Not Knowing

After Linda Coleman parted ways with her leftist underground guerrilla cell in the 1970s (experiences chronicled in her memoir, Radical Descent), she turned to Zen meditation. She studied under the late Roshi Peter Matthiessen in Sagaponack, applying the practice to her work as a hospice and palliative-care nurse. In 2003 Coleman was ordained a monk, and in 2020 a Zen priest. Then, in 2021, came Alzheimer's.

4/22/2021 — Alzheimer's assessment

"What year is it?" the doctor asks from behind the plexiglass divider.

"2020 — I mean 2021. I'm not sure."

"Can you repeat the sentence I told you to remember a few minutes ago?"

"No."

"Okay. . . . Remember these four words: cat, truck, garden, drawer. I'll ask you to repeat them in a few minutes."

We chat for a bit. He's a kind man.

"Can you tell me the four words?"

"I don't remember." My heart instantly pounds in shame.

"You don't remember any of them?" he asks.

"No … none of them. All gone."

He senses my despair and pauses for a few moments, before giving me a long list of words to read aloud. The sounds of them are beautiful — random and precious, a song of sorts. Their music brings tears to my eyes. Maybe it doesn't much matter if I remember them, the ones I wish I could find to quell this shame. Their potency lies in syllable and sound, their meanings secondary to this particular song. But I feel the wave of grief grow as I look through the divider, and recite as I'm told.

On the plexiglass I see reflections of waving branches and budding maple leaves in the parking lot, and the blueness of endless sky above and beyond. I think of a group I sat with last night where a woman shared: "I lost my job and three weeks later my husband of 30 years died suddenly and three weeks later I had to go to the hospital for heart surgery and during that stay they discovered I have colon cancer."

4/30/2021

Dear Mom, long gone, I picked up
your paintbrush today, the one with the extended thin stem to hold, and the flattened soft, squared bristles — hay-colored.

It happened to be in my kitchen sink, borrowed by another user, someone you've never met and might have loved.You loved men and loved gardening, painting, and antiques, and scavenging flowers of all kinds. Come to think of it . . . you and Geoff both have/had back and neck injuries that plagued you endlessly and so he lies down daily on your old heating pad and asks me to rub his neck, just the way you would ask me, and he winces and groans early in the day and then proceeds to extraordinary physical feats, just as you would also.

Now I study grief for a living, to serve the living who are dying, who have the very same tears that startled me this morning. I hope and pray I can visit you again in some other time and space — and I would hope that we wouldn't break each other's hearts in our ignorance next time around.

07/03/2021 — South Tongue River, Wyo.

Sitting by this river, with its rounded, warm, lichened boulders. The stream flows without resistance while I sit with thoughts that flow sluggish in a thickened mind soup. Lately the thoughts flow around bends in rocky terrain where fear of "other" lurks — fear of foolery, fear of shame await the next human encounter.

  Let me stay with you here dear river, dear grass and flowers and rocks . . . to be a boulder like you — solid, smooth, no sharp edges . . . to become the silence of wilderness, become wind in pines, a sudden bird call, tall grass whispering in the wind . . . to remember the deep ancient unity connecting all life.

12/12/2021

My son says, "What did you do today?" in his kind, inquisitive sincerity that I love and treasure. "Ummmm . . . I don't know . . . I don't remember . . ." and then fill in the anxious void with a blurred sum of chores and tasks I love — read, write, walk, clean, cook — all in a hypothetical good day's work but the details are gone in a blur before it's sunset.

What is not erased is a treasure of earlier memory . . . polishing silver with my mother many years ago . . . watching the gray silhouettes of clouds mimic the treeline outside our bedroom . . . the tick, tick, tick of rising heat in the radiator; nothing special, everything precious.

Days go by now with uncertainties, ambivalence. . . . In this new stage without regular employment, after a long, rich career of intimate connections, there are many moments of anxious wandering for new "purpose." My teacher today: the wee small wren who sits on her eggs silently by the lawn broom day and night — not waiting nor wanting, just doing not knowing.

4/26/23

Many moons later, life shuffles me further along its transit out of this body into that unknowable, and so there is a new kind of preparation and grief and love for all that springs forth with wild jazzy displays of new growth.

I want to say that this bodybrain is stable but I don't, in fact, often recognize this mind of mine. It is fearfully new in sudden swipes — small missteps of speech and wandering uncertainties. I witness Geoff managing the impending tidal wave with endless digging and cutting and planting, sculpting larger and larger landscapes, holding at bay whatever else he might be feeling with unceasing CNN voices narrating the minutiae of a troubled world.

8/23

What month is it? Crickets in the dark clue me in . . . August. How deep does the grief go? Will it tear my heart into sharp, small shredded moments or weave a chain of ever greater sorrows that suck me down and under into a suffocating dark? NOT! Nothing lasts, Shoju! That's the relief side of sorrow. That and maybe love and wonder . . . maybe love and wonder will stick around. . . I can wish and dream it will be so.

1/15/2024

Last night being with my son in his room, playing the Neil Young song "I Am a Child" repeated over and over in this grief/love/joy. Now a new memory of love: you lying on your bed, your face sad and softened, and me holding your great warm hand twice the size of mine — strong and firm — a man now
. . . a man who knows grief and just how hard this life can be when your heart is open and you have to find your way and leave behind some of your dreams.

I am rich in love and sometimes, of late, drowning in grief as I feel the weight of how heartbreaking it may be for you, my sons, to witness me disappear into dementia . . . a home you know will never be the same. But these are only stories and "maybes" and life takes care of us. We can only take care of "this moment". . . moment by moment . . . do no harm . . . do good . . . do good for others.  We have love that cannot be bought or sold or
broken — ever . . . never never. Mother love is forever.

2/2/24

Irritable — fearfully irritable. A stranger of ill will has moved in cranky and dour — is it me or you? Or neither? The stories I tell myself aren't the truth anymore. . . .

Paradise is still here and now, Shoju. You know it as you treasure him&this&them, where you sit in this early morning silence with all the props you love — fire, coffee, a book, and a blanket. They say (with Alz) you will become dark and angry and suspect of those you love. They say you will become unmanageable, will need restraint and lockdown — no driving... wandering alone . . . no cooking unattended . . . no solitude without permission. They say you will become another altogether.

Be kind to her, Shoju.

2/14/24

Geoff has boundaries — plain and simple knots. Neat and practiced and perfected, he tells me where to go and how to get there and what I'm going there for. All too often I ask, "Why? Where? When?" and "Please tell me again." Some days my requests spill over into burdensome, even to me. Our props to patience are nicotine in any form when we haven't "quit," being outdoors, reading, or doing errands with a stop at the ocean where sunblaze on the surface makes blinding ripples in slow motion — a slow wave of rock and roll — of  "easy does it," that endless life raft in the unknown.  

06/15/24

Forced through a certain deep fatigue that wants me to resist writing today but there is still determination alive and knocking to show up to my intention to journal this Alzheimer's journey.

Lately, my days have been bright and energetic and my brain fog is minimal, which is hard to explain. My memory seems better and my mood is high. My joy is great. My grief is random compared to earlier months. I feel this may be in good part to my Zen practice, which encourages an "open heart and empty mind" and awareness that "you only have to take care of this moment."

Today there is a blanket of gratitude. Gratitude for all the wisdom that has been passed along to me from elders and teachers and ancients. Gratitude for all that I have and those who I travel with . . . family and friends, neighbors and sangha . . . resting in ease with my beloved friend and partner. But tomorrow — like it or not — I will get his goat,  ask the same question three times in a five-minute box. My apologies — I still have enough memory to remember that I may have already asked you that . . . or do I?

Patience is one of the Zen "paramitas" for good reason. There is no true "motherlove"  without patience. There is no art, painting, poetry, prose, or any Olympic feat or any kind of creative accomplishment without patience . . . there is no unconditional love without patience.

Some gifts from Alz: Because I have short-term memory loss, I enjoy quiet solitude more than ever; cherish those who love me more than ever; cherish trees — the wild wonky faces I see in their trunks and flailing dancing arms; cherish birds of all kinds; cherish digging dirt, planting seeds, cooking, eating, hot drinks, cold drinks. I forget the "bad stuff" soon after the event — the bad encounter, the foolish embarrassing mistakes, the arguments . . . and even the wave or two of deep grief I likely felt yesterday, at one time or another, for losing a name, a memory, a face . . . or the angst that arises when someone says the dreaded phrase: "Don't you remember when. . . ?"

9/9/24

Heartfulness and heartache are hard to distinguish . . . two dear ones head to head at the table figuring something out . . . "I've got this, Mom, we don't need your help." Nor could I give it as I spin through photos to find the image they're looking for. . . . But eventually it comes up — a small victory for me.

They talk and figure things out and I'm so very grateful that they have each other to cross this river together . . . the river that grows deeper some days — hazardous — murky water rising where it once was so crystal clear, where I could see every stone sparkle.

Now they have to hold my hand and I see/feel/know that they will do this with tender kindness as best they can, but rivers do flood and this journey will likely wash us downstream into some unknown waters. I wail and cry sometimes behind closed doors (as they may also from time to time), but after the tears, the storm passes, and I'm back "in love" with this "life as it is."

9/10/24

I lose my way when I'm concerned that I am burdening others . . . when I forget that there are no "others". . . that we are all connected in the flow of this "life as it is." Nowhere to make fault or trouble for others as long as I remember to turn the stove off.

10/23/24

I love my early morning retreat into sweet solo silence where I can let my muddied brain slip and slide into the day, at ease with "not-knowing," allowing the sludge to take its place and wait for the overcast to clear. I need to settle with acceptance that I best not tackle the firestorm of politics and opinions in these days of cataclysmic events that Trump has delivered of late, the plethora that is impossible for me to keep up with other than absorbing grief and fear.

Geoff and Liz and Mich ping-pong back-and-forth with dates and facts and ideas that blur in moments and drag me down into the brain swamp . . . slowly underwater, into anxious lonely weeds of attachment to "knowing" enough to join in. They are loving and kind and I am grateful and happy for our time together, the four of us old friends . . . a bounty rich enough to dispel my darker self-centered stories of separation.

I am not separate from "all that is." Say "no!" to Mara, the inner czar and critic! Three bows: Buddha, Dharma, Sangha.

12/03/24

Where are you? Which house? Which home? Which room? Which house? Am I far from home? Which home? Which bedroom? Comfort is clinging to Geoff — the warm solidity of his body usually familiar but this morning he is "stranger" as well. How to translate this slow blur of love of a particular that suddenly dissolves or shifts: Who are you? Who are they? Where am I this morning? Which bedroom is mine?

I used to be somewhere else — yesterday, waking to ocean sounds of waves slowly riding my breath in and out and the calls of black grackles. This morning, a frozen birdbath and 13 turkeys await outside my window. I weave my way out of fear and grief and back to great joy. This is life with Alzheimer's — my new companion. My new teacher.

12/28/24

In the pain body; this too is insubstantial. In wave form I hate myself — those thoughts wash over me — wash over and around me into insubstantial. Waves that come up through my stomach into my chest, my throat . . . this throat tightens . . . wants to know . . . wants "knowing". . . wants to grab onto substance to slow the free fall into the void of dementia.

Die before you die, we say in Zen practice. That's it . . . that's freedom . . . that's the Way . . . die being not what you know. The pain of clinging to a moment of this son's presence, his ever heartbreaking movement, the face of him . . . the substance that is of me but not me . . . what is a child? And the child is no longer home but wants home . . . wants you to be home but you are different now — "diagnosed" with a terminal illness . . . but I am still me . . . more free than ever before, grateful for all the abundance of beauty and love and friendship that surrounds me and all the agency it has delivered to do what I want to do.

1/27/25

Who am I? I don't know. Meltdown after a long stretch of equanimity . . . of You got this, Shoju (a bit smug) . . . seduced by my abilities to keep "life as it is" in check with habits and harmony.

Geoff was only trying to help, to take care of us both by rearranging my files and systems — systems that have worked for decades now melting into chaos and mistakes. All the sorting and tossing of useless, expired pieces of
my past — old drafts of writing and infinite Zen articles and magazines that
I will never miss — will lighten the load for anyone who has to shuffle through it someday.

But I couldn't see that . . . could only feel the sting of loss of agency to control it all and then alarm with the sudden wave of murderous self-harming — anything to get rid of the taste of what's to come, the dark story of slipping into deeper dementia. >

Such a sudden contrast to my easy visit with neighbors I love where my fast talking and self-satisfied descriptions of how Zen pairs well with Alzheimer's "not knowing" and "being one with life as it is," how well it guides me away from the dark woods of the "self-centered dream."

2/7/25

Why do you miss the names of things? Do they give a greater intimacy? Not necessarily so . . . look again . . . look again . . . deeper and deeper you see the living heart.

Thich Nhat Hanh famously held up a piece of paper and asked a monk, "What do you see?" The monk answered, "A piece of paper." Hanh responded, "I see a cloud. I see rain, tree leaves, branches. I see loggers, trucks, and a factory."

5/10/25

Geoff stalks moles while I silently pray they will dive deeper into their dark holes and hide-a-ways . . . their tunnels so silent and close . . . I'd like to visit them there.

6/16/25

Grasping for words — particular sounds with souls that calm a certain greed to be heard, to gift a certain flower its due of recognition. A name marks presence.

6/22/25

I have conflicts within my intention to abandon preferences and allow whatever happens to be as it is, moment by moment. Recognizing the increasing load of difficulties I have completing tasks that were previously simple — second nature — I reach for routines that soothe: cleaning, laundry, cooking with full attention and intention not to leave the burner on or the oven baking away at nothing.

7/8/25

Wandering about in abundance on a hot day with no direction while brain fog conflicts with my preferences. Freedom is having no preference. Freedom is letting go of the self-centered dream. Freedom is being one with this moment and the next and . . . one by one, breath by breath — no self, no other . . . open heart offerings to people, plants, and all living things and to yourself. Brain fog? Befriend it. Lie down and rest and see what comes next.

7/23/25

Whatever happens, however dark it may be or become, my preferences only burden me. But face it, Shoju, you have preferences . . . you have an agenda. You're after words — sounds and shapes of words that will move your heart and maybe another's heart someday.

7/27/25

As of late in conversations I'm often trying to find my way through to the end of the sentence I just started and when it doesn't reappear I'm speechless . . . ready to disappear . . . to be alone. Or to be working alongside Geoff, happily satisfied with the gift of sight and sound, of trees of all kinds that reach out and speak to me . . . their leaves, branches, trunks with faces that emerge from a multitude of mesmerizing patterns, and vines . . . great vines as thick as my arm that braid their way up into treetops.

The vines will ultimately kill the trees just as the tau tangles in my brain will kill me unless I'm to die by other means before that time comes.

The wisdoms of the Great Heart Sutra guide me well: "No hindrance of mind. No hindrance therefore no fear, bodhisattva . . . far beyond all such delusion, Nirvana is already here."

8/10/25

I could spend all morning lost on Facebook and Instagram trying to remember who's who in this long lifetime of connections . . . interesting but muddling . . . happy-sad to see those many humans I have met, befriended, and connected with in some long forgotten circumstance whose names I could nevermore place without reminders from Geoff, who forgets nothing, and who so often patiently places me back in time . . . a sweet gift that settles my grasping, anxious mind. He has lovingly learned to avoid the "don't you remember . . . " intro.

Days past are held dangling on some brain cell — some broken and gone forever, and many just in a nursery awaiting Geoff's memory bank to remind me so they can resurface and live again. And so he does and I love him so.

11/16/25 — Big Horn Mountains, Wyo.

You die so quickly, wilting within minutes of being plucked from the field. That random choice among millions. Your short splendid life.

I count the infinite variations of wildflowers, thinking I will describe how each form represents something of my own form and experience. . . . That need to feed them into eternity with words, to offer my service that way.

And then knowing it's not myself at all but how well I'm able to move aside until words flow like water from the underground glacial melt, the preverbal spring moving, melting alongside the mountain "forget-me-nots."

So easy to sit by the stream, drifting into sleep by the never-ending song with no words.