At Saturday’s Christmas Eve candlelight service, I was flooded with powerful sights, sounds and scents. The liturgy proclaimed a radical acceptance based on unconditional love and a renewed hope for peace on earth.
Friends and strangers knelt to receive an ancient-yet-new gift. The range of emotions was embodied by one communicant who radiated a joy that couldn’t be contained while another wept with deep sobs of brokenness.
My mind went to war-ravaged Ukraine, to migrants at our southern border, to China’s current COVID-19 surge, and to folks in grief. The “hopes and fears of all the years” meet on Christmas Eve, and then our work begins.
We’ve all been dealing with recurring variants of COVID-19. To mask or not to mask is one of the questions, along with how many social events do we attend. Blogger Rita Clagett gave me a new slant on this issue in “Moving On with My Life.” An excerpt:
Today I’m grateful for all the usual things: waking up alive, a morning with a festival of clouds, and a peanut butter and jelly sandwich with potato chips for lunch–so simple, so delicious. …
Kudos to Kelli at the clinic for giving me an absolutely painless injection, and she was kind enough to come out to my car to do it, though I was planning to go inside. I’m grateful I brought an attitude of ease and interest rather than fear or resistance; it led to a good conversation about the local Covid surge, and us each giving just a bit more kindness and attention to the other than two strangers needed to.
A number of people have told me recently, in talking about Covid, “We’re moving on with our lives.”…(as) though I, and people like me who are still taking Covid precautions seriously, are stuck–as though we are not ‘moving on with our lives’ but frozen in time, frozen in fear, frozen in some lesser state than those who proclaim that Covid is over for them.
The minority of humans, those of us who suffer largely from ‘First World problems,’ really do need to figure out a new way to move forward–as this pandemic proceeds, as climate chaos increases, as our interconnectedness simultaneously deepens and frays–rather than simply going back to business as usual.
From “Moving On with My Life,” by Rita Clagett, Morning Rounds, November 18, 2022
So far, more than 40% of adults in the US have reported having COVID-19 in the past. Of those, 19% are still having symptoms of “long COVID.” Thus, 1 in 13 (or 7.5%) of US adults have “long COVID.” There are some symptom similarities among sufferers of ME/CFS, POTS, and “long COVID.”
Our son Rob is a self-taught expert on POTS and ME/CFS. His symptoms are consistent with both ME/CFS and POTS. He reads everything about these syndromes. For the first time in over a decade, he has hope that treatments may be discovered. COVID-19 has led to an avalanche of new research.
For about a year, he has followed a project by Germany’s University Hospital Erlangen in Bavaria and the Max Planck Institute for the Physics of Light. They are developing a drug named BC 007. Rob was encouraged by their Thursday report. (I’ve posted an English translation on a blog page here.)
The focus is autoantibodies found in ME/CFS sufferers and “long COVID” sufferers. So far, it’s just one patient, but it’s a sign of hope. Here’s a hopeful excerpt about her progress:
…her symptoms improved over many months: First, cognitive symptoms such as brain fog, poor concentration and limited short-term memory decreased, and later also noise and light sensitivity. Fatigue, muscle weakness, and POTS—the postural orthostatic tachycardia syndrome that causes tachycardia and dizziness in ME/CFS sufferers when they stand up—also decreased over several months. Driven by this initial success, the Erlangen researchers want to review both the diagnostics and the therapeutic approach in a larger number of patients with ME/CFS.
For those with serious illness, help comes through some degree of healing. For an amputee, healing may be a prosthetic device. For some conditions, help may be a partial healing or a relief of symptoms, even if only temporary. The word salvation literally means “healing,” or “wholeness.”
Our son Rob had viral encephalitis as an infant. He began showing serious symptoms in his early 20s that were mis-diagnosed as sleep apnea. The diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) led us to the Mayo Clinic in 2013 for a week of tests at their Rochester, Minnesota campus.
Little was known then about POTS. Rob puts all his available energy into medical research. POTS is akin to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), the subject of a recent Freakonomics M.D. podcast with Dr. Bapu Jena, “Could Long Covid Help Treat Other Chronic Illnesses?”
For those with ME/CFS, one answer to “From whence does your help come?” may be researchers like Ron Davis, who is interviewed by Jena. Public awareness (and funding) is up because Long Covid is causing an exponential growth of sufferers with symptoms like Rob’s.
Firing Line with Margaret Hoover is excellent journalism, including a 1/14/2022 interview with Fareed Zakaria about lessons from the pandemic, democracy in America and what to do about Ukraine.
As an immigrant to the US from India, Zakaria has great appreciation for his adopted country and a healthy objectivity. Hoover asked about American “exceptionalism.” He named several aspects of the US that are exceptionally good. Then, “I’m saying this with an immigrant’s love for the country. There’s a danger when you start to think that you are special and unique…. you don’t learn as much. … You don’t say, “How do other people do this? What can I learn?”
He said, “We’re not very good at public health.” Our system is “designed for private health. … “We have an amazingly innovative private sector. … this public private partnership is a tried and tested one. … time and time again the government has stepped in. But not to run things, not to administer things. …our system works best when the government pays and the private sector executes.”
Hoover asked about his becoming more progressive over the years. Zakaria (now 57) said as a young immigrant, “I liked Ronald Reagan’s muscular anti-communism. And that was the defining issue. I was always socially very liberal….. The central issues were communism and free markets.” He said, “I have changed a certain amount. I would argue that the right has changed more than I have.”
COVID brought an unwelcome sabbatical from in-person worship. We’re just now getting back into that rhythm. With the Omicron variant, I was relieved to see a supply of masks and a “masks required” sign on the church door. Our pastor thanks everyone for “masking up” for the health of the community.
We arrived at Christmas Eve communion during the prelude. We found a seat near the front of the crowded sanctuary. I felt overwhelming gratitude for every detail of the service. Great worship is an inspired art. It doesn’t just “happen.” During the Christmas hymns, I was teary and choked up.
At many points, especially as we lifted our little candles that brought light to the darkened sanctuary, I realized how much I’ve missed in-person worship.
The underbelly of this pandemic includes the long-term, residual impact for a group of people known as “long haulers.” From the Harvard Medical School:
“Long haulers are people who have not fully recovered from COVID-19 weeks or even months after first experiencing symptoms. Some long haulers experience continuous symptoms for weeks or months, while others feel better for weeks, then relapse with old or new symptoms.”
Son Rob, who’s been dealing with chronic fatigue for over a decade, is part of the ME/CFS community. He spends most of his limited energy doing medical research. Earlier this morning, Rob sent me a link to a very helpful article by Cort Johnson in Health Rising, along with this summary:
“...technologies are being used in COVID-19 and long-COVID research that would have taken years, if not decades, to show up in chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) research. They’re accelerating insights into potentially critical issues in these diseases. None is more critical – particularly in ME/CFS – than the cause of the fatigue and lack of energy in these diseases.
“Long COVID, then, is doing what people with ME/CFS/FM wanted it to do. It’s bringing new technologies and new researchers to the study of post-infectious disease states, as well as an increased focus on factors that we already believe may play a significant role in these diseases, and is already providing potential insights into them.”
An earlier post and a dedicated blog page introduced son Rob and his experience with ME/CFS and POTS. A recent article by Ed Yong in The Atlantic describes how some COVID long-haulers have been dismissed by medical professionals. What’s different about this article is that the long-haulers are themselves medical professionals. Yong interviewed over a dozen long-haulers in the US and the UK.
I’ll re-read it today as part of my Thanksgiving observance. Health, our most precious gift, is too easily taken for granted–until it is lost. From Ed Yong’s article:
“Most told me that they were shocked at how quickly they had been dismissed by their peers.”
“…these problems are familiar to people who have myalgic encephalomyelitis, the debilitating condition that’s also called chronic fatigue syndrome.”
“Amy Small, a general practitioner based in Lothian, Scotland … could barely raise a glass to her mouth. ‘It was a whole level of bodily dysfunction that I didn’t know could happen until I experienced it myself,’ she said, and it helped her ‘understand what so many of my patients had experienced for years.'”
After a 15-month absence, we attended an in-person worship service in June, just before the Delta variant surged. After another 5-month absence, we attended an in-person worship service on Sunday.
No offering plates were passed. We were invited to leave a gift at the altar or in a plate on our way out. Or, we could give via text or by scanning the QR code on the bulletin. It was clean and creative.
“Please do not sit on this pew” signs graced alternating pews. I appreciated the precautions. Everyone was masked. The choir was amazing. How can they sound that good wearing masks? An outdoor lunch followed. It was good to be together.
During one of the bleak moments of the pandemic, I watched/heard a rendition of “It is Well with My Soul,” by a group of Nashville musicians. I enjoyed it again last night, compliments of the Nashville Tennessean.
We’re halfway through year 2 of this pandemic. Humans have an innate capacity to learn from tragedy, and I’ve been thinking about what we’ve learned in this difficult, stressful, tragic era.
We are connected. A friend’s yarn shop has low inventory as she waits for yarn to be unloaded from ships backed up at west coast ports. Tech companies had relied on the cargo sections of international passenger flights to deliver critical components. The virus curtailed international air travel.
Slowdowns in the supply chain have created long wait times, as manufacturers try to secure necessary parts for their workers. The big snow in Texas a few months created a slowdown in making cushions for campers.
I’ve become more patient, unintentionally. Life has become simpler, grudgingly. As others struggle with COVID and its ripples, I’m more understanding, reluctantly. I’ve realized at a deeper level that patience, simplicity and compassion don’t come easily or naturally–acquired tastes during a slowdown.