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.