Back in 2019, I would have never imagined my body’s survival into 2021. I expected to have already seen Heaven’s pearly states, a thorough life review, and some final judgment, a curt, quick command, “Away with ye.” Two months into 2021, I can honestly attest that this has been a year of death, just not mine.
Tag Archive: Faith and Doubt
I first heard Limbaugh in 1988 driving across America. His voice ricocheted across Iowa as if each corn stalk was were a unison of antennas uplifting far-right conservatism from the depths of a relatively unknown chasm. His voice gave marginalized Americans a voice. To some extent, his views paved the way for likes of Fox News, the Tea Party, and Donald Trump. I listened, not because I overtly professed his beliefs or even liked him, more so because I recognized that this form of vitriolic pseudo-hate would likely climb out from American farmlands to impact America. I wanted to understand, but never did. Limbaugh was uncomfortable. He called HIV/AIDs ‘Rock Hudson’s disease,’ asserted ‘environmentalist wackos’ were scientists organized for a political position, women lived longer than men because they had comfortable lives, being liberal was similar to being Nazi, claimed Barack Obama was not born in the US, and argued against the dangers of smoking.
Working well into late Friday night, my boss messaged from California. “Why are you online this late on Friday?” I responded by texting that I was working on COVID research. “I thought so,” he said. “I remember you stating you slept 12 hours a day during Christmas break. You perform outstanding work for us, but I need for you to logoff. Get some rest. NOW.” He’s right, I should rest, but the battle is personal.
My boss doesn’t know my father died from COVID. My mother called on a Friday “…Dad was tested for COVID this past Tuesday. His results came back today indicating he had COVID. But there’s good news. The nurse indicates he only has a fever. So, he might be ok. Right?” I knew otherwise. I knew that an 89 year-old man, paralyzed on the left side from stroke, suffering dementia, and possible heart issues would probably not survive. I knew that the eleven days post-COVID infection would be critical. Sure enough, when I received my mother’s 3:15 AM text eight days later, “Call me,” I instinctively knew he passed.
I made sure I had all the right equipment necessary to get into work. After four days off, the biggest challenge for many coworkers today will be ensuring they can find their company issued badge. One would be surprised where ID badges meet their untimely end. For whatever reason, some get shoved into the Christmas tree and recycled with it. Some badges get chipped when used as an ice scraper on winter days. One employee brought their badge to security. “Wow. Smells like urine.” After convincing security that the employee was unclear how the smell originated, she was issued a new ID. Later I overheard her confession, “Yeah. My cat dragged it [the badge] into the litter box and p***ed on it.” Tragedies like this never occurred to my badge.
In the three years on the job, I have left my badge at home on two occasions. Upon getting to work, I have to return home, determine where in the hell I left it, reclaim it, and drive back. Sure, I could have requested and been issued a temporary ‘day pass,’ find my ID post-shift and return the next day. But that’s not my style. To me, a ‘day pass’ [and its flaming neon orange] screams, ‘Stand Clear! ‘Stupid’is attached to me.’ Nowadays, mine is always in my bag.
As many know, I normally make no New Year’s resolution. Over the years, I learned that resolutions are ineffective and often go unbroken. Most resolutions never get past a week. One year I vowed to lose weight. “Don’t eat the ice cream,” my coworker pontificated at a meeting. “Where is it?” I countered. And there you go. Vowed to reduce pizza? Ate it. Declaring an abstinence from coffee found me four hours later laid out on the break room floor wheezing out between gasps to anyone listening that I couldn’t make it unless I received a caffeine fix. This year, I will try for a bolder resolution: walk like James.
To properly understand, you’ll require some context. When I started my current position, the job required a national security clearance. Over the course of several weeks, I carefully completed an SF-86, a one-hundred plus page Questionnaire for National Security Positions that details all previous employment, travel, criminal, financial, martial, personal background, all the times I used a restroom on foreign soil, and any other tales of woe I would to voluntarily disclose before government agents ask, “Hey dumbs**t. What about this incident in 40 years ago in a bookstore in Frog Jump, Tennessee?”
My review of a Canadian Armed Forces report of their effort to assist Ontario long-term care facilities early in the pandemic left me soul searching. There’s a general presumption that the Canadian healthcare COVID response (and therefore, healthcare) may be a solid model for the U.S. to emulate. Some colleagues openly question whether the U.S. should follow that model. In reviewing the Canadian COVID response, I found that, in fact, the U.S. mirrored many aspects of the Canadian response. Unfortunately, much of it was the worst aspects.
The Canadian Armed Forces published report (Ontario) contains nightmarish scenes; residents abandoned in beds for weeks or force-fed until they choked. Residents with dementia allowed to wander at will through buildings rampant with the virus. At a facility just north of Toronto, residents were “crying for help” for as long as two hours before receiving assistance. Some had not been bathed for weeks, and “significant gross fecal contamination” was the norm.
A warning to readers: The report was difficult to read. Having a father who was in Hospice, there were times I had to walk away. My intent is not to disparage the Canadian medical system. Just like the U.S., there are many wonderful clinicians and facilities. But the report offers critical lessons. More importantly, on a personal level, there was one question I often asked myself repeatedly: ‘Where was God?’ And for the broader audience, ‘For those suffering from dementia, is God there?’
When Jesus walked, people didn’t experience dementia or Alzheimer’s as we know it today. They died. In fact, the average life expectancy was 35. Infant mortality was huge. Subtract infant mortality and archaeologists indicate lifespan jumped to 50. In her book “Stone and Dung, Oil and Spit,” author Jodi Magness summarized life in Jesus’ day: It was a “filthy, malodorous and unhealthy” world. A case of the flu, a bad cold, or an abscessed tooth would often kill. That was His world. COVID-19 is ours.
For Christian and non-Christian alike, Jesus is seen as a model of care for the sick. Needless to say, when caring for someone with coronavirus, one should take the necessary precautions in order not to pass on the infection. Phillip Yancey noted that “… for Jesus, the sick or dying person was not the ‘other,’ not one to be blamed, but our brother and sister. When Jesus saw a person in need, the Gospels tell us that his heart was “moved with pity.” As such, Jesus remains a model for how to care during a crisis: a heart moved by sympathy.
As the Apostle Paul wrote, the Spirit of God intercedes (speaks within), sometimes in sighs too deep for words. Could someone with Alzheimer’s experience God at a non-conscious and non-verbal level? Perhaps this is God’s calling to us to cradle and love without expectation of conscious response or reciprocity. As caregivers, sometimes we must provide without hope of return. Bear one another’s burdens, the Bible would say. The response Jesus emulates is to bear the burdens of those we touch (just as He).
In his book Night, Holocaust survivor Elie Wiesel described witnessing the agonizingly slow death of the Dutch Oberkapo’s pipel, a young boy hanged for collaborating against the Nazis.
“Where is God? Where is He?” someone behind me asked.
For more than half an hour [the child in the noose] stayed there, struggling between life and death, dying in slow agony under our eyes. And we had to look him full in the face. He was still alive when I passed in front of him. His tongue was still red, his eyes were not yet glazed.
Behind me, I heard the same man asking: “Where is God now?”
And I heard a voice within me answer him: “Where is He? Here He is—He is hanging here on this gallows. . . .”
So where is God? Here’s here. He’s here in our dementia. He’s here in our COVID. He’s here in the world. We are His emotional incarnation, we are called to follow His example. Sure, sometimes God does enter and occasionally performs a miracle, and thereby offers strength to those in need. But mainly God relies on us, His agents, to do His work in the world. We are asked to live out the life of Christ in the world, not just to refer back to it or describe it. We are to announce his message, work for justice, pray for mercy . . . and suffer with the sufferers. And when we do this, even those suffering from dementia will know God lives, that the spirit awakens and we can help one find the path homeward.
So, where is God? He’s right here. In our suffering, in empathy, and in love.
Is it possible for God to look upon human frailty and feel compassion? Some days I wonder. I wonder if He remembers what it’s like to walk the earth, see the pain, look upon the hunger, go back to heaven and ask what’s for dinner. Meatloaf? “Great.” Wine from a heavenly vineyard? “Awesome.” Regardless of what God thinks, I am exhausted. Simply, going to the doctor for a blood draw or through a supermarket feels like a gargantuan task. I no longer walk, I shuffle. Rigidity and sagging stomach drooling over my belt graces anyone who dares to stare. Doing any more than two tasks at the same time is challenging. Back in the safety of my car, I lay against the headrest and thought of the previous week. I completed the task at hand—preparing for inevitability.
I spent this past week saying goodbye. Sure, I should have started this shortly after receiving a terminal diagnosis nearly two years ago. Remember? The days when I could still leap from a couch, hold a coffee cup, a plate with a bagel while simultaneously carrying on a conversation via Bluetooth headset. “Death? What death?” I sometimes smirked. “Dude, that’s like a couple years away,” a defiant inner voice responded. Continuing, “A lot of things could happen between then and now. Miracles could occur. And I could be one of them.” I wasn’t.
If you’ve read my blog, you’ve known I never believed in miracles from some Devine interceder were meant for me. I pretty much accepted my fate, even now. I just knew that whatever time I had left, it could be the last time to experience. Flying to see my mother and father, flying to see my brother, that beach walk on the Florida Panhandle, the desert sky, and that walk with Skip, my father’s dog. Just as my doctors said, I always knew I could be within weeks, days or hours of death. The October 19th event brought clarity.
For the 60 years of life, my family consisted of four: my father, mother, brother, and I. We grew up, went on to extend our inner circle, but at its core, there were just us four. 2021 brings a future of absences, absences that will weave through the family core as my father and I are likely to depart. My parents will never have another child and my brother will never have another brother. I looked at 60 years of documents spread across the Livingroom floor, deciding what to send, what to trash, what to donate. Yesterday, my life finished with 499 pieces of documents stuffed into a folder that will be distributed when I’m near death or dead.
Even in death, my will will continue on earth, at least for a brief moment. There will be bills to be paid, assets to transfer, assets to sell, writings to be mused of, and potential awakenings with “What the hell possessed him to do that?” When people look at this material, I hope the world knows I approached my finality with clarity, that decisions were made from a position of reason, intellect, compassion, honesty and love. Looking through the pictures and documents, I notice how feelings are difficult to discover—and often even more difficult to acknowledge. Yet hidden in the deepest feeling is a higher truth. Many will find a sense that finally that “f***ing bastard is gone.” Even in anger, it was my goal for love to live and survive.
Sure, I’ve seen the same basic instincts in others facing death. An eighty-year old nun who talked about God’s penchant for miracles as a cough settled in; died two days later from COVID. Then a close friend, an Emergency Room Chaplin, who feared no such thing a COVID because she always took precautions, wrote via email to update us on her struggle to breathe after COVID diagnosis. In truth, I am not that desperate to stay alive.
While I did have a blood draw this morning, I didn’t need the test to tell me if a treatment is working. I can feel life’s edge. The climax closes quickly and inherently, I have an internal knowing I will stop soon. As such, I can feel for those who will unwillingly envision a life without me. My heart aches but I don’t know how to help. As I finished sorting my life, I accepted that there’s a part of the preplanning process that cannot be resolved. One can resolve logistical problems of death, but how does one alleviate pain? My mother will suffer. And maybe for a fleeting moment, my brother will as well. Nothing I say or do will help as much as time. The laws of planetary evolution don’t allow one to relive dreams. To those who hurt, time will be your friend. It will remove the intensity of the hottest of rage and, yes, even the most heartbreaking sorrow. It will heal you. And you will become free to live again.
In the Elizabeth Kubler-Ross five stages of death, Depression is fourth. In this stage, one is likely to feel like withdrawing from life, feel numb, live in a fog, and not want to get out of bed. That wasn’t me. As subtle as it was, my stage was able to poke hole my otherwise stable façade.
To the normal reader, one may look at the event and say, “Why the fuss?” However, to all-knowing inner soul, it was “Reality bites.” At 4:38 PM, standing over a cutting board with knife in hand, ready to chop a white onion, my hand shook so bad I nearly couldn’t perform the task. I looked like a construction worker using a jack hammer to cut vegetables.
Stage four started a few days ago with internal tremors in the legs and bradykinesia, a slowness of movement or impaired ability to move as commanded (like chopping vegetables. Frustrating, because I’ve spent a lot time making everything appear “normal.” Yet, I placed my knife on the kitchen counter, sat and in a chair and realized that I don’t know what normal is.
I had only a few weeks post-diagnosis before the Coronavirus struck hard and either forced everyone to place life on hold or work like crazy. Being in the later, I’ve kind of buried the deepest feelings. It was the first time I experienced any anxiety. In the several hours thereafter, I am beginning to understand something larger, bigger, and more determined is about to happen to me.
What if the façade fails and I must out myself? There are other things that take precedence over me. Certainly, my father’s stroke and potential death is significant. My mother’s care is critical, not to mention the subsequent estate settlement. Personally, I’ve had a tumor, multiple sclerosis, osteoarthritis, and now Parkinson’s.
As I sat looking out the window, I realized how tired I am. Tired of being sick. Tired of being in pain. Just plain tired. I suppose the fact that one’s body is trying to either make you miserable or kill you will, in fact, make one really depressed. I haven’t thought about mortality in any sense. I mean I have thought about it, maybe I haven’t processed it. Then again, we’ve all gone through some tough things–many a lot worse than I.
Outside of this moment in my life, I’ve been lucky. I’ve traveled well, seen places most will never see, had many a great love, and experienced God first hand. From a Buddhist perspective, what more could I ask? Sure, my hands and legs are beginning to fail, but I can write. And write I will.
As death approaches, Buddhists are taught to think about their holy writings. Focusing upon the Buddha’s teachings is supposed to bring good luck to a new existence. I will not focus upon superficial images of happiness, material and sensual pleasures, or technological innovation. At this point of my life, I am focusing upon whatever love available. I believe only true love will transcend death.
Thus, for a person who has awareness of death, every moment becomes a lesson in death and a lesson of love. Every moment should be viewed as being infinitely precious, and we should make the utmost effort to use our time to the best advantage.
Upon waking, I marvel at how my back feels, how natural the rhythm of the first few hours are, and how naively I think I could do it forever. Such feelings last an hour, maybe two. After that, I quickly relearn the cumulative effects from an early February tumor removal and Parkinson’s diagnosis.
In the cool of the pre-sunrise morning, when I’ve had a good night’s sleep, all seems well. As the day wears on, weariness smolders the day, and that beautiful early morning feeling evaporates. Life becomes weightier, and every step begins to take its toll. My neck and back hurt, I fiddle with chairs aiming for a stable fit, and comfortable position. Yet no matter how much I tinker, I remain uncomfortable for the day.
Most cancer follow-up appointments remain canceled. As the W.H.O. noted, many patients with cancer are struggling to receive treatment due to hospitals canceling or delaying surgeries and other procedures. This includes those patients who are otherwise healthy and have curable diseases that require the timely implementation of surgery, chemotherapy, or radiation. Contracting COVID while undergoing treatment is too high a risk as opposed to cancer slowly eating away your life, one day at a time.
I have the utmost respect for my medical team. When I’ve texted (usually about medication), they’ve responded and provided care. However, it seems strange to be standing in the cancer wing of the hospital, updating their applications, with full knowledge that I cannot gain access to very services that can verify my prognosis. No matter how much I understand Coronavirus’s impact, I feel caught in a Rod Sterling “Twilight Zone” episode.
Walking the hallways, working from home, or looking out to the lakefront, I notice how the world has stopped. Driving through the subdivisions, I note, “… even in this place where time stands still; it seems like everything is moving. Including me (Heinrich Harrer).”
The ‘new normal’ is strange: things once marking the days—commuting to work, meetings, projects, and having a drink with coworkers, vanished. Time appears flat, seamless, without structure.
Before COVID, I needed to believe each day would get better. I needed to feel my doctors knew my tumor would abate, and that if I gave everything to treatment, I would be delivered more life opportunities, something I fully don’t deserve. Such needs are gone. I am too comfortable with the sharp edges of my reality. I accept my tumor, my back, and Parkinson’s will have its inevitable conclusion.
On these days, when it all stands still, I no longer feel the need for bravado. I give up my self-delusion. I hesitantly embrace the knowledge that no matter how many stairs I climb or ellipses I travel, no matter how hard I push my heart or how much weight I lift, neither heart nor head will be healthy enough to pump meaning into COVID.
And in these ‘still’ moments, I reclaimed missed opportunities. I love strangers with an intensity I never knew. On this day in mid-May, as the night begins, I walk and find silent streets: no restaurant lines, no children riding bicycles, no couples strolling in the park. It had taken the combined will of thousands to love one another so much that time stopped. Millions ultimately accepted the immense challenge and silenced life, their life.
I feel so grateful for the sacrifice. And for this moment, I am so profoundly proud of everyone that nothing more critical exists for me … neither cancer nor a lousy back.