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


Heart, Hope & Possibility

June 25: Achilles NYC Hope & Possibility Four-Miler in Central Park
Seen through the eyes of Rendy Kowal and me


To me, Hope & Possibility is a rite of passage for Achilles Athletes. In that spirit, I decided to take the leap. I didn’t know if I was ready, but I was exhilarated by my decision to participate, and spread the word on Facebook:
fb photo for blog post

“I’m a first-timer! Can you believe I’m actually walking in a race? Yup – thanks to Achilles International. Supporting them to support us – the disability community. #GoAchilles”

This was Laurie’s inaugural Achilles Race, and about a week prior to the race, Laurie posted a photo of herself on Facebook. She was wearing a happy smile and her neon-yellow Achilles International shirt. The post announced her first race, ever. It celebrated the fact that she had trained as an Achilles athlete and was ready to take part in a well-publicized race. This posting helped ease her newness to racing, and showed her tenacity, as usual. 
As proud as she was for accepting this four-mile challenge, responding to her Facebook post were many, many others who sent well wishes. Some also sent donations to Achilles International.

As the day approached, though, I didn’t feel exhilaration. It was more like panic. What subway to take? What time? Will I get lost in the park? Do I need my cane? The morning of the race, after wolfing down breakfast, I went down my list: phone, ID, keys, MetroCard, sunglasses, cap. I ran through it again before I walked out the door – almost forgot my cane! Got it.

My anxiety level rose as I entered the park, peering at my map not sure where to go. I finally saw the group gathering, and my friend Tina found me. But I was quickly distracted worrying how I’d find Katie, who was going to be my guide. I saw Rendy, upbeat and ready, and Katie found me. I started to relax (or thought I did), but Rendy must have noticed what I hadn’t. She suggested I sit down. In fact I was off balance and dizzy. My vision was worse than it had been for years – the crowd a kaleidoscope of noise, color and jagged edges. Once we were told where to go I could barely take a step without help. Make no mistake about it – the thrill was gone.

It was a very warm Sunday morning at 7:30am when Laurie and I gathered with our friends and fellow Achilles athletes. We waited to be paired with Volunteer Guides from CIGNA, who would accompany and assist athletes throughout the race. Laurie said she was a little tired and decided to walk with a cane. I saw she was a bit off-balanced and nervous, like most first-time Achilles racers. It’s common to get distracted by the newness and the excitement of the race, not sleeping well the night before, and our legs a bit unsteady.

With our Guides, we arrived at the “L” corral for walkers. That’s the last corral of the racing line-up. Soon the race began. First the front-runners, then corrals from A to L following in time, ready to go. As we neared the starting line, the race announcer cheered us on: “Go Achilles!” That chant always energizes us; it’s so heart warming to hear. Laurie held onto my shoulder as I walked with my walker, beginning Hope and Possibilities.

Rendy offered her shoulder, I gripped my cane, and Katie had my other side. Those strong women were my Guides. Once on the familiar road I felt a bit better, off to a good start. Katie kept one eye on me, and the other on the road, and it didn’t take long before I needed her help. I held onto her when I stumbled, strayed, and drank water. At the same time I was trying to hide my tears when we passed people cheering on the sideline, “Go Achilles!” Dark glasses and hat kept the sun out of my eyes and (I hoped) hid my sinking heart.

Steadily strolling, we approached and conquered the high and tough “Panther Hill.” At the first Fluid Station we refreshed with cups of water. Laurie was keeping up very well. She paced herself according to how unbalanced her steps were, while walking with or without a cane. “Mile One,” is the first “mile stone” for all novice racers. Some Achilles Athletes and friends took selfies, immortalizing the moment. At mile two and three, we picked up our pace.

Yet, feeling tired, unwell, and unsteady most of the race, Laurie endured. And, I saw her do this. I saw, as she began to feel weakened and looking a little pale. She was less her happy cheerful self. I heard her quietness as she went into her “reserves,” her deep, deep fortitude. She seemed to feel and show that she was not going to stop walking.

By the time we were closing in on the 3rd mile marker I was seriously fading. More water. Gripping Katie’s shoulder with one hand, cane in the other, and knowing that Rendy, her guide, 
and our friends Silvina, and Carol were never far away. They hung back when I fell behind, Katie gently corrected me when I strayed off track, guided me to a bench when I needed to rest, and brought me water from every station along the way.

The moment we passed the three-mile mark, my brain shut down. I withdrew – silent and deaf to my surroundings. It was as much as I could do to stay upright. I felt neither hope nor possibility and didn’t care. Utterly lost well before the cheers grew louder and we approached the finish line. More water? Nodding yes. Yes.

Nearing the end of the course, at the West 72 Street crossway, we came to the turn in the course that led to the 68th Street finish line. Laurie had slowed her pace. She was pacing herself according to the physical strength she had left that would match the guiding strength she had in her heart.
A few yards from the Finish Line, Laurie’s physical strength was waning even more. She asked if she could hold onto my shoulder. As we approached the end of the race, there were louder cheers and some photographers lining both sides of road. They were waving, clapping and cheering “Go Achilles! You Got This!”

We were among a crowd of final finishers as we crossed the finish line. From under her sunglasses, Laurie’s tears rolled down her cheeks, and I was trying to hold back tears and smile for the cameras.

I wept to get the medal I didn’t want, and at the bravos for finishing what I hadn’t wanted to start. All around us “Go Achilles!” I forced the semblance of a smile. Confused, emptied out, and unable to see my personal victory, I wanted to get away, curl up in a ball, alone.
Hope + Possibility finish line wJackie-me-Rendy-Sylvina-REndys guide

Four walkers
 smiling; the fifth, grim.
’s me. On the left is Katie, still looking out for me,
and then Rendy, never far from my side.

This was the most exciting and exhilarating experience I have ever been privileged to be a part of. It was more than an honor to be at Laurie’s side when the Hope & Possibilities Medal was placed around her neck, and hanging close to her heart.

A few days later, I spread the word on Facebook:

“The proof is in the pudding! I completed Hope & Possibility and got a medal just for crossing the finish line! I owe a debt of gratitude to those special people who walked by my side and kept me going.”

It took time before I made sense of that day, before I understood that I’d been weak even though I was determined to succeed. But I also realized that in the eyes of my guides, my determination was my success. These are women who have been through the mill and come out the other end, who have learned that strength is not the same as character. I was able to walk the full course because they cared enough to notice when I stumbled, to consider my vulnerabilities, respond with empathy, and patiently stick with me.

They looked after me. My friends.

It was eye opening, a joy. Before brain injury, I don’t think I ever had friends who looked after me. Why would they? I seemed to have all the answers, knew my mind, and was strong, independent. As if there was a sign around my neck, “Help Not Wanted.” I could look after myself.

But it’s such a relief to have someone offer their shoulder just when you need it. Suggest you sit down when they see you are wobbly; know what to watch for and how to help – selflessly. What a gift.

In the end, I suppose the race really was one of heart, hope, and possibility, even though it didn’t feel that way at the time. #GoAchilles!

— Laurie