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.

Derealization / Dying

Derealization is a subjective alteration in one’s perception or experience of the outside world. The pervasive unreality of the external environment is a key feature, along with emotional blunting. The world loses its vividness, coloring, and tone.

I’ve spent much of the last year walking around in a fog, hazy, underwater, under glass, where nothing is real. This isn’t happening.

My partner has end-stage cancer, and was transferred from Acute Care to the Palliative Care Ward about 3 weeks ago. I was standing there, just staring at her while she slept in a hospital bed, knowing where we were and who I was and yet, the scene was surreal. Detached from my real life. Like flowing curtains.

Then her psychiatrist walked in, and suddenly everything was real. I started sobbing at the horrible reality of what was happening, and what will happen.

“People speak, I’ve no reply

I’m empty inside

But for the incessant screaming

Which refuses to subside”

–Single Gun Theory, I’ve Been Dying

Less than a week later, she was transferred to hospice.

“I’ve been dying a long time

Down on my knees

There’s no way out of here

I’ve been dying a long time

Can’t seem to pick up the pieces of my life”

–Single Gun Theory, I’ve Been Dying

Single Gun Theory were an Australian band who sampled from myriad sources, including Robert Oppenheimer, Natalie Wood, spoken word samples recorded in India, Turkey, and Southeast Asia (e.g., Islamic call to prayer, recitation of the Qur’an, Indian female vocals), and The Twilight Zone.

“Twelve months ago to the moment you destroyed yourself

Much as I told you you would“

{sampled from The Silence, Season 2, Episode 25 of The Twilight Zone}

Nearly a year ago, Sandra was diagnosed with stage 4 cancer. I tried for 7 months to enroll her in a clinical trial, to no avail. I wrote about how hard that was, and what was wrong with the cancer clinical trials systems in both the US and Canada.

[That] post [was] my own personalized rant about the false promises of personalized medicine. … It [was] about oncology, for very personal reasons: misery, frustration, and grief. After seven months of research on immunotherapy clinical trials, I couldn’t find a single one in either Canada or the US that would enroll my partner with stage 4 cancer. For arbitrary reasons, for financial reasons, because it’s not the “right” kind of cancer, because the tumor’s too rare, because it’s too common, because of unlisted exclusionary criteria, because one trial will not accept the genomic testing done for another trial. Because of endless waiting and bureaucracy.

But somehow, I’ll have to go on without her. Sandra was very active in suicide prevention efforts on social media, as @unsuicide and with her Online Suicide Help wiki so there you go.

September 10 was World Suicide Prevention Day, and Dr. Erin Michalak of CREST.BD wrote a touching tribute to Sandra’s work.

Sandra Dawson’s Legacy

. . .

Most significantly, Sandra created the Unsuicide directory of online and mobile crisis supports, as well as a popular corresponding Twitter feed (@Unsuicide) with close to 25,000 followers. Her Unsuicide online supports are authentically grounded in her lived experience of bipolar disorder, but also unfailingly focused on helping people, regardless of their geography, to access credible and safe online and mobile support tools. In 2016, she was awarded the Sovereign’s Medal for Volunteers from the Governor General of Canada in acknowledgement of the impact of her work as an advocate for people facing mental health challenges and in suicide prevention.

Samuel Beckett, The Unnameable

It will be I? It will be the silence, where I am? I don’t know, I’ll never know: in the silence you don’t know.

You must go on.

I can’t go on.

I’ll go on.

#FakeBudget

This thin 62 page PDF (which includes 8 blank pages) is a poorly documented and fanciful précis of the Bannon/Trump blueprint for “deconstruction of the administrative state.”

The proposed budget would eliminate the following federal agencies:

For biomedical scientists, the most distressing section was this:

• Reduces the National Institutes of Health’s (NIH) spending relative to the 2017 annualized CR level by $5.8 billion to $25.9 billion. [NOTE: this is a 19% cut from current budget of $30.3 billion.] The Budget includes a major reorganization of NIH’s Institutes and Centers to help focus resources on the highest priority research and training activities, including: eliminating the Fogarty International Center; consolidating the Agency for Healthcare Research and Quality within NIH; and other consolidations and structural changes across NIH organizations and activities. The Budget also reduces administrative costs and rebalance Federal contributions to research funding.

This is extremely alarming (but so vague and poorly written that it’s hard to infer the exact intent here). The NIH has broad bipartisan support, so such a massive gutting is unlikely. On the other hand, Trump has said, “I hear so much about the NIH, and it’s terrible.”

The document is filled with unsupported claims:

• Eliminates $403 million in health professions and nursing training programs, which lack evidence that they significantly improve the Nation’s health workforce. [NOTE: Where is this evidence?] The Budget continues to fund health workforce activities that provide scholarships and loan repayments in exchange for service in areas of the United States where there is a shortage of health professionals.

…and meaningless hand-waving:

• Invests in mental health activities that are awarded to high-performing entities and focus on high priority areas, such as suicide prevention, serious mental illness, and children’s mental health.

The Environmental Protection Agency (EPA) would be among the hardest hit, with 3,200 fewer positions and a 31% cut in funding. This is no surprise, since deregulation is more important than clean air and drinkable water.

Those of us with a conscience don’t have to accept this sadistic budget by Bannon and co., which is designed to outrage and infuriate. Write or call your representatives NOW.

“Complaining Shrinks the Hippocampus” – the study that doesn’t exist

The “complaining is bad for your brain” trope is making the rounds again. In How Complaining Rewires Your Brain For Negativity, Dr. Travis Bradberry (“Author of #1 bestselling book, Emotional Intelligence 2.0, and president of TalentSmart, world’s leading provider of emotional intelligence”) claims:

Repeated complaining rewires your brain to make future complaining more likely. Over time, you find it’s easier to be negative than to be positive, regardless of what’s happening around you. Complaining becomes your default behavior, which changes how people perceive you.

And here’s the kicker: complaining damages other areas of your brain as well. Research from Stanford University has shown that complaining shrinks the hippocampus—an area of the brain that’s critical to problem solving and intelligent thought. Damage to the hippocampus is scary, especially when you consider that it’s one of the primary brain areas destroyed by Alzheimer’s.

What is this compelling research from Stanford? A link to an article in Fast Company, Why Complaining May Be Dangerous To Your Health (1/12/15):

A half hour of complaining every day physically damages a person’s brain, according to research from Stanford University. Whether you’re the one griping or you’re the one listening, exposure to negativity peels back neurons in the hippocampus—the part of the brain used for problem solving and cognitive function. Over time, complaining becomes a habit. If you’re surrounded by complainers, then you’re more likely become one.

The research on “peeling back neurons in the hippocampus” is a link to a non-existent article in iaap-hq.org. Pulling up the extinct page in archive.org yields this gem, Complaining Hurts Your Brain (3/27/14):

Scientific research from Stanford’s medical school revealed that exposure to 30 minutes of negativity every day (including negative news on TV) can physically damage the brain. It damages the neurons in the hippocampus, the part of the brain used for problem solving and cognitive functioning. This is significant because research also shows that in Alzheimer’s disease, the hippocampus is one of the first regions of the brain to suffer damage.

Now let’s look for a study where the participants had their brains scanned, watched 30 minutes of negative news every day for three months, then had their brains scanned again. For good measure, we should assign half of the participants to a control condition, where they are forbidden to watch negative news for three months. Then we can compare hippocampal volumes in the two groups.

You know where this is going. The peeling hippocampus study does not exist. It’s completely fictional.

Further Googling pulls up a 2012 article from the Community Corner section of the Carlsbad Patch, Stress and Negativity May Change Size and Function of the Brain:

Robert Sapolsky is a professor and researcher in the field of stress and the effect it has on health. For the past three decades Sapolsky has been studying how the mind and body handle stress. In an interview with Stanford Report, he said:

“It’s becoming clear that in the hippocampus, the part of the brain most susceptible to stress hormones, you see atrophy in people with post-traumatic stress disorder and major depression. … There’s a ton of very exciting, very contentious work as to whether stress is causing that part of the brain to atrophy, and if so, is it reversible. Or does having a small hippocampus make you more vulnerable to stress-related traumas? There’s evidence for both sides.“

Ah ha, Robert Sapolsky, a famous professor at Stanford. He’s best known for his research on the negative effects of stress in baboons, who generally do not watch TV, neither in the wild nor in captivity. Here’s a 2000 review article on Glucocorticoids and Hippocampal Atrophy in Neuropsychiatric Disorders (cited over 1,000 times):

An extensive literature stretching back decades has shown that prolonged stress or prolonged exposure to glucocorticoids—the adrenal steroids secreted during stress—can have adverse effects on the rodent hippocampus.

Yes indeed, the invasive studies that examine actual neurons in the hippocampus are in rodents.

Sapolsky continues:

More recent findings suggest a similar phenomenon in the human hippocampus associated with many neuropsychiatric disorders. This review examines the evidence for hippocampal atrophy in (1) Cushing syndrome, which is characterized by a pathologic oversecretion of glucocorticoids; (2) episodes of repeated and severe major depression, which is often associated with hypersecretion of glucocorticoids; and (3) posttraumatic stress disorder. Key questions that will be examined include whether the hippocampal atrophy arises from the neuropsychiatric disorder, or precedes and predisposes toward it…

Notice that both here and in his 2007 Stanford News quote above, he questions the direction of causality.

So where did the complaining and negative news come from? The Carlsbad Patch article ¹ also linked to Listening to Complainers Is Bad for Your Brain (8/12/12):

Do you hate it when people complain? It turns out there’s a good reason: Listening to too much complaining is bad for your brain in multiple ways, according to Trevor Blake, a serial entrepreneur and author of Three Simple Steps: A Map to Success in Business and Life. In the book, he describes how neuroscientists have learned to measure brain activity when faced with various stimuli, including a long gripe session.

“The brain works more like a muscle than we thought,” Blake says. “So if you’re pinned in a corner for too long listening to someone being negative, you’re more likely to behave that way as well.”

Even worse, being exposed to too much complaining can actually make you dumb. Research shows that exposure to 30 minutes or more of negativity–including viewing such material on TV–actually peels away neurons in the brain’s hippocampus. “That’s the part of your brain you need for problem solving,” he says. “Basically, it turns your brain to mush.”

Ah ha, so we can finally blame serial entrepreneur Trevor Blake, who made up the whole thing. Or at the very least, extrapolated wildly from studies in monkeys and rodents. From Three Simple Steps: A Map to Success in Business and Life:

[so Mr. Blake actually used the more accurate “pruning back” not “peeling back”]

What about complainers? ²

Oh no!! This blog post is increasing the rate of cell death in my hippocampus!

But think about it… reading Donald J. Trump‘s toxic and negative (and horrifying) tweets is raising our anxiety. Does complaining about them make it any worse?

 

link to HuffPo via Neuroskeptic

Complaining “damages the hippocampus” says the “world’s leading provider of emotional intelligence” https://t.co/NdGO0BoWQY I neurohate this

— Neuroskeptic (@Neuro_Skeptic) December 30, 2016

 

Footnotes

¹ The Carlsbad Patch article by Rachael Grant Dixon is actually the best of the lot.

² The unclear origins of this claim were also discussed by the skeptics at Stack Exchange.

Slogans for Liberals in the Trump Era

quote from Autocracy: Rules for Survival, by Masha Gessen.

My previous post on October 27 featured the Inflammatory Essays of Jenny Holzer (1979-1982).

REJOICE! OUR TIMES ARE INTOLERABLE

FEAR IS THE MOST ELEGANT WEAPON

THE END OF THE U.S.A.

Then the unthinkable happened. Some of these scenarios actually came true on November 8, 2016. Trump is appointing white nationalists and right wing hard-liners to key posts in his administration. Like many others, I’m still in a state of shock.

Inspired by Holzer’s Truisms (1978-1983), Canadian writer and visual artist Douglas Coupland created Slogans for the 21st Century (2011-2014).

These were featured in a show at the Vancouver Art Gallery, which I wrote about in my main blog (Welcome to Douglas Coupland’s Brain).

The recent ugly turn of events has inspired me to create Slogans for Liberals in the Trump Era, based on Coupland’s designs. Some of the slogans were made up by me, others taken from recent news stories and credited as such.

Steve Bannon is truly scary:

‘Darkness is good’

Washington (CNN). Steve Bannon has no regrets.

The ex-Breitbart executive, who serves as Trump’s chief strategist for the new administration, told The Hollywood Reporter that “darkness is good.”

“Dick Cheney. Darth Vader. Satan. That’s power. It only helps us when they (liberals) get it wrong. When they’re blind to who we are and what we’re doing,” he said in an interview published Friday, his first outside of Breitbart since the election.

quote from Silicon Valley Helped Create Trump, and That’s Bad for It, by Noam Cohen.

quote from The End of Identity Liberalism, by Mark Lilla. I do not agree and thought it was a terrible essay.

Trump doesn’t seem to like the NIH, which is very alarming to scientists:

…I can tell you, because I hear so much about the NIH, and it’s terrible.

Feel free to use this sign on social media and around the lab (along with any of the others).  Proper credit would be appreciated.

FORCE ANXIETY TO EXCRUCIATING LEVELS OR GENTLY UNDERMINE THE PUBLIC CONFIDENCE

“Fear is the most elegant weapon, your hands are never messy”

Many people are familiar with Jenny Holzer‘s Truisms (1978-1983), but fewer know about her Inflammatory Essays (1979-1982). Amid the surreal reality show that is the 2016 US Presidential election, Holzer’s words from 35 years ago ring true today.

REJOICE! OUR TIMES ARE INTOLERABLE.

[no title] 1979–82

 

[no title] 1979–82

 

MEANINGLESS PLATITUDES WILL BE PULLED FROM TONGUES AND MINDS

[no title] 1979–82

 

THE END OF THE U.S.A.

[no title] 1979–82

The Gay Fruit Fly Lab

Starring:

Janeane Garofalo as Dr. Mills, a fruit fly geneticist
Ingrid Jungermann as Ingrid, who wants a test to determine whether or not she’s gay

 

Ingrid: “Oh it’s just you in here, huh?”

Dr. Mills: “Yeah they all left for Rockefeller University.”

Ingrid: “Why’d you stay?”

Dr. Mills: “They seemed very happy and successful when they worked there, and those two things make me very nervous.”

 

 F to 7th Season 2 – Episode 8 – Nature

 

Ingrid: “I Googled you too and I know for a fact that you’re working on some serious secret gay fruit fly shit.

Dr. Mills: “A. it’s not top secret at all, and B. fruit flies aren’t people. People are crazy, right?

 

Demonstration of a Substitutional Reality System

A fascinating post by Mo Costandi summarizes a recent open access article by a group of Japanese researchers (Suzuki et al., 2012):

Inception helmet creates alternative reality

Substitutional Reality system could be used to study cognitive dysfunction in psychiatric patients
. . .

Most of us distinguish between real and imagined events using unconscious processes to monitor the accuracy of our experiences. But these processes can break down in some psychiatric conditions. Patients with schizophrenia, for example, can experience auditory and visual hallucinations that they believe are real, while some brain damaged and delusional patients live in a world of perpetual false memories. Japanese researchers have developed an “Inception helmet” that manipulates reality to simulate such experiences, and could be used to study cognitive dysfunction in psychiatric disorders.

 

The video below was included as Supplementary Material with the Scientific Reports open access article (Suzuki et al., 2012). It shows how the system manipulates the wearer’s reality by seamlessly switching between live and recorded scenes.

Demonstration movie of the SR system. The upper left panel shows the image stream
presented on the HMD screen. This is the subjective view watched by the participant.
Live scenes are bordered with orange and recorded scenes with green. Neither the
border nor the “live” caption was visible to the participant. The upper right panel
shows an objective view of the participant’s actual environment. The lower panel
indicates a conversation between an experimenter (captioned in white) and
participant (captioned in blue).

The movie began with a live scene but switched to a recorded scene at 00:34 (Normal
Question scene). The participant did not notice the switch. During the Normal
Question scene the participant carried on a natural conversation without doubting the
reality of the situation, although in actuality, the experimenter was not in front of him.
At 1:32, the Doppelgänger scene began. In this condition, the participant did not
initially notice the substitution, but became aware of it at 1:40 when he saw his own
image (Doppelgänger). After the details of the SR system were explained, the Fake
Live scene began at 2:07. He could not detect the scene is a recorded one.

After the experience of these scenes, some participants were confused about which
scenes were real (see episode after 2:45). They were less confident in discriminating
whether they were experiencing a recording or actual reality, even when they were
genuinely interacting with the experimenter.

Reference

Keisuke Suzuki, Sohei Wakisaka and Naotaka Fujii (2012). Substitutional Reality System: A Novel Experimental Platform for Experiencing Alternative Reality. Scientific Reports, 2: 459. DOI: 10.1038/srep00459

Americanitis

Americanitis Elixir, a tonic containing glycophosphates for the nervous exhaustion reportedly suffered by 20th century urban Americans.