The Most Boring Nightmare Ever

Last night, I had a nightmare where I was looking at a stack of my mother’s banking records. I woke up very startled and yelled “NO!!!”

Now you may think, “that’s not very scary!” and you’d be right if you didn’t have any context. My mother died on July 4. Tragically, I couldn’t get there in time to see her. The day before she died, I wrote:

My elderly mother is dying. She lives on the opposite coast and is the definition of a patient at high-risk for coronavirus infection. She has lung disease (COPD), two types of cancer, and is on oxygen 24/7. Her neighbor wasn’t able to reach her on Wednesday and called 911. She refused to leave her home. She desperately needs medical attention and professional care. Yesterday the neighbor convinced her to go to the hospital. Now, as the only child, I have to plan for her death. She won’t recover, she won’t ever live on her own despite her stubborn and obnoxious and admirable efforts to do so. It’s heartbreaking, and it’s too much for me to handle.

Since then I’ve traveled across the country four times, which has involved flying on 16 different planes. All while wearing masks and being in situations where adequate social distancing was not always possible. I’ve had to stay in my childhood home, where I haven’t lived in decades. I sorted through 50 years of my mother’s accumulated possessions, as well as her medical and financial records. I encountered unexpected letters, obsessive listings of grievances and household items and charitable donations, various collections/accumulations, and even my kindergarten drawings. It’s been quite confusing, like living at least two separate existences. Recollection of memories from my real life was impaired while I was there.

Then I returned home and observed the second anniversary of my wife’s death. It’s incredible that my life has been empty and meaningless for that long.

So the dream was really about disorientation and death.

 

Meanwhile, after months of covid denialism, anti-science propaganda, and anti-mask ridicule, SARS-CoV-2 took ironic revenge and infected the president of the United States.

It is what it is.

It Smells Like Gunpowder

It’s so loud, and I’m so tired. The hospital called 3 hours ago to say my mother had died at 11:40pm EDT. This was rather shocking (to say the least), because I wasn’t there. I was preparing for the trip, but her condition deteriorated so suddenly. And she died alone.

I can’t express much of anything now. This wasn’t supposed to be the grief to plumb for [my current grief writing group…] it was supposed to be my spouse (21 months ago) and my cat (2 months).

It’s so loud, and it’s July 4^th. After calling a few people, I don’t know what else to do. What else is there to do except go out into the cold San Francisco night in a black hoodie to watch 15-20 separate displays of fireworks. I’m not sure how I feel about this yet. Is it a spectacular way to say goodbye and honor her passing? It’s certainly surreal, and it adds to my disbelief. But I walk up a steep hill and stand in the middle of the street anyway. I finally start crying at an overwhelming display of bright light and noise.

It’s so loud, and it smells like gunpowder.

NOTE (piece above written using this part of a writing prompt): “Today’s prompt focuses on the senses, particularly how certain smells connect with your grief.”

 

Prequel

July 3 at 7:39 AM

My elderly mother is dying. She lives on the opposite coast and is the definition of a patient at high-risk for coronavironus infection. She has lung disease (COPD), two types of cancer, and is on oxygen 24/7. Her neighbor wasn’t able to reach her on Wednesday and called 911. She refused to leave her home. She desperately needs medical attention and professional care. Yesterday the neighbor convinced her to go to the hospital. Now, as the only child, I have to plan for her death. She won’t recover, she won’t ever live on her own despite her stubborn and obnoxious and admirable efforts to do so. It’s heartbreaking, and it’s too much for me to handle.

Neuron Ink

Sandra¹ already had seven tattoos. Most of them were small. Lining her right outer thigh were six separate designs, the largest of which was about three inches in diameter. The seventh tattoo was more conspicuous, a First Nations bird on her right forearm, just above the wrist.

On her birthday in 2007, she wanted to get a new and unique neuron tattoo. Most of us are familiar with rods and cones, the classic retinal photoreceptors that transduce light into electrical impulses. Lesser known among the neurons in the retina are intrinsically photosensitive retinal ganglion cells (ipRGCs). These neurons express melanopsin, a light-sensitive protein involved in the production of melatonin, a hormone that regulates circadian rhythms (including the sleep-wake cycle). The ipRGCs project directly to the suprachiasmatic nucleus in the hypothalamus, the brain’s circadian pacemaker.

Sandra had a deep interest in circadian rhythms because of their significance in bipolar disorder (she had bipolar I disorder). Disruptions of the sleep-wake cycle are a prominent aspect of this condition. Before the existence of the f.lux® program that limits the amount of blue light emanating from your screen at night, before the studies demonstrating that electronic devices can suppress the production of melatonin (thereby altering your circadian clock), Sandra went out and bought yellow light bulbs for the lamps in the house. “But I can’t read in this dim yellow light!” I complained.

In preparation for the ipRGC tattoo session, I sent her several articles illustrating these rare neurons, which comprise only 5% of all ganglion cells in the retina. She chose an illustration from a 2005 Nature paper.

Modified from Fig 3a (Dacey et al., 2005).  (Left) Drawing of a giant ipRGC cell (arrow indicates axon). The cell was recorded from the in vitro retina (“retina in a dish”) and then filled with a substance to visualize it.  (Right) Electrical responses (voltage traces) of this cell to a specialized light stimulus.

Most stereotypical neurons have a long axon, but this giant ipRGC does not (see arrow in Fig. 3a). Sandra wanted the tattoo to look like a standard neuron (and she enjoyed the idea of an axon running down her arm), so she had the artist embellish the drawing with an extra branch. She also had horrid arachnophobia, and did not want anyone to mistake this work of art for a spiderweb.

The results were quite impressive.

Then,

In 2007, [science writer] Carl Zimmer posed a question on his blog: are scientists hiding tattoos of their science? It turned out that many of them were, and they were willing to share their ink with him and the world.

Hundreds of people sent in their science tattoos. The original chronicle of this collection is nearly impossible to reconstruct from Zimmer’s many blogs, hosted by ScienceBlogs, Discover, National Geographic, Typepad, etc. Fortunately, the best of these tattoos were collected in a book called Science Ink: Tattoos of the Science Obsessed. Sandra was invited to submit a photo of her Neuron Ink.

Photo by Maurice Li.

In an entry called “Ganglion Cell”, Zimmer eloquently wrote:

It is sensitive to blue light, but it does not paint the blue of a bluebird. Instead, it sends its color elsewhere: to neurons that control the size of the pupil, to regions of the brain that set the body’s clock, to other regions that release hormones that make us sleepy and wakeful.

Sandra got two more tattoos after that, both in January 2016. One of these was the cover art from her book, Reliant.

Her very last tattoo was a daffodil to represent being a cancer survivor.

About this, she said:

Daffodils are the official flower of the Canadian Cancer Society and daffodil pins are sold each spring to raise funds. They’re the first flowers of the year, pushing through winter decay to burst forth with hope and life. A daffodil is a good symbol.

At the two year post-treatment milestone, the oncologist told her that the chance of recurrence was less than 5%. There was reason for optimism, because the doctors said she was cured. But six months later, after experiencing right upper quadrant pain, Sandra was diagnosed with stage 4 cancer. There was an 8 cm tumour in her liver that was “missed” because her ten prior scans didn’t bother to screen the most likely sites of metastasis.

The irony of her final tattoo was not lost on me.

On her birthday this year, I decided to get the same ipRGC tattoo (sans axon). It was my first; I did not have any tattoos before this.

I wish she was there with me to see it.

Footnote

¹ Sandra Dawson, my late wife. See There Is a Giant Hole Where My Heart Used To Be.

Involuntary Visual Imagery

I’ve become interested in the topic of involuntary visual imagery because of my own recent experiences. After my partner died of cancer, I’ve had periodic episodes of involuntary visual imagery (akin to flashbacks) of traumatic events leading up to her death. I’ve also had images of places appear for no apparent reason. The places themselves are neutral, but in the context of loss they become fraught with distress. {As an aside, I have vivid auditory imagery of popular songs which can play in my head with high fidelity.}

Today I was reviewing a paper, with a song playing in my mind in the background (Save a Prayer by Duran Duran, which I had heard a few days before). It’s a sad song, but I was managing the workload just fine. Then an image of driving onto the on-ramp of the Second Narrows Bridge appeared in my head and totally derailed me¹. The view wasn’t from the car, like I was driving, but more from above (a bird’s eye view), like a detached observer fixed in mid-air. It reminded me of all the travel to a city I may not see again (especially of all the trips back and forth during the last months).

Last week, I was writing a report at work, and suddenly a vivid image of standing across the street from the BC Cancer Agency appeared. My partner had 6 weeks of radiation there in 2015. This was even more upsetting, for obvious reasons.²

Derealization

This isn’t a new phenomenon for me, although the current level of distress is novel. I have very strong memories of significant places, and sometimes an image of a specific location from my past springs to mind for no apparent reason. These visual images can be accompanied by a sense of derealization, a subjective alteration in my perception of the outside world. Revisiting these old places from childhood was disorienting:

I went on this trip once, back to my hometown after a long absence. Have you ever felt that your surroundings seem odd and distant, and that you’re completely detached from them? That the things and places around you aren’t real? This can happen to me, on occasion.

It did on this trip, perhaps because I’ve dreamed about those places so many times that the real places and the dream places are blurred in memory.

Visual imagery can be an elusive phenomenon to study scientifically, but there’s a solid literature that I’ll eventually review. A recent fMRI experiment examined the neural correlates of visual imagery vividnesss, and the authors reviewed 11 previous papers on the topic (Fulford et al., 2018). An early study found that visual imagery ability may be associated with flashbacks in post-traumatic stress disorder (Bryant & Harvey, 1996). I recently speculated that individuals with both aphantasia (the inability to form mental images) and PTSD must not have visual flashbacks.

Seven years ago, I wrote a grant that was mercilessly rejected (one of many); the only section of the proposal that the reviewers liked was on imagery. So I’ll retrieve that file, dust off the virtual cobwebs, and perhaps look at the approach with a fresh set of eyes (so to speak). A bleary set of eyes is more a more apt description…

 

ADDENDUM Jan 17 2019 (2:22AM): I didn’t mention that the image below came to mind while I was writing this post. These sorts of situations, when you’re preoccupied with doing something else like reading and writing, aren’t the most conducive conditions to voluntarily imagining a visual scene or recalling a visual autobiographical memory. And yet there it was, Phibbs Exchange, appearing without warning or conscious thought.

Question for the readers: Do any of you experience involuntary visual imagery, whether confined to visual images alone or incorporating other sensory modalities (e.g., hearing, smell, touch)?

 

Footnotes

¹ We were in a long-distance relationship that involved travel between Vancouver and California. I’ve taken great pains to find images on Google Maps that are the closest to those conjured up by my mind.

² She was told she was “cured” several months after that, which clearly was not the case. Imaging the liver in all those subsequent CT/MRI screenings was not part of their “protocol” (despite suspicious early results, and despite the fact that the liver is the most likely site of metastasis). So you can see why imagery of staring at that building was quite upsetting.

References

Bryant RA, Harvey AG. (1996). Visual imagery in posttraumatic stress disorder. J Trauma Stress. 9(3):613-9.

Fulford J, Milton F, Salas D, Smith A, Simler A, Winlove C, Zeman A. (2018). The neural correlates of visual imagery vividness–An fMRI study and literature review. Cortex 105:26-40.

WATCH

How to Reconstruct Your Life After a Major Loss

I titled this post as if this is something I’m doing (I’m not). Or that I know how to address in a didactic way (I don’t). Some of you may know that my partner died recently. “It hasn’t been long,” you say, a little over two months. And that’s true. “Go easy on yourself.”

I returned to work three weeks later. Was that too early? Within the first two days I was faced with e-mails and deadlines and meetings that were overwhelming, and the assumption was that I was operating at normal capacity. Far from it. I couldn’t (and still can’t) handle stress very well. I’d go home and cry, which would only worsen my grief.

Or maybe it wasn’t too early. Having structure and routine and simple tasks and a low stress environment might be a good thing. Although I’m finding it nearly impossible to keep up with the workload, I have accomplished a surprising amount. “Your resilience is inspiring,” a kind and supportive co-worker said, but they don’t see me when my grief is intolerable, because I stay home those days.

It has been exceptionally hard to write, and this has been true for over a year. My partner was diagnosed with stage 4 cancer on October 4, 2017 and died on October 2, 2018. “It was a long goodbye,” said one friend. Until it wasn’t.

My partner’s decline was precipitous and unexpected, or at least not predicted by any medical professional at the hospice. One nurse even said it was a gradual decline, which was clearly not the case, according to close observers. You see, a major issue was that we didn’t live in the same city. Although I traveled there five times in the last two months, I ended up plagued with guilt because we were supposed to have weeks together on my last visit. And we didn’t. Nothing went as planned (or at least, according to the doctors’ vague prognostic indicators…).

The National Institute of Nursing Research (NINR), part of NIH, has issued an important funding opportunity on End-of-Life and Palliative Care Approaches to Advanced Signs and Symptoms (PAR-19-045). I’ll write about that in another post. I know, I know, “out of scope” for this blog.

Grief make life seem pointless. Why go on? Why care about that grant I should be writing? It’s meaningless. When you lose everything, nothing else matters.

Celebration of Trauma

“here’s the plan: don’t go out of your backyard”

 

Why do people memorialize individual grief and collective tragedy? A father’s death, the national trauma of 9/11, your anniversary with an ex, an unfortunate medical diagnosis, the date of a breakup or a betrayal. 

tempting to finish this disaster under midnight sun
hope, gin

Gin_128.mp3

so you’re not lucky
you look a little thin
burdened

your courage wasted time
your courage and mine

lay down your arms
you were plenty strong

i’ve heard enough of your howling
say you succumb
are you completely numb?

your gentle aftershock shock
your fragile aftershock shock

-Kristin Hersh, Gin — https://www.kristinhersh.com/gin/

The Journal of Traumatic Stress has a special 10 year issue on “9/11 trauma studies”:

Special Section: The September 11, 2001 Terrorist Attacks: Ten Years After

1. Media use by children and adolescents from New York City 6 months after the WTC attack
2. Shared traumatic stress and the long-term impact of 9/11 on Manhattan clinicians
3. Predictors of the impact of the September 11th terrorist attacks on victims of intimate partner violence
4.  PTSD and alcohol use after the World Trade Center attacks: A longitudinal study
5.  Adolescent exposure to the World Trade Center attacks, PTSD symptomatology, and suicidal ideation
6. Alterations in affective processing of attack images following September 11, 2001

Editorial by Daniel S. Weiss

The September 11, 2001 terrorist attacks: Ten years after 

This issue of the Journal of Traumatic Stress contains a special section on the consequences of the terrorist attacks on the World Trade Center (WTC) in New York City and the Pentagon in Washington, DC that occurred on Tuesday, September 11, 2001 (9/11). It is a truism to note that this man-made terrorist disaster fundamentally, and permanently, altered the world view of the citizens of the United States, at least those who were old enough to appreciate its meaning. For the latter, however, their world view has always included the reality of the collapsing WTC towers and its horrible aftermath. It is also fair to say that the world view of citizens of many other countries around the world was also fundamentally and permanently altered. Victims of 9/11 came from over 70 countries. As well , 9/11 propelled emergency services workers (e.g., police, firefighters, and search and rescue personnel) and the role they play in disasters into the forefront of associations with 9/11. The 9/11 attacks also increased public awareness of the psychological processes that are required to adapt to and recover from exposure to traumatic stress (e.g., Weiss, 1993) and that such processes can be, blocked, derailed, or overwhelmed.

The first article published in the Journal of Traumatic Stress that mentions the WTC appeared in the February issue of Volume 15, which was published in 2002 (Koplewicz, Vogel, & Gallagher); ironically it was a study of the impact on children and parents of the 1993 bombing of the WTC, gathering data 3 and 9 months following exposure. The findings of this study were prescient for what was to follow involving the WTC only 8 years later. Exposed children reported symptoms of posttraumatic stress disorder (PTSD) and disaster-related fears; their parents reported their own symptoms of PTSD. The children did not report a decrease in symptoms at 9 months, although their parents did. The initial distress of the children was predictive of the parents’ status at 9 months.

The first paper about 9/11 published in JTS appeared 21 months after the attacks themselves (Boscarino, Galea, Ahern, Resnick, & Vlahov, 2003). Since then, there have 27 other papers in JTS describing the etiology, prevention, risk or protective factors, epidemiology, course, treatment, and recovery from exposure to 9/11, not including those in the special section. The scientific literature on 9/11 is large. As of June 2011, the PILOTS (Published International Literature on Traumatic Stress) database of the National Center for PTSD lists 518 peer-reviewed entries, and 788 of all types. The earliest are reviews, case studies, editorials, and public service and health presentations (e.g., Stephenson, 2001). It is not until the beginning of 2002 that empirical papers appeared (e.g., Galea et al., 2002).

The articles in the special section build on that legacy, and will be part of a major expansion of the 9/11 literature as many other journals will be publishing special sections or issues commemorating the 10th anniversary of 9/11. It will be of interest to observe how large that contribution will be. The content in the special section is diverse, comprising among others, the impact of potential genetic vulnerability (Holman, Lucas-Thompson, & Lu, this issue), longitudinal findings for disaster workers (Cukor et al., this issue), suicidal ideation in children (Chemtob, Madan, Berger, & Abramovitz, this issue), and exploration of trauma response using evoked potentials (Tso, Chiu, King-Casas, & Deldin, this issue).

It would be a failure of compassion and empathy not to take note of the impact that the 10th anniversary of 9/11 will almost certainly have on the families, friends, coworkers, and acquaintances of those whose lives were lost or altered by injury or illness as a consequence of exposure to the attacks. Though it is well established that acute responses ebb over time, it is also well established that anniversaries are times when the pain of loss is more sensitive. One of the most well-established findings in the PTSD literature is the positive role of social support (e.g., Ozer, Best, Lipsey, & Weiss, 2003). As we consider what we have learned from the study of the consequences of 9/11, we might well consider providing support to those who could benefit from it.