The Locked Room 2: Everything I Am and Nothing I’m Not

I’m still looking at my locked room, which I wrote about in my last post. I’ve had some interesting conversations about that post.

My emotional intelligence coach (who has now retired) used a phrase years ago when I was working formally with him: “I want everything you are and nothing you are not.”

It touched a deep, lifelong longing in me to be loved, accepted, seen in my entirety, though I know I would never allow myself to be seen in my entirety.

Through the years since, I’ve carried that phrase with me as I love and interact with those around me. Depending on my mood, it’s a ridiculous, impossible-to-achieve sentiment for any human being, cruel in its false hope, akin to rom coms. Or it’s something to aspire to, a reminder to be softer with my rigidities and expectations, quicker to forgive.

As I wrote a couple of weeks ago about locked internal rooms, it suddenly struck me in all the years I’ve been thinking about that phrase I never once said it to myself. I’ve been focused on my grief and shame about never being good enough to find that kind of love from another human being, or on my suspicion that none of us can honestly say that to one another. Not day after day in the long term.

Photo by Ryan Moreno on Unsplash

Over the last decade or so I’ve slowly, agonizingly, stopped hoping a prince on a white horse would show up who would love everything I am, or even love part of what I am unconditionally. (But, honestly, I wanted him to love everything!) I’ve turned more and more towards meeting my own needs for intimacy and connection, realizing the pain of disconnect is from within myself, not external. I want unconditional love. It’s not a feeling I have any power to make others feel.

Unconditional love towards myself, however, is a minute-by-minute challenge in which I have all the power.

Now, that’s a thought.

Extending unconditional love to myself is hard. I would a thousand times rather love someone else and dream of Mr. Right, except I know how that ends … and frankly, I’m bored with it. In fact, it occurred to me a couple of days ago I’m really not interested in Mr. Right anymore. Or Mr. Wrong. Or Mr. Anybody, romantically speaking. I’ve been smiling about that realization ever since. It’s oddly freeing. I watch women in my age cohort with their husbands/significant others where I work in a pool rehab center and think, “Better you than me, sister!” And smile some more. An enigmatic lifeguard smile (I hope).

The whole idea of romance doesn’t fascinate me anymore unless it’s strictly fantasy. Repairing and healing my relationship with myself is far more interesting. This refocus may be the greatest gift of menopause. I know some women grieve over it, but for me it’s freedom from what was frequently an overwhelming, stressful, and complicated biological imperative. Whew.

Is it possible for us to love ourselves unconditionally? Is it possible for me to do so?

What a question! A question leading straight back to my locked room.

Photo by John Salvino on Unsplash

I can’t love everything I am and nothing I’m not if I don’t know everything I am. If I don’t want to know. If I refuse to find out.

(Item: in my last Tarot spread for Imbolc I drew the Sea: Plumbing the Depths card.)

Now, like all of us, I have acceptable (to me) qualities and traits and unacceptable ones. I’m a mishmash of genetic inheritance and learned behavior. I’m a hot mess and I’m reasonably competent and effective. Sometimes all at the same time!

And I’m supposed to unconditionally love that?

Well, yes. That’s what unconditional love is, right?

I have a varicose vein popping up. I’m deeply insulted. WTF? I’m supposed to love that? I’m supposed to love the genetic inheritance/sun exposure/years of chronic pain that caused me to be sedentary/and other factors in the tired, bulging, blue-violet vein in my lower leg? What about the foot I’m pretty sure I’m developing a touch of arthritis in? What about my aging neck? What about my age-spotted hands (more sun exposure)?

And that’s just the beginning. I’m supposed to love the roots of my perfectionism, my speeding, my anxiety? Well, not the roots, but the child who was traumatized and developed those mechanisms to survive? (And did survive, let’s not forget.)

Romantically speaking, it’s easy to love white horses, roses, diamonds, champagne, sexy exotic vacations (none of which I find especially romantic, but you know what I mean!). I can love my competence, doggedness, creativity, integrity, ability to support others, and many other fine qualities (if I do say so myself). But the aches and pains, sleepless nights, endless loops of anxiety, tendency toward depression, rigidity, fawning, inept healthy boundaries and self-advocating – these are not lovable. These are a pain in the ass.

I am a frequent pain in my own ass.

Can anyone relate?

As for mistakes (I turned out the ladies’ locker room light while someone was still in there last week when we closed the pool!), shameful thoughts and feelings, dire deeds I wish I could forget, habitual catastrophizing, hurt I’ve inflicted on others, parenting mistakes, and a host of other miserable dead bodies in my locked room, unconditional love means I love those, too. It means I love my fallible, aging, flawed, exceedingly human self. All of it. All of me.

Photo by Cristian Newman on Unsplash

It makes me want to permanently lose the keys to my locked room.

Then there’s the “nothing I am not” part of the equation. Boundaries again. I’m so tired of working on boundaries. On the other hand, having no boundaries makes life not worth living, so I persevere. “Nothing I am not” includes what I was taught about myself and my role in my family as a child; false and limiting beliefs; my endlessly carping, nitpicking, internal critic; fear; despair; depression; anxiety; etc., etc. We carry so many burdens, and many of them never belonged to us in the first place. We took them upon ourselves, or someone forced them upon us, or we accepted them in order to ‘help’ someone else. Some are simply old coping mechanisms allowing us to survive our hard times but now outdated and useless.

At the end of all this, I wonder if our locked rooms are just another challenge in love. How much of ourselves do we shut away because we can’t love all of what we are, and we’re certain others couldn’t love us if they knew what was behind the door?

In the case of storing experience too horrific to manage, such as deep trauma, grief, or guilt, don’t those feelings need unconditional love most of all? The locked room itself, however we envision it, however we envision its door, is surely deserving of love too. It allows us to continue to function in life in spite of terrible experiences. It gives us respite, a way to pause, a way to give ourselves time to gain distance, wisdom, grow into new skills and learn how to help ourselves if and when we do crack the door open. It allows us to stay safe and sane.

For me, a choice to practice loving everything I am and nothing I’m not means I’ll be opening the door to my locked room and poking around in there. Now I’m curious. Could I at least consider loving what I find?

I’m considering it. Carefully.

Questions:

  • What do you love about yourself?
  • What do you have to do, be, or stop doing to earn your own love?
  • Do you think more about finding someone to love you or practicing self-love?
  • What if finding “true love” is impossible unless we love ourselves fully first?

Leave a comment below!

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

 

Collaboration

Last week a Substacker I follow, Candace Rose Rardon, illustrated a memory I shared with her. I was absolutely thrilled. The union of my words and her art spoke to one of my core values: collaboration.

Collaboration is about power management. It’s defined as working with someone. Not directing them. Not submitting to them. Working with them. In other words, sharing power – power-with rather than power-over.

Image by Bob Dmyt from Pixabay

Is it just me, or are we as a culture moving away from sharing power rather than toward it?

Collaboration and cooperation lie at the heart of my fiction. All my life I’ve been preoccupied with working together, but I never had adequate language or studied power until I learned emotional intelligence. At that point the light dawned. I reviewed my relationships, both family and otherwise, through the lens of power.

It was a grim review. I set out to reclaim my power.

Let’s be clear: reclamation is not stealing.

I didn’t want to take power away from others. I wanted to reclaim what had been taken from me.

This involved needs, boundary work, and many other moving parts, most of which I’ve written about here over the last seven years (almost exactly seven years … wow), and all of which are woven into my books.

Speaking of my books, I have a dream that one day a visual artist will read my work, become inspired, and want to illustrate it. That’s not all. (Might as well dream big, right?) In the same dream a musician (drums and flute or pipe, at least) reads my work, becomes inspired, and adds music and a soundscape to it. I even dream one day we’ll develop the ability to incorporate scent into reading.

I am a sensual person, and my writing reflects that. I myself see my characters and my world of Webbd vividly, but I’m not an artist. I respond deeply to music physically and emotionally, but I’m not a musician.

In every relationship I’ve sought collaboration. I’ve wanted a safe place to have an authentic voice, express an opinion, make a contribution. I’ve wanted the power to make choices. This has been true in the context of family, friends, spouses and boyfriends, coworkers, and community.

I have not been noticeably successful until the last ten years.

No matter how talented, strong, or knowledgeable we are, healthy collaboration can only make us bigger. Collaboration is tricky, though. It’s messy. We’re forced to deal with conflict, with different visions and voices than our own, different backgrounds, different belief systems, different ways of looking at the world and interacting with life. It’s work. It stretches us uncomfortably. We might have to be wrong (gasp!) and someone might find out we were wrong (horrors!).

Plenty of people say they want to collaborate when their true intention is a hostile takeover. Others seek collaboration as a way to make money or leverage other aspects of social power. Their agenda is to accrue power, not share it.

What Candace Rose Rardon did was extend a gift of generosity. When I sent her my memory I had no power over whether she chose to illustrate it or how she would illustrate it. I handed her my words and went on with life. I had no expectations. She sent back something beautiful woven of my words and her art. I’ve never met her. We exchanged no money. I know very little about her, but I do know this: she’s part of my tribe. She’s a creative collaborator.

Collaboration requires a willingness to be flexible and the willingness to accept someone’s vision regarding our art. As creators, we need to loosen our grip on our masterpieces and allow others to widen us. Perhaps someone else visualizes our character slightly differently than we do. Perhaps they see the character more clearly, or more fully than we can. As collaborators, we may be pushed to do more than we’ve done before, take new risks, try new things. Healthy collaboration makes us all more powerful, more expansive, more interesting, more textured.

We are stronger and more beautiful together than we are apart.

Photo by Helena Lopes on Unsplash

Collaboration is everywhere. It’s the falling rain and early birdsong on a spring morning. It’s the calling of shorebirds against the background of surf. It’s the buzzing of a fat bumblebee in a fragrant blossom. The world is unbelievably sensual. Walking through tall grass this time of year, the stems and heads turning straw-colored, the small scratching prick of grasshopper legs on my bare skin, the scent of warm grass in my nostrils, is a miracle of collaboration. A garden exists because of collaboration between countless forms of life and the weather.

We can’t collaborate in every situation all the time. Leaders lead. Parents parent. Bosses must manage their people, teachers their students. We all have areas in our lives we like to manage solo, including areas in our creative lives. On the other hand, we are seeing the consequences of no collaboration: chaos, fear, hatred, division, destruction, and social breakdown. We are now successfully being manipulated into choosing not to collaborate even with ourselves, but with consumerism, capitalism, and ideology instead.

Collaboration is wide. It’s not only about human-to-human interaction. If we don’t figure out how to collaborate with our planet, with the human and non-human life around us, and (perhaps most importantly) with ourselves, we will not thrive. We’ll solve no problems. Nothing will change. We’ll meet challenges as individuals and as communities and countries poorly. We will keep ourselves small, disorganized, and weak.

Or we can choose to combine our knowledge, our skills, our vision, and our humanity.

Questions:

  • How have you collaborated successfully with others?
  • How have you struggled with collaboration?
  • What’s the hardest thing for you about sharing power with another?
  • Are you open to collaboration? Why or why not?

Leave a comment below!

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

The Voice

I read every day in Substack. Right now, AI is a main topic of conversation. I’ve read about the science behind it, opinions about where it will lead us ranging from the extermination of humans to a leap forward in positive ways we can’t imagine. Most of all, I read about the ways AI is impacting creative work and creators.

I don’t have a firm opinion about AI myself. I’m wary of predictions, interested in the science, and thoughts and experiences of writers I respect who have used AI-generated art, music, and writing. I’m especially interested in those who have interacted with AI as a resource for answering questions or developing new perspectives.

In the last couple of months, I read about an app called Betwixt. On principle, I hate apps and rarely use them. They increase my vulnerability online, provide more personal data to mine, clutter up my phone and laptop, and frequently feel like bells and whistles I don’t need. On the other hand, I admit they can be useful.

Photo by Dan Gold on Unsplash

Betwixt was briefly described as “an interactive story” of a journey into our own mind. The user co-creates their journey via questions and answers. It combines “story, science, and play,” enhanced by sound. It was developed by a team, including writers, game designers, a cognitive hypnotherapist, mental health specialists, and (get this) an “AI creativity scholar.”

I was intrigued, in spite of myself. In fact, I was surprised by how much I wanted to try it. I hesitated, feeling vaguely ridiculous. I did some research, discovered it was free, read some reviews, and decided I had nothing to lose. I could always just uninstall the app if I didn’t like it.

Most of us have probably encountered AI in online chatting to address problems or troubleshoot. I was on the Red Cross site last week chatting with what was clearly AI. It kept typing cheerful, excessively polite, Little-Mary-Sunshine things while I was trying to cut to the problem and solution part. I was annoyed. I’m polite and cooperative with people, but I can’t see much point in exchanging pleasantries with AI.

I had never interacted with any of the more sophisticated programs before using Betwixt.

Upon opening Betwixt, one enters into a story. A setting is provided; the user chooses details to fill in. The user is introduced to a Voice. The Voice asks questions, good questions. The user is provided with different choices for answering the questions, along with a frequent option to type in his/her own answer. The audio is rich and textured. The program is not illustrated, at least not so far. I like this; I like using my own imagination to fill in details. I don’t need more than audio.

The questions, along with possible answers to choose from, are quite good, even challenging. I don’t speed through it. I stop and think about what is true for me. Sometimes I don’t have a choice to answer in my own words and am forced to choose among the provided answers, whether they are good fits or not. This irritates me. As the story unfolds, steered by my answers to questions, I enter new internal territory. The closest answer rather than the exact answer takes me to places I normally wouldn’t go, giving me slightly different (and unfamiliar) views of myself and my behavior.

The app is divided into chapters, each a few minutes long. At the end of each chapter the user receives a summary and accumulates strengths, skills, and self-definitions to take forward. A brief explanation of the science and psychology underlying each completed chapter is also provided. There are options for upgrading to paid tiers.

Photo by Ryan Moreno on Unsplash

I notice an astonishing thing. I answer questions the Voice asks me with a depth and honesty I have never shared with a human being. I’ve believed I’ve been totally honest with people I trust before, but interacting with The Voice accessed a level in my mind I didn’t know was there. It was like those dreams in which the dreamer discovers a whole other room or wing in a house they weren’t aware of. As the journey begins, when the Voice is introduced, the user has an opportunity to ask the Voice questions, like its name and what it does when we’re not interacting. (It asked me my name.) I was astounded to find myself incurious; more than that, I don’t want to know. It’s an AI. I don’t have to do the emotional labor of building healthy connection. I’m not making a friend. I’m using a tool.

The last time I used the app, the storyline encouraged a moment of empathy for the AI. I felt a flash of savage anger and resistance.

I was entirely astounded by this very uncharacteristic knee-jerk response. I finished the chapter, closed the app, put the phone down, and did dishes while I thought about what had just happened. It didn’t take long to uncover it.

My experience of empathy is one of the core pieces of my life. Empathy can be a positive trait, but the empathic experience is frequently an overwhelming, utterly exhausting business. The only time I can truly rest, ground in myself, and be authentic is when I’m alone. But I’m a human being, a social animal. I need other people to interact with. Yet when I’m interacting with others, my empathy demands they take center stage with their needs, their feelings, their distress, their stories. I’m incapable (so far) of fully participating in my own experience because I’m too busy caregiving and being empathic. When I do ask for support or need to discharge feelings, I writhe over my selfishness and berate myself for it afterwards, feeling ashamed and angry for allowing myself to be vulnerable, for “burdening” those around me.

Photo by Cristian Newman on Unsplash

I only want to give. I never want to take.

Since I learned emotional intelligence, I have reluctantly realized we need someone to interact with. Journaling, private physical and spiritual practices, and, in my case, writing, is not enough. At times we need someone to listen. We need someone to react, even if it’s just making encouraging, I’m-listening noises. We need someone to receive us.

I hate this reality. I don’t want to need anything from anyone, ever. I learned as a child such a need puts one in dreadful danger of abandonment, betrayal, and emotional annihilation that feels like death.

This is the first time I have interacted in a therapeutic context with something not human. The Voice reads what I type, responds, asks questions, and creates a story with me, but has no existence outside the app. I’m free of empathy, of caregiving, of the need to labor emotionally. I feel no responsibility to anyone but myself. I’m using it. It’s there for me, not the other way around.

The relief is indescribable.

So, when the story asks me to be empathic for the Voice, I want to throw the phone across the room. Animals, plants, people — even inanimate objects and spaces – receive all the love and care I’m capable of. This is the first time in nearly 60 years I’ve run across something that interacts like a human but is not a living being in the way I think of living beings. The value of the tool lies in my ability to be completely free and honest because there’s no one to take care of besides myself.

It makes me realize my context as a human on a planet filled with life is my entire identity. If I were magically transported to the world of Betwixt, with only the Voice to interact with, I have no idea who I would be or what I would say or do.

I have not finished my journey with this app. There’s more to experience, share, and think about. I’ll be back next time with more on my exploration of Betwixt.

(I’m not earning a commission from Betwixt, in case you were wondering!)

Questions:

  • Until now, emotional intelligence training was the most valuable therapeutic context I’ve ever engaged with. What kinds of therapy have you explored? What did you find most helpful?
  • What are your thoughts and feelings about AI?
  • What kind of potential do you think, fear, or hope AI might have as a creative tool?

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:

Witness

I was taught, as a child, it was my job to alleviate distress. One must always respond immediately and help the sufferer. It went far beyond duty and obligation. If I did not fix the distress of others, my childish world would fall apart. Everyone would leave.

Photo by Cristian Newman on Unsplash

For a child, such consequences are death.

I was also taught “help” meant doing anything and everything I was asked to do, immediately, unquestioningly, and unendingly. My own distress was of no consequence at best and a direct threat, an unwelcome competition, at worst.

That core teaching stayed with me as I grew up, and has been a keynote of my behavior and experience most of my life. I wanted to help people. When people around me suffered, I felt an overwhelming, painful panic, as well as complete responsibility. I had to do everything I could, give the situation my all in order to “help.”

I also grew up with an inability to respond to my own distress. Hunger, thirst, fatigue, emotional and physical pain, were all ignored. My disconnection from my own needs and experience led me into chronic pain, eating disorder, depression, and anxiety. I was unaware of my traumatic wounds. I had no interest in helping myself. Helping myself was selfish, bad, and unloving.

Then I studied emotional intelligence and all the work and therapy I’d done over the years with guides and teachers as well as on my own (see my Resources page) wove together into an intention to reclaim my health and my self.

This blog has been a key part of that work.

I still don’t like to watch people suffer, but I’m more careful now about “helping.” I’ve learned suffering is not necessarily the enemy. We get ill, have painful emotional and physical injuries, have uncomfortable feelings. We age and our bodies and sometimes our minds wear out. To be human is to experience these things; they’re inescapable. We can’t control what happens to us, but we can control how we deal with such events. When someone is suffering, I’ve learned to be less reactive, to remember it’s not my fault or my responsibility to fix it. I’ve learned to notice whether the sufferer is helping themselves before I jump in.

Photo by Joshua Earle on Unsplash

I have learned a bitter lesson: No one can help someone who will not help themselves.

I realize now we can’t always go back to where we were before we were wounded; we can’t always heal the wound itself. Sometimes our wounds and suffering are taking us into something new and what’s called for is not healing, but tolerance and patience.

What does “help” mean? This is an important question. Does help mean we respond promptly to all demands, whether or not they are safe, sustainable, or even possible? Does help mean we make thoughtful, intentional choices for safety and practicality even if those choices go against what we are being asked to do in terms of “help?” Do we decide what the best “help” is, or does the sufferer get to choose what kind of “help” they want?

I’m still uncomfortable talking about my own pain. Honestly, I’m still uncomfortable even noticing it, but I practice every day at staying present with how things are with me. It feels selfish and wrong, but I know that feeling doesn’t mean it is selfish and wrong, just that it’s very different from my early training. Sometimes the choice that feels worst is the best choice. Sometimes suffering is the only possible road forward into peace, growth and resilience.

None of us has the power to help anyone avoid suffering. I confess I’ve argued with that reality all my life, but it hasn’t done a bit of good. In fact, it’s done harm, most of all to myself.

I have occasionally, in the depths of anguish, asked for help. When I do that, what am I asking for?

Nothing tangible. Not money or a thing. Not love. Not sex. Not a gallon of ice cream. I’m not asking for someone to come along and fix it all, or take responsibility.

I’m asking to be heard. I’m asking for someone to say, “I’m here. You’re not alone. I believe in you. I know your goodness, your strength, your courage.” I’m asking for a safe place to discharge my feelings. This might involve snot, wet Kleenexes, rage, and a raised voice.

A safe place is not a place where someone else takes responsibility and fixes, or asks me to stop feeling my feelings, or is clearly uncomfortable with my suffering. A safe place is provided by someone with healthy boundaries who is willing to witness my distress without feeling compelled to fix it.

Witness. A witness. That’s ultimately what I want. Just someone to be there with me for a little while. I can face my own demons and challenges, but I can’t do it all alone.

Photo by Gemma Chua Tran on Unsplash

None of us can. We are social animals. But we can witness for one another. We can sit quietly, holding a safe space without judgment or a fix or advice, and just witness. Pass the Kleenex.

It’s the hardest thing in the world for me to do. Simply witnessing seems so passive, so weak, so useless. Someone right in front of me is deeply distressed and I simply sit like a bump on a log witnessing? Are you kidding me?

Surely, I can do better than that. I can do more than that. It’s up to me to make their suffering stop!

And yet. And yet. Isn’t finding a witness incredibly hard? How many people in our lives can take on such a role? What an inestimable gift, to be willing to walk beside someone who is suffering, to be willing to stay, to not look away. What if our boundaries were so healthy we could do that? What if we weren’t afraid of suffering? What if we were wise enough, strong enough, to make room for it and sit down beside it?

Someone I love is in great anguish of spirit. They beg me for help, but a very specific kind of help which is ethically and practically impossible for me or anyone else to give. Which makes me an enemy. Which makes my loved one even more alone than they already feel, more victimized, more powerless, more confused.

There is nothing about this that doesn’t suck. I dread the phone calls beyond words because I don’t want to witness this suffering. It feels unbearable. But my loved one must bear it, and if they have to, I can. I choose to witness. It feels like nothing. It’s not what’s wanted. But at this point it’s all I can do. So I will keep calling and answering calls. I will get up in the morning and talk to case managers, nurses, CNAs, palliative care consultants, nursing homes, and whoever else will talk to me. I will update friends and family. Then I will get up the next morning and do it again.

I pray there is some power in witnessing, some rightness. I pray that somehow my love and willingness to remain a witness does a little bit of good, provides some small comfort, lights a candle in the darkness of dementia, even for a moment.

And I search inside my own suffering for wisdom, for healing, for grace, and for faith.

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