Today, we are proud to share the artwork of Dana Harel, a woman living with type 1 narcolepsy with cataplexy in Israel. Dana created this captivating multimedia artwork in honor of World Narcolepsy Day on Sept. 22, 2021.
World Narcolepsy Day 2021: Powerful Artwork from Israel
From Dana: This piece is about the two types of narcolepsy – type 1 narcolepsy with cataplexy (which is my diagnosis), and type 2 narcolepsy without cataplexy. The two are close to each other. The right is always there, while the left sometimes joins.
On the right – Narcolepsy: boredom, complex relationship of sleep and wakefulness. The man is a silhouette in the dark, with circuits all over his body. The D.R.E.A.M falls apart, the puzzle pieces don’t fit together anymore. The proper connection between sleep and wakefulness has been lost. The man is handcuffed, he feels bound. In between, the rain doesn’t stop, the umbrella is already in tears. A ghost is sitting on his shoulder and doesn’t want to leave. Some bright stars and moon give some light. And in some of the cracks are written the symptoms that characterize his disorder.
On the left – Cataplexy and other symptoms related to REM-stage sleep. A cheerful, happy, excited little girl enjoys her colorful life. She is climbing high, laughing, playing without fear, giving free rein to her emotions, ignoring demons and all the “warning signs” that come from all over. Watch out, little girl! You are playing roulette. She knows she is taking a risk, and all her joy and laughter and emotion… can in one moment make the whole celebration end. The words “I thought that I heard you laughing” are lyrics from the song “Losing My Religion” by the band R.E.M. The song ends, “that was just a dream…” which is fitting as well.
Hello! I live in Israel with my husband and our two children. I’m a developmental psychologist by profession and an artist in my soul. My artwork primarily involves paper craft, scrapbooking and mixed media.
My first narcolepsy symptoms started when I was about 18 – possibly even earlier. In Israel, narcolepsy is very rarely diagnosed, and doctors have hardly heard of it – even neurologists! There are very few sleep doctors here and no narcolepsy specialists, so it takes years to get a correct diagnosis.
I was finally diagnosed several years ago at age 34 with type 1 narcolepsy with cataplexy. I am fortunate because a colleague of mine worked in a sleep lab and suspected I had narcolepsy, so I was able to see an excellent sleep doctor and get diagnosed and treated. Only one narcolepsy medication is currently approved in Israel, but I receive additional medication via international delivery.
Before I started taking medication, I experienced severe cataplexy every day. Currently, some of the main challenges of my narcolepsy are brain fog, sleepiness disrupting plans with friends and family, and not being able to leave the house much because Israel’s hot climate triggers my sleep attacks. Parenting during the pandemic has been especially challenging because my children aren’t in school so it’s difficult to maintain a routine.
There are misperceptions too – others sometimes think my symptoms shouldn’t be a problem because I take medication, or think my extreme sleepiness is the same as general tiredness. It can be hard for people I’m close with to see me struggling sometimes, but my loved ones are supportive and try to understand.
You can connect with me and see more of my art via Instagram at @dana_harel8.
About World Narcolepsy Day:
World Narcolepsy Day takes place annually on September 22 and is dedicated to raising awareness of narcolepsy on a global scale. Co-led by 29 patient advocacy organizations across 6 continents, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide. Visit our World Narcolepsy Day webpage to learn more.