Saying “joy” and “dementia” in one sentence could sound like an oxymoron.
Like many, I have a fear that I might someday lose part of my mind.
Dementia’s not a far fetched concern: the stats on its occurrence rise significantly for every year we pass eighty.
Being with dementia can be tough for both patients and families. I’ve seen it up close. My brilliant scientist uncle was reduced by Alzheimer’s to being like a little boy. A favorite cousin spent half her life worrying that she might die from early-onset dementia, as had her Mom. She did.
And yet, heartbreak is not the whole story about dementia.
What may be almost as difficult as living with dementia is living within the narrative society has created.
We fixate on what people with dementia have lost, rather than the capacities they still have.
Patients and their families may feel ashamed by the condition as if it’s something to hide. It’s tempting to want to tuck patients away, where their deficiencies won’t disturb anyone.
Dementia is stigmatized.
My recent podcast guests, Mary Fridley and Susan Massad, of the Eastside Institute in New York City, call this dementia story “the tragedy narrative.”
This outdated story keeps us from exploring the possibilities for development, joy, and relationship that dementia has not taken away.
Mary and Susan are offering us a new narrative, using the vehicle of improvisational theatre to help us look at dementia in new ways.
The lenses we use shape what we see
Susan, retired from a fifty-year career as an MD, says that when you look at dementia through a medical lens, what you see is an individual problem that medicine can’t fix. The medical model sees deterioration and offers no hope.
But that’s not the only lens through which dementia can be viewed.
If we look through a social-relational lens, dementia is not just a problem for the patient. It’s a condition that affects many, including family, doctors, caregivers, and friends. Susan and Mary refer to this community affected by dementia as the “dementia ensemble,” a reference to the world of performance they know well.
Yes, dementia can take away memory and some mental powers.
Yet life is about much more than brain-powered activity. It’s also about laughing, loving, using our imaginations, being social, creating, and enjoying music, art. and nature. When we only see brain decline, we miss seeing the range of capacities people with dementia still have.
Towards a more humane outlook
Even if you don’t know anyone with dementia, it’s important to notice the idea, implicit in the tragedy narrative, that one needs to be fully-functioning, cognitively, to be a complete human being. Brains are good; they’re just not all of what makes us human.
No one, whatever their brain capacity, deserves to be written off.
When we devalue a group of people, we devalue ourselves, making what it is to be human that much smaller.
In our brain-oriented, success-driven, results-oriented world, some categories of people can be seen as incomplete, inferior, or even not necessary, including people with:
Developmental disabilities, like Down’s Syndrome
Parkinsons and other degenerative conditions that can affect how we think and function*
No wonder we try to tuck such people away, where they can be taken care of without being seen or honored.
*(When we start thinking this way, the list rapidly expands to include older people, people with other differences, crazy owners of Springer Spaniels, etc.)
Using improvisational theatre to bring a more life-filled approach to the dementia community
Mary and Susan run improv theatre groups in which the dementia ensemble, the community of people affected by dementia, are invited to play together, without consideration of their cognitive capabilities. Patients play with caregivers, family, and others. Improv opens up a way for everyone to connect, laugh, and have fun.
The key to improv lives in two magic words, “Yes/and.” For dementia patients, who hear a constant barrage of “No, that’s not true,” and “No, you can’t do that or say that,” it can be tremendously positive to hear the word, “Yes.” In improv you affirm and say yes to any “offer” your partner makes (such as a “The moon is looking purple tonight”), however fantastical it might sound. As an improv player, your job is to empower your partner. (“Yes, it’s purple, and I see a big green halo around it.”)
When my mother’s mind was deteriorating with old-age dementia, she talked a lot about “going home.” Talking “sense” to her was useless. It worked far better to play a bit, asking, “When are you leaving Mom?” and “Who will be there?” “What are you looking forward to doing?” Saying “No” to her stopped the conversation. Saying “yes/and” kept the connection going.
(I know “Yes/and” doesn’t apply to all situations, but it sure helps change the culture of “No, but” that can surround dementia patients.)
Like actors performing together on the stage of life.
In a great play, like Shakespeare’s, not all roles require speaking. An actor may stand on stage, saying barely a word, but you still know her presence is important to the scene. The actor playing the fool often has a key role.
In life, as in stage performance, many roles are possible, including valuable roles played by people affected by dementia.
I still pray that I won’t lose parts of my mind. It hurt to see my cousin Brenda’s decline. Yet when I was with her, I loved her smile, kindness towards others, imagination, love of family, and how she kept making art,up until the end of her life.
She would have loved to do improv. I think she would have been great at it.
If I acquire dementia, I will be comforted if the people around me know that I am still here, that I still matter, that I enjoy laughing, dancing and making art, and that my presence has a purpose, even if that purpose lies beyond the realm of what any of us can understand.
PS You can hear the podcast interview this post was drawn from over on the Vital Presence podcast. Click here to listen.
I used to think that the words in the dictionary had been there forever. Like “binge-watch.” (Added by the Oxford Dictionary in 2018.)
I also thought that words stayed forever, but it appears to be a case of “use or lose.”
Some perfectly good words have gone the way of the albatross and been retired by the Oxford Dictionary.
No longer will we be able to say “Snollygoster” when we want to describe a dishonorable person. Given our times, I think we still need it. The word was a twist on snallygaster — a mythical creature that preys on poultry and children and is said to live around Frederick County, Maryland. The folks at Harry Potter know all about snallygasters so that word is safe for now.
Occasionally, words go as viral as J-Lo’s latest outfit. In 2006, a fake word, made up by a fake commentator, on a fake news show, was crowned “Word of the Year” by Merriam Webster. “Truthiness,” invented by the brilliant Steven Colbert, was said to mean “truth as you want it to be” as opposed to facts. Sadly, this word is still viral.
Words are being created daily by adding an “ize” or “ing” to a noun. I call it verbacizing. This must make some writers cringe. I wince that business jargon like “on-boarding,” (integrating new employees into a business), has been accepted into the Oxford lexicon. Stop business-cizing words! (And you are welcome to make a word out of that.)
Translating across generations
If you want to speak with a teenager, there’s a raft of new words you should know, most of which have not yet made it into the Oxford. Since these were designed to be part of a secret code and will disappear as soon as I learn them, I’m not trying.
In the unlikely event that I’m invited to a teen party, I will buy an app that allows for simultaneous translation of teen-speak into English. With my phone and earbuds, I’ll be like a representative at the United Nations letting interpreters pipe words into me.
New with the pandemic
Oxford no longer makes us wait a year to receive new words. Between April and January 2020, they published a new set of have-to know words, which were already old by late March. Among them, (I quote):
infodemic, n. “A proliferation of diverse, often unsubstantiated information relating to a crisis, controversy, or event, which disseminates rapidly and…”
self-isolation, n.“The action, fact, or process of deliberately isolating oneself; an instance of this.
WFH n. “Working (or work) from home, either as a regular or permanent alternative to office work or on an occasional or temporary basis.”
Do we get to delete these at the end of the pandemic?
As far as I know “Zooming,” which everyone knows is a new word, is not yet official. You’re late Oxford! (See verbacizing, above.)
New Oxford additions that reflect the culture
I wish these words weren’t so timely:
awedde, adj.: Overcome with anger, madness, or distress; insane, mentally disturbed.” (Makes you think of…)
Hater–no definition required, just remember the word didn’t exist a few years ago.
Frankenfood (n): Genetically modified food.
Guyliner (n): Eyeliner that is worn by men.
In the running but not yet accepted
Lypophrenia. A vague feeling of sadness seemingly without cause.
Recent additions (pre-2020)
Nomophobia (2018) Meaning fear or worry at the idea of being without your phone or unable to use it. (Who me?)
Omnishambles (2019) means a situation that has been comprehensively mismanaged, characterized by blunders and miscalculations. Originally created to describe current British politics, it has clearly jumped the pond.
Nepenthe – An old word that means something that makes you forget sorrow. It was the anti-sorrow potion given to Helen in Homer’s Odyssey. Now is it late-night comedy? CBD? Cat videos on Youtube?
Lost in translation–words from other languages for which we have no equivalent
Zoom’s emerging as a technical hero of the pandemic. Millions of people are connecting in ways no one would have thought possible just three months ago.
After bajillions of uses, however, a new expression is popping up: “Zoom fatigue.”
“There is a special kind of tiredness that comes from a day of Zoom calls, despite the fact that they can take place without you ever leaving your couch (or your sweats). More strangely, this fatigue can hit even after meetings with coworkers you love and friends you miss very much.” Gianpiero Petriglieri, MD,
Despite being grateful for the emergency life raft of connectivity Zoom and similar virtual platforms offer, I, too, am wearing out.
Last week, I had a get-to-know-you conversation with a new friend I met in a virtual class. We used the old fashioned telephone to talk, untethered to the computer, and it was a relief.
I’m a mover. I hate sitting still for 90-minute Zoom conversations. Trying to pay attention. Trying to look at people. Sometimes I go audio-only, with a picture of me posted on the screen, so I can wander around the house using my headset. I listen better when I move. Honestly. (It’s not that I don’t love seeing you…)
I listen to webinars by weeding the garden. Dirt is a terrific antidote for too much screen time.
Apparently one of the things that makes Zoom fatiguing has to do with how we use our eyes. We’re creating a new distorted reality staring at people on screens without really making eye contact. Look at a room of Zoom-ers and almost everyone will be glancing somewhere else. We look sideways or down in order to see others on camera.
What’s going to happen when we have to make eye contact again? Will we greet each other by looking sideways?
Watching yourself on camera for periods of time is fatiguing. I will occasionally look straight at my computer’s camera to offer eye contact to others, but then I have to glance sideways to check out what I look like on-screen. Probably best not to know.
I have come to anticipate the dead spaces, technical glitches, and the ubiquitous ritual called, “Start of a Zoom call.” The first ten minutes of a meeting will often be wasted as people struggle with Internet issues or try to find their mute buttons (the most important thing you need to know about Zoom). Then we’ll have the fasten-your-seatbelts-before-takeoff lecture called “How to use Zoom for the first time” as our host prepares to finally launch the meeting. Finally.
If I were more enlightened I’d use those ten minutes for deep breathing, meditating, or practicing presence. It’s more likely that I’ll check my email once, or maybe twice, at which point my mind will start darting down the rabbit hole of thinking there is something else I should be doing.
Recently, Zoom has introduced the option of fake backdrops. Believe me, I’d prefer to see your messy office than the picture of you you sitting in front of tropical palms on the beach where I know you’re not. Plus, there’s the artistic problem of the little halo we see around your head.
The benefits of zooming in
Challenges aside, through Zoom and YouTube videos filmed at home, I’ve made some remarkable discoveries:
No one can see me close enough to know that my gray roots are growing out or even cares. (Theirs might be, too.)
Hollywood stars were not born with two-inch eyelashes and super-styled hair.
Celebrities are real people who can stumble when they talk and aren’t always that funny away from an audience. They have kids. I wonder if they really keep their houses that neat or whether a maid is standing off-camera, hopefully in a mask.
Bookcases. I LOVE the Twitter site: Bookcase Credibility, where the motto is “What you say is not as important as the bookcase behind you.” I have a passion for people’s bookcases. But remind me to remove any erotica from mine before I record business videos.
Then there are cool events that couldn’t happen otherwise:
I attended the wedding of a friend’s son, which took place on the other side of the country. Over 300 guests attended, frantically typing Mazal Tov as tears fell on their keyboards.
I was surprisingly moved when I attended my first Zoom memorial for a friend’s grandmother I had never met.
I experienced a virtual version of the Story Bridge process that I love. In little breakout rooms, small groups shared experiences of the pandemic and then created stories to perform before the larger group. The magic of connection occurred–not always my experience online.
The Alvin Ailey dancers put together this shelter-in-place video, A Call to Unite Alvin Ailey’s ‘Revelations,’ an excerpt from Ailey’s classic piece. Get ready to tap your toes. It inspired me to want to get moving and remember all the places in the world where we still can be dancing.
Zoom or similar video medium are here to stay. But if you’re Zoom-ed out, zoom back in by walking away from the computer and going outside or to a window. Stare at a real flower, a real cloud, or the eyes of your housemate. Your eyes and your spirit will thank you.
Some years ago, on a sunny day hike with a friend in Washington’s Cascade Mountains, I started running out of steam. The trail through the cedars was beautiful, but the switchbacks up the mountain seemed endless. As two youngish men in jogging shorts bounded down the trail ran towards me, I yelled out, “How much farther is it?” Without missing a step, they shouted, “Not too far,” and were gone.
Forty minutes later, I hadn’t seen a peak of the summit. This, in my book, was “too far.” As the trail opened into a clearing, I thought we might be near our goal. A couple walking down the trail approached and I asked again, “How much longer?” The man said, “Just a few more switchbacks.” 30 minutes later, I’d had it with “just a few.” I sat on a rock and fumed. I’d used up my energy thinking we were almost there, and we hadn’t yet summited.
In contrast, on another Cascade hike, I was again tired (a theme here?) after walking for what seemed like hours. I asked a descending hiker, “How long?” and she said, “You’re about halfway there. The last section is really steep, and you might want to stop, but keep going. It’s worth it. The views are amazing.” Initially disappointed by the distance ahead, I decided this was the long haul and I needed to pace myself. I stopped periodically, took breaks, and ate part of my lunch before we reached the steepest part of the trail. As we ascended the last stretch, I sweated and groaned, but I knew what to expect. She was right. The views were stunning.
Research has shown (sorry, I can’t find the source) that it’s less stressful to be told that an outcome is a long time away than to be told that something will happen soon, only to have the target date pushed out again and again.
Many have been treating the pandemic like a short hike, asserting that it should be over by now.
It’s time to think, “long haul” and acknowledge that although the ascent may be difficult, we will make it through.
I get the frustration. I know what it’s like to want to something so badly that I’m tempted to act precipitously. Once, despite a high fever, I wanted to attend a concert that I’d been looking forward to for months. Another time I wanted to take my horse to an important show, knowing that he wasn’t quite sound and needed more time to heal from a sole bruise. Fortunately, in both cases, my husband and friends talked me down off of the ledge of my crazy, “but, I want to” passion. I grieved for my losses but was glad that I’d been spared the consequences of acting prematurely.
Pack for the long haul
Time to recalibrate expectations for the pandemic and think long-haul. If the shelter-in-place guidelines can be safely lifted tomorrow, terrific. If they need to extend restrictions until October, that’s all right, too.
Of course, the best would have been to think long haul from the beginning.
At least now we can start packing the emotional/spiritual supplies that will see us through the months ahead. Lower our expectations. Treat others with kindness. Release blame. I’m sure you already have plenty of insight into what works for you.
The fuel of imagination
We’ll need energy and stamina, which is why it’s important to put our imaginations into training. All of us.
We need imagination to create visions of the positive future that awaits us.
“Returning to normal,” isn’t a vision of that future. It’s a deluded hope of a “normal” we aren’t going back to, and probably never even experienced.
The imaginations we need will use pictures, images, dreams, stories, and songs to convey what a new and better world could look like.
Some people consider imagination “not real.” Untrue. It’s a very real force that lies behind some of the greatest innovations. Einstein used his imagination, more than equations, to arrive at his ground-breaking theories.
Imagination is the field from which the future grows.
No one person can imagine that future for all of us. The path ahead will emerge from the many visions of those who dream what lies before us.
Most serious mountaineers know the importance of nutrition. We can’t sustain ourselves on a diet of bad news. We need to stay aware of what’s happening, but I’m thinking a diet of four parts uplifting information, stories, or observations to one part news might be a workable ratio, Or maybe it should be eight to one.
To that end, I’m sharing part of today’s uplift: an opportunity to hear James Taylor performing “You Can Close Your Eyes” from home, singing with his wife and son.
My go-to default for almost anything, miserable or exciting, is learning. I would have rephrased Descartes or Hamlet or whomever to say, “If I can learn, I am and that is never a question.”
COVID-19 has opened the door to a slew of learning opportunities. Zoom is now a household word that’s fast becoming a verb instead of a company name.
Learning is better than blaming. Full stop.
Don’t blame the guy who’s sick next door or Asians. It’s a shallow catharsis. I’m deeply offended when people in high places call COVID-19, “The China Virus.”
One, it’s inaccurate.
Second, it’s racist. Asian-Americans in Seattle have already reported hearing more racial slurs thrown at them. Despite the challenges the virus brings, it’s our opportunity to see how all the peoples of the world are connected if racism doesn’t pull us apart.
Third, China virus sounds like another way to demonize the virus–the enemy did this to us.
We’re not effective when we demonize what we need to learn about.
Taking the enemy out of the forest
Last week I was engaged in battle with three ferociously invasive plants: Himalayan blackberries, Lamium, and stinging nettles, a thug team that is trying to take over my entire woodlands.
Weeding them out takes so much time that, in recent years, I practically gave up. I started HATING the threesome. Resenting them. Avoiding them. Dreaming of bringing in tanks, bulldozers, and herbicides (just a fantasy). But doing very little.
This year, I’ve tried a different approach: weeding in small increments. As I stopped worrying about the whole forest and concentrated on a small patch, I relaxed and became INTERESTED in my adversaries instead of hating them.
For example, you have to respect the Himalayan blackberry for being tenacious, even in the harshest of droughts. Introduced to our region by the famous horticulturist Luther Burbank (we all make mistakes), the blackberry’s root ball is a work of art. The plant’s sturdy stalks grow into twenty-foot arches, stunning in their way, when I’m able to forget how the plant’s thorns have slashed my arms.
Lamium is a groundcover, in the mint family, that would be happy to colonize our whole woods. One small plant can send out roots, and bingo, the forest floor will be coated in a mat of pretty silver, green, and purple leaves. If Lamium only respected boundaries, it’d be the perfect plant for dry shade.
And stinging nettles. OK, nettles are natives and will be with us long after I’m gone. I respect them for that. The small hairs on the back of their leaves can sting for a day if you have the bad luck to brush up against them. Once they’ve taken over, no more strolling through your woods. Their tough, thick root systems are more intricate than the sewers of Paris. Yet, if you can manage to harvest and steam them, nettles are incredibly nutritious.
When I stop demonizing these plants, I learn about their ways. Plus, I feel more peaceful.
Instead of feeling like a driven, weeding-monster, I nestle into the woods and enjoy the magic of loam, animal tracks, and bird calls. Last week, I discovered patches of native bleeding heart plants–a surprise I would have missed if I hadn’t been crawling on my knees through the woods.
Bottom line: I don’t minimize the risks of COVID-19, a different order of danger from what I face in the woods. Yet, even with the coronavirus, we learn more when we stop demonizing and start, as good scientists do, observing.
Speaking of learning
During this time of shelter-at-home, incredible learning opportunities are spawning every day. From colleges to yoga classes, everyone’s using online group software like Zoom to reach their constituents and beyond. Free seminars and music performances are offered as gifts to the many who are feeling isolated. For learning geeks like me, it’s prime time.
Here’s what I discovered with a minimum of searching:
Join 1.3 million people in learning about happiness. Yale has just made its most popular course ever “The Science of Well-Being” class free to the online world. Study the science of happiness and surprise yourself, while watching the amazement on young Yalies (recorded in 2018) as they learn that the big salaries they crave won’t be their ticket to happiness. Dr. Laurie Santos, the course’s lively instructor, looks young enough to be a student herself. As a self-proclaimed data-nerd, she backs her teachings with lots of research.
It’s not the easiest quality for me to find in these dystopian-feeling days.
So I turned to a fourteenth-century mystic who somehow managed to find hers in the darkest of times.
Julian of Norwich, an anonymous anchoress (recluse) lived during a time in which a third of the population died from the bubonic plague. Julian may have lost her own children. The world reeked of poverty, pestilence, and war. Then, on the brink or her own death, Julian received visions that stayed with her for the rest of her life. She proclaimed:
“All shall be well again.”
Julian spent the remainder of her life living in a cell built into the walls of the Norwich church, with only a window from which to view the world. Not a lifestyle that would appeal to me, but a good way to spend one’s life in prayer and conversation with God.
In researching her famous quote, I learned two things about Julian.
She didn’t invent the words “All shall be well,” but attributed them directly to God. (I use the word God because that’s the word Julian used, adapt to your preferences.)
She didn’t use them lightly. Apparently she first had to duke it out with God. “Dude, can’t you see that’s there’s suffering, pain, and evil everywhere? The world is NOT OK and not likely to be getting better soon. How can you possibly say ‘All shall be well?’ “(My paraphrase.)
God was not forthcoming with an answer.
What Julian received instead was a deep sensing, a trust she didn’t have to understand, that the future would bring wellness.
It fueled the remainder of her life.
“All shall be well” might sound like an invitation for passivity, but for Julian, it was an invitation to work. She spent her days writing reflections and helping the locals who came to her cell window for support, consolation or advice.
Is our ship going down?
Many of us today feel the ticking clock of climate change and the imperative to do something before our environmental ship goes under. We watch our core values being mocked, see greed in action, and observe the stalemate of our political systems. After decades of environmental near-complacency, we risk unprecedented disaster.
How can we believe in the wellness of the future and still act?
We have to trust and feel urgency. When we work out of a negative view of the future, we sprinkle gloom into what we do.
Granted, there’s a lot of data that could justify apocalyptic conclusions.
Trust invites us to dig deeper.
It’s not a matter of making a list of the good and the terrible about our prospects and then adding up the results.
Trust invites us to go within ourselves to discover an inner equanimity that doesn’t preclude sorrow or even rage.
Trust is a stand we take, not a conclusion we draw.
Trusting creates an energetic container in which to work with goodwill and hope, collaborate, and look for solutions.
Working hard, with hope
Just today, I read about two positive hope-worthy initiatives (among the thousands out there).
My friend Rondi Lightmark founded the Whole Vashon Project, to give her community a way to “stand up to climate change with creativity and hope,” and showcase the positive work being done. Thus far, over a hundred of local businesses have made green pledges as part of the initiative
76-year-old author, and theologian Matthew Fox teamed up with two activists half his age to create an intergenerational, inclusive community called the Order of the Sacred Earth, inviting people to deepen their commitment to the earth with the vow:
“I promise to be the best lover and defender of the Earth that I can be.” (I signed on.)
Initiatives are everywhere. (What’s inspiring you?)
It’s time to trust and garner hope, without denying our grief.
I still plant oak trees. I wouldn’t do that if I thought the world was like the Titanic.
Staying positive doesn’t require knowing HOW the world will evolve. Julian didn’t.
I can offer no PROOF that “All shall be well.”Julian couldn’t.
I wish I could save the world through my scientific knowledge, medical training or political acumen, but, like Julian, I have none of these.
What I can do is strive for a sense of equanimity and then do what I’m called to do.
Today, I sing in the spirit of Julian’s vision. Here are her words set to music by the late English poet and songster, Sydney Carter, and sung in one of my favorite old recordings by Anna Mayo Muir, Ed Trickett and Gordon Bok,
Join me. It couldn’t be easier to sing.
Loud are the bells of Norwich and the people come and go. Here by the tower of Julian, I tell them what I know.
Ring out, bells of Norwich, and let the winter come and go All shall be well again, I know.
Love, like the yellow daffodil, is coming through the snow. Love, like the yellow daffodil, is Lord of all I know.
Ring out, bells of Norwich, and let the winter come and go All shall be well again, I know.
Ring for the yellow daffodil, the flower in the snow. Ring for the yellow daffodil, and tell them what I know.
Ring out, bells of Norwich, and let the winter come and go All shall be well again, I know.