One Tribe

My work team and I provide services to patients and the public in our aquatic rehab facility in Central Maine, which means it’s impossible for me to live in a bubble. Thank goodness.

I’ve been complimented, praised, flirted with, yelled at, accused, and blamed. I’ve listened to a wide range of political and religious viewpoints with a polite face on. I’ve dealt with tears and tantrums (not talking only about the kids here). I’ve heard about medical and family history in excruciating detail, often repeatedly. I’ve watched patrons and patients get better, and I’ve watched them get worse. I’ve watched them lose weight and gain weight. I’ve met grandchildren and siblings when they visit Maine. I interact with people who are confused, struggle with memory loss, or are affected by dementia, either their own or a loved one’s.

I’ve seen a variety of sexual identities, gender presentations, and body dysmorphia (and no, I’m not conflating body dysmorphia with homosexuality.) My team has served patrons who are listed on our state sex offender registry.

We serve deaf patrons, autistic patrons, anxious patrons, mentally ill patrons, special needs patrons of all kinds and ages. We serve an occasional minor who gets dumped in our emergency room and lives there for a time while the authorities try to find placement.

Image by Bob Dmyt from Pixabay

People. All kinds of people. All colors, shapes, ages, and sizes. All different.

People just like me.

I notice a thing in the present cultural discourse. People who browbeat others about inclusion and tolerance invariably are the least inclusive and tolerant.

Talk (and typing) is cheaper every day.

As a writer and lover of words, I notice a deluge of new terminology and labels, many of which strike me as ridiculous, redundant, and/or meaningless. Their sole purpose appears to be to increase the ways we can despise and exclude one another. At the same time, there’s an ominous drumbeat in the background about ideas and words some person might find offensive and therefore must be forcibly eradicated. A few months ago one of my adult sons said to me, “Mom, you can’t use the word science in public,” as though explaining socially acceptable language to a child. All I could do was look at him in disbelief.

Science is not a dirty word. Disagreement is not hate, and respect and tolerance do not equal agreement. Asking questions is not a call to arms.

The Word Police are out in force, trolling online and hijacking us in public places. Virtue signaling has begun to take the place of authentic discourse. We’re harshly and instantly judged and labeled by the language we use and the ideas we express.

Toni Morrison said, “Definitions belong to the definers, not the defined.” I think about that every day. Another phrase frequently in my mind is “I’m okay with your disapproval of me.” People have been disapproving of me since the day I was born. I’m used to it. The sky hasn’t fallen yet and somehow I manage to continue to exist.

I’m not the slightest bit interested in disapproval, labels, or sweeping generalizations, which are increasingly idiotic as labels proliferate.

I’ve been reading lately about the “tribe of one,” the logical endpoint to the cultural mandate to divide ourselves into ever-decreasing groups until we’re each completely isolated, believing no one can possibly understand our particular experience as a self-defined ______, _____, etc. Therefore, the world is against us, we’re marginalized and oppressed victims, and we’re owed power, respect, and tolerance no matter how egregious our behavior is. No one is included in our little bubble. Everyone is excluded. Yet we expect and demand inclusion, which is to say, accommodation.

Who benefits from this solipsistic isolation? Is this the kind of human experience we want for ourselves, for our children? Is this social justice?

There are other paths to take. We could focus on our similarities, on the common human experiences binding us all together. We could build a new lexicon of connection rather than division. We could stop using labels, even in the privacy of our own heads. We could value curiosity more highly than outrage, confidence more than a constant state of offense. We could value authentic expression more than virtue signaling.

We seem to have forgotten the real world is not a set of disconnected bubbles. An infinite number of labels (including pronouns) cannot describe the entirety of a human being. Experiences define human beings. Birth. Death. Connection. Feelings. Living in a body. These bind us together. The life we are living defines us, not labels.

Every single one of us in this moment is included in the human family. We all have that in common. Why are we so determined to slash that root into pieces? I ask again, who benefits from this brutal severing? Why are we participating in it? How have intelligent, well-meaning, compassionate people become machete-wielding destroyers, all the while mouthing words like ‘inclusion’ and debating pronouns?

At work (and elsewhere), I’m focused on people. Of course I notice skin color, sometimes eye color, hair, body type, spoken language, cognitive and physical ability. I also notice tattoos, scars, stretch marks, skin tags, moles, and the occasional blood-bloated tick! Swimming suits are revealing clothing. None of these details define anyone, however. For me, they’re value neutral. I don’t connect or disconnect because of someone’s appearance. I can’t make valid generalizations about anyone based on the way they look. We treat everyone who comes in the door with the same respect; our expectations in terms of adhering to our safety rules are the same for everyone. We accommodate differing physical abilities and needs without fuss.

Wheelchairs, walkers, prostheses, oxygen, health status and injury are details, not definitions.

Now and then I interact with someone I hardly know who makes it plain they disapprove of something I said, or wrote, or chose. They were triggered. They were outraged. They were offended. I’m met with a curled lip, judgement, and criticism. I’m made to understand I’m hateful and bigoted, which I don’t take too seriously, as I’m neither. Anyone who knows me at all knows that.

By Landsil on Unsplash

In short, I’m immediately excluded, and there is no court of appeals. There’s no mutual bridge-building. Because of a word or an expressed point of view I’m entirely rejected, now and forevermore. Most of the time I consider the source and shrug off this kind of interaction. In certain circumstances, however, it’s destructive and hurtful in a more personal way. We can’t always choose the people in our lives. I can’t build connections alone.

Situations like this invariably catch me off guard. When someone expresses a view or belief I disagree with, I simply step around it. I change the subject, probing for connection points. I don’t concentrate on our differences or potential disagreements. I don’t expect others to fall in line with my beliefs. I don’t shame or shun others because they have a different point of view. I don’t think of myself as being on higher moral ground, and when others come at me with moral indignation, it makes me smile inwardly. Good grief! Get over yourself already.

I’m willing to include you. Will you include me? I ‘ll give you tolerance and respect. Will you give them to me? I’ll give you the benefit of the doubt. Will you give it to me?

I’d rather be curious than outraged. I’d rather have confidence in myself and my experience than maintain a hair trigger on my sense of offence. Most people don’t mean to be offensive. If they do, it’s best to ignore it. Life is too short to spend my days in a constant state of outrage and offense. It doesn’t change anything and nobody cares. Cultivating a sense of humor is more fun.

We’re not entitled to have our triggers, sensitivities, and ideology accommodated.

If we’re all especially vulnerable, broken, or traumatized, none of us are. If we’re all oppressed victims, none of us are. If we’re all vile haters and bigots, none of us are.

What we all are is … human beings. As human beings, not a single soul is excluded. Isn’t it enough to simply be the best human beings we can be and allow those around us to do the same?

Questions:

  • When you think of a person in your life, do you think of a list of labels or do you think of a human being? Once someone is labeled, do you ever feel you’ve mislabeled, misunderstood, or misjudged them? If so, do you admit it and eradicate the label?
  • Can you describe someone you know without using a single label? Try it!
  • In the first five minutes of contact with a stranger, are you seeking to build connection or mentally applying labels to them? Which labels do you check for first?
  • Do you turn away from anyone who disagrees with or questions your particular ideology or belief system? Do you view such people as hateful? Is it possible to disagree with you or question you and still be a good person?

Leave a comment below!

To read my fiction, serially published free every week, go here:

An Antique Land

I’m living inside this poem right now:

Ozymandias

I met a traveller from an antique land
Who said: “Two vast and trunkless legs of stone
Stand in the desert … Near them, on the sand,
Half sunk, a shattered visage lies, whose frown,
And wrinkled lip, and sneer of cold command,
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them, and the heart that fed:
And on the pedestal these words appear:
‘My name is Ozymandias, king of kings:
Look on my works, ye Mighty, and despair!’
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare
The lone and level sands stretch far away.”

–Percy Bysshe Shelley

I want to escape this haunted place, walk away, never look back, forget, and wander among green trees, feeling their breath on my face. I want the blessing of the rain on my skin, to plunge my hands into rich soil, lie open to birdsong and the sun’s touch.

I want to be free.

Yet, again and again, I find myself crouching in front of that shattered visage, tracing the frown, the wrinkled lip, the sneer of cold command, unable to leave it or look away. I remember, and weep, and try to understand how something so mighty, so powerful, can fall and break apart, become nothing more than a colossal wreck in a desert in an antique land, unvisited, unremarked, nothing but time’s debris.

I was born in the shadow of those stone legs. I watched the sculptors at work, perfecting, shaping. I learned to worship Ozymandias, to make myself small before him, to endure his stony displeasure and indifference.

I did not know his name for a long time, not until I read this poem in high school. He was called Money. He was called Status. He was called Power. He was king of kings – that I never doubted. He required unceasing sacrifice; though I sacrificed everything I had, the sneer and wrinkled lip looked down upon me in infinite contempt. I looked upon his works and saw destruction and anguish. I saw lies and shattered lives and I despaired.

By Wei Gao on Unsplash

I left. I crawled away under the weight of my own inadequacy and unworthiness, across the lone and level sands, feeling his stone gaze upon me. I left, and one day I got to my feet and walked, and then I remembered how to dance, and swim, and the world opened up for me, showing me friendship, healing and joy.

Then, across the years, across the miles, Ozymandias fell, and the ground of my being has shuddered and convulsed with the impact ever since.

Understand, when he fell it all fell. Secrets lay revealed. Lies tumbled naked in the desert sun. Ozymandias, so carefully sculpted by generations before me, disintegrated. I understood then what I was taught to call Money was really named Fear. Status was in fact Shame. The wrinkled lip and sneer of cold command were not love, were never love. The king of kings lay forgotten, impotent, slowly wearing away to sand.

“Look on my works … and despair.”

It’s all gone, the gods of my childhood, the king of kings, the money, the status, the false power.

All gone.

Except for me. I am not gone.

In Maine, I eat and sleep. I journal and write. I walk to work, talk to people, laugh, teach. I sweat on the elliptical and exercise in the pools. I pay bills, make plans, file papers. I buy groceries and cat food. I do laundry and clean. I work in the garden. I’m distracted and absentminded, prone to sleeplessness and unexpected fits of tears welling from some deep unaware place. Or, on the other hand, maybe that place is all I’m truly aware of right now.

I talk and text and email to staff at the memory care center in Colorado where my mother resides, to her hospice team, to people at the agency we’ve now hired by request to provide extra caregiving. I hear about dementia, combative behavior, falls, sabotaged bed alarms, incontinence, sleeplessness, anxiety, medication adjustment. I am called to calm Mom down as though that was ever possible, as though she trusts me or ever took any comfort from me.

And part of me kneels in the desert, watching the family money (a mere pittance, judged by today’s standards rather than those of 100 years ago) and pride, that towering edifice more important than love, more important than health and happiness, more important than anything, sink into the desert like water. Is the desert powerful enough to cleanse it? Shattered Ozymandias still frowns, wrinkles his lip, sneers his cold command, but his works have disappeared even as he himself wears away.

Do I grieve or rejoice? I try to understand. I try to feel something more than despair at the waste of lives, at the dearth of love.

One thing I know: I will not stay here, beside Ozymandias. It’s a cursed place, a dark place. I will leave it to the circling vultures, the sun, the wind, and the silence. I will leave it to Time to wear away the sneer, the frown, the wrinkled lip, the trunkless legs. I left once, and I will leave again. I know this desert is a small place and the world is wide. I know who I am now. I know what love is, and that I’m capable of it. I am no longer alone.

I would have saved my family if I could have, but my gifts have no monetary value. What I have to give, what I am, cannot be bought or sold. I do not accrue a good rate of interest. I was not judged a sound investment. I did not increase my family’s status. Ozymandias, king of kings, was incapable of seeing or knowing me, being far too dazzled with his mighty works, dissolving now into sand while I myself, still vital and alive, pause to find absolution and mourn, groping for a way forward, watching it all decay.

Questions:

  • What idols have fallen in your life?
  • What family secrets have you discovered?
  • Do you find comfort in the eventual fall of what once seemed all-powerful, or does it frighten you?
  • How have you challenged your family’s definition and expectations of you?

Leave a comment below!

To read my fiction, serially published free every week, go here:

Bridges to Nowhere

My partner tells me I “build bridges.” He’s right. I do. All the time. Building connection is the foundation of my life – connection with myself and with others. I also do what I can to support connection between others.

It’s no wonder I feel increasingly alienated in a culture focused so strongly on division.

Image by Bob Dmyt from Pixabay

Some people, and right now many people in power, are breakers rather than builders. I won’t pretend I understand such a priority, but it’s undeniably real and undeniably destructive.

As I’ve thought about building bridges, I’ve realized underneath the patterns of building or breaking is a larger issue: power.

If evil exists, I believe one of the first steps on the road to it is the willingness to steal power by any and all means. When individuals and groups of people lose their power, they’re easy to break, easy to disconnect and isolate. Easy to control.

Dedicated power-stealers are very, very skilled at what they do, so skilled they often present themselves as the marginalized or disempowered victims. In this guise, they infiltrate systems, organizations, and groups like a cancer, steadily breaking healthy connections and communities and appropriating power. By the time enough people notice, clearly identify what’s happening, and organize resistance, the balance of power is so skewed serious conflict becomes inevitable. Those addicted to stealing and hoarding power don’t give it up without a fight. This classic aggressor behavior is referred to as DARVO: Deny, Attack, Reverse Victim and Offender. In this dynamic, when individuals and groups are forced to defend themselves from aggressors their defense is framed as bigotry and hatred. Brutal social sanctions steered by those who steal power are activated to stifle it.

Few see past the emotional rubble and wreckage of destruction to the offense triggering the defense, and even fewer see past all the drama and distraction and recognize a simple, savage power grab disguised as social justice, political correctness, compassion, empathy, etc.

This is not to negate the true problems of systemic and institutionalized racism and bigotry so many people stagger under every day. We all know power (and other resources) are not distributed equally – far from it. And why is that? Because there have always been people who are committed to disempowering others.

Photo by Tim Gouw on Unsplash

I’m a builder, not a breaker. Not a breaker, I hasten to say, in the sense that I deliberately hurt others or injure healthy connection. However, I have more than once tried to build a bridge to nowhere. Worse, I have spent much of my life frantically maintaining my bridges to nowhere, a kind of counter-terrorist who never blows up a bridge but instead batters myself against a broken one as though my blood, sweat, and tears will magically build a solid, effective connection.

The thing I invariably forget is not everyone wants to build a bridge!

Sometimes, and I’ve done this, we blow up bridges accidentally. Some action or word becomes a catalyst and suddenly … BOOM! The bridge is destroyed and we’re left wondering what the hell happened.

Sometimes our bridges are sabotaged by others and deliberately destroyed. Unless both parties connected by the bridge understand what’s happened and work together to make repairs, the bridge becomes permanently weakened.

Sometimes, and I’ve made this choice, too, we deliberately walk away from a bridge we’ve built. It didn’t connect us to what we were hoping for, or it didn’t connect us at all. We built the bridge, it went nowhere, and we found no there there, so we leave it behind to fall into disrepair.

Saddest of all (to me) are the people who don’t value bridges, or can’t recognize them. Building is expensive. It takes time, patience, commitment, and cooperation. It takes emotional labor. For me, the rewards of good bridgework are enormous. Healthy connections enrich us and I believe bring joy and healing into a suffering world. Healthy connections enhance individual power and are productive and creative rather than destructive.

Anyone can destroy. How many can create?

At the same time, I accept and endeavor to respect that some people have no interest in building bridges, at least not with me. Some people are focused on other things, and the activity central to the meaning and purpose of my life isn’t in their field of view at all.

By Landsil on Unsplash

It’s probably unwise and unnecessary to take this personally, although I have a tendency to do so. On the other hand, I have no interest in coercing anyone to build a bridge between us. Forcing healthy connection is impossible, not to mention coercion is a power-over tactic I don’t employ or participate in.

Sometimes I build bridges to nowhere. I work hard, for a long time, because that’s my default. Eventually, however, I notice I’m the only one building. A little bit after that I wonder what would happen if I stopped building. Would the person I want connection with even notice? Would they pick up the work I left undone? Would they value our potential connection enough to meet me half way? Part way?

Honestly, in the case of most of my bridges to nowhere, once I stop building the building stops. I move on, looking for another place to build another bridge. Those abandoned bridges are, at best, picturesque ruins going … nowhere. Resting places for unrealized possibility and potential. Crumbling monuments to loss, heartbreak, letting go, and wisdom.

Questions:

  • Consider your life. Are you more of a builder or a breaker?
  • When you struggle to connect with someone who’s just not that into you, how do you feel?
  • If you can’t successfully build a connection with someone, do you leave quietly or blow up the metaphorical bridge you were trying to build?
  • Who or what has sabotaged previously healthy connections in your life?

Leave a comment below!

To read my fiction, serially published free every week, go here:

Chaos

I have written about dance here before. In the structure I use, the 5 Rhythms Wave by Gabrielle Roth, chaos is part of the wave. The music for chaos is fast but grounded. Think Pink Floyd’s Meddle.

As I lingered on the threshold between waking and sleep this morning, thinking about loss, the subject of my last post; thinking about my distressing inability to publish my usual essay on Substack last week, and thinking about the ways in which I’m reshaping my beliefs about my family and therefore myself, I recognized the chaos part of the dance.

Photo by Leon Liu on Unsplash

To dance in chaos involves letting everything go except the beat. Chaos is about strength, not beauty. It’s about grounding and staying grounded even as the music flings us through space.

Chaos is the part where you dance till you drool.

The edge of chaos is fertile, regenerative, thick with possibility. It’s also powerfully disorganized and unpredictable. It’s exhausting, overwhelming. Too much is happening too fast. When dancing chaos, we give ourselves entirely to the music and follow it through the tumult however we can. As Margaret Shepherd said, “Sometimes your only available transportation is a leap of faith.” Add music to that idea and you have the chaos part of the dance. The car has broken down. The planes are grounded. The train has derailed. The illusion we’re in control has shattered. Our routines and schedules fall apart around us. Our internal and external worlds begin to reshape in ways we can’t understand.

I’ve been troubled in the last couple of weeks by the violence of my rebellion against doing anything except work and play in the garden. I don’t want to write. I don’t want to think or reason. I don’t care about the damn housework. Beltane, May 1st, came and went without my usual ritual and practices. I don’t want to be brave, strong, organized, compassionate, tolerant, empathetic, or responsible.

I can’t remember a time in my life when I’ve shut down like this. I’m unable to guilt or lash myself into being “productive.” I feel ashamed and scared. I don’t recognize myself.

It occurs to me this is my Beltane ritual this year. After all, Beltane is about fertility. Physical fertility, the cyclical fertility of the growing season, creative fertility. My ritual this year is being in the garden. There, with my knees in the dirt, the smell and feel of the soil, the texture of new weeds and old leaves and matted grass (we didn’t have a mower last year), I am peaceful. I know where I am. I am, literally, grounded. I don’t have my phone. Nobody needs anything from me. I bend, kneel, stoop, dig, rake and shovel compost mindlessly. I dream vaguely about new garden beds, rewilding with native shrubs and trees. Black flies come for their drop of blood. The sun shines down on me.

Right now I need to be in the garden. I don’t understand it entirely, but perhaps there’s no need to. What I do know is something in me refuses to engage with anything else. As the lilies and iris emerge, as the tulips bloom and the daffodils fade, as the lilacs bud and the magnolia blossoms fall and cover the ground, I mulch and prune and feel seismic forces beyond my control reshape me internally.

Photo by Kelly Sikkema on Unsplash

So much of what I’ve learned and believed about my family and my place in it has crumbled into dust. Old family myths have exploded with fragments of evidence from Mom’s life, unearthed in the process of selling her estate. I didn’t entirely believe in some of those myths, but they were stable. They provided a family background I was familiar with. I built an identity from the identities family members who came before me created. If I am not the despised one, the broken one, the one who doesn’t belong, the cuckoo in the nest, who am I? Has all that been yet another family myth? Has any of it ever been about who I really am or my personal value, or have I been nothing but a faceless, nameless piece in a dysfunctional family pattern?

I long for freedom. Is this the beginning of freedom?

My recent inability to force myself to take care of business, to be responsible, consistent, and productive, is terrifying. I’ve always pushed myself through any resistance or fatigue. I’ve always known I must justify my existence with constant production, pleasing, and caregiving.

Am I free of that now? If I don’t have to justify my existence because that belief is a lie based on family mythology that’s at least part lies, is that freedom? Am I brave enough to take my freedom, walk away from all the burdens (too heavy for me, but I’ve carried them anyway), and simply choose what makes me happy? I have stood at this crossroad before.

Two weeks ago I wrote about loss. Now I’m watching glimmers of new beginnings, nebulous glints of what might come into the disturbed ground of my being. I pick up trash and find rich soil beneath it. I dig up dandelions and burdocks and discover little patches of old garden. The sun touches me without asking for anything in return. I rake away last year’s debris and mix it with compost to build new garden beds. This morning, the crab apple is in bloom. The tight buds on the white lilac by the porch door gather perfume.

Meanwhile, back in Colorado, strangers live in my mother’s house. Hospice tells me Mom can no longer ambulate independently, even with her walker. A call in the middle of last night reported yet another fall, as she doesn’t realize (or won’t admit) her own weakness. Appraisal revealed my wealthy and powerful grandmother’s gold, pearls, and gemstones were mostly costume, not real. A ladylike façade. A denial of her impoverished roots. A glimpse of shame and fear that rival my own, though I never knew they were there.

Photo by Doug Maloney on Unsplash

It’s Mother’s Day weekend. A friend asked me yesterday how I felt about that, and I had no words.

What is real? What can I bear? The dirt on my knees, under my fingernails. The spectacularly itchy, burning welts of black fly bites. The egg shells, banana peels, and soggy segments of lemon in the compost pile. The lovely cupped double tulips I planted last fall, white, pink and purple. The thumb-sized bumble bee tumbling ecstatically among the pink blossoms of the crabapple. My own breath, heartbeat, sweat. The sun on my skin.

Gardens are made and remade. They die and are reborn. They go wild and survive until rediscovered. They adjust, adapt, take advantage of the edge of chaos according to their own wisdom and purpose.

For now, I’m in the garden, dancing with chaos, nurturing new life, hanging on.

Questions:

  • What is your experience of Mother’s Day?
  • In the times during which you struggle to manage your life, are you fearful or do you allow yourself to follow your needs?
  • Do you find chaos joyful and exhilarating or frightening?
  • What opportunities have you had to reframe your family?

Leave a comment below!

To read my fiction, serially published free every week, go here:

The Feeling of Dementia

In January, my brother and I traveled to Colorado to transition our mother into memory care.

As some of you know and many can imagine, a journey into dementia is an unsettling one on good days, by which I mean relatively calm days. On bad days, days of panic and confusion, days of anger and restlessness, it’s heartbreaking.

One of the greatest challenges for me is the chaos of my jostling feelings, all mobbed together and struggling for attention. I can’t feel everything at once, and I can’t focus on one thing at a time. One minute I’m entirely relieved because I know she’s in a safe, protected environment being well cared for, which has not been the case for the last ten years. Knowing she was living alone, driving, walking her dogs, and slowly losing her ability to function and manage her own life and I could do nothing about it took a daily toll.

Photo by Cristian Newman on Unsplash

The next minute empathy and compassion overwhelm me and I’m reminding myself to maintain boundaries. She is not me. I am not her. My attention needs to be on taking care of my own feelings. If I could have effectively helped and supported her, I would have started doing it when I was five years old. I never found a way because there is no way.

Then I’m angry. Angry because I tried to avoid this particular outcome. Angry because she wouldn’t help herself when she had the ability to. Angry because I’m still in the position of parenting and taking care of my parent, which has always been the case. Angry about her suffering and confusion, and mine.

At the end of every conversation we have on the phone, I tell her I love her. It’s true. I have always loved her, but was not allowed to say so. She would ignore such a statement, or dispute it. She says it back to me now. It always makes me a little bit mad. It was a thing she would not say outright before. She’d sign herself “Love, Mom,” but she wouldn’t say it. She’s not a person who offers or accepts any kind of touch. Does she really love me, or is she merely participating in the familiar ritual of the exchange? Did she feel it all along but couldn’t say it?

Even before her dementia onset, Mom wouldn’t have answered these questions. I will never know.

I’m also sad. It’s not a sobbing, tearing grief, but a gentle, diffuse one, like watching a teabag steep in hot water and gradually turn it into tea. I don’t feel it all the time. There’s resignation in it, and acceptance, and surrender.

Mom is receiving palliative care under a local hospice organization. They recommended a book to me, titled The 36-Hour Day, by Mace and Rabins. I bought a copy. It was hard to read because it stirred up uncomfortable feelings, but it’s also a goldmine of information, including the latest research and standards for dementia care. It’s enormously validating. I read about specific behaviors and the stages of dementia and realize I have been struggling with Mom’s gradual disintegration for years. Nobody else saw it, so I was alone with my fears and concerns, but I knew she was slipping and I suspected this time was coming.

What I was most hoping for from the book was a script for dealing with difficult questions and conversations. I have some professional experience with dementia and am comfortable with refraining from using logic or trying to bring anyone back to reality. Mom has always believed entirely in her narratives, which often were distorted, paranoid, and inaccurate, so I have a long and painful history of managing her stories and beliefs. However, now the briefest conversation is fraught with pitfalls I don’t know how to respond to or address. I spend a lot of time on pause, frantically trying to figure out the best way to engage with her.

Photo by Quino Al on Unsplash

The book didn’t give me a script, per se. What it gave me was a simple strategy for everything: reflect and validate feelings. Not the stories (thoughts), but the feelings. Emotional intelligence strikes again.

This was good news for me because I’m highly emotionally intelligent, even in this difficult personal context. I know how to recognize, name, and manage feelings. On the other hand, it seems like so little to offer. It’s hard to provide comfort in the context of dementia. Language feels pointless. Nonverbal communication is useless over a long distance and, in this case, in person. Mom has flinched away from me too many times for me to even think about touching her. On the phone, all I have is language. Following my impulse to reassure, to explain, to provide some kind of structure, only makes things worse for both of us. I measure my effectiveness by the level of her distress, which is eerily like measuring my effectiveness by the degree to which I can please her. Even that may not be accurate. Mom’s distress has always been extreme in the face of boundaries, limitations, the word “no,” and any questioning of her particular narratives and beliefs. It’s a personality trait having nothing to do with me personally. The mere fact of her feeling confined (which is accurate) may be the root of her distress rather than anything I’m saying or doing. Or not saying or not doing.

It occurs to me feelings live inside the just-born infant. Maybe before that. Certainly, we experience feelings long before we master language. I’m realizing intellect, logic, language, can all fall away at the end of life, too, but the feelings remain. I assume our need to be heard and validated remains.

Conversation with Mom is like wandering blind through a meadow filled with rabbit holes. Dementia is at once simple and extremely complicated. I never know how she will be or what she will say next. Sometimes she sounds down and depressed. Sometimes cheerful. Sometimes calm. Once she even told me she was “content,” a word I’ve never associated with her before. Sometimes she’s anxious, sometimes angry, sometimes groggy and hardly responsive.

When we talk, I work to set aside (temporarily) my own feelings, thoughts, memories, expectations, and predictions. I ask her how she is and listen to her response, looking for the feelings. When she tells me she needs to leave there because “everybody steals,” I sidestep the stealing accusations and acknowledge it must be an uncomfortable and discouraging way to live, and I can understand why she doesn’t like it. She perseverates on this theme off and on, and I enlarge on how difficult the feeling of losing things is, how unsettling to not be able to find our possessions. After all, she’s lost her whole previous life. Her feeling of loss, of things missing, is based in reality. On the other hand, her paranoia and fear of people (including me) stealing money from her was in place long before her dementia. I was never able to persuade her they did not reflect reality. I certainly can’t do it now.

Reflecting and validating her feelings back to her feels inadequate. It even feels condescending. But there’s nothing else I can do, nothing else to say. Witnessing her feelings is all I have left.

And, after all, maybe that’s a lot. We’re not very skilled with feelings in this culture. It’s not easy to find someone who will just listen without trying to fix or solve. Perhaps great healing lies in being heard with nothing added. I hope so.

Another constant theme is one of buying a car and going shopping when we visit. When I ask her what she needs, she can’t tell me. She needs “things.” When I ask her if she’s started a list, she never has. We are not sure she can read or write anymore. I realized when we went out to move her and worked in her house she’s a shopper. She has enough clothing for three women. Her closets were filled with shoes, both old and worn and newer. She had six or seven open bottles and jars of the same products. Her cupboards were packed with supplements and vitamins for both herself and the animals, many of them outdated. As her confusion grew, it appears she self-soothed by shopping and receiving packages in the mail. So, we talk about how much fun it is to take a day and shop for this, for that. We talk about having new things, buying special gifts for ourselves. She doesn’t want to make a list and have someone else get her what she needs. She wants to go on her own and play, buy what she wants, choose what she wants. She wants to feel free, independent, and empowered to give herself that.

She cannot understand that’s no longer possible. Even if she could, the feeling of wanting what she once had would likely persist. It breaks my heart.

Photo by Gemma Chua Tran on Unsplash

I have feelings, too. I turn to journaling, to writing. I’ve tried without success to find support groups in my area; then I found a mental health professional experienced in family trauma to speak with. I talk with Mom’s hospice team regularly; having worked for hospice, I know they want to support the whole family system. I extend to myself all the gentleness, support, and patience I extend to Mom. I hold my thoughts loosely and hug my feelings. They need comfort. They need expression. I think about boundaries and regulate my empathy. I’m newly appreciative of my own freedom and independence. I look for reasons to laugh, reasons to smile. I look for ways to connect to others. I intend to learn to receive as well as I give.

As I write this, an exuberant spring wind blows outside, pushing snow off roofs, tangling our wind chimes, shaking the lilac branches with their new, hard buds. One of the cats is stretched out on my desk in the sun. My desk calendar was in his way, so he kicked it off with his back feet. A glass paperweight pins down a card for Mom, the envelope addressed and stamped. Every Monday I put a card in the mail for her. I do it for me. She does not acknowledge them or remember receiving them. I hope they’re all displayed in her room, but I don’t know. I’m not sure she can read them. I imagine a staff person or hospice team member reading them to her. I’m not sure she can connect them with me at all. But it makes me feel better to make the gesture, and I enjoy picking out cards I think she’ll like. I’ll write a couple of lines about the weather, about the moment, about spring. I’ll sign it with the word love. I’ll put it in the mailbox and raise the flag, and the mail carrier will take it in an hour or so.

Feelings are pure. Feelings are simple. It’s our thoughts about our feelings that fester, tangle, entrap us. I want to soothe uncomfortable feelings, make the pain stop, dry the tears, turn aside the rage. All my life it’s been my role to take care of Mom, fix whatever was going wrong. I still feel her emotional dependence. I still feel the responsibility to solve every problem for her.

But Mom has traveled now to a place I can’t go and she can’t come back from. She can’t follow me, clutching at my clothing, needing, wanting, pleading, demanding, rejecting. I can’t walk beside her in a way she recognizes. We have separated. I am relieved. I am absolved. I grieve for her anguish. Witnessing her feelings without taking action to assuage them is perhaps the hardest thing I’ve ever done in a lifetime of hard things in caring for her.

But I cannot fix this. Neither of us can go back. There’s only feeling our way forward.

Questions:

  • What has been you experience, if any, with dementia in a loved one or family member?
  • What are your thoughts and feelings about hospice care?
  • What’s the hardest thing for you in supporting an elderly loved one?
  • Do you worry about developing dementia yourself? Have you made a plan?

To read my fiction, serially published free every week, go here:

Leaning Against Walls

I found a brief offering in my Inbox from Seth Godin recently about bitterness being a wall we can lean against. The image caught my imagination. Since then, I’ve been thinking about walls … boundaries … supports … prisons … and the desperate, destructive choices we make to survive.

By Marc Pell on Unsplash

Walls. On the one hand, I like walls. I invariably position myself with my back against a wall when I’m in crowds or unfamiliar places. Nothing malignant can sneak up on me from behind. All my hypervigilance can go into watching my sides and front. I feel safe(er).

A corner is even better. Now two sides are covered.

A third wall, as in a blind alley or cul-de-sac, begins to feel more like a trap than a place of protection. What if I want to run away? I’m blocked on three sides.

A fourth wall? Now I’m in prison.

The thing about walls is they may keep danger out, but they keep everything else out, too. The good stuff. Love. Sunshine. Wandering children and butterflies. Inviting paths and trails. Possibility. Exploration. Views. Perspective. Wonderful surprises.

Walls, like everything else in life, can be taken too far. Built too wide and thick. Impenetrable. Too high to climb.

Shelter or dungeon?

What about metaphorical walls? What do we lean against because it’s familiar and we believe it keeps us safe from failure, from disappointment, from heartbreak?

Bitterness, certainly. We’ve risked. We’ve been vulnerable. It ended badly. We feel angry, disappointed, resentful. Never again, we tell ourselves. Things don’t work out for us. The world is against us. People suck. Life sucks. It’s our story, and we’re sticking to it. We’ve found a wall to lean on, a wall protecting us from trying again, risking again, feeling unpleasant feelings again.

By Hector J Rivas on Unsplash

But the wall is made of unpleasant feelings, isn’t it? Bitterness is the result of unresolved unpleasant feelings. So it’s really not protection. It’s reinforcement. It’s the thing closest to us pulling our focus from happier thoughts and feelings. It’s a constant negative reminder. It locks us in place with it, and it blocks any kind of relief.

As I’ve lived my life the last couple of weeks, interacting with and observing others, listening to the inside of my own head, I’ve made a list of walls we lean against:

Victimhood (closely allied with bitterness.)

Blame (oooh, this is a juicy one. “It’s not my fault. I have no responsibility, and therefore no power.”)

Denial (leaning on the wall, eyes squinched shut: “No, I won’t believe that! No, it’s not true! No, it’s not happening! It’s too scary! I’ll only accept what makes me feel good and in control!”)

Chronic health problems (“I would _________, but I can’t because I’m sick.” Sigh. Moan. Groan. Someone once said to me, “I don’t know what I’d do without my pain!” as though pain was her lover.)

Lack of money (“I can’t be happy. I can’t have/do what I want. I can’t experience abundance. I have no power.”)

Perfectionism (a personal favorite. “I would, but I’m afraid to because I won’t do it perfectly! So, no point in trying. I’m imperfect and therefore can contribute nothing of value, not even myself. Expect nothing from me. ‘Cause I’m so imperfect.”)

I don’t suggest we’re never victims, never have health problems, never experience financial scarcity. I don’t minimize the challenges of perfectionism or fear or the seduction of blame. However, constructing a wall out of such experiences and feelings and deciding to spend the rest of our lives leaning against it seems like a dubious choice. It may feel like it props us up and allows us to survive, but is survival the best we can hope for? Is leaning against a wall to stay on our feet the best we can do?

By Christina Botelho on Unsplash

Can a wall made of bitterness stand by itself? If we choose to step away from it, support ourselves, will the wall crumble? I wonder. What if the wall needs our support more than we need its support? It takes a lot of energy to maintain a wall.

What would happen if we just fell down instead of constructing walls to lean against? Better yet, what if we choose to lie down now and then, take a break, look at the sky, feel the world on our skin and beneath us? What if, when we feel hurt or despairing or sick or broken, we lay still and whispered, “Help!” and rested and waited for something or someone to come along and give us a hand back to our feet? If we’re not leaning (cowering) against walls, we’re in full view. Life can find us. Friends can find us. Help can find us. Hope, inspiration, and comfort can find us.

Walls can be useful. But they can also imprison us. They can be strong and organic and lovely, as in healthy boundaries. They can be poorly built and inadequate, too. Or just old and tired. Crumbling. Falling down. Gnawed away by Time’s tooth.

I ask myself, with all the world before me, why do I choose to lean against walls that separate me from it? Is that what I mean by safety?

Questions:

  • What walls do you lean against?
  • Do you think of a wall as protection or prison?
  • How have your walls let you down?

Leave a comment below!

To read my fiction, serially published free every week, go here: