Long Term

A study followed 33,000 people in Scotland who had tested positive for Covid and 63,000 who had never tested positive, checking symptoms at six-month intervals. The study’s authors wanted to examine the long-term risks of Covid by comparing the frequency of symptoms in people with and without previous Covid diagnoses. Published on Wednesday in Nature Communications, the study found that, eighteen months later, one in twenty people who had been sick had not recovered at all. Another 42% reported only some improvement in health and well-being.i

This sounds like terrible news. And I admit that fear of long Covid is what kept me diligently masking for so long. Yet there is also good news here. According to Dr. Ziyad Al-Aly, chief of research at the V.A. St. Louis Health Care System, because the study uses a control group, researchers can accurately assess which symptoms are associated with long Covid (and not something else). “It also tracks with the broader idea that long Covid is truly a multisystem disorder… not only in the brain, not only in the heart – it’s all of the above.”ii

According to Dr. Jill P. Pell, senior author of the study and head of the School of Health and Wellbeing at the University of Glasgow, “Covid can appear differently in different individuals, and it can have more than one impact on your life…”iii

While long Covid is clearly terrible, I find good news in this report because

• It reminds us that researchers are diligently working to learn more about the long-term effects of a disease that many people are now dismissing; and
• Medical practitioners will be better prepared to help people with end up with long Covid as well as with other ailments with similar symptomatologies.

One of those other ailment which “is truly a multisystem disorder” and “can appear differently in different individuals” is chronic Lyme disease. For me and for the tens of thousands of people who struggle with the disease, this study and others like it offer great hope.

But wait, you say. Tens of thousands? That many?

An estimate based on insurance records suggests that about 476,000 are diagnosed and treated for Lyme disease in the U.S. each year.iv Although the CDC/NIH estimates a treatment failure rate of between 10-20%, the International Lyme and Associated Diseases Society (ILADS) found that among those treated early, 16% to 39% remain ill.v For those treated for chronic Lyme, estimates range from 26% to 50%.vi (These numbers do not include those who never learn they have Lyme.) Using the CDC’s old estimate that 300,000 people in the U.S. contract Lyme each year, Lorraine Johnson, CEO of LymeDisease.org, offers a prevalence chart. (Disease prevalence is the cumulative number of people who get a disease and remain ill – whether treated early or later.vii)

Even in the best case scenario, that would be 300,000 people within ten years. A more realistic number would be between 600,000 and 1.2 million in the same timeframe (and many people have had Lyme for decades). So I greatly underestimated when I said tens of thousands.

A survey of about 3,000 patients with chronic Lyme disease found that more than 70% reported only fair or poor health.viii 

This suggests that a great many people are suffering from an ailment that can be as debilitating as long Covid but without the press, and often without support of no medical professionals who take them seriously even if they don’t know how to help, insurance that covers their treatment, or even family support. In short, without a social or a medical safety net.

If there are blessings to come out of this pandemic, my prayer is that better care for chronic Lyme patients will be one of them.

i     Damian McNamara, “For Many, Long COVID's Impacts Go On And On, Major Study Says,” WebMD, last viewed on October 15, 2022, https://www.webmd.com/lung/news/20221012/for-many-long-covids-impacts-go-on-and-on and Benjamin Mueller, “Nearly Half of Covid Patients Haven’t Fully Recovered Months Later, Study Finds,” New York Times, October 12, 2022, last viewed on October 15, 2022, https://www.nytimes.com/2022/10/12/health/long-covid.html?campaign_id=154&emc=edit_cb_20221014&instance_id=74673&nl=virus-briefing&regi_id=126117459&segment_id=110042&te=1&user_id=c32140b396f770fc82f0c145275a76b0.
  
ii    Benjamin Mueller, NYT.
  
iii   Benjamin Mueller, NYT and Damian McNamara, WebMD.
  
iv    CDC, “How many people get Lyme disease?” last viewed on October 15, 2022, https://www.cdc.gov/lyme/stats/humancases.html.
  
v     “Lyme Basics: Chronic Lyme Disease,” last viewed on October 15, 2022, https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme-disease/. While I have found lymedisease.org to be a helpful resource in my own Lyme journey, I cannot assure the reader that everything presented there is fact-checked and without bias.
  
vi    “Lyme Basics: Chronic Lyme Disease.”
  
vii   Lorraine Johnson, “Growing Number Of Chronic Lyme Patients – Still No Government Action Plan?” July 11, 2015, last viewed on October 15, 2022, https://www.lymedisease.org/lymepolicywonk-growing-number-of-chronic-lyme-patients-still-no-government-action-plan/
  
viii  Lorraine Johnson, Spencer Wilcox, Jennifer Mankoff, Raphael B. Stricker, “Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey,” March 27, 2014, https://peerj.com/articles/322/ referenced in “Lyme Basics: Chronic Lyme Disease.”

It's all in the mind! (well, a lot of it)

“I get to paint the garage!”

It’s Wednesday and this was my thought upon waking up this morning. Now that I’ve sipped some tea, let me explain…

I’m not delighted to paint the garage. It needs it and would have been painted last year if I hadn’t broken my foot. I look forward to a sense of satisfaction when I survey the freshly painted back wall. Returning my friend’s ladder will also feel good. But I don’t enjoy this project as I do some others.

Why the predawn enthusiasm then? Psychologists tell us that we can change the way we feel about tasks or relationships by changing the way we talk about them. When we express frustration or distaste, this colors our perspective. The relationship becomes burdensome. The task, more onerous. The reverse is also true. When we speak with pleasure or excitement about our relationship with a sibling or the task ahead, we are more likely to approach it with anticipation. “I get to paint the garage!” reflects an intention to change my mindset.

“A mindset is a belief that orients the way we handle situations—the way we sort out what is going on and what we should do.”i Carol Dweck wrote about fixed and growth mindsets – “My abilities are set and I can’t change them” versus “If I keep working at it, I’ll improve.”ii Gary Klein studies other types of mindsets as well. He explains that mindset influences whether police officers or military personnel use intimidation or trust-building as they seek compliance.iii

I’ve only been working (again) on my mindset for a week so I can’t say yet if it’s helping. But I’ve been changing into painting clothes without inner complaint – I’m a messy painter – and haven’t groaned about carrying the heavy ladder. The work is happening. Maybe that’s enough.

I'm not suggesting that “fake it ’til you feel it” is always a useful strategy. I was mistaken to believe it would suffice for absent feelings in my marriage. Yet it worked for John Wesley, founder of the Methodism movement (and subsequent Methodist denominations) when his faith was shaken. An Anglican priest, he had felt called to travel to Georgia to win people to Christ but, once there, he failed not only in that but also in his efforts to win a certain woman's affection. Dispirited he boarded a ship to return to London. During a storm at sea, he noticed that some of his fellow travelers displayed a sense of peace he did not feel. Once home, he spoke with a trusted friend, Peter Bohler, laying out his belief that he ought to give up preaching.

Wesley:     “How can you preach to others, who have not faith yourself?”

He then asked Bohler “whether he thought I should leave it off or not.” 

Bohler:     “By no means.” 

Wesley:    “But what can I preach?”

Bohler:     “Preach faith till you have it; and then, because you have it, you will preach faith.”

That was in March. Wesley was persuaded to persevere. In May he approached Bohler again who instructed him to keep at it. We can imagine Wesley grieving for a lost faith that might never return. Yet only days later he experienced a conversion experience that Methodist churches commemorate in late May each year.iv From then on, Wesley worked tirelessly, preaching faith because he had it.

What does this mean for us? Maybe nothing. Maybe something.

The counselor I’m seeing assigned me homework to help dismantle feelings of insecurity. (While I have no more fears than other people, mine often run rampant through my mind.) I’m to say, “I value our relationship. -- is a good, committed friend.” I’m often settling into bed for the night before I think of it. That's okay. I say it and smile because they are a good friend.  

Will this help long term? As in all things we get to choose – each day, sometimes each hour – whether we will hope and trust. 

Let's hold to hope!

i   Gary Klein, “Mindsets: What they are and why they matter.”, May 1, 2016, Psychology Today. Last viewed on October 6, 2022.
ii  Carol S. Dweck, Mindset: The New Psychology of Success, Random House, 2006. Last viewed on October 6, 2022.
iii Gary Klein, “Mindsets: What they are and why they matter.”
iv John Wesley was a prolific journal writer all his adult life. “The Journal of John Wesley is composed of 50 years of Wesley's reflections. These writings offer a first person view of the thoughts, feelings, and prayers of a man whose intelligence and organizational skills were only surpassed by his enthusiasm for spreading the gospel of Jesus Christ.” Here you can find records of his first and second conversations as well as his conversion experience. Last viewed on October 6, 2022.

A Bear Ate My Lunch

The sun always seemed to shine during that semester at New Mexico State University. The exchange group (national and international students) regularly went on Saturday outings. Hikes in the Organ Mountains are the ones I remember. The sky was so blue, the vistas so different from the ones I grew up with in Pennsylvania.

Returning to New Mexico a couple years later, I joined fellow teachers on short hikes. In cross-country skiing, I learned about cardio and the quiet of a snowy mountain. Downhill skiing, I felt the exhilaration of speed and, initially, the fear of a tumble as I approached the end of a run and didn’t know how to stop. I also met others who enjoyed outdoor… excursions. (One had just backpacked the John Muir Trail, a two hundred miles trek from the Yosemite Valley and to the summit of Mount Whitney.) In addition to hiking mountain and desert, we went spelunking and rock climbing. With a borrowed backpack I joined them on a weekend trip, learning the thrill and exhaustion of carrying all one’s gear.

Soon after, I bought a cheap frame pack, a decent hip belt, and a good sleeping pad. I only used the pack a handful of times but I relished visiting wild places while challenging myself in ways I never had before. Having joined a few trips, one July day I headed to California. My powder blue Escort rebelled at the dry heat of Death Valley. Every twenty minutes I’d pull to the side of the road and let the radiator cool enough to add water before continuing. Finally reaching higher country, I spent the next day waiting as a mechanic procured, then installed, another radiator. With the car again dependable, I toured Devils Pilepost one day, then walked the path up and down Mount Whitney another, jogging the last mile or so before dusk became dark (and me with no flashlight).

After partaking of these and other light romps, I drove to Yosemite, registered at a ranger station, threw the pack on my back, and started walking. If you missed it I was alone, my first, and only, solo backpacking trip. Glorious! I’ve never since been so present in my skin as to recognize by touch whether that brush of contact on the arm or neck was a mosquito, fly or spider’s line.

Being small in stature, I’d opted not to add the weight of a tent to my pack. The second morning, my left eye was swollen shut from an insect bite. On what was to have been the third of four mornings, I awoke to find that I hadn’t slung my food bag high enough up the tree to evade bears. A few grains of rice, two dehydrated peas, and some bright red crumbs on the ground below were all that remained. I’d enjoyed freeze-dried strawberry slices the night before, savoring the sweet-tart zing on my tongue. Wanting the prolong the experience, I had left half the package for the next night’s supper. I wished I’d eaten them all! That day, as the chocolate chip cookies in the car called to me, I hiked twenty miles downhill, arriving at the parking lot around 10:00 p.m.

Until quite recently, that trip marked the end of my great outdoor adventures. Within three years I married, had a child, bought a piano, and got a mortgage. I settled into a traditional life, learning a little about plumbing, paying the bills. The American dream. To say that I failed would be inaccurate. I may have done poorly in marriage (I’m too close to assess) but my kids are amazing and I wouldn’t trade them for a world of adventures. Those years, both the good and bad, made me who I am.

But that was The Box, and not my box. Stepping out of it, I began peeling back layers of assumptions and wrong beliefs, slowly coming to know myself.

Recently I was instructed to ask each morning, “What does Jayneann need?” Sometimes a response comes easily. Other times I have no answer. In those moments I remind myself that re-membering is a process and that as I continue to reclaim who I am, more often I will know.

Busy as a . . .

Pushing away Virginia creeper vines and scraping away as much soil as I could before hitting rock, I quickly added a plant, covered and watered it, repeating the process a few times. These native plants are still young so they’ll have no trouble sinking their roots between the boulders that make up my friend's yard. Wild bergamot grows along roadsides locally. Mine, which came from a friend last year, is doing so well that I thought I’d share some of it. Spotted beebalm is less common and I’d have never known about it if some hadn’t appeared in my sideyard seven years ago. Local nurseries don't sell it and it took me years to discover what it is. All I knew was that it’s a pollinator magnet with weird flowers.

I brought some to Wausau and now that it’s established, it’s the only plant on which I consistently find great black digger wasps. These shy native pollinators will fly past the other flowers to get to this favorite.

Transplanting complete, I returned to the house, socks wet and feet cold. Today is a gray day, 55° (12° C). Definitely sweater weather. I’ll miss sitting in the red camp chair by the natives bed. I’ve really enjoyed seeing what’s new there each day, especially the last two months as the plants flowered abundantly and bees were at their busiest.

Some people are nervous around bees but I’ve never had trouble with native ones. (I’m not speaking of yellowjackets, native or introduced, which I was glad not to see in my yard this year!) Yes, I’ve had my share of stings, even one from a bumblebee when I stood picking raspberries too close to the hole in the garage wall where she was nesting. Generally though, bumblebees are peaceful creatures too intent on their flowers to give humans the time of day. I can walk through their midst gently pushing plants to one side and the other, “Excuse me… Excuse me,” and they ignore me entirely. And except for a few species, bumblebees are solitary creatures.i

It’s been thrilling these last two summers to identify some bee species. Honeybees, of course, were introduced but we have many native species in North America. Sweat bees are green and quite small. Eastern bumblebees are small and prolific in late summer beds. Brown-belted bumblebees are twice as big but like their cousins are just as peaceful.

I’ve found it difficult to take clear pictures of any of them. These busy creatures are in such constant motion that the SEEK app has a tough time identifying species.ii I was really hoping to get a name for the huge one I first saw last summer. All summer I’d been watching for it and finally saw it last week. Much larger than any of the others (body length is maybe an inch and a half), its back legs as it grasps a flower remind me of those on a small grasshopper, only black. Alas, SEEK could only say it’s a bumblebee.

And why, you ask, am I going on about bees? Well, besides the fact that our lives depend upon the pollinators that we are actively exterminating and which so many unjustly fear, and besides my belief that G-d cares as much for these insects as for humankind, bumblebees please me. I’m tickled to see them so industriously going about their business.

In them, I see my old self, when I was so task-focused that I could accomplish great numbers of mundane things yet be oblivious to what else was around me. Though I can no longer do as I once did, I guess I admire it. You’ve probably heard the axiom “it takes all kinds.” I used to be that kind. Some of you were too, or still are. And if it’s healthy for you, then that’s excellent. The rest of us may be better for you doing your thing so tirelessly, so devotedly. Thank you!

These days I’m more of a watch-the-plants-and-bees kind of person. And that’s okay too, at least for now. Some days though, like last Friday, I get to practice being something in between. That day I substitute taught at the local high school and middle school. It was a great day, a busy one made busier by a shortage of substitutes. I arrived expecting to lead German classes but because a Spanish teacher called in sick at the last minute I covered a couple of her classes as well. (It was exciting to find that a couple years of German study on Duolingo had prepared me to help third-year students in that language and my experience and shorter studies in Spanish equipped me for Spanish students of the same level.iii)

Usually substitute teachers have one or more breaks beyond lunch (when the regular teacher would have preparation time) but on this day I had a bare fifteen minutes to regroup. No complaints. Being useful feels good. I returned to the house tired yet content, recalling how I used to do this every day.

And wondering how the bees do it …

i  Douglas W. Tallamy, Nature's Best Hope: A New Approach to Conservation That Starts in Your Yard. I’m really glad a friend loaned me their copy of the book. I took issue with only a couple non-technical bits this entomologist wrote (one about Lyme disease) and found it well worth my time to read.

ii  SEEK by iNaturalist is slower to identify insects than plants. Still, it’s better than the app I tried before it and has improved in the year since I installed it on my phone.

iii Duolingo is a language-learning appeared language-learning that allows users to practice vocabulary, grammar, pronunciation, and listening skills. I use the free version. It’s great though I really need to find opportunities to work on conversation.