Telling Our Stories, Healing Our Hearts BIAMA Keynote Address March 26, 2015 I recently read Viktor Frankl s book Man s Search for Meaning. For those of you who don t know Viktor Frankl was a neurologist and psychiatrist and also a Holocaust survivor. He wrote this book in 9 days after being released from the concentration camps. He came to believe while he was in the camps, that the people who survived were the ones who were able to make goals. To see some purpose for their lives. To see some meaning in their lives, even take some meaning from their suffering. He came to believe that the will to live was fed by purpose. He believed that life is not primarily a quest for pleasure or power, but a search for meaning. In his book, he quotes the philosopher Nietzsche who said, He who has a why to live for can bear almost any how. This was the most powerful book I have read in a long time and I found myself thinking about it a lot as I prepared for this talk. I thought a lot about how we cannot control many of the curves life throws us. But we can control how we respond to them. And in doing that, find our meaning.
So I ve spoken here before and so some of you may know my story and how my life has been touched by brain injury. But I ll tell you briefly what happened. And then we ll get back to Viktor Frankl. It happened more than ten years ago now. My son Neil was 17 at the time. He was walking his girlfriend Trista home after dinner and a study date at my house when he was hit by a drunk driver in a hit-and-run car accident. We didn t know at first the extent of Neil s brain injuries because his bodily injuries were so much more obvious. His leg was broken in several places and would require more than one operation to heal properly. But because he was initially unconscious at the scene of the accident, they did end up doing a CAT scan of Neil s brain. That s when they saw the fractured skull, the subdural hemorrhages, the subarachnoid bleeds, the frontal contusions. Neil s brain was bleeding and we were suddenly being transferred to an ICU in Boston. While we were waiting to be transferred, Neil went from sleeping quietly to being extremely agitated. He was confused. He thought he was in a gym. He was yelling at the nursing staff. He was trying to take his clothes off. His behaviors were
frightening, so unlike my son. I have since come to learn that they were a manifestation of something called temporal lobe agitation and it happens to a lot of brain injured patients. But at the time, it was very very frightening. Before we left for Boston, I slipped into the cubicle next door where Neil s girlfriend Trista was being cared for. I could tell right away that her injuries were worse than Neil s. She was intubated. She was surrounded by at least a half dozen medical personnel. I stepped closer and saw that her pupils were fixed and dilated. I knew at that moment that she was not going to survive. That I would never see her again. She had suffered a massive brain injury from which she would not recover. Her parents took her off life support the next day. When we got to Boston they admitted Neil to the intensive care unit where they repeated his CAT scans to see if his brain bleed was expanding and if he would need surgery. Luckily, the bleeding was stable. He would not need surgery. They would simply let his body absorb the extra blood on its own. They followed his scans over the next several days. They remained stable. They moved him from intensive care to a step-down unit. They started physical therapy after they surgically repaired his broken leg.
So that was over ten years ago. Neil certainly struggled. He took anti-epileptic medications initially to prevent seizures. He suffered from memory loss which hampered his ability to do school work. Before his TBI, he got A s without really trying. He got a perfect 800 on his math SATS. Afterward, it took great efforts on his part and special accommodations on the part of his high school and later college for him to eke out very mediocre grades. He suffered from depression for many years, seeing many different therapists and taking multiple anti-depressants for years. This is one area where I was very naïve about Brain Injury s effects. Even as a doctor, I didn t understand initially that Neil s depression was not only because of the loss of his girlfriend and having his whole life turned upside down. But his depression was organic. That depression from brain injury is a very different animal than your garden variety reactive depression. Longer lasting. Harder to treat. Just like you, I learned a lot about brain injury that I wasn t aware of before living with it. Neil is doing well now. He s engaged. And he is in graduate school. But he still struggles daily because of his brain injury. He still experiences anxiety and sees a therapist on an as-needed basis. And again, even at the graduate school level,
he had to petition the disabilities office to be allowed longer test-taking time and a distraction-free environment. So I do want to get back to Viktor Frankl and this idea of life being primarily a quest for meaning. You can imagine that after Neil s injury, I really had all I could do to manage what was in front of me. I didn t immediately start looking for meaning in all of this, believe me. But eventually I did start to think about it in that way. And I started to write. I had no intention at the time of writing a book or getting anything published. I was simply trying to figure out what had happened to our family. But as I wrote, first in my journal, and later in published essays, I realized I was uncovering meaning in our experience. I explored all kinds of aspects of it, from my feelings about the drunk driver, to whether and how to share my experience with my patients, to what I came to view as my disenfranchised grief, being the mother whose child survived
this accident. And each aspect I wrote about became clearer to me as I wrote. The other way I have come to find meaning in my family s brain injury experience is by sharing our story. I share it with college students during Alcohol Awareness Week and high school students during prom season and to local civic groups as part of the BIA s ambassador program. Each time I told my story, I felt it was helping others to understand TBI a bit better and hopefully learn from and benefit from our experience. I was making meaning from that experience. So I eventually thought that if telling my story was so helpful and therapeutic for me, and for my audiences that I spoke to, then perhaps it could be helpful to others who had shared this TBI journey. I also thought that perhaps by hearing or reading about others experiences with TBI, perhaps people wouldn t feel so alone. Perhaps by sharing our stories we can comfort one another. Or inspire one another. So I approached Amy Newmark, the publisher of the Chicken Soup for the Soul series about writing a book about TBI. And I m very pleased and proud to be able to share with you the fruits of our efforts. Recovering from Traumatic Brain Injury: 101 Stories of Hope, Healing and Hard Work came out in June of last year. And the
Brain Injury Association of Massachusetts has generously provided each of you with a copy. I m also very excited to now be able to introduce you to four of the BIA s members whose stories were published in this collection. Kelly Butiglieri, Sandy Madden, Barbara Webster, and Helen Stewart all have stories in the collection. They are each going to read a little bit from their stories and also share with you how the writing process helped them on their journey. They re also going to share with us some feedback they ve gotten from readers of the book about how the stories there helped them in their own journeys. So up next I d like to introduce Kelly Buttiglieri who will introduce you to the other panelists.