherly love and God’s grace, came to him and gave him the money to pay the entirety of his copay for 2022, so he could immediately begin his treatment. His friend knows he could afford it, but he also knows that it’s not a gift my father (a man who would give anyone the shirt off his back) would give himself. My father had never received such a tangible display of God’s grace and love.
Grace makes you uncomfortable and overwhelmed. It will throw you for a loop. Words like “how” and “why” are the only thing you can say. You will believe that you are not worthy to receive it. Grace looks like a gardener, not a risen Savior. A man walking along the road from Jerusalem to Emmaus appears to be a random well-informed traveler, not the risen Lord. Your first reaction to Grace is disorientation and disbelief. Grace is a big deal. It is unmerited, and it just shows up. Thank you for sending it. It’s my job, your job, to pass it on. Spread the awkward, uncomfortable, overwhelming Good News of the Gospel of God’s Grace. Life may not be fair but grace, by God, is.
My dad is ready to start his treatment. The doctors have decided to start with experimental oral medicine. The side effects sound horrific. What did I expect, the occasional headache and rash? No, the treatment appears as bad as the cancer itself. When he left the doctor’s office this morning and told me the name of the drug and the facts, I couldn’t believe what I heard. This was going to be as awful as I expected. I guess because he’d waited so long since the biopsy, we’d been lulled into a sense of complacency. Whatever he took would be a pill, like a Tylenol, that would magically increase his red blood cells, and he’d feel fine in no time. How could I have been so stupid? It was never going to be that easy. We may have wanted it to be simple, but that was a fantasy. Today, the balloon burst and reality hit home.
I told him this wouldn’t be the kind of medicine he could pick up at CVS or Walgreens. I was right. I hated being right this morning. He called me as he left the doctor’s office.
“You can’t just go by CVS to get this medicine,” he said. “You’ve got to order it and then FedEx it to the doctor’s office. It’s going to take another two weeks.”
I knew this would happen. He’s got cancer, it took almost two weeks from reading the biopsy to get the prescription, and now we’ll wait another two weeks to get this high-powered drug. I didn’t want to gloat about being right, especially when he said that his red blood cell count continued to fall, and the doctor said if it went much lower, he’d need a blood transfusion. The man has no energy. It’s hard to see him unable to do anything without becoming exhausted and fatigued. That’s not my dad. I could hear a sense of desperation in his voice for the first time. When I was there at Thanksgiving, I could tell he was tired. Today, however, I hear despair. This scared me. I don’t quite know why this frightens me.
He told me the co-pay for the medicine would be $3000.00 a year. Let that sink in a moment. I wonder if that despair I heard was him wondering if his life was worth an extra 3000 dollars a year. Sure it is. There’s not a debate. He can afford it. If the starts the medicine now, in this calendar year, he’ll pay 3,000 dollars now and again on January 1st.
Perhaps he, like me, was thinking about those who get their biopsy results, receive a diagnosis, and are told they can take medicine, which will immediately cost $3000.00-$6,000.00, and they hear a death sentence. What do people who can barely afford to live, pay bills, buy gas and food, and pay for their housing do when faced with lymphoma? Do they die slow, painful deaths while insurance companies and the medical-industrial complex take thousands of dollars from those who can afford to pay? Yes, people die like this every day.
Meanwhile, I preach Jesus as the reason for the season and shepherd a church where the most significant issues seem to be the scriptural authority and human sexuality. But, boy, are we wrong. We could be a voice for the voiceless in our pews and community, those marginalized dying who have no resources for life itself. But instead, we fight over the context of two thousand-year-old words in dead languages that are dividing the living faster than cancer cells.
A $3000.00 co-pay for any lifesaving drug is a crime. It is a sin against both God and man. I’m not sure anyone could write a prayer of confession to get humanity off the hook for causing people to choose between life and food, life and rent, life and work, life and children, life and anything. I’m not sure of much of anything anymore. God have mercy on our souls. O Come, O Come Emmanuel.
It becomes harder to pray as I look around at near-daily mass shootings, the war in Ukraine, my family’s illness, and the deterioration of my denomination. I feel like I’m talking to myself. Prayer seems like the only thing I can do, my only option, and it doesn’t appear to have any impact on the carnage unfolding in Walmart breakrooms, at the Raleigh Christmas parade, in a Colorado Springs LGBTQI club, in my dad’s lymph nodes, or missile attacks on Kyiv’s elementary schools. People keep dying at the worst possible time of the year for people to die.
Tragic, unexpected death is never welcome, but it always seems worse when it happens at Christmas. For some reason, we want to be together at this time of year. Despite our petty differences, we feel drawn to the Thanksgiving and Christmas table. When a seat is made vacant, whether through cancer, murder, or war, it hurts in indescribable ways, that’s a pain you can’t put into words, let alone prayer that has any emotional or spiritual coherence. Our prayers are more like self-soothing babble because that’s all we know how to do. If you can find eloquent words to match this societal hurt, you’ve not felt the punch in the gut brought by the cumulative pain of recent days.
When we pray on Sunday morning, the only people we know who are listening are those in the pews. It is a supreme act of faith to assume that God is listening, especially when our words appear to have little impact on reality. We pray for peace and see more war. We pray for love to see hate grow stronger. Something isn’t working. We’ll focus on a single miracle at the expense of hundreds of unanswered prayers. We sit, wait, speak, and hope God will act. Our prayers, while heartfelt, are inherently passive. Have we considered acting upon our prayers? What if we matched our words and our actions equally? We become both prayer and an answer in-progress. Imagine prayer as a cooperative endeavor. We would call this liturgy “the work of the people.”
The immediate reality our prayers change is the reality we change ourselves. If we want to answer a prayer, we must become the answer. We prayerfully and actively invest in the kingdom of God, which is at hand. If we convince ourselves to wait for God (or others, like Congress, a President, public opinion, etc.) to act, more people will die. I believe God wants to hear our prayers and see them become tangible actions.
It is hard to pray. The world is in a difficult place. We shouldn’t shy away from naming our challenges. Are we content with being desperate observers, or do we want to be active participants in God’s ongoing kingdom? The answer to that question depends on how comfortable you are with being more than a passive prayer.
To grieve with any level of authenticity, we must not be selective in who (or how) we mourn. To name a loss worthy of memory, sorrow, and joy (in a life well lived) is an act of supreme defiance in a world where we store our wealth in a currency named for the Greek word “hidden” or “secret.” We live hidden and transient lives. Everything we value about life, even its inevitable ending, is obscured with each new mass shooting, virus, disease, and missile attack. Those who die remain unseen, off-camera, and hidden beyond well-word catchphrases and slick camera angles. Even before the pandemic, the affluent west invested heavily in crypto-mourning. This is the process of continually moving our thoughts, prayers, and concerns from one tragedy to another (as one would move money to offshore accounts) but never asking, “Do these prayers have any real value unless we transfer them as hard spiritual currency into our lives and act upon them?”
While all death is death, the world values the memories of some deceased differently. Thus, we grieve some victims longer and more viscerally than others. We invest in acts of community and corporate sorrow. Candlelight vigils and community gatherings have done what I once thought impossible: made grief cliché, predictable, and ephemeral. Our grief becomes public, or so we claim, and then we move on. We wait for the next tragedy, and the cycle repeats. The problem isn’t too many people sending meaningless thoughts and prayers. Instead, we’ve made grieving a public media-driven production. Persons whose trauma and grief are too immense to step into this spotlight are largely forgotten. For so many, the vast majority of those in hospitals and homes worldwide, there are no witnesses to the realities of grief preparing to be confronted at this time we force each other to call “joyful.” Their grief isn’t sensational, but it is real.