Helpful Data on Prolonged Grief Disorder

Image stolen from Parth Hospital

I was trying to explain my current experience to a friend of mine and ran across this description from the American Psychiatric Association  This material is very helpful to me because it helps me feel seen and recognized. Also it helps to know that I'm part of a pretty large group of sad people as 7 to 10% of bereaved adults experience what I have. I've highlighted the material that refers directly to my experience.

Prolonged Grief Disorder

An individual with prolonged grief disorder may experience intense longing for the person who has died or preoccupation with thoughts of that person.  . . . The persistent grief is disabling and affects everyday functioning in a way that typical grieving does not.

For a diagnosis of prolonged grief disorder, the loss of a loved one had to have occurred at least a year ago for adults . . .

Symptoms of prolonged grief disorder (APA, 2022) include:

• Identity disruption (such as feeling as though part of oneself has died).
• Marked sense of disbelief about the death. [Now this one might relate to me if the psychiatric observer didn't believe in ghosts and spirits.]
  
• Avoidance of reminders that the person is dead.
• Intense emotional pain (such as anger, bitterness, sorrow) related to the death.
• Difficulty with reintegration (such as problems engaging with friends, pursuing interests, planning for the future).
• Emotional numbness (absence or marked reduction of emotional experience).
• Feeling that [ED: "my"] life is meaningless.
• Intense loneliness (feeling alone or detached from others). . . .

An estimated 7%-10% of bereaved adults will experience the persistent symptoms of prolonged grief disorder (Szuhany et al., 2021).. . .

Some individuals may be at greater risk of developing prolonged grief disorder, including older adults and people with a history of depression or bipolar disorder. Caregivers, especially if they were caring for a partner or had experienced depression before the loss, are also at greater risk.

Prolonged grief disorder often occurs along with other mental disorders such as PTSD, anxiety or depression. Sleep problems are also common; an estimated 80% of people with prolonged grief disorder experience long-term poor sleep (Szuhany et al., 2021).

Aht! It's about the aht! (NSFW warning)

 Art.

I'm giving it a Boston pronunciation in the title because Will and I once had a friend who made some jokes about a woman who pronounced it that way and so for many years, we would too. Because the last years were so dark, I'd forgotten, until the medium reminded me, how much Will and I loved to share certain kinds of humor.  I guess it would be called "situational humor." 

I spent a brief period in the Oughts being a real artist -- producing work, showing it, and even (gasp) selling it. I must have made, let's see, veritable dozens of dollars.

The basement has a large stack of my works that I only showed to Will. I'm hoping it will be "discovered" after my death and sold for more than dozens, though it will probably wind up in the landfill. I think much of it is as good as I've seen in contemporary art galleries but it's not "easy" or "beautiful".  I think about Henry Darger and his room stuffed with reams and reams of his art, never showing it. Of course, I am far too lazy to produce a 15 thousand page illustrated book.

Anyway, besides the completed pieces in the basement, I also have bits and pieces of projects "lost" for years in various places (kind of like the novel starts that live on my laptops, most of them 90 to 100 pages in before I quit). 

A few days ago, during my downstairs assessment of what yet needs to be cleaned up, I stumbled across four Polaroid pictures of Will (or rather, parts of Will) that I was conceptualizing as a future work. I'm not quite sure where the finished work is now (if I can find the finished product that eventually went up in a downtown show, I'll post it). Will enjoyed showing off his body in the right circumstances. And yes, as you might guess, he wore a Speedo at the beach. He felt so European! And look at those arms with their non-beach tan! Clearly, I took these toward the end of some summer.

Looking at these doesn't evoke sadness. Instead I have a sweet, peaceful memory of our love and connection as I remember how beautiful his body was to me.

 

Censoring added to decrease your amazement.

The Disconnect

 

From Science Friday site on grief and the brain (shutterstock)

I woke up crying this morning and have been teary off and on.

This still happens with some regularity, even though I've been feeling much better over the past month or so.

Maybe my sadness rose again because I did a thing I haven't done since Will died.  I walked downtown yesterday from my house, by myself. I walked down a steep dirt slope we called "The Alps." Since I last walked it, the journey down has been "improved"  with a very stupid winding path that encouraged slipping. After falling down and being annoyed, I just stepped over the irritating remediation hay-rolls to get to the bottom of the hill.

But it wasn't the recent changes that most effected me.  It was my memory of all of our walks downtown.  My memory of him heading downtown a few times a week on the Alps. My memory of becoming terrified in the later years about him getting lost (and he did once, on his way home). All the memories. Memories of him walking by himself. Memories of our settled, routine life. Then memories of the dementia years. But mostly my memory of him in his red coat, walking downtown on this path. For the first year and a half I could barely look at it as I drove by.

This is probably one of those "weird grief things" that people who haven't lost someone close won't understand. How could a public space be so associated with my love that I couldn't bare to be on it before?

Getting downtown felt like such an accomplishment that when a young man at the farmer's market, where I was tasting and buying mead, asked me how I was, I told him, "I'm so proud. I made the walk downtown for the first time since my husband died."

I can't say this to some of the people who know me anymore because sometimes they shame me with their expectations that I should be fine now.  So I tell them I am. Because at this point I would rather lie than be shamed. And in some ways, it is true. I mean, I now know Will's spirit is with me and that alleviates some of the stress. Nevertheless, when I do feel shamed for not being more functional, I start having thoughts of cutting. Fortunately, I've learned why I'm so reactive to shaming (shame being #1 with a bullet on my narcissism chart) so maybe I can just be more aware now and stop the self-harm ideations before they start. At least that's the plan!  

I understand that people have good intentions, like those church folks who told my friend Terri (her loss being just a few months old) that she should already be "moving on." The nice thing is, I always get positive understanding from strangers (especially if I'm buying something from them 😉). 

As part of my "healing journey", I am now making an effort to talk with strangers a few times a week. Largely, this is through my current commitment to "pet all the dogs" and of course I need to ask the dog parents/pack leaders if I can pet. I don't drop the death bomb on them but I do sometimes mention my "healing journey" if they indicate they want to chat for a moment. 

Strangers who don't want to kill or rape you are terrific.

The core issue, of course, is the disconnect between people who have experienced a traumatic loss and people who haven't. It's very similar, in my perception, to the disconnect between people who have experienced violence and the threat of violent death and people who haven't. The physical experience in the brain and body as well as the mind (note: yes, brain and mind are different) changes a person's vision of the world. This is one reason I've always felt a connection with Vietnam combat veterans, because I was a casualty in the war against women, a feminist soldier who thought for over two hours that I was going to be killed by knife across my throat at the end of the kidnap and assault. A soldier who wound up being spit on by my older sister when I was delivered back to my aunt's house.

Before Will transitioned, I had been through more manageable losses - my suicided sister, my grieving mother, my narcissistic dad, my best friend in graduate school. I had even been a hospice volunteer. But I still didn't understand deep grief until the loss of my friend and foundation of 50 years. My recent  understanding has led me to feel so guilty about not being there for the grieving in the past, especially a former colleague who suicided a few years after her husband died.

Fortunately, along with the guilt, has finally come a greater compassion for people who don't understand, like those friendly folks who accidentally shame me, like one of my pastors who six months ago said something about re-bonding with someone because I am a "firecracker" who clearly needs another connection. Nope.

 Here's the deal about why I'm not pair bonding again.

At this point, I've been celibate for 10 years and there's a great peace in celibacy. But in the past I enjoyed sex with a lot of people. Way more than you! (Whoever is reading this, I can pretty much guarantee that statement unless you are a gay man or basketball star who lived in the world before AIDS.) I have been "in love" with people outside my pair-bond six times.

Will and June Jhumpa, 2006

What all that past purple and scarlet experience taught me is that Will was "The One."

I truly did not believe that was the case. Frankly, I didn't think I'd be grieving at all. I'd already had almost 7 years of grieving his daily losses. During all that time, I imagined that after Will's death I would find some nice woman to bond with, to fulfill that side of my bisexuality. Or maybe even become part of a throuple. (And oi, how hip would that have been!)

But at this point in time, I have no desire to "be with" anybody. Sure, I miss sex.  A lot. But I don't miss the negotiation, the figuring out what works, the having to be attractive, etc.  I think what I told my pastor was that it "takes too much work to be fuckable."  He laughed so hard and said he understood my point of view.

Add to this my understanding that all my passion was deeply connected to my broken brain and my narcissism and I just don't want to go there anymore. It's too much work for an old broad like myself.

A Life of Constant Failure

 To re-read my journals is to discover a life of continual failure.

I'm currently using the last half of a journal I started in 1995 to deal with my inability to create. I was working with the assignments in a book called Writing the Natural Way by Gabriele Lusser Rico. People are always telling me I'm "creative." And yes, I have two self-published books of poetry out there. And I have stacks, and stacks, and stacks of artwork in the basement.

This is all part of my failure to believe I have value and that my work has value outside of my relationship to other people.

At the tail end of the 1995 part of this journal is a letter I wrote to myself:

Dear Kake --
Remember that you are an artist! It's the writing and the creating that are important. Fuck the rest. Love God. Praise god. You're a child of god the creator. So take time to create.
-- Kake

 Somehow, now that I seem to be crawling out of the most overwhelming aspects of The Grief, I need to find this creative self again.

However - I will avoid the experience of almost 30 years ago when, shortly after I wrote this to myself, I fell in love with a colleague and almost got myself fired. At 70 I know enough about myself to understand that when I am deeply attracted to someone I can absolutely predict they are the type of person to stab me in the heart with a spiritual hat pin. What this feels like is, "Ooooh, I'm really, really drawn to this person. I better not talk to them again."

But those are stories for another time.

A Better than Medium, Medium

 

You with June Jhumpa

Dear Will --

Were you really floating around last Sunday when I talked with the medium from Texas through Google meet?  Some of the images she grabbed from her mind sounded just like you and some things had nothing to do with you. What I liked was that the meeting didn't have the quality of a cold reading. She presented like the "real thing:" in other words, there was a slight spaciness and distractedness in her behaviors and a sense of actual listening.

One thing that made this quite different from the other readings I've had is that she began and ended with a strongly Christian prayer.

There were a few things that were left field, like the comments about Native American Art (she saw the feather on the wall behind me) and looking at Mt. St. Helens.

But there was so much that felt like you before the dementia. I'll just list a few things.

1. Loving to laugh at a fun joke and loving musicals and humor. She even mentioned The Carol Burnett Show, one of your favorites. And then she had you sharing some humor. She said that you were saying, "You gave me a pretty good send off" referencing the funeral and then you showed her a picture of Mr. Bill on a rocket ship.  I thought, "Yes!" Then she said you said that you had "touched space". She said you lectured a bit on the nature of comedy, saying some could be controversial.  And THEN, she mentioned "treasured moments at home" and said you "wished you'd read more books" which I thought very funny on your part. Through the years of dementia I forgot  all the humor in our lives before then. I'm so glad you got her to remind me.
   
2. You said I made good bread, which I used to do. One of my few household accomplishments.
3. She saw you walking everywhere, but confused it, briefly, with hiking.
4. You said we had a comfortable routine for our lives.
5. You told her "she was very good to me" and that I did a good job caring for you. You talked about medications.
6. You said the times that were your favorite were talking about books and enjoying the beauty of the day to day.
7. You told her you would have had no social life without me. You said, "I just like to stay home."
8. You said you miss the physicality of life and my physicality. This was so true of you. You were always physically present in the world far more than I was. That's behind your gardening and cooking abilities.
   
9. She said you were proud that we were "walking together" and said, "That's my girl". And then she said you used a phrase I never heard you use but that fit our relationship - that I was "Dusting off an old penny." I think that's not an old saying but something you made up that is an indication of our age relationship.
   
10. She said you patted your lap like you were calling an animal and then said that I was the primary caretaker of the animal and you just got to enjoy it. (I figured this was about Princess Birdy or, really, any of the animals, including Max, our first.)
    

There were a couple of comments that echoed two previous mediums:

1. You want me to be happy, not sad. This could be a cold reading statement (pretty traditional to want widows to "move on.") But it also makes sense as you always wanted me to be in good spirits. You held me when I cried. I'm crying now as I write this in my beautiful shared office above the Deschutes. But the tears feel natural, not weighted down with self-neglect. I think these are the beautiful tears I'm going to be crying until we next meet.
   
2. You want me to get outside more. Each of the three previous readers, including the bad man from La Pine, said this. Pretty easy thing to say to someone living in Central Oregon. (But I don't think she knew where I lived as she talked to me as though I were in the same time zone.)
   

The most powerful moments, which could have been you or her doing her cold reading best, was when she said she was overwhelmed by a feeling of powerful love directed toward me. You said, "I found her." Several times she said your love for me was pouring through. She said that you were waiting for me on the other side and I hope that's true. I've sometimes thought that we were together before this life. It's such a blessing to imagine you waiting (with Miss Birdy) to welcome me across the rainbow bridge .

She said that you are always with me. What a blessing that is. I will try to feel it more.

It was so helpful to get this reading and then go and see my friend K. the next day. You remember K. although I know you weren't a fan. You weren't a fan of many of the people I knew. But then, you weren't a fan of many people, period. Whereas I did my best to Will Rogers my way through life, trying to treat everyone I met as someone I liked. We were an odd couple but God made us for each other.

When she asked, "Do you have any questions" all I could think of was to ask if you were OK and she said you said, "Very okay." 

The conversation reminded me of my friend Bob's vision of God -- that it is a great ball of souls in loving embrace. You didn't like Bob much either (remember that time you yelled at him in front of that meeting?).

Some of my sadness is because our lives could have been so much less complicated if you'd been able to verbally express your affection for me. But you weren't. And it wasn't. All blood under the bridge now.

It's funny for me to think that, after all my years of denying my ancestors' theology, I might end up married "for time and eternity". 

I'm still missing you but I'm feeling much freer. 

Love, always,

Kake

Inspired by the Dying

“Our ultimate goal, after all, is not a good death but a good life to the very end.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End

I am inspired by people who seem relatively comfortable with their own mortality. On Monday I spent several hours with an old friend who recently received a fatal cancer diagnosis. She has from 4 to 6 months left on the planet. Somehow, being with her and her frankness about her diagnosis, decisions, and about what's coming next, put me at ease in a deep, deep way.

K. is choosing quality of life over quantity. I have long believed that this is the best way to look at late life issues.

“Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, . . . But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being."  Gawande

Filip Zrnzević on Unsplash

For K, as Gawande says, her life's end is about her own well-being within the "constraints" of her biology, and to have a good life until she reaches the time when pain and discomfort become overwhelming.

Therefore, she has rejected the idea of chasing down doctors at the Mayo Clinic or Memorial Sloan-Kettering who might have the magic cell-killers that could defeat her extremely rare form of cancer. She does not want to spend her remaining time wired up in a hospital bed, suffering from the ravages of "helpful" poisons that might give her an extra year. Instead, she wants to stay at home in comfort. It makes a difference that she is in her late 70s, a reasonable time to be facing the Reaper. Frankly, I think that meeting him at my own age (70) is also reasonable, and if I am ever faced with the decision, I will make the same decision.

 The days of our years are threescore years and ten; and if by reason of strength they be fourscore years, yet is their strength labour and sorrow; for it is soon cut off, and we fly away. (Psalm 90:10)

I am inspired not only by K.s choices, but by her firm management of her doctors. She is deeply committed to being in charge every step of the way. In that, she reminds me of Will, but only because he refused to see doctors -- and he was ferocious about living life his own way, up until the end.

“You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.” Gawande

I wish K. had more enjoyable time left. I am and will be sad about her dying and death. I felt honored (and ignorant) when she asked me if I knew what it would take to reserve Wille Hall, on the COCC campus, for a memorial, if that was wanted. I told her I'd be very happy to serve in any way (I had a funeral celebrant business for a short time) but that Holly Pruett was who I would recommend (she did Will's eulogy).

When I was a "direct report" to K., back in my working days, I admired her ethics, fairness, and ability to deal with bull shitters on staff. Now I have even more reason for admiration.

I just wish she didn't live on the other side of the mountains because it was hard, with the late spring snows, to get up north to see her.

Miracle

I've been working on the downstairs, picking stuff up, moving stuff around, trying to decide what to throw away and what to keep.  I opened up a box into which I'd put some stuff and suddenly saw THIS SWEATER! This sweater that I'd "put away carefully so I don't lose it".

This sweater, from ZCMI in Salt Lake City, is very important to me. And I thought I had lost it.  I thought I'd accidentally lost it in one of the bags of Will's clothing I gave away just before and just after he died. I thought it was gone, gone, gone.  But I found it on Wednesday!  A miracle. I held it to my chest and started crying. Throughout the day I kept going into the bedroom where I left it and touching it, holding it.

Why is this purple and gray sweater so important? Even though Will bought it for himself when he visited Salt Lake City back in the mid 80s, I wore it for a full winter quarter while I was going to school there.  And we often shared the wearing of it here in Bend.  It was the one piece of clothing of his I wanted to save and then I thought I'd lost it and have grieved for it.

And now it's back! It has a hole in one elbow that I will felt-repair. And I've shrunk since I wore it regularly.  But it's going now into my sweater drawer after I repair it and I will wear it sometimes and remember him.

I thank God every day for the miracles They've shared with me on this journey.

Finally! A Sonnet!

I began my serious (but definitely desultory) "work" as a poet my senior year in high school by writing some sonnets. I have won two awards (around forty years apart) for my sonnet writing.

But since Will entered Hospice, or actually, since I left the Skyhooks,  I've barely been able to write free verse, much less anything more formal. But I'm taking a poetry class through Sarah Lawrence Writing Center and our teacher, Elaine Sexton, is providing some great prompts as we look at and become inspired by the work of other poets.

Last week we were to be inspired by the poem "Waving Goodbye" by Gerald Stern.

Below find what I wrote. We don't have much time in class for in depth feedback. So people's quick first thoughts were mostly 👍 on high heels and either questioning or 👎 on the accent mark over the past tense in "embalmed". Some folks appreciated my use of the term "toxic positivity" -- not often seen in poems. And a couple liked the ending couplet with its punning finale. Most of the feedback in class comes from the professor, who generally liked my poem and its rhyme scheme. The reason for the quick feedback is is that everyone has a poem and the professor also has information to share and she wants to give time to visiting poets.

Things people didn't say:  

• The meter in this poem is rough .. some iambic feet, some spondee clusters, some lively dactyls ... that don't always mix nicely but sometimes work perfectly.
  
•  Wow! It has a Shakespearean/Elizabethan sonnet rhyme scheme! But the use of the long sentence and its enjambment makes some of the pure rhyme less noticeable, making the sonnet appear more modern and less annoying!
  
• I notice you use the word "chiefly" when you talk about lack of compassion. Is that because there remain a few dear, dear friends who are able to sit with you still during the waves of grieving and wilderness?  "YES, " I would reply, "Yes, Thank God."
• The poem could have had a better, more specific title.
  

THE AMERICAN WAY  

"YOU NEED TO MOVE ON"

 

from a show at The Frick

 

I wanted to know what grief was like before

toxic positivity, before friends shied

away, uncomfortable with the chore

of comforting, before our long, slow slide

into consumerism demanded happiness

from everyone who dares to suffer, lose,

or fail in their pursuit of blissful success

at work and home, so I tried my best to choose

an older way, showing sorrow, wearing black,

putting your cold, embalme´d body in the ground

while my spike heels sank in mud I brought back

to our, now my, old house. And where are they found,

the friends who countenance long grief? At last

I found compassion chiefly in the passed.

 

 

 

© Kake Huck

Fun with ChatGPT

 So I've been doing some research on Life Coaching and this morning I played around with ChatGPT and one of the questions I asked it was for a "dialogue between a unicorn and a disbelieving life coach." Pretty nice writing for a machine.

Photo by Paul Bill on Unsplash

Unicorn: Good day, human. I am a unicorn, and I come seeking guidance.

Life Coach: (skeptically) Ah, yes. A unicorn. Very amusing. What can I do for you?

Unicorn: I sense doubt in your voice, but I assure you, I am real. I seek advice on navigating the complexities of existence.

Life Coach: (raising an eyebrow) Right, well, let's entertain this for a moment. What exactly are you struggling with, Mr... Unicorn?

Unicorn: You may call me Starlight. I find myself surrounded by disbelief and skepticism, even from those who claim to guide others. How do I stay true to myself in a world filled with doubt?

Life Coach: (leaning back, intrigued despite himself) Well, Starlight, it sounds like you're dealing with a crisis of identity. But let's be realistic here. Unicorns aren't exactly a common sight. How do you expect people to believe in you?

Unicorn: (nods solemnly) I understand that I am a rarity, but does rarity make something any less real? My existence is not defined by the beliefs of others. I seek to inspire wonder and hope, even in the face of disbelief.

Life Coach: (pausing, considering the unicorn's words) That's... surprisingly profound. So, what do you propose? How can you maintain authenticity in a world that questions your very existence?

Unicorn: By embracing who I am and staying true to my purpose. I may not convince everyone of my reality, but those who believe will find magic in their lives. And perhaps, through their belief, others will come to see the world with wonder once more.

Life Coach: (smiling faintly) Well, Starlight, I must admit, you've given me something to think about. Perhaps there's more to this world than meets the eye. Thank you for sharing your perspective.

Unicorn: (dipping its head gracefully) The pleasure was mine, dear human. May your journey be filled with light and possibility.

Life Coach: (watching as the unicorn vanishes into the shimmering mist) Perhaps there's more magic in the world than I realized.

More grief memes

 

Eclipse

Some pictures from Cleveland. My hotel was The Tudor Arms, up near Case Western Reserve University and far from the madding crowds downtown.

 I took pictures of the stages by putting my eclipse glasses over the lens of my phone.

Poultry Class

 Braaaack! Squaak!

Past proof of poetic perfection

Hahahaha.

I'm taking an online poetry class from the Sarah Lawrence writing lab. Yes, yes, yes. I'm already a published poet. I fuckin' know that. But I've lost my mojo and am trying to get it back. A couple of recent tries went absolutely wrong and then last Monday morning (an hour or two before it was due) my brain came up with the poem published below.

I had the two classes Monday, poetry and right after poetry, the Lolita seminar. Then Tuesday I had four events. Four times of meeting and talking to people. I was exhausted by the end of the day.

 

 

 

 

SOMEDAY I’LL LOVE KAKE HUCK

 

 

she says. Because I pay her. Because she likes me.

Because her couch has the usual number of cushions

and it’s what the ketamine was for. The breathing

among trees. The money and massages. The church

working and the sex worker. Decades of weed

and hours of influencers. And the broken glass.

And the knife. And the flights. And it gets better,

it gets better over time.

 

Standing near the Thames

a screen away from Oregon

I am watching the detectives

discover you are dead again

today.

 

And today.

 

And today.

 

 

 

 

© Kake Huck 2024

The Good Narcissist

So I took a 150 point hand assessed Likert-like scale for narcissism, by suggestion of Brittney, baby therapist.  Yesterday we talked a little about it. We agreed that this kind of test has a certain level of bogosity thrown in (because of language use, time and place issues) as all "personality" type tests do. Nevertheless, she did the clustering of the 15 basic items being looked for and told me that my top five, especially the numero uno, were far above the other scores.  And seeing my bottom five made me feel good.

So, top scoring personality aspect?

"Shame: concerning shame or humiliation in response to perceived slights, criticism, failure, or rebuke."

Yup.  As some influencer noted, "the kryptonite of the narcissist." After so so many years of working to deal with this particular aspect of Self, it's ba-a-a-a-ack. I don't know how many of my many, many therapists have told me that my language and my attitudes towards others reveals a great sense of shame and it's my fear of shame that sometimes gets me to feel depressed. And, yes, I'm going to agree. When I look back at my life, most of my cutting incidents have been related to shame, to the sense that I've made some terrible mistake in my relationship with others. It turns out I have a huge fear of being humiliated by doing the wrong thing. There's a part of my brain that understands every criticism of me as a death threat.

The famous Mike Ryerson photo of Portland Mayor Bud Clark

Therapist Phil, back in 2014, told me that my fear of being shamed was actually what lead to my "shameless" sexual behaviors. The way he explained it was that someone who was so afraid of feeling shame would purposefully do things others would consider shameless as a way of showing she was in charge of shame.  So, control is also a big issue.

"Exhibitionism: a seeking of constant admiration, showing off when in the presence of others, and attention-seeking, without reference to feelings of insecurity."

I laughed when I saw this one because, yes, that is a big characteristic of mine and I will totally own it. "Lookit me, lookit me, lookit me" is certainly a big part of who I've always been.

"Reactive Anger: concerning anger and rage in response to perceived slights, criticism, failure, or rebuke."

This is part of my reality since caregiving. I don't think I was that reactive when I was working, at least most of the time. And certainly not in my classrooms (at least not once I completed my PhD). And since widowhood I've been far too angry far too much of the time and very reactive. I don't like it.  It feels like it did when I was young, when the fires of rage could just consume my mind. My reactive anger is why I accidentally cut my radial artery. Little things can set me off. 

"Need for Admiration: involving a sense of inner weakness, uncertainty and insecurity with respect to a desired or perceived greatness."

Yup. This is like my exhibitionism. I like being special and it's because in my heart I feel like I am nothing and of no consequence. Especially now that Will is dead there is no one to whom I am special. And as I look at my life, I see a person who has enjoyed being the first one in class to raise my hand, the one who understands what the teacher wants and gives it to them. I like having the poem everyone admires. 

"Authoritativeness: assessing a tendency to take charge of situations, to authoritatively take responsibility for making decisions, and to perceive oneself as a leader."

This is one of those "if I have to" issues. I would really prefer anyone else be in charge but if it's necessary, I'm like my Mom and can step in and gets the cats organized. Also, I can have a loud voice and commanding presence when I want to, in spite of my lack of height.

So much for my top five characteristics.  We'll look at these a bit more next week but one thing Brittney said was that she sees these top five as also about a need for connection (that's her big theme for me, by the way). She also noted that these five aspects were about my need for control.  Oh, yes.  I have a hu-u-u-ge need for control. Well, I don't "trust" the world.

The best thing about the scoring, however, was that I scored the lowest in what I consider the worst qualities of the narcissist: lack of empathy, manipulativeness, indifference, and exploitativeness. 

The way Brittney talked about narcissism was that a pure narcissist would feel like they deserved having everyone in the room focusing all the caring on them and do whatever they needed to do to get that. She said that I simply seemed to want connection from someone, somewhere. I want to be special but I don't want to take away anyone else's specialness.

So, I'm not sure what the next steps are. But I do know they will involve talking about myself so they will be fun.

More Cleaning

So yesterday I had Jesus (Hey soos) come by with his College Hunks Hauling Junk truck and he and his co-worker managed to fit in a bunch of stuff to take to the dump.  He remembered me from two years ago "when your roof was being redone."

1. The old chest of drawers I'd originally purchased from Goodwill back in 1988 when I moved here. It was pretty much junk anyway. So Sunday night I opened its drawers and found several "trip memento" boxes that I stacked in tubs awaiting my desire to create a few more memory books.
2. An old trunk covered in peeling-off floral wallpaper that had originally accompanied me to Pocatello, Idaho, in 1971.  When I cleaned out this trunk I found A WONDERFUL surprise: a photograph I had lost since 2006!*
3. A bunch of linen paper saving boxes that my dad had packed his columns in.
4. A box of throw away books once used for crafting.
5. Old wooden shelving.
6. Scraps of tarp material.
7. a weird old 20 lb weight (metal with concrete inside)

Jesus managed to fit it all into the very last part of the truck so I wound up paying only $139.

 

*Now, about the photograph that once was lost but now it's found. I had noticed it was missing after I moved from my "airlock office" in Deschutes Hall and into the "Administrator's office" in Pence. So I haven't seen it since 2006. I found it wrapped in a bunch of material I'd used to line one wall of my teacher office.

 It's a picture of old friend Lee, me, Mike's boyfriend, Mike's friend who was a girl, and Mike. I still feel embarrassed by the way Mike's boyfriend and I behaved at his funeral in 1986. We were horrified by the way the Catholic priest, who didn't know Mike at all, talked about him and we acted badly. I feel sorry for Mike's parents. At some point his mother gave me a bad smelling knitted bedspread as a keepsake. Mike once told me that he was the only gay man he knew with a cliche relationship with his parents.

Mike was my closest friend in graduate school. From January, 1985 until his death in August, 1986 he lived in the apartment upstairs from mine in an old, chopped up mansion on East South Temple in Salt Lake City. I've mentioned him before. It's hard to describe what a wonderful relationship we had. At the time I was separated from Will and working through my terrible relationship with Chris. And I was struggling with the doctoral program at one of the top ten comm. schools in the country.  Mike helped me survive my first two years at the University of Utah. He was so much smarter and better educated than I was, having gone to a "good" four year university where they actually read academic articles in classes rather than "original" work by Aristotle and Churchill, as I did in my Idaho classrooms. Mike also introduced me to the work of Matt Groening and the world of Dr. Who. For months we'd end most weekday nights having cocoa in front of his small tv, watching Monty Python or Dr. Who as they played on KUED. We would quote the Pythons as we walked to class and talk in silly voices and do silly walks.

My brain was not working for a full quarter after his death. So much so, that a member of my committee, Dave Eason, later told me that he "gave" me a B in his class that fall only because he felt sorry for me.

I'm so happy to have found this photograph so I can remember better what Mike looked like. It's also helpful to remember a time when Lee and I were still good friends. That close relationship ended in 2012 (though it should have ended in my head much earlier). Lee and I are still friends but not in "that way."

"That way" of knowing what the other would say, of being in the other's heart and mind.

I don't know what friendship is anymore. Is it the relationship I have with someone I see once a month?  Once a quarter? Once a week? Is it determined by what we talk about? By what we do together?

I'm clearly at a loss as to how to do it. I'm in mental pain so much of the time because I'm such a failure at it. I've lost people because of my ineptitude.  And then there is the "friend" I gave thousands of dollars to to help her out and just got a texted "thank you." Not a card. Not a call. Basically someone I've loved for 20 years just shitting on me. To me, because of Will, giving money is a way of showing love. He couldn't tell me he loved me or that I was beautiful, but he used money to support me in spite of all those moral decisions I made with which he disagreed. Why would I show so much love to a person who shit on me? Because I'm a loser. Because I hoped that giving someone money would encourage them to care about me.

So it's such a blessing to have this picture to remember a time when I had no "lover" but I had a friend who I saw every fucking day. A friend I lived near. A friend I watched tv with. A friend to go dancing with.

Drawing mix of Tom of Finland and Matt Groening by Mike Swan

It's my relationship with Dead Mike (murdered Mike) that I use to measure my relationship with Dead Will. I still have four years to go before my brain is working properly.

Colonoscopy

(I started this post yesterday but nodded off before finishing. I also left the garage door open and the car in the driveway last night! I was NOT supposed to be driving yesterday, according to my take-home paperwork, but I needed to deal with Mr. Winston -- he wasn't eating and I thought it was because he hadn't pooped. So I drove him to Compass Park last night to see if he would poop. So he would eat something. He ate nothing all day until around 5:00 pm he was that worried about me. And this paragraph started out being about forgetfulness and turned into a story of my relationship with my dog. And poop.  Everything comes down to poo. Writing was ever thus.)

So, yesterday was my fourth colonoscopy.  I had soooo much anxiety preceding it. I was praying hard and talking to God about meeting Will and made sure to get my advanced directive to my doctor, my sister, and a friend. I'm glad I'm terrible at predicting anything! So I'm here on the planet at The Haven this morning, with some residual pain in my gut but happy to have this done! 

Now I can move forward with being anxious about my trip on Sunday.

Fortunately, all of the nursing staff at St. Charles that worked with me were awesome, as was the doctor.

Folks assuaged my fears but didn't try to talk me out of them. The lead nurse, whose name at this moment I can't recall, saw my "Bistro Huddy" shirt and said he was a fan of the same creator. We had a nice chat about funny influencers. Other nurses were concerned about my comfort level ("another blanket, please"). The "get your clothes off and lie here" area was very chilly. 

Although I was scheduled for 11:45, I didn't actually get my clothes off until around 1:00 and didn't get operated on until around 2. Then the doctor came to talk with me while I was barely awake. He told me I had more holes, that he cut out and sent for biopsy two polyps, and that there was something a bit odd about my colon, though I forget the exact term. They have to use the pediascope (kids colonoscope) on me.

I'm good now for five years.

The prep was worse than during my third colonoscopy and I will never go through that prep again. A gallon of awful stuff -- Gavilyte-C.  For my last colonoscopy the laxative was in a bottle smaller than a coke can. So I managed to keep the first eight cups down, during and following which I spent a couple of hours on the john. 

But then I accidentally took a nap on the couch (having been awake and drinking only clear liquids since 3 am Thursday) and woke up after midnight. I was supposed to take the second half gallon at 11:00! So I gulped down four cups and sat on the john and woopsie daisy, all eight cups wound up very quickly on the floor. It takes approximately 1/2 of a paper towel roll to get up a quarter gallon of that stuff. Do you know that Gavilyte-C is an excellent floor cleaner?

Miss Poppy beside my hospital armband

So, I waited 15 minutes and then, more slowly, tried to get down the last four cups. I got down 3 then got a sauce pan on my way to my throne.  Good thing, too, or I would have used the other half of that roll of paper towel. So, no more Gavilyte-C!!! Ever! 

It just seems ridiculous to me that a small person like myself is taking the same fucking dose as someone 6 foot tall. 

So I'm glad it's over, except for getting the story from my two polyps.

I was taken and picked up by my sweet new friend and fellow widow Beth Ellis, who also gave me a homemade chicken pot pie for my dinner and it was deliciouso.

Easter

Holy Week has my favorite service of the Episcopal church -- the Maundy Thursday foot washing.  I find this the most Jesusy of services and I like washing other people's feet. This time the feet I washed belonged to the sermonizer who said my washing gave her chills. I tried to put a lot of love and concern into the act. I missed doing the Great Vigil this year but I also didn't miss it because it's a lot of work and our altar guild is small right now. The flowers were beautiful on Easter morning, thanks to the flower ladies who worked so hard on Saturday.

Pope Francis washing feet of female inmates 2024 (Reuters)

Dear Will -

I asked you once, maybe a dozen years ago and probably after your dementia had already started, whether or not you had this beautiful memory. You said you didn't. But I still hold it.

It was the Easter of our first year together, before most people knew about us. You were living in the apartment next to Audrey Greenwood. It was in the days when we could hear her two kitties (One was called Hercules, I remember) racing back and forth down the hallway next door that paralleled your hallway. You had put on Handel's Messiah, which I had always thought of as Christmas music. But you explained that it was Easter music. And we made love in the couch in the front room near the grear windows while listening to it.

The first year was so magical, perhaps because it was secret. And writing that reminds me of the time I met you while we were each crossing the perfect square of Caldwell park on some Saturday and you leaned in and kissed me! It felt so rash after months of secrecy! And yet so perfect when you smiled that smile of yours.

That smile that was on your mouth the day before the day before you died, when you told me you loved me for the last time. 

Until we meet again,

 

Kake

Neue, Nu?

 Dear Will --

AI Gustav's "Portrait of a Small Poodle"

Last week's New Yorker had a snarky review article about Klimt in the Neue Gallery.  The writer was pretty rude about the artist and I disagreed throughout. Nevertheless, the article of course made me think of you introducing me to that gallery the first time we went together to New York.  The last time we went was in 2015 when you were already so broken. What a terrible trip that was.

But the Neue What a wonderful space. How fun to walk in that neighborhood. How fun to go from room to room. I was remembering the dark shows and the light. And the wonderful early 20th Century display chairs and tables.

At some point I'll be able to go back to New York. I want to. But I'm not sure when it will feel okay for me.

I've attached Klimt's portrait of Winston.

Love you forever,

Kake

So funny

 Yesterday as I was crying/howling in her office, Sarah told me that my way of doing grief -- through feeling all the feelings as they occur, "is the fastest way to move through the journey."

And I just laughed and laughed through my tears. 

These two years (9 years with the dementia grief) have felt so fucking long.  When will I know who I am? When will I feel okay in the world again?

Anselm

 Dear Will:

Anselm Kiefer The Orders of the Night (Die Orden der Nacht), 1996, from Gagosian Quarterly

I'm almost sorry I called you in to watch the Anselm Kiefer movie with me. Wow. Talk about your European pacing! Wim Wenders is definitely not Errol Morris, though in this flic it seemed like he was trying to be, what with all the story telling parts coming out of screens within the screen.

But wasn't it interesting to find out how late we discovered the master? Not until 2003. Or was it 2006? I forget when and where it was that we went to a museum in either Scandinavia or Deutchland and had our first socks-being-blown-off experience of his work.

And weren't his gigantic workshops, as displayed in the film, fascinating? Ceiling high stacks of objects and stuff. But I thought it was sad sad how he wasn't smiling when he was setting fire to that one big painting. He should have been having fun. But he seems like a very serious creator who does nothing else but create.

But even though it wasn't that enjoyable as a film, I loved the section in Anselm where we saw SO MANY PAINTINGS! So many of those gigantic pictures. And so many so beautiful, not just meaningful. I may, in fact, fast forward through the film again just to watch those scenes again.

And remember finding that one giant picture in a gallery in San Francisco, priced at only 25 thousand?

As for Wim Wenders. Remember when I drove us to fucking Provo to see Kings of the Road? That would have been shortly after I graduated. Before or after I started at KWIK?  I can't remember. Nor can I remember the drive back to Salt Lake at 11 o'clock.  I'm sure we didn't try to go the all the way home after but now I can't remember whether we stayed with Rosemary or at the downtown Motel 6.  Before your dementia, I could have asked you and you would be able to tell me. You had such a great memory until you didn't.

I miss so much talking with you about art and movies. And just sharing our history of looking and watching. Our search for all the Caravaggios in Rome. Our hunt for all the Munchs in Norway and Sweden.  Whenever I think I might want a close relationship with another person, I think about how much life experience occurred in fifty years and realize it would be impossible for anyone to compare or adapt.

   "So I'll go to my grave lovin' you."

They Hold Onto My Fur

The Kiffness and Oh Long Johnson

Yesterday my grief therapist got back to me and we talked for almost a half hour on the phone and agreed to go back to once a week.

I also spent time, after doing some altar guild duties, to sit down with my friend and priest, Jeff.

Both of them said that I'm not a bad person. And, since they are both authority figures to me, I had to accept what they said. At least a little bit. Out of respect. 

So maybe it's possible that I could be a not bad person. It helps me feel better about continuing. And my grief therapist reminded me that I have been okay (okeh) in the past and I can be okay in the future. And hey look, I'm 2 and 1/2 hours into the day and I haven't cried yet, which makes today different than the past week.

"Hold onto my fur I like it
When the dogs are barking"

update

 This space was empty but now it has something.

update

 A comic by bird expert Rosemary Mosco created after the death of her father.

New to me song

This song  by Danny Gokey called "I Will Not Say Goodbye," is at least 13 years old but new to me:

Lyrics: 

 

today

Advisors

Around the time June Jhumpa was adopted

When I got deeply depressed in graduate school, my dissertation advisor told me to pull myself up by my bootstraps and get out of my funk.

I didn't have the ability to tell her, "Mental illness doesn't work that way."

I occasionally search google to see if she's dead yet. She isn't. But others are. Like the one who sang to us, "You always hurt the one you love," as an introduction to psychological criticism.  If Will were here he'd laugh with me about the mustard-colored suit Sillars wore when he sang. And then the one who said he was my friend and then gaslit me is also alive. Sometimes I wish we were still friends but then I remember he's a dick.

The high school teachers I loved are all dead, of course - Mr. Barrans, Mr. Ridgely, Mr. Glasner, Mr. Negendank. I think about high school because that was the last time before Will died that I was alone like this - when I was living with family. But then I thought I had one friend who loved me as I was. But that friendship is gone as well, as least in its classic form, though it died long before I was ready to pronounce it.

Last week I was a bit of an advisor as I spoke with A. whose wife has dementia. A. told me that when she had heard the story of my putting my hand through a glass door because of mindless rage she'd thought it was extreme but now she has realized that it wasn't extreme and I told her "I'm sorry you have that understanding now."

Terri arranged our first meeting of Grieving Souls group at church. Originally it was supposed to be widows and widowers but that wasn't "diverse" enough, according to the church people who have a say in such things. Frankly, I feel angry that I need to share a group with people who have lost their pets but whatever. Every grief is a grief, huh? We're all equal. Like the women whose butts were grabbed and those of us who were gang raped.  All equally suffering harassment. I'm so glad that Terri has the determination and facility to reach out. I didn't and don't. And it's great that I now have someone to take me to and from my next colonoscopy. That's one of the purposes of the group, to give people who don't have other family or friends' support. And it's good that I will be able to provide support for others.

I have gratitude every day for what I have. I am financially secure and what's more important than that? 

At the same time I am sad because I've lost the one person who loved me as I am.  But that's okay. At least I got that experience and many people do not.

Every day, lately, I see in my head the image of him in his diaper, weighing 112 lbs, walking into our bedroom after escaping the hospital bed in the living room, with a big, childish smile on his face after surfing the wall down the hall.  That happened just as I was arranging with College Hunks Hauling Junk to take our bed away. He would be dead within six days.  Or I see his dead face in the reed coffin in the graveyard when I had to touch it one last time. He was so cold and hardened from the embalming fluid.

At least when he was alive, even if he didn't know me, I could hold him.  At least when he was in his coffin I could still touch him and feel that so-well-known profile.

I miss him so much every day. And he's dead every day. Every fucking day when I wake up he's still dead. Sometimes when I hear noises in the other room I call his name. I pray to feel his spirit touch the bed again. But someday I won't wake up and our spirits will be together again. I live in this hope.

And anyway, I deserve all this suffering because I wasn't "there" for some other people when they were grieving. This is just karma doing its thing. As the late Malcolm Sillars once (or twice or a million times) said, "Work is good. Suffering is better."

So I'm fine.