In sleep medicine, a profound communication barrier persists: the patient’s lived experience is often lost in translation. While clinicians use precise terms like polysomnogram, patients hear a “sleep study” — or worse, they dismiss lifelong, devastating exhaustion as simply “normal.” In a world where words like tired, fatigued, and sleepy are used interchangeably, this imprecise vocabulary leads to missed appointments, misinterpreted symptoms, and patients who feel completely unheard. It is a systemic failure of complex terminology and a lack of accessible language to bridge the divide.
The Invisible Anatomy of a 31-Year Journey
My own path to a diagnosis took 31 years, spanning three separate, rare, and invisible categories of sleep disorders. As an infant, my life was saved by an experimental Mayo Clinic surgery that removed over 90% of my pancreas due to hypoglycemic seizures. Growing up, I knew my health was compromised, but I lacked the vocabulary to explain the bizarre symptoms that followed.
By my 20s, joy became a physical liability. During pleasant interactions — a smile, a compliment, laughter — my muscle tone would physically dissipate, causing my facial expressions to “melt” away. Within weeks, severe episodes left me in temporary, complete paralysis on the floor. Even as a child, I felt an inner “flickering” of muscles; during tickle battles, I could laugh but was physically incapable of lifting my arms to tickle back, my muffled words (“I can’t lift my arms”) entirely lost on those around me.
At age 28, I discovered the word cataplexy. It fit my life like a glove, though its counterpart, narcolepsy, defied textbook stereotypes. Navigating the medical system, however, proved to be an uphill battle. A sequential trial across the full spectrum of PAP therapy — CPAP, BiPAP ST, and VPAP ASV — proved impossible to tolerate. Instead of stabilizing my airway, it disrupted my fragile baseline, accelerating my cataplexy to 5–25 collapsing episodes a day and rendering me nearly housebound. It ultimately required a 16-hour journey back to Mayo Clinic for an expert second opinion to formally conclude that PAP therapy “was not working” and unmask the full picture.
The final diagnosis revealed an overlapping triple threat: Type 1 Narcolepsy, rare Idiopathic Central Sleep Apnea, and Delayed Sleep Phase Disorder (DSPD).
The Communication Barrier
| Patient Experiences | Clinician Sees |
| “Inner muscle flickering” | Vague “fatigue” reports |
| Facial “melting” with joy | Standard PSG metrics |
| 31-year lack of baseline | Normalization of exhaustion |
Solution: A shared, high-fidelity visual language
The Broken Vocabulary of Patient Education
Since 2008, I have immersed myself in sleep science and the patient community, self-publishing illustrated books and participating in the [N]Art exhibits at the Narcolepsy Network annual conferences to give these conditions a visual form. Over two decades of analyzing clinical data and patient interactions, I discovered that the phenomenology of these rare overlaps continues to evolve. Capturing these nuanced presentations requires immense thoroughness, as they are rarely understood during an initial clinical encounter.
A major disconnect exists in our educational ecosystem. The science is rapidly evolving, yet it remains isolated from the visceral reality of the lived experience. The average general practitioner is not an expert in sleep medicine; grasping this spectrum-heavy science requires immense devotion and time. Because of this, we face a double-layered communication failure: the Medical Gap between cutting-edge science and primary care gatekeepers, and the Human Gap between that science and the daily survival of the patient.
When dynamic disorders are forced into rigid, text-heavy metrics, the patient’s struggle is minimized, and standard brochures gloss over the darker corners of these conditions. Narcolepsy, central apnea, and circadian disruptions alter the entire trajectory of a human life.
Enter Sleep Wake Dynamics: A New Visual Language
That 31-year search for a shared vocabulary drives my work leading Sleep Wake Dynamics LLC, a specialized educational production studio built to bridge this divide in comprehension and accelerate accurate clinical phenotyping. Evidence (clinical science), Insights (community knowledge), and Experience (multi-category lived experience). We build high-fidelity, structurally robust educational infographics designed to serve as a “two-way street” of translation — optimizing consultation clarity and clinical efficiency.
Our initial library consists of 85 comprehensive infographics, backed by nearly 300 meticulous references and citations. Produced on heavy, large-scale laminated media (11″x17″ and 13″x19″), these assets function similarly to classic anatomical charts:
- For the physician and institution: They serve as permanent office posters and rapid diagnostic reference points that support treatment compliance and cut down appointment times.
- For the patient: They function as an objective visual advocacy tool — allowing patients to physically point to a complex cross-section of a symptom or comorbidity and provide immediate, precise context without getting lost in vague terminology.
The long-term vision of Sleep Wake Dynamics LLC is to map the overlapping features across sleep disorders. By visually connecting the dots between simultaneous disorders, physical and psychological comorbidities, and rare, unspoken interactions, we are dismantling the diagnostic complexity that leaves patients isolated without a clear path forward. We aren’t just changing how people talk about sleep — we are illuminating how it is understood and diagnosed.
Solomon Briggs leads Sleep Wake Dynamics LLC, a specialized design and consulting studio dedicated to bridging the communication gap in sleep medicine. An author and patient advocate living with an overlapping spectrum of sleep-wake disorders, he offers expert consulting and develops high-fidelity visual assets to assist clinicians, researchers, healthcare institutions, and patients in optimizing patient education and clinical comprehension.
