The Killer Within (2011)

(Published January 2011)  
Philip Carlo's investigative achievements are remarkable, but what wasn't known to his readers is that, while working on The Ice Man, he learned he had amyotrophic lateral sclerosis (ALS), a terminal illness that causes all of the muscles in the body to atrophy over time. Suddenly, after years of penetrating the minds of killers, Carlo found himself being pursued by the grim reaper. But rather than lying down and succumbing to the disease, Carlo continued to work, and his books are still being published, to both critical and commercial acclaim.

In The Killer Within, Carlo documents his difficult experiences with ALS and explains how he has managed to continue to write prodigiously in the face of adversity. The Killer Within is a gripping, suspenseful page turner that pulls the reader into the netherworld of Mafia bosses, Mafia hit men and serial killers, as well as the hard realities of dealing with a fatal disease.

Mr. Carlo died in November 2010:  NY Times Obit.

Living with a brain tumor

When language falls by the wayside, of what does the mind consist?

“This is about my dying: and how my life got here.” So begins Tom Lubbock’s poignant piece about what it has been like living with a brain tumor for the past two years.

In 2008 Lubbock, a British art critic and journalist, was diagnosed with glioblastoma multiforme, a malignant brain tumor. What made his condition all the more grave was that the growth developed in his left temporal lobe—the seat of language. Lubbock, who makes his living by the art of composing words on a page, was forced to face the fact that eventually he would lose his ability to write and speak.

Lubbock muses: “I won't recover, no. But I haven't been given a definite time limit. So the narrative seems unclear and my luck, in a way, is both bad and good....I recognise that I am being kept alive by my treatment. I can hope for a prolongation for a little. I believe in my life continuing, though not for very long. I don't feel physically in pain – the brain has no nerve feelings, of course – nor have I been very interested, in fact, in the science.

“At the same time, this life is unbelievable. At moments, it is terrible and outrageous. But in other ways, I accept what it brings, in its strangeness and newness. This mortality makes its own world.”

Tom Lubbock’s amazing essay can be accessed in its entirety here.

A Life Beyond Reason

Chris Gabbard, an associate professor of English at the University of North Florida, has published an essay on the evolution of his perspectives regarding his severely handicapped son, August. Professor Gabbard has much to teach us about the depth of parental commitment and how caring for a special needs child can enhance the outlook of the caretaker as well.

Gabbard writes: “To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up.

“That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.”

Professor Gabbard’s essay can be accessed in its entirety here. It will also appear in Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.

The Runaway Bunny

What do you say to a 4-year-old who has been diagnosed with a critical, perhaps terminal illness? What sort of reassurance do you offer? How far out on the limb do you go?

At that age, reassurance takes on the mantel of love. Words help, touch helps, doing an activity together helps. We work with whatever tools we have.

For young children, reading a book together may help reassure them that they do not have to go through their ordeal alone. A book is a story—nothing more, nothing less. Its category means nothing—it is only the story that holds meaning.

First published in 1942 and never out of print, “The Runaway Bunny” by Margaret Wise Brown is a tender tale which serves to reassure young children that, come what may, they will never be deserted by those steadfast significant grownups in their lives.

Making Miracles Happen (1997)

by Gregory White Smith and Steven Naifeh

From Booklist: "When you live with a brain tumor for 20 years, you learn a lot about medicine and about yourself. Smith ( and Naifeh, his twenty-two-year partner and coauthor; their Jackson Pollock [1990] won a Pulitzer Prize) learned how to keep searching until he found the right doctor and the right treatment. He also discovered the importance of the right attitude and of companionable support: be persistent, he says, and when seeing the doctor, have a companion to help in asking questions and remembering instructions. To find the best doctor for your problem, he says, ask other doctors, not their patients; search always for opinions and developing options, not a single right answer; and keep mutual respect between doctor and patient as a goal. Above all, Smith counsels, don't let a disease or an impairing condition turn you into someone different from what you have been."

This is an important book that will be a guide to anyone facing a serious illness.  Gregory White Smith is the prototypical "Akamai Patient."

The Council of Dads (2010)

My Daughters, My Illness and the Men Who Could Be Me
by Bruce Feiler

From Amazon: In 2008, bestselling author Feiler learned he had osteogenic sarcoma, a rare, life-threatening tumor in his left leg . Fearing what his absence would do to the lives of his young daughters, Feiler asked six close friends ("Men who know my voice") to help raise them. Feiler chronicles his battle with cancer, from diagnosis to recovery, as well as his sentimental but moving journey to recruit friends who can carry out his wish to teach his daughters to travel, dream, and live life to its fullest. Feiler's intimate bond with his friends makes them unusually expressive and communicative, and their own biographies lend further inspirational dimensions to the story. It's hard not to get swept along and cheer Feiler on as he fights for his life and his daughters'.

I am indebted to Linda Welsh for sending me a copy of this inspiring and important book.

I Am The Central Park Jogger

A Story of Hope and Possibility
by Trisha Meili

From Amazon: "In April of 1989, a young woman was brutally assaulted and raped while jogging in New York’s Central Park. The attack captured headlines around the world as the anonymous "Central Park Jogger" fought to recover from massive injuries that left her near death. Fourteen years later, in this first person account, Trisha Meili broke her silence to discuss the incident in her own words and reveal who she was before the attack and who she became as a result of it. Meili tells the story of a competitive and driven young executive at a finance firm whose life was destroyed, and how she ultimately rebuilt it. Passages where Meili is reunited years later with the doctors and nurses who saved her life are especially compelling, as are her accounts of testifying in court and her first run after the incident. While her candor is remarkable and certainly moving, it’s worth noting what this book does not include. Meili can provide no detail of the actual attacks (she has no memory of them), she has little to say about the racial controversy her case ignited, and she only briefly mentions the fact that, during the writing of this book, the convictions of her attackers were vacated after another man confessed to the crime. But these are not necessarily omissions; they are simply not central to Trisha Meili’s highly readable story of tragedy and, ultimately, triumph. I Am The Central Park Jogger is not just a book for New Yorkers curious to finally hear from "The Jogger"; it’s an inspirational tale of overcoming enormous obstacles and getting back on the road again. --John Moe"