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.

 

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Lady Gaga on Trauma

“What I have seen on the news with this debate of Kavanaugh versus Dr. Ford, it’s one of the most upsetting things I have ever witnessed.”

Lady Gaga the Neuroscientist schools us on common symptoms observed in many sexual assault survivors: avoidance and hyperarousal.

 

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.

Field: “Brain Optimization” for the Wealthy and Gullible

An article in New Beauty magazine alerted me to the latest brain wellness scam NYC’s Hottest Club Is Selling ‘Designer Brains’:

Imagine the best moments of your life. … Then imagine you could wake up and feel that way every morning. According to the founders of Field, a center devoted to “brain optimization” that will open in New York City this winter, it only takes 19 electrodes and some neurological tweaks to get there.

With a combination of neurotechnology and new age philosophy, Field’s founders describe brain optimization as the new frontier of wellness. Devon White, a performance consultant, expert in human behavior and one of the team’s four founding partners, compares neurological treatments to acupuncture.  …  “Most of us don’t have control over our brains—until now,” says White.

[NOTE: complete and utter BS]

Field has been described as a gym for the brain, a clinic/spa/laboratory hybrid and a luxury cognition center. But instead of deadlifts or massages, the space will offer transcranial magnetic stimulation (TMS).

This procedure involves placing an electromagnetic coil against the scalp to deliver magnetic pulses that alter electrical current flow. TMS is a valid brain modulation technique approved for specific medical uses, but there’s absolutely no evidence that it can make you relive the best moments of your life or improve your day-to-day cognitive function.

 

But actually, the illustration in the New Beauty article appears to be a cap for transcranial direct current stimulation (tDCS), a cheaper and easier to administer type of neuromodulation that works in a different  manner.

The Field website is a masterclass in neurogibberish…

Your experience at Field is entirely personalized. We begin by creating a comprehensive model of you at your best as well as a deep understanding of your desired goals from the Field experience. This multi-dimensional assessment of who you are is complete with psychodynamic history, autonomic data, psychometrics, performance analysis, hormone and gene panels, and a qEEG reading of your brain.

…and elitism:

Field is a private membership club dedicated to transforming the way our clients use themselves and their brains. Our innovative and personalized application of cutting edge neurotechnology will revolutionize everything you know about personal development and high performance.

. . .

Membership during our first year of operation in Manhattan is limited.

As the world leaders in this technology-augmented approach to consciousness enhancement, we are intent on ensuring all-around excellence in the culture at Field, both for our team and our members.

During our charter year, we are working exclusively with superlative individuals interested in creating positive personal and global impact. The intention of Field is to vault these already remarkable clients into new domains of power, satisfaction, performance, and Flow.

…and from New Beauty:

…Field is open to “superlative individuals” who can afford the entrance fee. In addition to the upcoming physical location in NYC, the company is planning a 10-day intensive that combines neurological treatments with networking, body work and meditation. The experience costs $25,000 and participants are vetted for more than just money. The spots will be reserved for those with generally good mental health (not bipolar, schizophrenic or suffering from major psychiatric disorders), and, as Devon describes it, “good people.” The New York space also has a membership application process, making Field feel like a SoHo House for wealthy wellness junkies.

More like wealthy wellness monkeys, willing to pay for the privilege of being experimental socialites in a beauty spa of unproven neuromod technologies.

“Atheists Are Mutants,” says paper based on Yelp, Yahoo Answers, and the Bible

A surprising new paper in the journal Evolutionary Psychological Science claims that atheism1 is underpinned by “high mutational load” as indicated by (1) poor general health, (2) autism, (3) fluctuating asymmetry (attractiveness), and (4) left-handedness (Dutton et al., 2017). This is silly for a number of reasons. Let’s start with the preposterous rationale for the study, which is actually based on Christian blogs, Yelp, Yahoo Answers, and the Bible:

There seems to be a stereotype that religious people, and especially religious women, are particularly attractive and healthy. A number of popular articles and social media pages discussing this observation can be found online (Malloy, 2017; Hewitt, 2010, p. 99) including threads beginning with questions such as “Why are Mormon girls so hot?” (Yahoo Answers, 2008) and “OMG … why are Christian woman so extremely (physically) attractive?” (Yelp, 2010).2 Several passages in the Bible seem to suggest that those who intensely fear Yahweh are more disease-resistant (Deut. 7:15) and are more physically attractive (e.g. I Samuel 16:18). Those inspired by other gods or by Satan are, in contrast, autistic (Mark 9:25) and even left-handed (Matt 25: 41). Why should the authors of these books believe this to be the case? It could, of course, be a way of idealising the virtuous, but it is not clear that all of these features were the most pertinent for that purpose.

Really??? Has anyone heard about the stereotype that “religious women are particularly attractive and healthy”? And that the New Testament says autistic individuals3 and left-handers are “Satanic”??  This is so ridiculous that I thought the paper must be a spoof, similar to the articles that appear in the The BMJ Christmas issue.4

Oh, and then there’s the title of the article:

The Mutant Says in His Heart, “There Is No God”: the Rejection of Collective Religiosity Centred Around the Worship of Moral Gods Is Associated with High Mutational Load.

It’s really hard to go any further. Professor Shane O’Mara named it a contender for the worst scientific paper of 2017.

 

Footnotes

1 …and paranormal belief…

2 The first answer on Yelp is quite amusing:

I think you lucked out….go to a heavily Christian city in middle America and the church populace will look more like peopleofwalmart.com (is that the right site?). I don’t think their looks is attributed to religion, you just happened onto a group of good-looking women. It can happen anywhere.

3 The author of the gospel of Mark must have discovered autism, then.

4 I asked the journal about this, but didn’t hear back.

 

Reference

Dutton E, Madison G, Dunkel C. (2017). The Mutant Says in His Heart,“There Is No God”: the Rejection of Collective Religiosity Centred Around the Worship of Moral Gods Is Associated with High Mutational Load. Evolutionary Psychological Science. pp. 1-12. First Online:

PCP Abuse: NIDA Research Monograph 21 (August 1978)

Step back into a time of avocado green, angel dust, and fun fonts in government documents.

From the Forward:

Phencyclidine (PCP), or “angel dust” as it is more commonly known to drug users, posed until recently a relatively modest problem. While some illicit use occurred as early as the mid ‘6Os, the drug’s initially poor street reputation seemed to make it decidedly unlikely that it would ever become popular as a drug of choice.

More recent events have made it abundantly clear that our initial optimism was poorly founded. A change in mode of use from oral ingestion to smoking or snorting, which may enable the user to better control aversive consequences of use, together with the ease with which PCP can be synthesized, have markedly changed the phencyclidine abuse picture.

In one year (from 1976 to 1977) the number who had used phencyclidine as measured by NIDA’s National Drug Use Surveys nearly doubled in the 12 to 17 year age group. Among young adults between 18 and 25, the number of PCP users increased nearly fifty percent in that same year. Although the level of use detected was still modest, there is good reason to believe that the standardized indicators of the extent of PCP use and of its adverse consequences represent significant under-estimates of the seriousness of the problem. Clinical reports have also indicated that phencyclidine use can precipitate violent acting out and seriously self-destructive behavior as well as psychotic thinking and behavior.

The full document is available here as a 337 page PDF.

PCP is a dissociative anesthetic and NMDA receptor antagonist related to ketamine, the darling of the new rapid-acting antidepressant set. A recent summary in Medical News Today noted its popularity has waned quite a bit since the 70s:

The extent of use of PCP appears to be falling. In 1979, 13 percent of high school students said they had tried PCP. By 1990, that figure had fallen to 3 percent.

Results of a National Survey on Drug Use and Health, published by Substance Abuse and Mental Health Services Administration (SAMHSA), show that, in 2015, 0.2 percent of 12- to 17- year olds had tried it at some time in their life.

 

angel dust_what everyone should know about PCP

Oglesby EW, Faber SJ, Faber SJ. (1979). Angel Dust: What Everyone Should Know About PCP. Lega-Books.

 

A selection of chapters from the NIDA monograph:

PCP has a notorious reputation for inducing psychotic and violent behavior (NIDA, 1978):

Clinical reports have also indicated that phencyclidine use can precipitate violent acting out and seriously self-destructive behavior as well as psychotic thinking and behavior.

. . .

Chronic phencyclidine use has culminated in a picture of violent and aggressive behavior, paranoia, delusional thinking, and auditory hallucinations. In most cases no known behavioral disturbance or psychiatric problems preceded the use of phencyclidine.

from PCP Commercial

 

A 2013 article in Addiction.com, however, said these claims are overblown:

But even though angel dust can cause a variety of psychotic symptoms including hallucinations, delusions, disorientation and a feeling of paranoia, a normally nonviolent person is not going to suddenly become a vicious, marauding maniac simply because he has consumed this substance. Nor is he going to gain extra strength while under its chemical spell: most people arrested for drug crimes go quietly or with minimal fuss when they are taken into custody, so when a person high on angel dust goes on the attack, it can catch everyone off guard.

 

Macabre circus or important case study or hyperbole or all of the above?

This brings me to my main interest in the topic: Aaron Hernandez. Ex-NFL football star, PCP addict, convicted murderer, suicide by hanging, and CTE brain of the month. In the New York Times, Pulitzer Prize-winning writer John Branch made the startling statement that the brain of Aaron Hernandez presented an opportunity to study a case of “pure” CTE:

What made the brain extraordinary, for the purpose of science, was not just the extent of the damage, but its singular cause. Most brains with that kind of damage have sustained a lifetime of other problems, too, from strokes to other diseases, like Alzheimer’s. Their samples are muddled, and not everything found can be connected to one particular disease.

In my main blog, I’ve been struggling to write a post that highlights the misleading nature of this claim. How much of that was Branch’s own hyperbole? Or was he merely paraphrasing the famous neuropathologists who presented their results to the media, not to peer reviewers? Is it my job to find autopsied brains from PCP abusers and suicides by hanging? Searching for the latter, by the way, will turn up some very unsavory material in forensic journals and elsewhere. At any rate, I think much of this literature glosses over any complicating elements, and neglects to mention all of the cognitively intact former football players whose brains haven’t been autopsied.

 

#FakeBudget

america first budget.png

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.

Trump with Bannon as Grim Reaper

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.