When I woke from a twelve-day coma less than three years ago, with a devastating diagnosis and without the ability to articulate and express coherent thoughts, the last thing going through the minds of my mother and I were that I would be delivering a keynote speech on the successes and perspectives of a traumatic brain injury survivor. Since finding clarity after my fall, I have wanted to make a positive impact on the lives of other survivors and to bring about positive change to the standard model of neurorehabilitation. I cannot think of a more appropriate group of practitioners and therapists to speak to in order to initiate that feat than the Neuro-Optometric Rehabilitation Association (NORA).

Last Thursday, my mother and I found ourselves on a plane to North Carolina to fulfill a dream that was previously unfathomable. Perhaps this was the beginning of how my mother and I could make a difference? This may be my opportunity to bring our knowledge and experience as a TBI survivor to an audience of medical practitioners, students, and physical, occupational, speech, and vision therapists. How was I really to cram the past three years into an hour and a half presentation while still making it meaningful and educational for doctors?

“What are you going to do to make a living? How are you going to pay your rent?” My mother had other thoughts on the plane ride over. “It’s hard to hear you express worry” I replied. Here we were, after I had written over sixty-thousand words in a blog that was helping others, launched a successful Kickstarter campaign which introduced my story to hundreds of thousands of people around the globe, spent countless hours privately studying and assisting other survivors, and now, finally, a chance at improving the model of neurorehabilitation by bringing our story and my research and perspectives to an entire conference full of professionals dedicated to neurorehabilitation. “After everything, it feels like you still don’t have confidence in me. I just… I just don’t know how to impress you!”

My mother is amazing. If you know her, have been keeping up with my blog, or have read her recent interview with Robert Nurisio, you know just how difficult and pivotal her role has been in the last three years of my life. As I shared during my speech, and have expressed many times before, I owe her my life; not only for bringing me into this world, but for going above and beyond in assisting and supporting my climb out of the premature grave that I literally fell into.

 

I know her genius, which I may not acknowledge enough, is not in her recognition of my accomplishments and the hard work we have done together (she rarely acknowledges either), but in her constant push for improvement. We share this drive. She does not only want me to survive my injuries, she is relentless in her pursuit of giving me a real opportunity to live a meaningful life. She hopes that I am able to help others, and in doing so, that I will be able to thrive. But she’s a mother, and she worries… I don’t think she can help it, and I don’t blame her. Who could after what she has been through.

All of a sudden, the wheels touch down in Raleigh, North Carolina. We make contact with our hotel, board the shuttle, and settle in for the night.

The following night, my good friend and vision therapist, Robert Nurisio arrived. Robert has not only shown me incredible support over the years, but he actively blogs about my recovery story and has been instrumental in bringing my story to others. He is responsible for getting my story out to the NORA community, making this all possible. You can see his active blog at VT Works.

We attended a conference titled, “Eye Spirals,” headed by June Chiang, who often works with traumatic brain injury patients. From Dr. Chiang, we learned about the connection of vision and posture. At the conference, I met with my optometrist Dr. Denise Smith, who practiced a technique on me to encourage good posture through footwork. How many optometrists do you know that will rub your feet?!

By an unbelievable coincidence, Tristen Waters, an old friend who I had grown up with and not seen in years, happened to be recording this event for Backcountry Recording. Though speaker support was not part of his job, Tristen was extremely helpful in making sure the technical aspects of my speech were good to go. Of course, technical difficulties arose, and I found myself in need of a connector that neither of us had. One of my best friends growing up, Scott Hendry, now lived in NC and was going to attend my speech the next day. I made a call to him that night, to see if he could possibly try to find the adapter that I needed the next morning. Scott is one of the most capable people that I know, so when he told me he would see what he could do, I had complete faith in him to do whatever was in his power.

Suddenly, it was Saturday morning. I hadn’t been finding the most sleep throughout the trip, but on this particular morning, the morning of my speech, I found myself still preoccupied with technical difficulties. Would I be able to use the software I had prepared and practiced on for months, or would I have to make the transfer and present on an unfamiliar platform? Saving the day as usual, Scott arrived at the last minute with the piece we were looking for. I would have been happy to see him either way, but I was especially happy to see him with connector in hand!

9:45 AM and it’s almost time for me to present. Hundreds of optometrists, therapists, and students fill the room.

I take a seat in the front by the podium next to my mother, my friend Scott, and my optometrist, Dr. Denise Smith. “Are you nervous?” Denise asked. “Surprisingly, no” I said. “I feel like I’m doing exactly what I’m supposed to be.” Throughout the trip, I’ve reflected on the fact that much of my life has surrounded musical performance. Traveling and playing in front of an audience is something that I’ve not only come to really enjoy, but that I’ve always felt made me feel even more on my game.

“Are you nervous?” Denise asked. “Surprisingly, no” I said. “I feel like I’m doing exactly what I’m supposed to be.”

Dr. Curtis Baxstrom took the podium and began to introduce me to the audience. It was a joy to see him in person. He had been unbelievably helpful, understanding, and supportive throughout the process of preparing for the event. He referenced my blog, my work with other survivors, and my upcoming book. Hearing Curt talk about my traumatic brain injury in 2011, and all of the work I have been doing since, I was brought face-to-face with the reality of this moment. “Okay,” I whispered to Denise, “I’m a little nervous.”

I was invited to the podium to begin my speech. A few technical kinks, a deep breath, a huge smile, and I was overcome by a NORA audience that was warm, receptive, and involved… at that moment, there was nowhere in the world I would rather be.

Right away, I wanted to talk about neurorehabilitation and my perspective on potential ways we could improve the current model. But first, I knew that the audience would need to hear some of the details of my brain injury and recovery story to appreciate my perspectives. I acknowledged that even if I were to take the full two hours relaying my story, I still could not accurately convey the full intensity of the experience.

Because I was speaking to mostly optometrists and vision therapists, I then focused on my vision difficulties, specifically the partial paralysis of my fourth cranial nerve, and how this affects my vision. I then expanded to talk about how the integration of different therapies, including nutrition, not only improved my vision, but that combined practices seem to synergistically support the brain.

In order to illustrate certain points about brain plasticity, I was able to use analogies that I have used before in my writing: I likened making neuronal connections like “Building a Bridge,” and how both ‘supplies and work’ are necessary. I talked about the gut/brain axis (Food for Thought) and how I could do an entire presentation on it. I presented my perspectives on human nutrition (Biology, Evolution, and the Brain), and proposed ideas of how we can learn and teach others about these topics.

As I began to close my speech, I referenced a saying I’ve heard throughout my recovery in order to underscore the unique quality of each brain and its corresponding injury: “If you’ve seen one brain injury, you’ve seen ONE brain injury.” I had planned an entire segment about the history of brain plasticity, but I realized that the real experts on brain plasticity are good students, teachers, athletes, musicians, or anyone who understands how they most effectively learn or how to most effectively teach.

My final message was that therapy works synergistically. The result of therapies done together, in culmination with brain-building nutrition, seems to make so much more of an impact than therapies done by themselves. Because of this, I encouraged therapists to work together in order to be more effective. Encouraging therapists to learn outside of their fields, I explained how the practice of one therapy strengthens more than one pathway in the brain. “I want to work with [the neurorehab] community to improve the current model of neurorehabilitation… Let’s go beyond living with brain injury… And let’s HEAL from brain injury.”

And then… the most gracious standing ovation…

For most of my adult life, I had been performing music and have been fortunate enough to play a role in so many incredible concerts, venues, and performances, but nothing compared to this moment. I felt weightless, reflecting on where my mother and I started this journey, the years of research, and the grave I dug myself out of with the assistance of loving family, friends, and medical practitioners, much like many of the those in the audience.

I invited my mother and optometrist up to the stage to participate in a brief Q&A session. Dr. Baxstrom then presented me a with a certificate, and before our celebratory dinner, I had the chance to work with Dr. Robert Sanet, O.D., FCOVD. It turns out that Dr. Sanet is a fellow brain injury survivor who also suffered his brain injury in NYC. It was surreal being able learn techniques from a brilliant man who understands brain plasticity on a personal level: in a way that it seems only someone who has recovered from a serious brain condition could relate to.

The next day, Dr. Denise Smith and I received an award to acknowledge our work in “the further advancement of the art and science of Neuro-Optometric Rehabilitation.”

 

This trip was so many things. It was amazing, inspiring, exhausting… I am so honored to have had the chance to speak to and share my perspectives on the advancement of neurorehabilitation with such an inspiring and welcoming group of professionals. I left Raleigh with so many positive memories, but the fondest of them all might be when my mother looked at me with a smile, shook her head left and right, and said, “OK, Cavin… I’m impressed.” 

 

Brain Injury, DAI, diplopia, Keynote, NORA, Vision Therapy

You can see the whole speech here: https://youtu.be/ycpP8-ZrInI