Today I had the opportunity to share my Rising Voices of Narcolepsy presentation in person for the first time.
My amazing sleep specialist, Dr. Katie Sharkey, has been championing me ever since first learning that I had participated in the Rising Voices program. So when she was asked to share her lecture about Sleep with the first year students in the Brain Sciences program at Brown University, she immediately pitched the idea of bringing me in to speak as well. She believed in the importance of my talk, to give the students a peek into the patient experience and to hopefully lead to better patient outcomes if any of them choose to go on to have patients of their own.
Preparations
Of course, this wasn’t a situation of just gliding in with my tried and true presentation. I had an HOUR to speak, and I wanted to make sure that the additional content I included was highlighting the aspects of my experience that would resonate with a group of medical students. This meant I had quite a bit of new material to rehearse and refine.
The day prior to the presentation, it was time to really buckle down and do some final run throughs to triple check my run-time. But my narcolepsy had other plans, and I fell asleep during a practice run. Ah, sweet irony.
Still, I felt confident going into the presentation. I reminded myself that these were my lived experiences. No one was better equipped to talk about them than I was. And these were things that I was passionate about – I wasn’t going to forget my points because I deeply care about them.
Presentation Day
I had the chance to listen to Dr. Sharkey’s lecture on Sleep while I waited my turn. It was a wonderful experience. She’s clearly passionate about the subject, which is something that has always come through during our appointments. I learned so much! And I was proud to see that I already knew a lot of what she discussed and was able to follow along with the rest, despite the lecture being targeted to a specific set of students. I certainly didn’t have any classes in my Video and Radio Program that could have counted as the prerequisites.
Somehow, I had managed to stay completely calm during Dr. Sharkey’s lecture. I took some notes about things that were interesting that I wanted to remember, I jotted down a few things from her presentation that I wanted to reference back to. I was cool and collected. But during the 10 minute break before my talk, all that nervous energy found me, and I awkwardly stood in the back, unable to bring myself to stay seated.
The Attendees File In
Dr. Sharkey had told me to expect a good turnout, that patient presentations always drew big crowds, and that the students would love hearing from me. Still, I was shocked as the room filled up for my time slot. The lecture hall holds 150 people, and it was packed. I couldn’t believe that so many people had come specifically to see ME.
Cue the moment of panic just before we get started as I realize that I’ve never used a remote for controlling my powerpoint slides. Luckily the rational side of my brain took back control and assured me that I would figure it out.
All Eyes on Me
The experience was thrilling. I’ve always been amazed to find that there’s this part of me that steps in and takes control, a sort of auto-pilot that keeps me on topic and making sense. This past week, I had been experiencing significant brain fog, several times getting lost mid-sentence and forgetting what I was saying. This definitely made me nervous. But I formed coherent thoughts and even spoke in full sentences! I even riffed a little based on the crowd’s reactions. Having an audience in-person was so much better than my prior online presentations. I could read their energy and put it back into my own performance (this is a thing that I’ve always heard musicians talk about, and it was so cool to experience it myself!)
At one point in my talk, there’s a transition from a somewhat lighthearted tone to a serious one, and I could feel the crowd react to it. That really struck me. I could feel the nearly imperceptible hush, sense them all lean in just a little.
Any Questions?
I clocked in right on time for a few questions. As I had expected, no hands went up. Dr. Sharkey, no stranger to how the Q&A portion typically goes, asked a question to “give everyone else a chance to think of their questions.”
And then hands went up. A lot of them! Really good questions, too. Their questions made it clear to me that this was a room full of people who give a shit. They want to understand the patient experience, they want to go on to make a difference and provide great care. One person referenced the length of time between symptom onset and diagnosis and asked me for my opinion on what can be done to improve that; how they could do a better job at recognizing that their patients are struggling, especially when the patients aren’t actively coming to them about it.
How can they do better. How can they improve lives.
And,.. done.
I was exhilarated. I was so happy with how the talk went, and I was left feeling this great hope for the future. Nearly every student in the program had shown up to my talk because they wanted to know what it’s like for a patient to live with narcolepsy.
A few students came down to ask some specific questions.
This Actually Happens in Real Life?
The final woman approached and looked me right in the eyes to tell me that she had really connected with my presentation, that it had spoken to her. Everything that I had described was something that she had experienced, that it was like I had held up a mirror and she had seen herself. She told me that my talk had inspired her to finally go to the doctor and try to get answers. She teared up. I almost lost it. Dr. Sharkey almost lost it (if we’re being honest, I’m tearing up now as I reflect on the conversation). I could see in her face that I had validated her experiences and made her realize all of those same things that I had learned to realize myself.
This. This is what it’s about. This is the reason why I share my story.
I’m struck by the repetition of the theme. In my presentation, I say the exact same thing that she said. When I read an article by Jimmy Kimmel about what it was like living with narcolepsy, I felt like he had just described my own life. Everything he discussed, I knew what it felt like. Now, here I was, sharing my story and having the same impact on someone else’s life.
I end my presentation by reflecting on how important other people’s personal stories have been for me. That I hope I can do the same, that if my story is able to help even one person in the same way that other stories impacted me, then it’s all worthwhile.
I guess that means I did it?
Mission Successful.
If you want to learn more about Project Sleep’s Rising Voices of Narcolepsy Program, or watch other people with narcolepsy share their personal stories, you can find out more at Project Sleep