My mentor and friend Bernie has been told by doctors that he has a year left to live. Thanks to Bernie, I’m now aware that I—like him—have a choice here. Each new day now, actually, I have this choice: will I choose Bitterness, Sweetness, or Bittersweetness as my companion today? Luckily, thanks to Bernie, I don’t have to face this choice alone anymore.
Bernie has been playing, studying play, learning about play, and writing about play since the 1960s (as an adult, that is—I’m sure kid-Bernie did more than his fair share of playing, he probably drove his folks nuts). It didn’t occur to me until just last week that I should search his ginormous and playful database of deep fun (Deepfun.com) for the word “bitterness.” But then I did. So I did. And I was stunned by what I learned. Which is this…
I learned that playing, studying play, talking about play, thinking about play, and writing about play and deep fun and all the ways in which they manifest themselves around the world is a damn fine way to spend your life. There is a Sweetness in Bernie’s life that shows up in my imagination as a small, slightly goofy, and often mischievous creature sitting just above his right, and sometimes left, shoulder. Sweetness is an angel and a devil combined, the dappled color of a turning fall leaf, and he whispers “Let’s play!” and “Oooo, let’s try that!” and “Come on, let’s go there!” into Bernie’s ear every day. How Bernie spends his time here—the playing and the studying and the talking and wondering and the writing—all these things do a remarkable job of keeping Bitterness from stepping into his life uninvited. All those decades of writing—writing practically every day, WOW—and it’s almost as if Bitterness was listening for places to enter, waiting for just the right moment, but very few Bitterness-warranting moments appeared. So he contentedly sat on his swing, swinging.
You see, in my imagination, Bitterness sits swinging on an old tire swing dangling down from a tree branch, watching Sweetness and Bernie race around the world, and Deepfun.com, like children playing tag at twilight. Bitterness is smiling, watching, patient, and waiting. Bitterness isn’t sinister: more like the introvert kid content and enjoying the solitary swing and happy to have the more rambunctious others just slightly farther away but still in plain view. Bitterness doesn’t need to step in much at all, because clearly Sweetness and Bernie have got this. Because Bernie listens to Sweetness most days, Bitterness knows that Bernie is ok. Bernie invites Sweetness in to play most days, or vice versa. So much so, that they’ve even started to look a little bit like each other. And some days now, I notice, it’s Bernie who is the dappled angel-devil creature sitting on Sweetness’ shoulder, not the other way around. (Bernie also married Rocky, who comes from strong Sweetness-embracing stock. Lucky, lucky Bernie.)
As I wade through his six decades of writing, I notice that Bitterness moved visibly onto the Deepfun.com playground just six times. Go and look and see. And wow. Each time Bitterness stepped in, it was to visibly demonstrate how to invite Bitterness in and how to play with Bitterness. Bitterness, I learned, wants to play too. He’s just different. He’s not Sweetness. Not so easy to play with. Here’s a summary of what I learned. To get the full demonstration, search for “bitterness” yourself on Deepfun.com:
- October 13, 2003. In a post called “The Dancing Referee,” Bernie links to a video where we get to watch a man bring grace and exuberance to the difficult role/job/profession of sports (soccer, in this case) referee. Bernie notices “The officials are there, not to have fun, but to keep the way clear so that fun can be had by others. They allow the players to leave aside concerns about fairness and safety, so that they can focus everything, everything on the game. But refereeing is often a difficult role, one that leads to argument and bitterness, insult and injury. To find a space for joy in all this, to transform yourself from an official to a performer, requires courage and commitment and deep enjoyment. It kind of makes you think that anyone, regardless of role or position or function or job, can find fun, if fun is what that person is ready to find.” He ends by reflecting on a sport that doesn’t require referees (Ultimate Frisbee asks players to be their own referees) and on one that does, saying “To understand fun, we must find ways to celebrate both.” Celebrate both even though I’m not a fan of both? Hmmm. Deep fun, indeed.
- May 13, 2008. In a short post called “Pangea Day,” Bernie shares a link to a movie in which people reimagined a border wall into a volleyball net. Hmm. So Bitterness and fun belong together? Even in the presence of the worst humanity has to offer? Hmmm.
- June 28, 2008. In a post called “Sneaky Fun,” Bernie shares a link to a site designed primarily for people feeling bitter at work. People who work at computers, that is. The site transforms the Internet (a virtual place where people sneak away from tedious real-world work to explore and play) and makes the Internet look like a boring Word document on your monitor, so that you can sneak in a bit of fun under your bosses’ noses. Helping the Bitter at work be a bit naughty? I love it.
- April 25, 2011. In a piece called “Backstory,” Bernie talks about getting overwhelmed by the world and its cruelty and messes. “I want to rant and rail, to make sounds of fury, to bite the bullet of bitterness and spit it in the face of stupidity, in the hands of brutality, in the eyes of cruelty and stuff.” Damn. Wish I’d written that. And he follows that with writing down his own purpose so he can more fully look at it—simultaneously giving the world something better to read about themselves: “I write these posts to help make things a little more fun. That’s exactly, precisely what I’m here for. Fun for me, for you, for anybody who isn’t finding enough light to delight in their days… For me, play is a political act. This is what I truly believe. Playing, celebrating everything with everybody, anybody. It’s as revolutionary as a protest song, as government changing as a rally. For me, fun is healing, is health made manifest. Body health, social health, mental health, soul health.” As he writes, I think to myself “Play is an act of revolution, and clearly I’m all in.” And suddenly the whole world, and Bernie, and I are so beautiful that it makes me cry. Dammit Bernie. When did Sweetness jump onto my shoulder?
- October 20, 2015. In a post called “Elder Fun,” Bernie plays with a distant friend recovering from a stroke, demonstrating how to let go of old patterns of fun to embrace new patterns and deeper fun as we age. Fun and Bitter. Bitter and Fun. Hmmm.
- May 8, 2017. At this point, Bernie and Sweetness are living with the reality that he has less than a year to live in this beautiful, beautiful world of ours. And so am I. After reading his essay, “Play a little, talk a little, play a little, talk a little, play, play, play, talk a lot, play a little more,” (Damn, dude, your headlines just keep getting better) in the comments following the post, a friend describes the piece as “Bittersweet.” After so many years of watching Bernie and Sweetness play together, Bitterness himself, it seems, has been transformed. Finally confident that he will be invited to play, he steps onto Bernie’s own page now, feeling mostly lucky and just a tad regretful, saying “Thank you, friends, you’ve changed me. I’d like to join you in the fun. But please, call me by my true name: Bittersweet.”
And so we welcome Bittersweet into our play—a rag-tag group we are, fond of fools and filled with accidental genius—playing tag and giggling again, as glorious and warm and present now as Twilight herself.
P.S. Speaking of swings and playgrounds, Bernie has gotten a lovely company to donate some really cool swings to his local park, but they need $4,500 for the installation. If you have a little extra money, consider donating it to this most playful of causes. Go here for more details: http://www.deepfun.com/gift-family-community/.
I lose the mom I grew up with to Alzheimer’s every day. This loss began roughly 12 years ago for me and is with me every day. Others who love her live with similar loss—we each lose her in different ways and stages.
You may see her smiling face in photos and think that the woman you knew is with me. You are wrong.
The woman with me today is someone entirely new. She’s new each day now. This woman speaks very little. She doesn’t follow conversation. She no longer sleeps poorly: she sleeps much of the time. She hasn’t known my name, or her own last name, for more than a year now. She calls dad, lovingly, “The guy.”
When Daniel and I walk in, mom usually recognizes Eva the dog first, then looks up, remembering that she loves us. Or, she at least loves us for bringing a dog to play with her. She smilingly pulls the dog and I down the hall to her dresser to show us the new bracelet or socks or sweater that the guy bought her yesterday. “He’s so good,” she often says. The love and strength that it must take to awaken with a stranger in your bed each morning? Yeah, I can’t even fathom that one yet. Its a love beyond all reason. I revere both parents more as a result.
Spoken and written language gone, mom can’t tell her stories in traditional ways, so she gets creative: using props, gestures, silence, telepathy, empathy, almost-right words, and half words. Which is cool. I love her stories now: each one is a collective haiku crafted of magic. Dad’s stories have lengthened, artfully weaving past and present together: a shawl around our shoulders.
Some days, while mom and I are walking down the grocery aisle she says to me “Hey! I really like you.” And I flush, flattered, knowing that she likes me as a stranger. “That must hurt,” people assume and, too often, say. But most days it doesn’t hurt. I am with a woman who likes me for me. Because of who I am in the moment. She likes me without expectations, family ties, history, or baggage of any kind. And maybe sometimes, because I just put lemon cake—a favorite of hers—in the cart. This sweet new woman likes me as a total stranger. I like her too.
Loss has shown me how “I like you” can be more powerful than I love you.
Loss demonstrates that the coolest stuff is always happening around the words. Difficult to see at a distance, while distracted, or worrying. Loss stills me into better noticing.
This year, I notice that staying with loss has immunized me considerably against the promotion of the always-winning, always-first (and ultimately violence-inducing) cultural myth and its associated orange-haired icon that flashes out at me from all the screens. Those who scream that always winning makes us strong and powerful ultimately haven’t got a clue. Been there. So very glad to be done with that.
If you want to feel strength, gently stay with your loss or a least visit on a regular basis. Listen. Hold her hand. Slow down with her. Be her friend. Walk into and through anger with her: into and through hate. Weep. Breathe. Go for a walk. Accept help from nature and cool people. Eat healthy foods. And put an occasional lemon cake in the cart to mend your hearts. That, friends, is what deep winning feels like. It honors loss. Deep winning eases minds and lifts hearts in all directions around it. Deep winning is hearing “Hey, I really like you.” from a total stranger who you—lucky you—already love like family.
For the past three months, I’ve been an almost daily care partner for our mom, who is moving into late-stage Alzheimer’s disease. Our family has been living with the disease for a decade now. Dad has been caregiving for mom, mostly on his own, for more than a decade (because he saw the disease long before the rest of us did). I am utterly amazed by what he has done. For the past seven weeks, I was with them 24×7 as we travelled across the country and then prepared and sold their home, boat, and trailers. I finally—fully—saw what a toll this is now taking on my dad. I wish that I’d spent this intensive time with them sooner, because there are things I wish I could have helped him do for himself years ago. That said, how about I drop the guilt and just share the beautiful things I’ve learned this month?
1. Scheduling a weekly meeting or call with others like you
Care partners need a place to vent. We need a place where people can completely relate to what we’re going through with insider knowledge, a willingness to listen, and without judgement. We need a safe place to weep. A place to tell our stories of the adventures of Alzheimer’s: many of which are remarkable and amazing and some of which hurt far beyond what we think we can handle. We need this. Period. I don’t care what you have to do. Make this happen.
2. Saying “Yes!” when loved ones freely offer gifts
I learned to do this only this year. Now I see why it took me so long. To this day, as a caregiver, my dad’s go-to response to offers of gifts and help is to say either “You didn’t have to do that.” or “You shouldn’t have done that.” or “No, I’ll do that.” or, my least favorite, “You can’t do that.” (The hell I can’t buddy!) This is not the voice of the man who raised us: the man who accepted our gifts and allowed us to help do everything as kids (as the imperfectly stained fence can still attest). I empathize with wanting things done a certain way: especially in the face of a chaos-generating disease like Alzheimer’s and when your priority is protecting a family member who needs significant quiet, order, and a reliable schedule to reduce the load on their always over-worked brain. And still, from my perspective, learning to say “Yes!” to others, when gifts are offered freely and in love, is among the deepest gifts that attend this disease. Mom is the QUEEN of this. She’s a rock star. To survive as a long-term caregiver, and to thrive as a family, caregivers and care partners also have to become really good at receiving gifts and help.
3. Letting go of people unable to give you the benefit of the doubt right now
The effort required by Alzheimer’s caregivers (especially those who struggle with receiving help) is so intense that I compare it to being caught in the gravitational pull of a black hole. There is no getting away. No down time. All your energy must be directed inward to yourself, immediate-other care partners, and the person with Alzheimer’s. And this can go on for years. This means that you become a very different friend, family member, neighbor, citizen, employee, manager, worker, playmate, life partner, spouse, sibling, gardener, and human being than you used to be.
Your ability to people please, and even to work out small differences, outside your immediate small circle all but vanishes. Communication to the outside world, for example, becomes difficult and often impossible. This can hurt people around you who consider themselves part of your inner circle but who, for a while, must—for your sake—be pushed outside that circle. Some people will turn on you for doing this. Dislike you. Even hate you. They will ascribe the changes in you to all sorts of interesting things—from selfishness to stubbornness to flawed character to greed to arrogance to indifference to not really listening to them. It’s funny. People with ample free time can do a great job at fooling themselves into believing that they can judge, fix, and change other people. We can’t. We cannot suffer these same delusions: we simply don’t have the time and spare energy. Instead, we must let people go. In our case, we’ve let go of a whole lot of people across the last decade. It hurts, I’ve learned, only as long as you fight it. Only as long as you beat yourself up about being unable to fix things that you cannot change. Those who matter to your future will accept you as you are even now, they will either forgive you or see that you don’t need forgiveness, and—I’m learning now—they will find their way back to you eventually. Those who fiercely hang on to you do come back. Those who fiercely hang on to judging, blaming, or trying to change you are most likely gone from your life for good. This hurts. And yet this, too, is a blessing.
4. Recognizing that your pain is their pain
Many people—our mom included—experience a significant increase in empathy living with Alzheimer’s disease year after year. For my mom, at this point, living with the disease doesn’t appear to be the hard part. She accepts all the things she can no longer do. Including, at this point, speaking no more than one or two words at a time. She graciously accepts gifts. Gratefully allows us to help. Loves life most days. The same has become true for me, most days. Right now the hard part for her—and for me and my sister Jen—is watching my dad try to do everything himself, rush, exhaust himself, get frustrated, get angry, and beat himself up emotionally and physically about his own mistakes and completely normal exhaustion-generated human lapses in memory and judgement. When dad is happy, mom is happy. When he hurts, she hurts. When I am happy, Jen is happy. When I hurt, she hurts. Prioritizing ourselves, our health, and our well-being as caregivers and care partners IS how we best serve our loved ones. Neglecting ourselves and our needs hurts not just us: it hurts everyone connected to us.
5. Dropping guilt
Guilt is you carrying a kayak across the desert. You may have needed it in the past for something, true. And you don’t need it anymore. Your family doesn’t need it. Your community doesn’t need it. Certainly the person with Alzheimer’s doesn’t need it. Your guilt is not needed here, care partner. It is unnecessary weight. Let it go. And if you can’t, connect with places, people, and things who help…
6. Opening to nature
What we need in our lives now is more time with people, things, and places that allow us to just be who we are right now, feeling what we feel, as messy as we really are, and that/who show up without a deep need for reciprocity, fairness, correctness, and perfection. We humans may not be great at doing this, but we do at least instinctively turn to nature for help. Here is a partial list of things that are better at allowing us to just be ourselves than most humans are. Increase your contact with one or more of the following things: trees, flowers, dogs, cats, deer, fish, grass, vegetables, fruits, sky, clouds, sunshine, rain, lakes, rivers, oceans, forests, fields, moss, tree stumps, sunsets, sunrises, beaches, rocks, driftwood, soil, seashells, fog, mist, wind, leaves, meadows, birds, music, poetry, art, babies, and puddles. Also, increase your time in spaces that make you feel welcome (from an inviting sunbeam to a soft chair to a neighbor’s front porch). Spend more time in places that make you feel grounded, relaxed, needed, and home (from the presence of a dear friend or sibling to a street or park or forest that you love).
7. Opening to new community
My folks have done a great job of this the last few years, and I think it saved us all a great deal of pain. Open to becoming friends with new people. Different neighbors. Other caregivers who appear to have literally nothing else in common with you beyond caregiving. Talk to random people in stores and restaurants. To friends of friends online (or even strangers if you’re up for it). Delivery people. People in doctors’ offices. People of different ages and energy levels and cultures and backgrounds and previously imagined societal levels. Find authors and characters you’ve never encountered before. People and animals outside your comfort zone. It is these people—this new community—that is integral in helping you survive and thrive as a care partner and as a family. You need them. They save you. And unlike the old you—trapped by old beliefs and ways of thinking—this time you’ll be more fully aware of the fact that these strangers, these new-to-you friends, are saving your life. Co-creating your life. You’ll be more fully grateful for it this time. And, remarkably, in your own gratitude and openness to new community, you will save them in return. Without even trying…
8. Experiencing everyone as a leader
When she’s well rested and feeling supported, our mom makes friends with everyone and everything she meets now. Without even trying. Most days, she couldn’t care less about your size or shape or past or abilities or flaws or political affiliation or gender or age or orientation or beliefs or IQ or planet of origin. In her presence, you are beautiful and perfect as is. If you slow down, and join her in being fully present, it’s easy to see the same in her.
Last week, for example, in the middle of a large family gathering, she left the room for a while and then walked back into the middle of the kitchen wearing only her swimsuit and shoes. She stood smiling at us, waiting patiently, until we offered to join her in the lake. And then we did. And then it was wonderful.
Does it really matter that she can no longer say “I’d like to go swimming now. Will you join me?” Does it really matter that she no longer knows what state we’re in? Or our names? Or her own last name? Mom has become a better leader every year of her life with Alzheimer’s, because she sees everyone around her as a leader too. She is such an amazing gift. In her presence now, we are all leaders. We are all gifts. And we are all helping.
Sympathy is the standard response I receive when I say that our mom has Alzheimer’s disease. If only the world knew how incredibly lucky we really are.
There once was a land called Don’t Belong in which the people panicked and began believing that it was important to create a list of all those who didn’t belong. At first The List seemed small and harmless enough, so people didn’t think too much of it:
- foreigners don’t belong, obviously (they’re too different and too likely to want our stuff)
- natives don’t belong either (they’re also too different; too likely to want their land back)
- some foreign religions don’t belong (any that are too unforgiving, unpredictable, violent, and different; and too likely to perfectly demonstrate how distant we ourselves are from God)
- women don’t belong (they’re too intuitive, too nurturing, too emotional, and too complex, making them suspiciously like many foreigners and natives)
Because the people were busy and weren’t thinking about it too much, The List rapidly took over and wove itself into the fabric of the culture itself. People were no longer in charge. Only The List was. The moment this happened, panic became the norm of public life in Don’t Belong. The List expanded to include:
- members of the LGBTQ community (too understanding, too stretching us to grow, and/or too fabulous)
- men who are anything less than “100% all in” on greed, patriarchy, capitalism, and/or hierarchy (too much like women)
- babies and young children (too messy, too loud, too playful, too uncontrollable)
- teens (too hormonal, too irrational, too impatient, too energetic, and/or having bullshit detectors that are too powerful)
- elders (too much time to think, too generous with their time, and/or too physically frail to be of standard use to the system)
- people of color (too colorful, too angry when persecuted or killed, and/or too opaque)
- differently abled people (too likely to make us think, feel, and act outside our normal frame of thought and reference)
- the devoutly nonreligious: atheists and agnostics (too non-conforming, too likely to ask questions, too disinclined to value 2,000-year-old words above the words of living friends and neighbors, and/or too arrogant)
- the traditional devoutly religious: Muslims, Jews, Hindus, Sikhs, Christians (too prayerful, too likely to smile or break into song or feed the hungry, and too likely to argue amongst themselves)
- the irreverent religious: Rastafarians, Wiccans, pagans, Buddhists, Pastafarians, the “spiritual but not religious” (far too free for their own good and ours; also, too likely to laugh off shackles)
- people who work for a living by making, improving, cleaning, and/or repairing things with their hands (too non-greedy, too dirty, too financially poor, to distrusting of “upward mobility,” and/or too likely to also be or become artists someday)
- artists (too loving of life, too unwilling to sell their souls long term, too able to demonstrate abundant life outside financial security, and/or too likely to create very beautiful and very terrible things, both of which disturb the norm)
- scientists (too curious, too needing of evidence, and far too likely to hypothesize)
- people larger or smaller than an admittedly unachievable “average” size (too unlucky of genes or too little self-control, too likely to stretch the boundaries of “normal”)
- teachers (too devoted to the future, too inclined to respect and encourage individual differences in learners)
- people of opposing political parties (too not like “us”)
- anyone denied access to money, resources, housing, food, water, and/or education (too lazy, too draining of collective resources, too criminal, and/or too personally demonstrative of the massive failings of the current system)
- nonconsumers: people who regularly gift, barter, share, and trade; who buy and need remarkably little to be happy; grow and make their own food; and/or make their own clothing or shelter (too damaging to the economy, too self sufficient, too happy) 
- people sensitive enough be become “sick” or “addicted” within a deeply sick system (too depressing, too canary-in-the-coalmine for comfort)
- people unable to pay off debts in their lifetimes (too lazy, too criminal, too unlucky, too stupid to work the system or put themselves first, and/or too likely to chafe at a lifetime of indentured servitude)
- demonstrators (too loud, too messy, and too disturbing of established and respected traffic patterns and mindsets)
- voters (too likely to vote, too easily disappointed in leaders, too hopeful)
- all animals, birds, trees, soil, air, rivers, lakes, and oceans and those who listen to and work with them (too messy, too vulnerable, too non-competitive, too exploitable, too “woo woo”)
- Anyone who answers “All of the Above.” or “None of the Above.” to the question “Who are you?” (too confusing)
In Don’t Belong, The List was the law of the land. Those living in Don’t Belong were bound by it. Unfortunately for everyone back then, the only way to change it was to just keep adding more “don’t belongs” to it.
Eventually everything and everyone on the list was pushed out of Don’t Belong. Only a small, entirely transparent group (called The Invisible by others) remained. The streets grew very quiet. The Invisible mistook the silence of death for peace. They renamed those pushed out The Left Behind and congratulated themselves on being Peace Bringers and Greatness Makers. The only true Don’t Belongians. But with almost everyone and everything pushed away, they were more fearful than ever. They built a high wall around the land to keep The Left Behind out. In Don’t Belong, soon death became preferable to becoming a Left Behind, and more people were becoming Left Behinds every day. The rates of suicide in the land skyrocketed. Nobody left in Don’t Belong could figure out why.
Fortunately for the land of Don’t Belong, soon almost nobody was left in the land to enforce The List. The List itself began to gather dust. After all, to qualify for staying in Don’t Belong the few who remained were not allowed to grow old. They also couldn’t reproduce. They were running out of packaged food and bottled water too. Some worked night and day to build perfect mechanical offspring, but they ran out of time. In the span of a single generation, the walled land of Don’t Belong stood empty: completely devoid of life.
In that same moment, the polluted air began to return herself to clean. The polluted rains and rivers joined clean air and returned the water to clean as well. Seeds and bees drifted back in, and soon trees and other vegetation began to grow. Birds and animals quietly wandered back in.
The remaining humans were the very last to return to the land of Don’t Belong. They had been hurt the most deeply. After all, they’d been banished and renamed The Left Behind by their own kinsfolk. They’d been hurt deeply in watching their kinsfolk lay waste to a home and a land that they loved and were forever connected to. They bore the scars of strip mines and deforestation and food deserts and gunfire and misdirected hatred in their very skin. This made them extra sensitive. Also, blessed with wild and creative imaginations, they couldn’t quite believe that the invisible residents/tyrants/murderers of Don’t Belong were truly gone.
Before the humans would enter the empty land—their home land—they decided to hold a gathering of all on the outside edge of Don’t Belong, in the long shadow of the wall.
“What if they aren’t really gone?” one young human voiced the concern of the whole. “How can we possibly arm ourselves against The Invisible now? I fear we don’t have it left in us.”
Another tentatively offered, “Could we find that old Don’t Belong list and put only The Invisible on it? Banish them as they did to all of us?”
A murmur rose up from the crowd. Everyone thought and talked at once. Those banished from the land—people who’d been on The List, pushed out, and abandoned—were not so easily persuaded to put others on The List, no matter who they were or what they’d done in the past. Life was a lot more complex than that. Beautifully messy and complex, in thanks.
They talked all night. The animals settled in to the warm grasses and trees around them, smiling. In the process, the people remembered themselves.
As the pink rays of morning drifted across the now-sleepy faces at the base of the wall, they had found a way forward.
“We are Namers,” an elder began. “We rename this land today. We more fully know her now. We are part of her now as she is part of us. And we recognize her as she truly is. We recognize ourselves more fully, too. This land is Belonging. We are Belongings.”
Another elder finished the thought, saying “As best we can, we will honor the spirit of welcome that lives within the land herself. We will honor the welcome that lives within the soil and the water, the air, and the trees and the animals around us. The welcome within ourselves. We will welcome others here. We will welcome The Invisible here, too. The Invisible isn’t outside us anymore and separate from us. The Invisible now lives within us. The Invisible is the unspoken, fearful, angry, hurt, or hidden part of us. The comfort within this home, our home, is only an illusion if The Invisible isn’t welcomed too. This community welcomes The Invisible within each one of us.”
The birds flapped their wings in relief. Animals inclined to howling, howled for joy. More than a few bugs danced. Earth, ocean, and wind were seen doing a collective high five, which the humans named a Wave and later mimicked during sporting events to remind them of their connection. And to remind them not to take themselves so seriously all the time.
And before the elder had even finished the thought, young people in all directions began tearing down the old walls and reimagining selves and boundaries. Because even the illusion of competing generations had fallen from their eyes once they’d remembered themselves together. They were all excited and itching to get some dirt under their fingernails and to begin anew.
 Hierarchy was a bizarre mass delusion in the land of Don’t Belong. At the time, they strangely competed for a non-existent physical space called “the top” and added to The List hoping to either move closer to “the top” and/or return to an imaginary time known only as “When We Were Great.” The best we can assume from their behavior is that they believed themselves to be individuals trapped in a 2D world by a separate, cruel, and conniving supreme being, who they aspired to mimic. There is limited evidence that they referred to this being as “Drumpf.” However, evidence is so very limited that this name is now considered myth. Beautiful, life-renewing myth, in thanks.
 people of color. As near as we can tell, there was an elusive, rarely seen in public (because duh) group of humans in Don’t Belong who felt themselves entirely invisible, and who, because they were transparent themselves, also felt the need to be anti-color. We can’t be certain, of course, how many there were, because no photographic evidence is possible when dealing with transparent beings. Back then, the rest of humanity began referring to themselves as people of color in response to the irrational fear, rage, and hostility of the transparent (also know as The Invisible) and as a sign of solidarity with each other in the face of outright discrimination, torture, and killing of people of color by the transparent for hundreds of years before The List was remembered into fiction and myth, in thanks.
 political parties. As near as we can tell, multiple groups called political parties existed for the sole purpose of making people distrust and/or hate their neighbors and become obsessively attached to the idea of a separate “them” out to destroy “us” within the imagined boundaries of a region or nation state. You’ll have to stretch your imagination here, as we have nothing remotely like this today to make comparisons with, in thanks. After The List became irrelevant, subsequent generations haven’t felt the need for political parties outside of historical fictional storytelling such as this.
 strangely, called “the poor” in Don’t Belong. We have no current equivalent for comparison, in thanks.
 economy. Another name for the global monetary system of the time that was poorly designed by a handful of the greedy to screw most people and the planet itself, in shock. Because so many people were deluded into believing that economy was separate from all of life and planet, the delusion ended up screwing everyone and almost everything eventually. We have no current equivalent for comparison, in thanks.
 the sick. Strangely, also called “the unwell” or “unhealthy” in Don’t Belong. Today, whenever we enter this phase, we recognize ourselves Seers, in thanks.
 In Don’t Belong, near the end, this group was called the Techies or the Technorati. None of them survived. However, some of the Techies who became Left Behinds did join hands with others/survive. You will recognize their ancestors among our beloved Tool Makers, Game Teachers, Star Travelers, and Artists today, in thanks, and recognize them in yourself when you join them.
My mom Linda was diagnosed with Alzheimer’s disease by a doctor in 2007. She was just 60 years old. Mom, dad Jim, sister Jen, and I all knew that something was going seriously wrong with Mom for several years before that diagnosis. Memory troubles showed up. Anxiety and depression showed up. All new to her. More significant personality changes, such as not wanting to talk on the phone with us anymore, not wanting to visit Jen and me anymore, not wanting to do many of her favorite things, and avoiding spending time with other family members, friends, and large groups of any kind. She began spinning in worry about simple things, such as spending hours worrying that she would forget to feed the dog at 4 p.m. In those early years, worry spinning began causing her to repeat herself: such as asking me 15 times, in 30 minutes, to make sure she didn’t forget to take a bottle of water into the theater with her.
The more we read about the disease, the more we suspected Mom had Alzheimer’s. Even so, it took us years to finally get her to the doctor for that official diagnosis. She was remarkably sly at avoiding that doctor visit, including cancelling appointments behind Dad’s back: another completely-not-like-her thing to do.
Back then, I was terrified and felt utterly alone. I think we all did. And why wouldn’t we? In my country almost nobody is in a rush to diagnosis this disease: not the people who have the disease, not the people who love them, and not even many of our doctors. As a country, this disease terrifies us.
Fast forward to the fall of 2015.
We are an entirely different being today: a collective being. Reflective and thoughtful. Calm within storms some days. Creator of storms other days. Able to drop worry, stress, fear, ego, and even people, if need be, in the blink of an eye. We’re becoming quite the bad ass together. More fluid and funny too. I’m a creator now: poet and artist in addition to writer and editor. My sister recently became a mom. We even speak a wordless new language now. Speak collectively out of habit. From my perspective today, the difficulties we experienced before are mostly symptoms of trying to tackle change and chaos, and trying to fix unfixable problems, as lone individuals. The result of standing in a river alone and trying to make what is right now back into what used to be. How impossible and exhausting that was.
Some people receive long, healthy individual lives to become something more than they once were. Others, like us, receive and accept diseases like this: diseases that require us to become something new, something different, and something more than individual selves each new day. This disease surfaces our collective selves. Our dragon selves. Our river selves.
So yes, as a dragon/river/human/community hybrid being, this disease doesn’t terrify me now. Not anymore. Even though I myself may end up with it as soon as 10 years from now. Thank you Alzheimer’s.
In August I was sitting outside a coffee shop, in the warm sun, having lunch with a friend who is also an Alzheimer’s care partner. In addition to talking about our marriages, food, the wild world of indie authoring and self-publishing, our mid-life aspirations, and our families, he brought up the subject of euthanasia. We talked about when and if our loved ones might make that choice and when and if we, ourselves, would ever make that choice. I’ve never had this conversation with anyone: not my husband, my parents, or my sister. It was a deep, lovely, moving, weird, and fascinating conversation, woven into and around talk of annoying husband quirks, great new food spots in the area, and the stubborn expansiveness of mid-life waistlines.
As I drove home, I realized that I’d just had yet another amazing, life-affirming conversation that I wouldn’t have been strong enough to have before Alzheimer’s disease entered my life. With a close friend I may not have had without this disease. And, even more amazing, that I’d just spontaneously taken a 4-hour lunch break out of the middle of a glorious, sunny work day. The old Lori would never have done that. Never. Thank you Alzheimer’s.
Our new book, The Grace of Dragons: Receiving the Gifts of Dementia Care Partnering, is another gift of our experience. A gift born of finally learning to slow way down and make time for what matters most. It is a collection of essays and poems that I wrote between 2012 and 2015 — the years my panic about Mom’s disease had subsided enough for me to notice beauty again. Create beauty, anywhere and from within anything. The essays and poems have been grouped in the book by one of the gifts they share in common, out of chronological order, so dates, times, and world events may seem a bit jumbled and confused. That’s ok. In this world, the gifts are the focus. Everything else is background noise.
Thank you Alzheimer’s.
I turn 45 Sunday. Last month my body began celebrating by throwing me hot flashes in lieu of a party. They’re like a personal, internal fireworks show. So I’ll be ringing in this birthday standing hot, alone, and naked outside on the deck, staring up at the stars at 3 a.m., trying to catch a breeze so I can go back to sleep. That may sound like a complaint but it’s not. This new body? The one who demands I strip to sleep and insists that I move open-eyed and naked like an animal in the darkness in search of breeze on my face? I like her. I like her a lot. She makes being a poet a literal breeze.
Here at 45, I’m done sugar coating things for myself and others.
Here at 45, I am enough. Just me. Just here. Sans lists. Without doing, fixing, stressing, worrying, or shopping to relax. Most days, I am enough now. Just me. The me that’s drinking green tea and taking Evening Primrose Oil supplements to cool down, turning loose pieces of paper into makeshift fans, and rediscovering star-gazing, sweatily, in the middle of the night. In fact, I’m more than enough. Here at 45, I’m totally bad ass.
In part, because I have to be. As youth fades, you become invisible to many of the parts of the world that you cultivated before. I’m making peace with that. Learning to cultivate new worlds, new friends, new ways of being. Learning to be as content moving alone in the darkness as I am moving visibly, collectively with friends in the daylight.
I used to avoid giving advice like the plague. I’m not a fan of receiving unsolicited advice myself. Bleh.
And, if you liked that me, this may not be the post for you…
In the fire of family pain and the death of friends this year, I became a dragon and I burned my to-do lists to ash. My daily to-do list now isn’t a list at all. It’s two interwoven mantras:
- I Love You
- Fuck This
I say I Love You to the world, myself, and others as often as I can now. And I say Fuck This (or Fuck That or Fuck It, I like to mix it up) almost as often now too.
Beyond these mantras and my writing (where I get to play with these mantras in infinite variety) everything else I do now is icing on the cake: great when it happens, not so terrible when it doesn’t.
At 45 I have failed. I have fallen apart. I have lost loved ones. I have broken down. I have looked like an idiot. I have not gotten nearly enough done. Regularly. I’ve learned that all these things are ok. I’m ok when they’re happening (even while sobbing or screaming to cope). I’m ok after they’ve happened. Often better than ok. It’s these things that have made me the bad ass that I am now: a person who fails, falls apart, receives loss, breaks down, looks like an idiot, doesn’t get nearly enough done, says Fuck It, I Love You, laughs with friends and family, and moves on.
- Say I Love You often
- Say Fuck This often
There’s my list for now. Possibly my last list. Who knows?
Writer Anne Lamott would call these words prayers. You’re welcome to do so, I Love You. And calling them prayers, for me, doesn’t feel genuine, so Fuck It, that’s not what I call them. For me they’re mantras: words I repeat throughout the day to remind me of my true self, my deep connection to everything, and my own freedom to choose disconnection in any moment, too. Some days I practice them. Some days they’re habit within me and keep me present despite myself. To pull/push them toward being habit every day, I’m learning to involve my whole body in them. I try to hear myself say the words, when possible. Try to use appropriate gestures, too. Or do my own special dances or songs, to accompany the words, when possible. I try to be present enough to witness the rippling impacts of my doing so.
Here’s one story from my life in which dragon-me burned away the To Dos until only I Love You and Fuck This remain…
Every day I log in to the human world as an indie author: a world that is chaotic, loud, demanding, contradictory, and often unkind. It tells me to get an agent. To do book proposals. To make business plans. To go to an endless stream of conferences and workshops and seminars and readings and networking events. To get degrees. To do proposals and pitches. To create an author platform. To live on social media, storytelling, and reader sites. To make friends with all local book sellers. To do in-bookstore readings. To visit book clubs. To teach. To grasp how to sell books and ebooks online on a dozen new and constantly shifting platforms. To read everything everybody else (who is really good) has ever written. To have a monthly newsletter. To work only with the best. To have perfect covers and keywords and descriptions and perfectly edited work and to pay for all this complementary expertise magically, somehow, out of pocket before I myself am making a living as an author. To get blurbs of praise to put on my book covers ahead of time. To never include color images in books. And good God never include color images in poetry books. To ask more for my books. To ask less for my books. To give books away for free. To never give away books for free. To have an in-depth Press page. To finish and publish covers months ahead of time. To create art beyond the written word, which is, we’re sorry, dead. To focus on just one genre. To build deep community within one genre. To ignore genre. To write for a cause. To never write for a cause. And most importantly, to be writing every day, all the time, and do nothing else.
Enough. Fuck This. You know, I think I truly, deeply learned this technique by watching my mom, who has Alzheimer’s disease, learn to do this first.
With Fuck This’ help, two years ago I moved to an island where I now spend hours in silence and hours in nature each day. I spend three days alone writing most weeks. I spend one night a week talking and eating and relaxing with close women friends. I spend two days working side by side with my partner Daniel and one or two days relaxing. Or some variation of the above. It was my own Fuck This that returned me to me. That returned me to I Love You. I’m finding that our Fuck This is wildly, uniquely our own and our I Love Yous look different too. Yet within us, they feel remarkably similar.
I Love You silence, trees, birds, whales, rocks, driftwood, wind, rain, sunshine, sand, warm days, sunsets, chilly nights, making things with my hands, talking with family, and meeting my people: the random people wandering in dog parks and on beaches and creative indie humans scattered around the world.
I Love You, reading books and writing books. I Love You, friends and family who help me create, share, gift, and sometimes sell books. I Love You self-publishing world that allows me to play with everything, including doing everything at a seasonal, tidal, poet’s pace and redefining what a book, a series, a genre, a writer, and an artist even is. I Love You, humans willing to be human together. People who look at what being “An Expert” or “An Artist” or “A Perfect Parent” or “A Teacher” or “A Woman” in the old world meant and say Fuck That.
I Love You, parents, who recently decided to move and join us here on the island, where we’ll all get better at saying Fuck This together.
When I wake up tonight at 3 a.m., in a puddle of sweat, neck on fire, I will begin by whispering Fuck This. Then I will rise, move out onto the deck into the night, look out at the ocean, up at the stars, and whisper I Love You.
We are one now—this ocean, these stars, and I—so one I Love You covers it. And when one I Love You covers it, it becomes easier to say Fuck It to everything else. Including to-do lists.