A preening fish, a boy making waves, and other oddities of consciousness

An eclectic selection of pieces on consciousness, cognition, and brain injury

For years, I’ve been collecting articles that have fascinated (and distracted­) me–from the web, by email, and in newspapers. The ones I chose here are a mixed-bag, on a variety of subjects, and among my favorites. Enjoy!

Brain Injury and the Civil Right We Don’t Think About
Joseph J. Fins, The New York Times

“We now can anticipate that there are large numbers of people…who have the potential to communicate but are sequestered — indeed, segregated — in chronic care, isolated and abandoned by society.” (Fins, J.J.) See also:

Joseph J. Fins’ Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness
Arthur L. Caplan, Ph.D, Book review in Cerebrum

Rights Come to Mind is a wonderful book; perhaps the best book ever to emerge from the young field of neuroethics…. Like any provocative book, Fins’ work offers plenty to argue about…. I may well be wrong, but without this thoughtful, compassionate, and principled book, I would never have realized my obligation to worry about who is right.” (Caplan, A.L.)

The First Concussion Crisis: Head Injury and Evidence in Early American Football
E.M. Harrison, SM. American Journal of Public Health.

“The present Rugby game of football as played in this country is a very risky pastime, carrying nearly the same risk that a soldier [assumes] on the battle field. (1893, The New York Times)

Fish Have Feelings, Too: The Inner Lives Of Our “Underwater Cousins.”
Interview with Jonathan Balcombe by Terry Gross, NPR Fresh Air

“In his new bookBalcombe presents evidence that fish have a conscious awareness–or ‘sentience’–that allows them to experience pain, recognize individual humans and have memory.” (Gross, T.)

For the Boy Who Makes Waves
Joe Blair. The New York Times

“Can I, being alive at this time, love this boy? Can I listen to him? Can I be a good father to this boy?” (Blair, J.)

Science of Time: What makes our internal clock tick?
Melissa Healy, Los Angeles Times

The interval of time that we perceive as now, “may help explain why attention might be the most important — and most fragile — part of our internal clocks.” (Healy, M.) It is also most likely to be altered by neurological illness or brain injury.

This Is Your Brain on Silence: Contrary to popular belief, peace and quiet is all about the noise in your head
Daniel A. Gross. Nautilus

“Freedom from noise and goal-directed tasks, it appears, unites the quiet without and within, allowing our conscious workspace to do its thing, to weave ourselves into the world, to discover where we fit in. That’s the power of silence.” (Gross, D.A.)

Striking a nerve: TBI up close and personal
Maria Romanas, MedPage Today

“A physician who suffered a severe head injury as a teenager pleads for a new approach to treatment and rehabilitation.” (Gever, J., MedPage Today)

Becoming Disabled: Roughly one in five Americans live with a disability. So where is our pride movement?

Rosemarie Garland-Thomson, The New York Times

“Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.” (Garland-Thomson, R.)

Last, but not least…

I am compelled to include this book by A.R. Luria, the “most significant and fertile neuropsychologist of his time.” (Oliver Sacks, from the Foreword). Luria was a prolific scholar and author of “classical science,” but this book is something else. It is, in his words, “romantic science”–the living reality of one patient, a soldier returning from World War II with severe brain injury.

The Man with a Shattered World: The History of a Brain Wound, by A. R. Luria

“It is a remarkable document, affecting in its simplicity, its pain, its inexorable determination.”  – Time

“The product of…two remarkable men, one a world authority on the brain, the other his unfortunate brain-damaged patient…a fascinating and valuable review of the strange but precise working of the brain for both the general reader and the scientist.”  – Library Journal

“Science became poetry.”  – Oliver Sacks


At the Intersection of Seeing & Believing

The other day I was rereading my most recent blog post, Socializing, Solitude, Silence. It left me with a nagging doubt: is my self-image as a loner born out by my behavior? I really do prefer solitude to socializing, yet each month I go out of my way to attend the New York City BIANYS Chapter meeting and my local brain injury support group. For some reason or other I’m drawn to these groups despite my inclination to push away. Why the disconnect between what I feel and what I do?

That uncertainty was percolating in the back of my mind as I mulled over this as-yet-unwritten post. As I jotted down ideas, organized my thoughts, and started to write, it all began to gel. What I clearly needed was to unearth the reasons behind that disconnect and set my doubts to rest. In the process I started to explore some deep, even universal feelings.

[Why have I suddenly become so philosophical?]

I believe there is a thread that connects brain injury survivors to each other. It cannot be seen, but is felt – heart felt – when we discover each other. The strands interweave – loss of self, isolation, physical and psychic pain, and the glimpse of mortality. I know we are not special in this regard. All humankind share not one thread but many. Every single person has struggles that echo our own, and no one gets through life unscathed.

But although our challenges may seem similar to there is a difference – a moment in time. The instant brain trauma occurs one’s singular life is sundered in two: a “before” and an “after.” You’re faced with a profoundly unsettling battle between your “selves.”

Why me? Because.

Where have I gone?
To a place most people have never been.

Who am I now? You are you, but different.2017-04-01_final_image Connected by Thread

What can I do? Be patient

When will I return?
There’s no going back.

Brain injury is clearly an existential crisis. But we have to remember that the real crisis is organic, caused by a physical injury to the brain. In that respect, it is no different from any other disability, although it’s often invisible.

In the world outside our world, most people just don’t get it (except some, who do). Consensus has it that seeing is believing, which is a problem when you have an invisible injury. You may “look great” but that doesn’t mean you are “great,” or even okay. Some may think you’re a hypochondriac, lazy, or malingering. Others may tell you to “look on the bright side” (I’m know, I’m lucky. I could be dead), “stop wallowing in self-pity,” or “just get on with life.” If people can’t “see” you, they can’t believe you.

I really just want to be visible; to be seen for who I am: “great” even when I’m not, just because I’m still trying. Maybe that’s why we gather each month away from the outside world: to be seen, believed, understood. As much as they don’t get it, we do, and can accept the weird, annoying, and even funny stuff that comes along with brain injury. That validation is a breath of fresh air. It’s what keeps me showing up and eager to join in. Even though I don’t like socializing, even if I prefer solitude.

These small, self-selecting groups are like a prescription I need to refill every month. Each meeting is an antidote to the risk of believing those who don’t believe me. The more I think about it, the more I realize that there is not a disconnect between what I feel and what I do. The monthly meetings are more than just socializing. They help me stay connected to the reality of brain injury, and keep me on an even keel in the face of that reality.

Being believed, even if you’re invisible, is being seen.

PS: Who gets it? A friend I hadn’t seen for years, long before my TBI. She asked questions (good ones, although I can’t remember what). She listened, without judgment or telling me how to make it better. She still saw “me,” while asking what changed and how. “It sounds so hard,” she said, “of course I can’t really understand, I’m not living it.” But she did understand. She “got it,” just like that. Not everyone needs to see before they can believe.

Illustration (c) 2017 Max Rippon