It was late summer of 2010 while walking near the Hudson River shoreline when I heard Chris Carter talk about his retirement. Carter was on the Mike & Mike Show when a host asked Carter how he knew it was time to retire. “Mentally, I was still sharp. I could read the defense, understand the play, and mentally perform. Unfortunately, my body was no longer responding to what I was telling it to do. There was a delay, a gap, or in some cases, an inability to perform. That’s when I knew it was time.” I couldn’t relate. And for the better part of a decade, I never understood what Carter meant. Very few will ever experience a mind-body relationship like professional athletes. But these past ten days have provided one hell of an education.
Category: About Love
I watched Nomadland Sunday. Robert Ebert’s website summarizes the film accordingly: “Fern (Frances McDormand) is grieving a life that’s been ripped away.” Almost every viewer will claim the movie is littered with pain (not in a bad way) of those who face the challenge of living life alone. Some suffered from loss of a town, job loss, homelessness, loss of a spouse, a child, or even loss of oneself. In one scene, Fern so much wishes upon being alone that when she finds an abandoned dog, she ties the dog to a table outside a shop and walks off, thereby averting any potentially sentimental moment of connection. When in trouble, they become masters of finding a way out, rarely calling anyone. And that’s where I can relate.
I spent much of Sunday in a chair, barely able to move. Regardless of position, my neck, shoulders, and chest. Anyone suffering cervical osteoarthritis gets accustomed to the sound or feeling of popping in the neck when moving. At ties, mine tends to sound like a garbage disposal in perpetual grind. Never forget to add that the ol’ ticker (my heart) dribbles in some momentary flickers of pain and reminds me that I am a mere mortal. One day, time will be up. But not today. In theory, I should have been able to reach out to someone, but hell, when you live a solitary life, the question I always seem to ask myself is, “Just who the hell do I call?”
This blog post is difficult to write, and I hardly know how to begin. I am devastated to learn of Karen’s death.
I spiritually carried Karen in my heart for decades. Everywhere traveled, a part of her remained alive in my heart. And throughout all the years, through all my spectacular failures, I am now forced to breathe differently. I am forced to accept the crushing gravity of loss of death. It wasn’t supposed to be this way. I (the UB) was supposed to die first.
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.
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?”
A friend texted me, “Merry Christmas. We must get together after the Holidays.” Given the mere fact I haven’t heard from this friend in ion’s, instinctively I know this ‘get together’ would never happen as I returned a non-committal, “Merry Christmas.” I originally titled this post as ‘Last Christmas.’ After I received my friend’s text, I changed it, for I don’t, in fact, really know if, in fact, this is my last Christmas or not. I have been told Christmas 2020 would be my last Christmas, but does anyone know for sure? I mentally affirmed that message as the left side of my chest pained me. Hell, I haven’t even gotten up yet. I reached for the Lisinopril, Hydrochlorothiazide, and a small dose of Inderal. Feel renewed thirty-minutes later, as if nothing occurred, I got up and got moving. Of course I know the damage is still there, but it’s Christmas.
I have no Christmas tree, no decorations, no carols in the snow, no gifts. Like many others this COVID Holiday, I spend Christmas alone. And I wonder. I wondered if I led any form of a good life, a life worth being proud of. And to be honest, I think all of us need to be reminded of all the goodness we have brought forth. Often we get too wrapped up in what we have done wrong- without looking at what we have done right. Like others, I gave much. I cannot say I have given more than many, even up to the greatest sacrifice (life) for another, but I have worth. This Christmas, I think Christ would remind me (us) that I wasn’t (we weren’t) complete losers. I think there is a lot God would claim, “Well done.”
When I was a kid, I used to think that some form of cancer, tumor, or leukemia would nab me and wrest from me. A couple decades of maturity and having worked in healthcare these past fourteen years, there’s an incurable truth that one of six key diseases will kill most ( see Falling Through The Cracks). There’s no denying our lack of power. But I also believe this knowledge, and the knowledge of my own fragility, makes us a better person, a better nation. I believe I (we) am (are) nearer to God and has forced me (us) to see the beauty surrounding me. Thus, as Christmas Day plus one comes and goes, all of the pain has taught me (us) that I’ve (we’ve) come out ahead. Yeah, I (we) am (are) forever altered, as disease does that. But I (we) remain alive. I (we) remain intact.
If asked whether I should have chosen a life of tremendous successes with tremendous failures versus the more balanced nine-to-five job, I chose the former. Reflecting all my adventures, I think I would make that choice again. If I don’t, I would never be the person I am today. I think what God taught me these past several months is that a life worth living is one imbued with both success and failure, joy and sorrow, relief and suffering. What God reminds during this holiday is that all of us (me) missed on many occasions was purpose, passion and courage to not to pointlessly hurt one another, to toil in pointless jobs, and to endure a loveless marriage. I ventured forth and explored an unknown world. I took chances and enriched my soul. I loved, I lost. I still love, and still lose. Such is the nature of this world. Yet, ying/yang (love/loss) is the hallmark of a good life and the criteria by which I wish my life to be judged.
God asks us to live enriched lives. Are we willing to be changed? I have nothing against corporate leaders, though I question one man’s worth should he claim he requires 20 million or more a year in compensation. But I believe there are more spiritual lives in the lowly than in Washington, D.C.. An old rabbi was once asked why so few people were finding God. He wisely replied that people are not willing to look that low. Jesus was born in a stable, and is sure sign God is especially concerned for the poorest, the lowliest, the lost, and the neglected.” [From Liberation of Life by Harvey and Lois Seifert – quoted in A Guide to Prayer for Ministers and Other Servants.] Most of us feel lost and neglected. But I know He’s there. He’s there.
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.
If God were here, He’d tell you I failed to alter the course of human history. Pretty miserably in fact. Like many, I tended to be swept along by Tsunami-like waves of current events, often set in motion by something entirely beyond my control. I survived the years drifting alone and repeatedly tortured myself for the years wasted bobbing at sea waiting for either a rescuer or to be eaten. For fellow bobbies, the year 2020 required an incredible amount of internal fortitude. We made it past COVID, unemployment, hunger, Trump, the election, peril and or death. Now we’re here, November 26th. Congratulations! And since Thanksgiving is upon me, I ask myself, “Do I celebrate, memorialize, or a little of both?”
Ms. K. died seven years ago, just prior to Thanksgiving. I never knew she passed until early 2014. And why should I have known? She was a fellow colleague that I’d meet for lunch, catch-up, shake hands, and say, “Same time next year.” Now, seven years have passed. And since she was from Japan, I wonder if her family would participate in the Obon festival, an annual event for commemorating one’s ancestors.
According to Buddhist legend, Obon originated from a disciple who used supernatural powers to see his deceased mother had fallen into the Realm of Hungry Ghosts and suffered greatly. The disciple went to Buddha and asked how he could release his mother. Buddha instructed to make offerings to the many monks completing their summer retreat (occurring on the fifteenth day of the seventh month). The disciple did as instructed and his mother was released. I am not sure whether the Japanese version has similar intentions or not. I liken Japan’s version of a festival to honor the dead.
Obon can be held during the 1st year anniversary, sometimes in the 3rd and or the 5th, 7th and 13th years, and a number of times afterwards up to either the 39th or the 50th year, and that each time, ancestral spirits return to visit relatives. Remembering from my days in Japan, it is not a solemn event. Dances are performed, ‘ozen’ (offerings) are placed in front of altars, temples, and sometimes grave sites. Many families visit grave sites and clean gravestones. Paper lanterns are hung round to help guide the spirits return. Some families carry lanterns from the graves back to their homes. Toro nagashi (Floating lanterns) have sometimes been set afloat downriver, running to the sea. Symbolically this sends their ancestors’ spirits into the sky.
The thread between all these stories is to understand how past selflessness and the sacrifices were made. In life, I never knew Ms. K., but she has since visited and I believe she remains a guide during my travels here. As much as I’ve tried to research, I know nothing Ms. K. ‒ not where she went to college or how many siblings her family has, what she did for a living prior to settling in the United States or other minutiae of snippets that surround typical friendships. Yet, by the very nature of my illness, I deeply understand the personal impact of pain, despair, constipation, the trudge of earning a living while dying, pondering the future ahead, and finding hope. If anything, I would say each of us must embrace any friendship founded in hope.
For many families, Thanksgiving and Christmas will be filled with music, small parties (if any), a Netflix movie, family and friends via Facebook, Facetime, or Skype. Others will look upon the empty chair and dabble at tears. My heart aches for Mothers like the Duchess of Sussex, who ‘clutched her firstborn while losing the second.’ I cannot imagine the pain. 2020 saw so many heroes lost, including clinicians, fireman, police officers, teachers and activists. Jess Wells lost her husband (an Egyptian activist) to a dictator. Activist Travis Nagdy was shot and killed by a carjacker. Still, I feel a sense of optimism. I remain grateful for the kindness and sacrifices of all those who sleep. We should remember and appreciate each person not not as though they were perfect, but rather the positivity brought to life.
As trite as it may sound, I will embrace hope this Thanksgiving, for it is a powerful force that propels us through fear, depression and paralysis. Hope is unlike any other medicine. It kept me going throughout the years. I will retain my faith in both God and Ms. K. In 1978, God told me He would always watch over me, and personally know He intervened when He neither really had too nor probably wanted. I presume He did so for two reasons. First, He promised. Second, He cared. As for me, I don’t get up and work in spite of the pain because God was committed to me. I did it simply by the fact that since I awoke in the morning, that I should get up, be productive, and in some small way, help another. It’s what God would have wanted. I think that’s the way Ms. K. would want me to honor.
Ms. K. didn’t require a chochin lantern to call her spirit nor did she require one to return. (Heck, I don’t even know where she’s buried.) However, I know she is in my heart, and that’s a toro nagashi (floating lantern) that will never burn out. Therein lay my Thanksgiving message, never let hope (love) burn out. It is all we have.
Happy Thanksgiving everyone. Happy Thanksgiving Ms. K. Feel free to stop by.