in sweet company with Margaret Wolff

Address on Traumatic Brain Injury by Margaret Wolff

Address delivered by Margaret Wolff at the American Brain Injury Foundation conference, June 13, 2003, La Costa, CA:

I am here, at Diane’s request, to tell my story – a story that has a dual genesis. The first occurred on Sept. 11, 1997 when a momentary encounter with an oncoming car left me with enough brain damage to dramatically alter the cognitive processes that previously guided my thinking. The second began sixteen months later when I decided to do the unthinkable, given the circumstances, and write a book.

I want to talk about this second genesis – this second birth – first, to begin with the end in mind, because when I talk about the details of the accident, you may notice changes in my speech pattern and my emotional comfort level, both of which reflect the injuries I sustained. I have not talked about this in public yet because it is difficult to even think about, but I decided to do so today so that you can see for yourselves the longevity of the challenge a person with a traumatic brain injury experiences.

Don’t get me wrong; I count myself among the lucky ones. The severity of my symptoms has decreased over the years. But there is residue from the accident that has not left me, that may never leave me. And it has been learning to live with this in mind that I believe is the most important thing I share with you today.

So – to the second genesis. Sixteen months after the accident, I had a full scale neuropsych work-up at the behest of my lawyer in preparation for arbitration.  To my great surprise, I discovered that a substantial part of my memory and the executive functioning capacity of my brain was – shall we say – “shot to hell”. Shortly thereafter, during a routine eye exam, I learned that I had also lost approximately 80% of my peripheral vision in the accident.

These diagnoses were both a shock and an answer to a prayer, for they gave me the appropriate lens to view certain odd behaviors I had adopted since the accident in an understandable context – not the least of which was my predilection for cupping my hands over my eyes, an unconscious effort on my part to reduce my visual field to an expanse that would not hot-wire my brain.

I also understood why I could no longer find my way around neighborhoods I’d lived in for fifteen years, why I could not process or retain visual or auditory information, why I stuttered, why observing complicated patterns on a carpet or a gentleman’s tie turned my brain to bouillabaisse. Once I had the diagnosis, the rationales I had so artfully constructed to “normalize” the reality of my current existence were divested of their effectiveness. And when that bubble burst, I was no longer able to remain entombed.

Facing the truth was exhausting. The energy I had used to sustain the idealized version of my behaviors was enormous, and I felt as if the wind had been literally taken out of my sails. I remained, at first, stagnant – adrift on a sea of despair. I had worked for fifteen years as a project development consultant for various health care and educational organizations, and as a journalist on the side. As a consultant, I was constantly setting and resetting priorities, designing protocols and best practices. Right after the accident, I hired an assistant to help me finish the projects I was working on, telling myself that my disorientation was simply because I was pushing myself too hard. But once I got the diagnosis and reality set in, I despaired for my future.

Two things kept my head above water: the first was the clinician’s pronouncement that my time for healing, for any meaningful intervention, had “peaked.” This statement initially filled me with guilt and remorse. Then it made me angry. “How dare he tell me I would never get better! He doesn’t know me! He doesn’t know what I am capable of!” Though outrage is not normally a good thing, my affront launched me out of a six week period of profound sadness and propelled me into one of the richest and most productive periods of my life.

I mention this now because I want those of you who are physicians to know the power of your words to inflict pain. There is always something that can be done to help a brain injured person find a way to live a meaningful life within the limitations of their injury or disease.

This leads me to the second thing that kept me afloat: No longer able to depend on the intellectual abilities I had relied on, I began to connect with an information resource that had always been there for me, a deeper wisdom, an intuitive knowledge beyond the logical, linear mind that I had frequently ignored. One day – though I couldn’t string a sentence together to save my soul – my Inner Voice told me to write a book, one that would eventually delve into the inner lives of fourteen famous women – women such as Academy-award winning actress Olympia Dukakis; Sister Helen Prejean, the Catholic nun who wrote Dead Man Walking; and Margaret Wheatley, one of the preeminent leadership consultants in the world today – and explore how women heal the woundedness we carry within us.

I began the process by writing a letter explaining the project to my perspective interviewees and inviting their participation. That simple 1 1/2 page letter – a letter that once would have taken me a few hours to hone – took six weeks to write. I persisted; fueled by the burgeoning joy I felt working on this project. As I compiled the interviews, something totally unexpected and quite wonderful happened: The constancy of the process of writing and editing – the repetition and focus that editing demands – became a means to re-groove neural pathways in my brain just as repeatedly taking the same shortcut through a grassy meadow leaves a tried and true footpath for others to follow.

Writing became easier as those neural pathways, those rivers of light, linked up and fused in my brain. My function slowly increased and so did my curiosity and my courage. I began to look for other ways to build these neural pathways. It was then that I learned about a technique called Brain Gym – aptly named, I think, because it activates specific areas of the brain via a systematic and progressive series of kinesthetic movements and exercises. First devised as a way to help children with learning disabilities, the technique has since proven itself effective in dealing with a multitude of neurological dysfunctions.

I began regular practice of these exercises twice daily at home, and three times a week under the expert guidance of trained Brain Gym practitioner, Denise Hornbeak. In the almost four years that I have been doing Brain Gym, I have regained 60% of my vision loss, and improved my cognitive functioning to the point where I can attend an event like this and write and deliver a speech with manageable difficulty. Somehow, I knew that if I led with my heart, my heart would save me. And that is exactly what happened.

The first edition of my book, In Sweet Company: Conversations With Extraordinary Women About Living A Spiritual Life, was released in August 2002. A second edition was released by Jossey Bass in February, 2005. At the urging of my agent, I reluctantly included bits of my own journey as it relates to the writing of this book in the book itself. It was a daring move on my part because, until that time, few people knew I had a TBI. I was afraid of what people would think. Coming out of this closet opened a whole new world – not the least of which has been the success of the book; a trip to Geneva as a delegate of the United Nations conference, The Global Peace Initiative of Women; the privilege of doing women’s retreats around the country based on the book; and the joy of speaking to individuals and at conferences such as this about my experiences with a traumatic brain injury.

Now that you know how my story ends, I want to take you back to the primogenesis of my journey – the accident itself. Today it has been five years, eight months, and two days since a woman I never saw, before or after the accident, ran a red light at an intersection in Pasadena and obliterated the right side of my car. My car spun around several times in the intersection and ricocheted into three other cars before it came to a standstill in front of an old church.

I remember two things about the impact: the deafening clash of steel against steel, and that my consciousness bifurcated: A part of me screamed bloody murder while an imperious voice inside my head said, “Who is this woman screaming, and will she pul-eese shut up!”

The police arrived on the scene immediately and the paramedics – those blessed first-responders – pried me from my car and carted me in an ambulance to the nearest hospital where I was treated like a piece of meat. I remember this vividly because it was in distinct contrast to the kindness of an anonymous policeman who came to the ER to talk with me about the accident. The sympathy on his face, the gentleness in his manner as he spoke with me, was more healing than anything done for me in the hospital that day.

In my book, Sister Helen Prejean says something about working with death row prisoners that describes what would have made a huge difference for me in those first hours: “To be present to the dignity of the forgotten, to recognize the beauty of the scarred and maimed, draws forth their goodness and self-respect in a way that nothing else can.”

It is important that those of you who are attorneys also be aware of this. Despite ample documentation to the contrary about the severity of my injury, during the arbitration the attorney for the defense based his case on the fact that the ER doc, who had seen me for a total of four minutes, did not immediately diagnose me with brain damage. Hearing him drive this point home during the arbitration was humiliating. Struggling desperately to reinvigorate a semblance of self-worth, I felt invalidated and demeaned. I understood he was doing his job. His client had clearly violated the law, but that attorney deeply violated my sense of self.

When you are in a position where you cannot substantiate the legitimacy of your own thoughts, to have others treat you with respect is powerful medicine. I know this because of the profound kindness of my neurologist, Dr. Michael Lobatz, and my attorney, Andrew Greenfield – two men who saw me when I could not see myself. Their respect and compassion made an immeasurable difference in my healing – especially when the post-traumatic stress reared and I became – and still become – ravaged by snippets of memories ignited, for example, by a car accident on the street or in a film, or if a car in the next lane passes me on the right just a little too close. In these moments, when terror leaps out at me and the world splits like a blackened abyss, it was incredibly sustaining to know that there are people who didn’t know me before the accident who could see that I was, that I am, more than a TBI.

Having brain damage has taught me three things: First, I know that despite my manifold abilities, everything can be taken from me in a flash. In a strange way, this is very comforting for it leaves me with a profound humility that actually makes it easier to live in this chaotic world. I feel no pride of invulnerability or position or accomplishment. Rather than put my store in my intellect or the roles I play, I am supported by the guidance I receive from my Inner Voice. Rather than depend on the transient nature of creation, I depend on the immutable grace of God. It has made all the difference.

Secondly, I know that healing the heart is just as important – if not more so – than healing the body. I know that passion is healing, that truth is healing, that creativity is healing, that kindness and respect are healing, and these are things medical science is just beginning to discover. I sure do wish they’d pay more attention to this.

And finally, I know that things are not always what they seem, that even something as devastating as a traumatic brain injury can be a blessing. My need to simplify my life, to pare it down to the bare essentials in order to survive, has taught me what is essential. I trusted the Unknown and was given more understanding than my brain could hold. For that I am very grateful.

Another woman in my book, Dr. Alma Flor Ada, a Fullbright scholar and the author of more than 100 books herself, helped me a great deal by something she said when I interviewed her. We were talking about how she deals with the challenges in her life, her “dark nights of the soul,” and she said, “I do not let pain change the essence of gratitude that is in my soul. I acknowledge that I have pain – I say, ‘This is sad or difficult’ – but I do not let pain alter the beauty of life, the magnificence and mystery of life, and my gratitude for the mystery.” This is something I now strive to do, and it is my wish for all of you as well.

Thank you.

In Sweet Company with Margarett Wolff