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/.
Since the inauguration two weeks ago, I’ve been having nightmares. I was too freaked out to share them, until I read Sherman Alexie’s new poem Autopsy about his dream that his passport was bleeding. Thank you, master poet. For sharing your pain. I woke up the other morning and jotted this down quickly, before the nightmare could fade…
First they cheered their new savior
Their hearts swelled
imagining that beautiful new world
no enemies near
wealth without fear
They saluted or swooned when he walked
in the room…
Well, except the women, who
shrank almost imperceptibly
inward and back, smiles intact
eyes averted and blank
hands gently cocked, ready to defend
when he approached
to hug them.
Then they watched their new president
his pals with dark smiling eyes
suits and ties
destroy their institutions
generations of work and promise
became ash at his feet
and still they cheered
for soon, so soon now, they’d have nothing to fear
Then they watched as he cut
with our oldest allies
provoke others into terror and war
They watched neighbors beaten
in the streets
When the homes of natives went up in flames
they grew silent, confused
they turned back to FoxNews
where they could read about
The Best Cabinet Since Lincoln
How to Use God to Defend Against Liberal Jackals
(go check that out if you think I made it up)
When they looked outside each new day
they wondered why
millions around the world
marched in the streets
against the savior, who well, sure
may look like a dictator
but they knew he wasn’t
because he was their savior
So they did what they’d been taught
they kept preaching kindness
while they watched babies
terrorized at their borders
and in their heartland
They preached compassion and forgiveness
please, don’t be crude
don’t say pussy
don’t bother me with your petty politics on Facebook
all the while
white guys with dark eyes
poured gasoline on tepees
on women, on nature, on life herself
and dropped the match…
When the world went up in flames
the day World War III began
they didn’t even notice
thought they’d be saved by their new president’s best buddy
There they stood, plain to see
two great men: one bad, one good
and both, sadly,
long since dead.
And they didn’t even notice.
Until their water became too expensive to drink.
Until mom got cancer
nobody could afford to treat.
With no EPA, scientists,
journalists, backbones, or basic human decency left
poison peddlers flourished
bees across the homeland died
more than half the crops
They found themselves
looking for rest and work
anywhere they could get it
A third of their children
died that first bitter winter
another third of them
drowned crossing rivers
the gentle earth gave them stones
to mark their passing
Most of their grandparents died
in one spot
because they were too weak
to climb their own savior’s wall
one mass grave for them all
So that’s how we showed up here broken
bleeding and starving
with literally no place left to go
at the world’s front door
Afraid, no more. Of
I got this idea from my friend Bayo who teaches me daily that we are so much more than we imagined yesterday. Thank you, Bayo. This is his list.
These are my current irreverent and unapologetically odd resolutions. In 2017, I am somewhat inclined to:
- Accept life advice only from birds, animals, and the strangest of the strange humans I know or meet.
- More thoroughly enjoy mom’s Alzheimer’s disease.
- Write odes (aka, poems/songs of praise) to everyday people and items on good days and to people/things I am angered by on bad days.
- Watch for dragons in the woods behind our new house. Talk to them only when we’re both ready and then mostly about magic.
- March peacefully in protest to 1) show solidarity with those most hurt by standard prejudices and practices, 2) make protests safer by my presence, 3) make new friends, 4) get more exercise, and 5) fall back in love with the world.
- Dance, sing, draw, swim, daydream, or write poetry every day. See that these take priority on days when I or nearby earthlings are especially frustrated, sad, or angry.
- Hold funerals or say prayers for lost socks, buttons, and other small things that disappear unexpectedly.
- Follow the examples of Americans with disabilities and mental illnesses, Native Americans, Asian Americans, Black Americans, Hispanic Americans, and LGBTQ+ Americans, as well as braver-than-me artists/poets/musicians, in their demonstration of what it means to be fully present and listen really well to those present. Here in my country this will be a year of remembering what it is to be a true friend, fully human, a beautiful earthling, and a strong community. A year of reminding ourselves and our institutions of our amazingly weird and wonderful nature.
- Get even more lost. Open even more space and time for purposelessness, pondering, poetry, parks, play, and pancakes.
- Take spontaneous road trips with my sweetie, my dog, and possibly, my three cats, if nobody volunteers to come watch them for us. Hint, hint.
- Enjoy dirt under my feet and fingernails. Enjoy dust, dust bunnies, stains, hairballs, and all their kin. Not just alone but with friends.
- Learn from those who unexpectedly thrive within resistance. Learn from strangely endearing scientists, off-the-charts kind religious leaders, and awkward-and-beautiful-and-trying grassroots organizers around the world.
- Financially support local poets and artists, the Standing Rock Medic and Healers Council, the ACLU, the Southern Poverty Law Center, Planned Parenthood, and my two favorite media outlets.
- Recognize that both our home and our town wants to be a refuge for people more threatened by hatred and discriminatory policies than we are. Allow our home and our town to live to their full potential.
- Write a book that surprises me.
- Learn what it takes to remove a hate-filled demagogue from government office. Take an active part in the process of learning.
- Plant trees and shrubs selected by birds, bunnies, bugs, deer, and at least one dragon for their suitability to the place and time.
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.
Author Anaïs Nin said: “We don’t see things as they are, we see them as we are.” and “Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.”
Today I want to say this. This woman totally rocked. With just these two sentences—one about the power of the individual and one about the power of community—she changed my world. She changed me by saying something that I didn’t know—or that I’d lost along the way—and by inviting me to remember how amazing we humans can be.
As writers, we worry about all sorts of strange things. We worry about not having enough time to write and that we’re spending far too much time on our writing. We worry about internal and external critics and national and family politics. We worry about our own over-education and also our own remarkable cluelessness in any given moment. We worry about the state of our planet, country, neighborhood, and desk. We worry about how prolific we are on any given day and month and year. Some days I think this makes us unique. Most days I suspect this just makes us human.
Today I want to say this.
It’s not the worry that lasts. (And I expect Anaïs Nin—who once wrote erotica for $1/page so she could afford to eat—would agree with me.)
What lasts is this.
We change the world.
We change the world with just two sentences. We change things as both a lens on the world and as friends and neighbors within it. I think that totally rocks.
We are more powerful than we can remember alone. How cool is that?
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.