Every so often, life gives you the opportunity to bring things full circle, to tie together the various plot points into a tidy narrative. This chance came for me when Project Sleep asked if I would be interested in sharing my story about my narcolepsy journey through their Story Sharing Series.
In 2020, a few months after my diagnosis, I first came across Project Sleep. Their commitment to raising awareness through personal stories helped me make sense of my experiences and better understand my disease. Hearing the accounts of other people with narcolepsy made me feel less alone and steered me in the direction of my current advocacy work. It is ultimately these stories that led me to create this blog, to begin my fundraising journey, to reach out to politicians to advocate for policy change, and to craft my own personal story into a presentation through the Rising Voices of Narcolepsy program.
The Project Sleep community is passionate, kind, and intensely supportive, so I knew that participating in the Story Sharing Series was going to be immensely rewarding. It felt like my chance to give back to the community, a chance to reach others who might benefit from hearing someone’s personal story.
Obviously, I was also incredibly nervous. This would be my first large-scale presentation of my story, and I wanted to make sure that the Project Sleep community got my best. Add to this the fact that the several weeks leading up to the presentation were completely jam-packed (multiple jobs, two different trips to other states, and MOVING the weekend prior) and I was feeling the stress.
I made a game plan, with lots of checklists. I scheduled the appointment to have the internet hooked up in my new place – with unfortunately only two days of wiggle room! I made backup plans in case anything went wrong. The first.room I unpacked was the room that I planned to use as my backdrop, and I spent far too much time making sure the lighting was good and that everything behind me was neat and tidy. Maybe I didn’t have any way to cook and nothing to eat off of, but the video was going to look good!
And my hard work paid off.
The presentation went just as smoothly as I could have hoped. All of my run-throughs ensured that I avoided any major hiccups, and the feedback that I received was incredibly positive (although what else could I expect from the Project Sleep community?)
When I signed off from the stream, I was flooded with relief, excitement, and pride. I took a deep breath, letting go of any remaining anxiety, and, wearing a huge grin, gave my partner a hug.
This was a big milestone for me. Not only was it the first large-scale presentation of my story, but it made me feel like I was a legitimate advocate now. Having an organization as wonderful as Project Sleep elevate my story through their platform made me feel like I had made it as a speaker, and I’m incredibly thankful for the opportunity.