Living with Narcolepsy:
An Interview with Solomon Briggs
When Solomon Briggs appears on my screen for our interview, I instantly sense he is an artist. Painted skateboards line the wall behind him—part of a collection he’s acquired over the years. Though these are not his own art, I learn that he has authored and illustrated a graphic novel, created a book of hand-drawn images, and is now creating infographics to help others understand narcolepsy with cataplexy. We begin our conversation there.
“Art can express what sleepiness looks like from the inside out. When the science of the disorder is beyond someone’s comprehension, the art of the lived experience can step in and make them finally feel it.”
WSCN: What can you tell me about your sleep condition?
Solomon: I have Type 1 Narcolepsy with Cataplexy. I also have rare idiopathic central apnea and delayed sleep phase onset syndrome. It’s a challenging combination.
As a child, I had moderate cataplexy. I’d lose tickling fights with family because I couldn’t lift my arms, and I tripped a lot. Things like this happened on and off until I was twenty, when the cataplexy became severe. I started collapsing and melting to the floor. The other stuff was probably going on the whole time, too, but it wasn’t until I was 28 that I even began seeking a diagnosis for cataplexy, which I didn’t even have a term for yet.
WSCN: So, how did you get diagnosed with Type 1 Narcolepsy with Cataplexy?
Solomon: Finding the right words to talk to doctors has always been a challenge. I know what the sensations feel like in my body, but I had to learn the language to explain my conditions to physicians so they could understand my experience. When you’re talking to your doctor about sleep, you don’t necessarily want to tell them that you’re sleepy. You have to explain how it’s impacting you. For example, you’re unable to remain focused, you’re in a fog, you’re fatigued, you’re daydreaming or drifting off, and you can’t get things done. Driving challenges are something many people recognize and can talk about. .
“Patients are expected to speak about their symptoms, but when it comes to sleep, you have to go deeper than just saying you’re sleepy. We have to analyze our own experience and learn to translate it in a way that actually gets heard. ‘Cause if you don’t learn how to translate that internal feeling into external language, the clinical world often doesn’t cut it in terms of providing the help you actually need.”
At 28, I began a three-year journey. I started with my primary care doctor, and then we set up a sleep study with a neurologist. Because the apnea appeared, we couldn’t discuss the cataplexy and narcolepsy, even though I had videos of me collapsing. I went on PAP therapy, and CPAP didn’t work, and then biPAP ST didn’t work, and VPAP didn’t work either. It was a very long year, and all of my symptoms just went completely haywire when I tried PAP therapy.
At that point, I sought out a second opinion at the Mayo Clinic because they had given me life-saving pancreatic surgery when I was an infant. I spent three weeks undergoing extensive sleep tests. Diagnosis is difficult with multiple sleep disorders, but eventually I got answers. The whole narcolepsy diagnosis is a bumpy, difficult path if you have other co-morbidities, like other sleep disorders.
Over those years, I was online. I immersed myself in all the medical literature I could find on narcolepsy and cataplexy. I also watched videos and interacted on message boards with people who have narcolepsy. The more that I learned, the more that I reflected on and recognized my own experience. I realized, “Oh wow, I have every symptom, and I’ve had every symptom of this disease as far back as I can remember.” It was just the only normal I knew.
WSCN: You’ve mentioned the importance of advocating for yourself. What do you recommend to others on a similar path who want to advocate for themselves?
Solomon: Being on message boards and sharing my stories as well as listening to others’ stories, has given me a broad perspective of the lived experience of narcolepsy with cataplexy. Here are some things I recommend:
- Reflect on how narcolepsy affects your life, and break down the specific impacts it has.
- Bring family members to appointments and explain how they see your condition; this can help the doctors better understand it.
- If doctors dismiss you or write off your symptoms as something else, keep pushing for answers and seek second opinions if needed.
“For me, advocacy isn’t just about finding a cure. It’s about the daily normal that I live every day. When I share my story or explain why certain things are difficult, I’m not complaining; it’s my attempt to help calibrate and evolve the common understanding of what living with a sleep disorder actually entails.”
WSCN: Earlier, you mentioned that PAP therapy didn’t treat your other symptoms. Can you share a little bit about what did help?
Solomon:
Sleep isn’t a habit or a hobby, and it doesn’t exist in a bubble. My journey has shown me that the pancreas, the gut, and the brain are in a constant 24-hour conversation. If you only treat the sleep disorder without looking at the entire system, you’re essentially trying to treat a broken arm while pretending the bone doesn’t exist.
After going through the medical process and getting a diagnosis and confirmations, I tried some medications, but the positives were not outweighing the negatives. So, I made some dramatic lifestyle changes. I went gluten-free when I learned I was allergic to wheat. I went dairy-free because I was dealing with GERD. I cut out meat because I was having headaches.
In my experience, if you can improve your overall health balance, the symptoms will also likely be less. You’re probably not going to be able to cure it, but you might find that you’re less impacted. Stress makes narcolepsy worse–it’s like pouring gas onto a flame.
“Living with chronic sleep disorders requires a very specific kind of patience. There is a wait and a weight to this. You are constantly waiting for the right treatment, all while carrying the weight of invisible struggles every single day. It’s a process of trial and error to learn how to carry the weight without letting it crush you on every front.
WSCN: What are some of the things that helped you carry that weight?
When my cataplexy became severe in my twenties, I had to limit my physical activity. That’s when I began drawing and then painting. All of that evolved into my advocacy books. These artistic activities relieved the tension in the same way that skating had done for me before.
I have a website where I share my experience and advocacy work: www.narcoplexic.com. You can find my books and infographics there. On my Patreon, I have an ongoing graphic novel called “Leo’s Daily Normal.” It portrays many symptoms as experienced by a teenager with various sleep disorders. He is unaware of his sleep disorders because I want to focus on the experience, not just the terminology. The goal is to help people recognize this in themselves and help parents and loved ones recognize symptoms and understand the experience.
“Graphs and clinical definitions often fail, whereas a story or image often succeeds. Art can express what sleepiness looks like from the inside out. When the science of the disorder is beyond someone’s comprehension, the art of the lived experience can step in and make them finally feel it.”
WSCN: If someone wanted to learn more about narcolepsy and/or cataplexy, which of your books would you recommend they read first?
Solomon: I made a non-visual version of my most recent book, “Insights and Clarity to Living with Sleep Disorders.” There’s a primary focus on living with narcolepsy, but the first section covers the six categories of sleep disorders. If you want a visual book, my first book, “Expressions of My Own Narcolepsy with Cataplexy,” has been very well-received. These and other resources are listed on my website.
