We’ve had one hell of a fall and winter here.
We helped Mom move into a memory care home where she’ll have the round-the-clock, large community support she now needs. We’ve been moving with our own grief and helping each other, and Mom and Dad, with theirs and with creating different, slightly more independent from each other lives than Mom and Dad have lived for the past 50 years.
And then we lost Daniel’s younger brother Jim unexpectedly, and the whole world shattered around us. The day we learned of his death, I remembered something that I once learned as a kid: when someone we love dearly–someone who we think we can’t possibly live without–dies, the sky herself shatters to make space for all our grief. So we’ve also been sitting with our own grief at the loss of Jim and helping each other, and Daniel and Jim’s parents too, with all of us wandering about like alien toddlers with uncertain feet on this newly shattered world and creating different, more conscious-of-our-own-fragility-and-connectedness lives for ourselves again. And then our oldest cat got sick and we were so sad and exhausted that for a moment it felt like this one little thing might almost break us. And then I got sick, and landed in the hospital, actually physically broken for a bit, and we had to change ourselves and our lives and our habits yet again. And then, my writing, creating, and playfulness guru and friend, Bernie, passed away after waging the world’s most beautiful, generous, and playful final battle with cancer.
So, for many months this fall and winter, we went dark. By that I mean that we moved within, like an apple tree does during the years in the larger cycle that she finds herself covered with tent caterpillars. In what felt like an instant when we learned that Jim had passed away, we just didn’t give a rat’s ass about most of our former responsibilities. Or our projects. Or our online presence. Or our former thoughts and worries. And for a long while, even our former selves. Instead, we were all in on the present moment together and with those closest to us. For 5 months.
And it was horrible, what we were going through. Truly horrible. It totally fucking sucked. And yet, somehow, suddenly, in the moments between our sad moments, we also feel glorious. Truly glorious. Because when you’re that low and broken, you can see so much of what you’ve been missing from other perspectives. For example, kindness can come to us from literally anywhere–if we can let it in. I’d forgotten that. We can imagine any person, any action, any words, any thing–into a kindness, given our community, our playful elders, and time. So we don’t have to worry about our monsters anymore. Not this year anyway. This year, we’re noticing and creating and finding kindness everywhere we go.
We’re being reborn right now, together, and we can see it. We can name it and know it and own it as who we are. We are becoming more of our true selves right now. Does that sound odd? I don’t quite have the words for it. We’re more us now. After all the unexpected pain and even the expected pain–right here–both within and after all the darkness, we are SO bad ass all of a sudden. Because we are receiving one the most amazing gifts that loss and grief offer from our perspective: rebirth. We’re offered a chance to start over as beings who literally–in the blink of an eye–dropped almost everything that we used to be. That makes us (and by us, I mean residents of earth) more remarkable than our old stories allowed us to believe. And as we remake ourselves now, together we’re hanging on to what matters most and we’re letting all the old bullshit go. We’re just letting it all go.
We are remarkably lucky. We now find ourselves surrounded by a vast, fierce, and kind community that stretches around the world and includes ancestors and rivers and trees and sky and stars. We’re grateful to everything at the moment. Everything. We’re grateful to friends who forgive us for disappearing for long stretches of time. To those who cover classes that we can’t teach because we can’t stop sobbing. To those who bring us food and hug us and clean up when we just can’t–regardless of our politics or theirs. To those who share their ideas and stories and who send us love and prayers from afar. And to those remarkable beings–like sisters–who somehow manage to make us laugh out loud at literally the worst moments of our lives. What unbelievable and remarkable magic is that?! It boggles the mind. And now we’re even grateful to those filled with so much of their own pain that they cannot bear ours at the moment. People who can’t, at the moment, stand our presence, our voices, and our lived experience. Even they hold a fierce kind of kindness and lessons for us to learn now that we have the space within our selves to see them. And now we know that residents of earth, in a single instant, can drop almost everything they once were in a moment of pure love or extreme tragedy. We are magic.
So here we are. We still look like us and live these lives. I still have 20 pounds to lose and Daniel is still trying to get to the gym more. But those who know us best, and anyone willing to listen, also know that we are standing here with different, more prone-to-tears eyes. Different, more prone-to-empathy hearts. Different, more prone-to-listen-a-long-time ears. We listen, now, until we feel empathy, and then we speak. So we’re a little less quick to judge. More prone to forgive. More prone to be deeply curious and ask questions from simple curiosity. More prone to speak up, too, and say what we believe needs to be said. We’re far better at saying “Fuck it. You be you, think what you think, say what you say, and we’ll just love you anyway.” Because together we can love almost anyone now. We don’t need you to be loveable to love you anymore. We can love–period–so we love. That’s magic. Or grace. Call it what you will. Experiencing it feels like the important part.
What a glorious place this is. The universe. The planet. Her inhabitants. The beauty. The laughter. The unfairness. The struggle. The pain. The loss and grief. All of it. Wow.
So, FYI, this is how I get to the point as a person, an essayist, an author, and a poet. Find the wow, visibly, together, then look for the point. And the point here, I think, is to find a global community of people who deeply want to experience and talk about befriending wonder and unleashing playfulness. We’re almost to the point, can you feel it yet?
The one other thing I did last year is this: I wrote a new book. I wrote a book that I love and that many others now love too. It’s about the unshaken wonder that lives at our core and how we get back to it across our lives, at any age. And about what it takes to remember and become our playful elder selves, at any age: a playful elder being the people (and trees and dogs and places and other things) in whose presence unshaken wonder often arrives and playfulness is usually unleashed in all directions around them.
As great as the book feels to us here, the reality is that I suck at book promotion. I totally suck at it. That’s not self-denigration. I don’t mind sucking at it. That’s just fact. Brief sound bites and short book blurbs and little trailers and tweeting tiny things and creating brief “hooks” to entice people’s interest and juggling 12,000 book promoters and groups? And doing all of that in the “I just want to relax” time after spending 18 months creating a book? Bleh.
Ah! But this new me is different. New me decided to get help this time: a ton of help. My book promotions guru/helpmate/friend, Sarah, for one. She’s the one who told me to share my book trailer with you via a blog post, so that’s what I’m doing at the moment, not that you can really tell yet. I do 96% of everything she suggests I do, because she’s really good at this. And she has me doing what feels like about 8,000 other things too, almost all of which are new to me and hard and scary, and tight deadline driven, and as the tasks piled up in March, I started to get stressed out. I actually got sick again. So much for letting go of old bullshit. And. Then I did something that I’ve never thought to do about stress before. I laughed. I got up from the computer, I walked outside to hang out with some of my closest tree friends, I put my feet up, and I laughed out loud. I laughed at the utter silliness of me. What was I thinking?! This? Just this? All this book promotion stuff is not a problem. This is just learning. All that I’m doing right now is learning. I can do that. I’m actually really good at that now.
My laughter feeds the trees here. And my family. And my friends. And my community. Have you noticed who and what your laughter feeds? Probably you have, I’m a slow learner. This was news to me.
Now that I’m laughing again, it’s so NOT stressful around here right now that we just created a second mini-book, as a free gift, for those who buy the new book. Sarah’s suggestion + my content + Daniel’s formatting and tech skills + an ability to feel the love of so many = a gorgeous new 32-page mini book conceived, created, and finished in under a week. Holy shit wow. So I’m here to tell you that this month two new books, not one, are about to be born. I’d like to introduce you to the first one now. This 60-second trailer captures the feeling of our new book, Unshaken Wonder: Becoming Playful Elders Together. She’ll show up in eBook form April 17 and in paperback form by May 1st.
When you go get her in digital eBook form or print form this spring, then you’ll receive a link to sign up to our Silly Dog Studios newsletter and to receive a gorgeous (thank you Daniel), useful (thank you Researcher me), fun (thank you poet me) 32-page mini-book for free (thank you Sarah). The link to it lives on the Dedication page of Unshaken Wonder. The mini-book, called On Befriending Wonder and Unleashing Playfulness: Twelve Choices to Consider, offers, not surprisingly, twelve choices that we’ve learned to make by spending almost all of our time with playful elders (not taking ourselves too seriously), and within community (keeping our own fears in proper perspective), and by noticing, listening to, and participating in self-organizing groups we’re drawn to (groups whose members are surprised and delighted by what they become and do together). The eBook is already available for presale–11 days early! (Thank you BookBaby.)
Thank you for showing up, listening, and caring about all of that. I’m now off to go learn how to say all of that and more in a frickin’ 100-character tweet. 😉
In late February 2017 before the gray skies here on Whidbey became blue, I looked out the window and saw a poem, about a dead tree, in the middle of the just-barely-beginning-to-bud forest. I called the poem Life 101. I eventually saw it for what it was: a poem for my friend Bernie DeKoven.
Six weeks later, in still-gray early April, my long-time friend and mentor Bernie DeKoven—the very friend who I was dedicating my new and most playful book to—shared with us that he has been diagnosed with the kind of cancer that ends your body’s time on earth, no matter how ridiculously cool and very much needed by everyone you are. He has a year to live, at most, the doctors’ say. The moment I heard, I got so angry. I cursed the universe, and life herself, as I wept and wondered how I would manage to honor his request. This request:
What I need is for you to continue your play/work however you can. Play games. Play the kind of games I like to teach – you know, those “funny games” – harmlessly intimate, vaguely physical games of the semi-planned, spontaneous, just-for-fun ilk, basically without equipment, or goal, or score or reason, even.
Teach those games to everyone. Play them outside, these games. In public. With friends. And strangers. As many as want to play with you.
Make up your own games. Make them up together with the people who play them. Play. Teach. Invent. Play some more.
Also especially – look into this playfulness thing too. Deeply. Because we’re not talking just games here. We’re talking about how you can let yourself be as playful as you’ve always been, how you can be playful almost anywhere with almost anyone, how you can invite people to be playful with you, in school and office and in the checkout line: all kinds of people with all kinds of abilities from all kinds of backgrounds.
Maybe download a free copy of A Playful Path, even.
But I wasn’t quite done being angry.
Jesus, Bernie, I thought. Really?
Be playful? Right here in this moment? In THIS year?! In this terrible, horrible, pain-in-the-ass, this-totally-sucks, you-give-us-f#$&ing-Trump-but-take-our-beloved-Bernie year? The year my mom’s Alzheimer’s disease will likely land my father in the hospital and her in a memory care facility? It’s like 2017 was specifically designed to make me give up, defeated, shouting “Screw you, universe!” from under the bed.
But then, there you are my dear, wonderful, stupid-head Bernie.
There you are: already being playful.
Still doing your daily play/work in the world, plus bringing in more playful swings to your local park. Still being my playful muse/mentor/friend. And doing the same for so many, many others, too. You’re just, just… what?
You’re just so damn beautiful.
The love and kindness that you share with Rocky, your kids and grandkids, neighbors, old friends, and new friends? The play/work you share with us? The videos. The talks. The games. The websites. The blog posts. All of it.
It’s just so beautiful.
God dammit, Bernie. How am I supposed to be the playful being that I want to be without you here?
Without you around, who am I going to bounce ideas across our country to as if the country is just a giant ping-pong table, with a Rocky Mountains net, and our ideas just giant bouncing balls to play with?
Or wait, no. Rubber chickens.
Ooo, yeah! Giant Free-Range Rubber Chicken Idea Ping Pong.
How fun would that be? No. That’s not quite right, is it?
How fun it’s been! How lucky we have been. You and I have been playing Giant Free-Range Rubber Chicken Idea Ping Pong for more than six years now. I remember the first time that you commented on my blog. Remember blushing to my roots when I realized who you were. It was like Elvis giving advice to his most star-struck, teenage fan (well, an older Elvis and a very old teenage fan). 😉
And I remember the day you told us that you’d turned down a professorship so that you could just keep on doing what you do–the writing and the playing and the speaking and the wandering. I did that once too, about 8 years back. I didn’t fully know why then, but now, my friend, I do. It was saying no to them that allowed me to play this game with you. What a gift. What a solid choice based on nothing much more than intuition. Hmmm…
Bernie, wherever you go and whenever you go, I’ll still come meet you in the warm evening sun. Right here, within the field of imagination, on our country-sized ping-pong table with our playful ideas flying in directions both silly and profound, and sometimes going in wholly unexpected directions like so many rubber chicken balls. Just ask Mahatma Gandhi. I’ve been playing ping pong with him since I was 11 years old. He’s been dead the whole time, and he still kicks my ass regularly.
I suspect that you and I will be playing Giant Free-Range Rubber Chicken Idea Ping Pong as long as it’s fun for us. Which—given our skill level, general love of play, and abiding love and faith in each other—will be long after both of our bodies are gone.
We may have to give up the body when the body says it’s done, but we don’t have to give up playing, player.
Not now. Not ever.
Because you and I—playing together—are what the universe herself wants to be.
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/.
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.
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.