spoons & buckets

They were sitting in the diner eating fries and gravy, talking like college friends do when her roommate asked what it felt like to have lupus. After rambling a bit, partly in surprise since she’s thought her friend knew all about it by now, Christine Miserandino came up with an analogy that has resonated throughout the internet with folks with chronic illness, their loved ones, and medical professionals.

Grabbing twelve spoons off the tables around them, she pressed them into her friend’s hands, then asked her to list her daily tasks. Christine stopped her almost immediately to point out that getting out of bed and preparing for work actually involved many tasks. And each one involved the surrender of a spoon (and she was going gentle on her.) The friend was down to six spoons before even getting to work! With new awareness, she asked, “How do you do it?” Spoon Theory was born.

Miserandino writes:

“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with… energy to do whatever they desire… they do not need to worry about the effects of their actions.”

Like her, giving up my belief in a healthy life and endless energy was really hard. “Slow” became my lifestyle, one that I resist at least weekly. In writing this post I ponder anew Miserandino’s question, “Do you know how many spoons people waste everyday?”

I encourage you to read her whole essay. It’s a quick read. (A CNN article last month about long Covid in children used the analogy of a bucket. Same principle: a limited amount of energy that once gone leaves on depleted.)

Being sick isn’t just about illness. It’s about the life one doesn’t have anymore. It’s about surrendering the freedom to do and be as one chooses without consideration of health consequences. Sometimes I used to skip lunch or stay up late reading. Now I know that these and just about anything – biking, keyboarding, buying groceries, fixing dinner, (cleaning up afterward), singing – all take from the day’s energy. I have to choose, knowing that I cannot accomplish half of what I’d like to do. Overdoing it can set me back for days or weeks.

It’s funny that I’d heard of Spoon Theory long before I read it but I didn’t have the time or energy to look into it. Before I knew I was sick, I was clueless. Now I file it all under the heading of “What I Didn’t Know.”

New York Times columnist Ross Douthat wrote about his 5-year struggle with Lyme disease in his new book The Deep Places: A Memoir of Illness and Discovery. I read about his motivation for writing about his journey in an interview he gave. It really resonated with me.

"There is a sense, when you haven’t lived through this kind of experience yourself, that having a chronic illness is just a slightly worse version of people’s everyday struggles. People with chronic illness will report that they have headaches or sleeping problems or fatigue and people who aren’t sick hear them and think, “Well, that sounds like what everybody goes through sometimes.” And this then feeds into the sense that people with chronic problems are malingering, that they’re obsessed with their own symptoms, that they’re hypochondriacs, and all these kinds of cliches and stereotypes.”

Yes, that.

I feel guilty about going on leave and about not working and about taking so long to complete just about anything. And while admitting that many people are more aware than I was, knowing my own ignorance I suspect that others think I’m making a big fuss over nothing. And I don’t like it.

I have a lot more energy than I did two years ago. I’m healing. What will my best life be like in five years? I don’t know. But then, none of us do.

Someone challenged me last week about my “Life is good” mentality. They’re going through a rough patch. I get it. Such an attitude doesn’t work for everybody. There are days it doesn’t work for me. But neither does despair or long-term anger. This is the day I have, the day you have. How will we live it?

I’ll leave you with a couple thoughts to ponder. Ask yourself:

• How do I respond when I learn that someone has a chronic illness? Especially if they look healthy. Especially if I see them doing ordinary or even fun things.
• How many spoons do I waste?

stream of consciousness

I'd like to tell you about an exciting development in my journey with tick-borne illness. First, you need to understand that while I’ve always needed 8½ hours sleep to function well, I’ve suffered from insomnia since at least high school. Fifteen years ago, I went through a couple years of sleeping for only three to four hours a night. I simply couldn’t get to sleep! Thankfully, pharmaceuticals helped to break that cycle. More recently I added ashwagandha to my evening regimen. Last winter, I bumped up my melatonin intake. But even with these, falling asleep could take hours.

Then last month I started sleeping easily. As in, I finish my self-Reiki, turn onto my side, relax my jaw and tongue, and it’s morning. This has almost never happened and it’s awesome! As with the jaw issue that disappeared recently, I’d never considered that the insomnia might be tied to tick illnesses but, other than treating these, all other factors have remained constant. 

I don’t recall if I’ve mentioned it but in January it seemed that while the Lyme was improving, something else was growing worse. Now that my brain is working better (better, not well) I can research and retain some of what I read. This study suggests multiple infections with Bartonella dominating so I shifted treatment. Apparently when one has more brain and central nervous system symptoms (as I do) Bartonella – which can be harder to treat and put into remission than Lyme – is the likely culprit. (Sigh.)

Anyway, I’ve been treating myself gently, as I encourage you to do. When I’m fatigued, I don’t power through as often. (When I do, it sets me back.) Frustratingly, this leaves lots of projects and chores undone. I’ve hesitated to have over the friend who helped install kitchen cabinets last month because I’m embarrassed for them to see how little I’ve accomplished since then. I lament the life that’s passing me by. These thoughts are depleting though, so I don’t let them stay long. Instead, I return to my mantra, “Healing.”

This is not a “Woe-is-me” message. (Please, no Care emojis!) People are dealing with depression, poverty, MS… We all have stuff. I think of the Afghan women, recent refugees, whom I help tutor. How hard it must be to leave everyone and everything (family, friends, homes, gardens) for a strange and sometimes hostile new home! The Taliban’s absence and educational opportunities for their daughters may be all that keeps them going some days.

Summer has finally come to northern Wisconsin. With summer comes the annual conference season. Wisconsin United Methodists met in Green Bay last week to attend to church business. News of the Florida conference’s vote not to ordain their class of provisional members because two of that group are GLBTQIA+ individuals laid a pall on the gathering for some of us. My own week had been more symptomatic than usual, so I wasn’t in a great mood already. As we walked toward the ballroom for the first session, a retired colleague asked, “Is life still good – even with the Lyme?” I admit, I considered for a moment before deciding that the answer was as it has been. Yes! Life is good.

With only few comments to my posts, I’m not able to know what you are going through but you surely have your share of “stuff.” (If you’d like to share that with me, I’m a pretty good listener.) At the risk of seeming Pollyanna-ish, my hope, my prayer, is that even as you face your obstacles – sometimes sinking, other times treading water or swimming – that you can hold onto a sense that:

Yes! Life is good.

Too Much Alone

A mark of shame. That’s the first definition that Merriam-Webster Dictionary assigns to the word stigma. According to the American Psychological Association, a stigma is “a negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency.” We’re each aware of personal qualities or ways of being that may lead to being stigmatized. We might wish, or even believe, that such stigmas are a thing of the past but while things may not be as bad as they once were, we still suffer for our perceived shortcomings. And this can affect our ability to lead full and healthy lives.

I’ve worked with a few counselors through the years, usually seeking tools to better navigate interpersonal relationships and the world in general. As recently as two years ago, a psychologist helped me navigate the transitions I was experiencing as I prepared to leave employment to focus on healing. The low-level chronic depression (dysthymia) I live with had seldom troubled me since the divorce. Until this pandemic. February 2021 was terrible – but it was terrible for everyone so I didn’t think about depression. This spring though, for no good reason, I struggled again. I’m doing better now but have begun the process that’ll allow me to check in with someone.

At one time or another, we all benefit from having someone listen to, and assure, us that we’re okay and will make it through this hard place. For many folks, friends or family fill this niche. Others of us prefer, or need, to work with a professional. (Again, no shame, no stigma!)

I recently started paying attention to the silence that would greet my words when I mentioned loneliness. I’d never thought about it before, but then I’ve seldom talked or written about loneliness (beyond journaling). It was my secret shame. I’m talking now. People of all ages and in all situations are lonely. It’s endemic.

In the last year, I’ve read lots of articles about loneliness. I’ve learned that it ages us and decreases our longevity. It weakens our immune response. It even makes us less likely to engage with others when we have a chance to connect. In thinking of widowed acquaintances who sink into isolation as well as my own avoidance of phone calls to family during lonelier weekends, I can affirm this.

In response to a perceived epidemic of loneliness, Britain initiated Loneliness Awareness Week. Additionally, that government has, for the last three years, put together a report, Tackling Loneliness, part of its goal being to reduce the stigma around loneliness and to make it easier for people to seek help.

While loneliness can adversely affect our physical and mental health, it’s not an illness in and of itself. Rather, it’s a state of mind describing the difference between the human contact we desire and the contact we actually experience. Think of it as a math equation.

Desired Connection – Actual Connection = Potential Loneliness

With that definition, we could dismiss our loneliness as simply wanting what we don’t have. And to an extent, it is. Yet humans are social creatures. Nearly everyone needs human contact. A theologian might say that we are made for community. (Yes, I’ve said this.) 

Loneliness was widespread even before the Covid-19 pandemic. Those who have been most cautious about their – or others’ – safety these last two years are probably the most isolated but we’ve all faced the limits of our comfort in solitude.

I never realized there’s a stigma around loneliness, but once I started looking I found the words linked everywhere. (I guess I’m just late to the party.) This is the power of stigma. It keeps us believing that our challenge, whatever it is, is a shameful thing – something to be hidden – and that we’re the only ones for whom it’s a problem.

Knowing this, I’m going to keep talking about it and I encourage you to do the same. While we may not know what to say to that lonely person, just by validating someone's perception we can help. We don’t need to problem-solve (resist, resist). We can simply listen. Helping another person to feel seen and heard is one of the best signs of caring!

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100 days

It’s Friday afternoon as I write this. I’m waiting for the sun to shift a little further north so that I can continue painting the south wall of the garage. I substituted at a couple elementary schools today and yesterday. Early tomorrow I’m planning to join a group for a birding hike at Rib Mountain State Park. Then at noon I said I’d help with face-painting at the UU booth at the downtown Pride event. For me, this is “busy.”

As I prepare to write though, I see the above picture in the desktop folder, waiting for its moment. And I wonder, how did my personal busyness supplant the empathy that has sometimes shut me down? The quick answer is that humans are not built to live in, or even next to, ongoing crisis. Not letting myself off the hook that easily, I continue to wonder, how did I go from reading every piece the New York Times printed about Russia’s invasion of Ukraine and the subsequent war to skimming the headlines and reading one, maybe two, pieces before turning off my phone? In only one hundred days?

That’s how long it’s been, 100 days since families, businesses, places of worship, everything was upended for our Ukrainian neighbors. One hundred days was enough to awaken the European Union, a sleeping giant no longer, and for folks there (and some here) to welcome thousands, no, millions of Ukrainian refugees. 

The world has not forgotten this crisis or the opportunity it provides for us to exercise our humanity as we reach out to others in their need. But… their need and others’ response no longer seems to be front and center. Too many other crises have crowded into the foreground of our concern. One hundred days seems like a short time. Yet how much has happened since Februrary 24th. We might think of the lives taken violently as young, white males used guns to assert their manhood. Or of police officers who forgot or ignored the basics of their jobs or their responsibility to those they serve. How many women and men are on edge about abortion access, or simply a removal of a 50-year-old right? How many ordinary folk have moved even further toward the edges of a spectrum that reflects their ability to connect with others who aren’t just like them?

Compassion fatigue is a term used primarily to describe the exhaustion experienced by those in helping professions. Psychology Today tells us that “the more such individuals open themselves up to others' pain, the more likely they will come to share those victims' feelings of heartbreak and devastation. This sapped ability to cope with secondary trauma can lead to total exhaustion of one’s mental and physical state.” While not diminishing the toll of such work, my thought is that many of us (ordinary) folks are similarly struggling. Merriam-Webster Online Dictionary’s secondary definition for compassion fatigue might – at least in odd moments – apply to most of us:

“apathy or indifference toward the suffering of others as the result of overexposure to tragic news stories and images and the subsequent appeals for assistance.”

How are you holding up? Can you still access your passion, your motivation to keep caring? Or are you used up and trying to give from an empty place? Those in the know say that a media fast can really help in circumstances like these. Have you taken one lately? What would lead you to try it? It's been two years since I attempted a media fast (and that one was brief) yet if something within you cheered when you read the words “media fast” you’d do well to listen to your inner voice. Try it.

Whether you’re free-faced or still masking, are you making opportunities to connect with the ones who feed your being? And no matter your workload, paid and unpaid, are you allowing yourself some sabbath rest? I admit, now that I’m not working full-time I seldom make this happen but I know it kept me going while I serving churches. I’m not talking 24 hours. Two hours spent browsing your favorite shops, 20 minutes doing walkabout in your yard or through your neighborhood, an hour cuddling with that special one – all of these and more can be sabbath if we let them.* Just invite the Spirit, or whatever you call her/them, to be part of your experience. And let yourself be refreshed.

And whenever you find that your attention to others’ crises is sapped, be gentle with yourself.

* I've heard from multiple sources that in the Mishnah (the first written record of the Jewish Oral Law) rabbis are strongly encouraged to include sex with their spouses as part of their Sabbath practice.