Painting My Future With Narcolepsy
World Narcolepsy Day (September 22) serves to raise awareness for narcolepsy across the globe. In Puerto Rico, sleepiness is widely seen as laziness and lack of motivation. Sharing stories by people with narcolepsy can help break the stigma and lead to quicker diagnoses and treatment.
Life before narcolepsy
I grew up in the lovely island of Puerto Rico, in the town of Bayamón. Growing up I enjoyed creating ceramics, drawing and painting. In school, I was attentive and curious, a straight A student. I hoped to become a famous artist someday or at least have my work displayed in a museum. I also appreciated the outdoors; I would spend endless hours in my skates, never tiring. I liked activities that lead to high adrenaline like roller coasters and rock climbing. I was an explorer and the world was my canvas.
Despite my high energy as a child, I needed to sleep a lot. During my fifth birthday party, I was found napping in my room while the other kids were playing. When I slept, I often experienced vivid nightmares that scared me and I could never move when awakening. In high school, I constantly napped during lunch time, which was seen as lack of motivation. One time I was so tired I got home from school and slept for 18 hours straight.
In 2011, I attended Alfred University in New York to follow my dream of becoming an artist. The summer after my second year of college, I woke up dizzy every day. One day, I walked to my best friend’s house and felt like I was going to pass out. I managed to arrive, but I had to nap immediately. I was referred to different specialists: cardiologist, endocrinologist, gynecologist and neurologist. The tests came back normal and the doctors attributed my symptoms to anxiety or depression.
I will never forget my college Figure Drawing class and it’s not because of the nudes. During one class, I felt particularly exhausted. During class break, I walked back and forth to try to stay awake when I noticed my knees felt weak. I struggled to support my body as if walking along a balancing plank. I was terrified and didn’t understand what was happening.
Back in class, the assignment was to paint a figure with black ink. The professor started the timer for the model to pose. I stared at my classmates rushing to paint as I felt slowed down. I started sketching when suddenly my arm felt like it weighed 5 kilos. It went straight down the paper in my easel. I looked around thinking: “Who turned up the gravity?” I tried my hardest to raise my arm but it was impossible. I was scared; my biggest concern was that the professor would ask why I wasn’t painting and I didn’t have an answer.
Later on, I learned the weakness I felt that day in my knees and arms is called cataplexy. It’s a symptom of narcolepsy that causes episodes of muscle paralysis. Cataplexy varies from a buckling of the knees to collapsing to the ground. The person stays conscious through this episode, even if unable to speak. It’s usually triggered by strong emotions and lasts from a few seconds to minutes. My triggers are excitement, surprise, anger and exhaustion.
One day I was lying in bed when suddenly I couldn’t move. I looked at the walls and “The Matrix’s” digital rain had taken over. Everything looked like a grid and full of static. Had I crossed to another dimension? I felt disturbed. This was not a one-time experience, and it turned out to be another symptom of narcolepsy called sleep paralysis. Sleep paralysis is a temporary inability to move or speak during sleep-wake transitions, which could be accompanied by hypnagogic or hypnopompic hallucinations, which are sensory hallucinations upon falling asleep or waking up. Anyone could have sleep paralysis and confusing hallucinations when sleep-deprived, but they’re more common in people with narcolepsy.
During my last years of college, I constantly felt dizzy, tired and sleepy. During my third year of college, I got Cs in two classes for the first time ever! They were both ceramic classes I loved and prioritized. I couldn’t wake up early to be in the studio. I felt bummed and limited. I napped in between classes in random couches. On the weekends, I lacked time to do homework because I had to spend 14 hours in bed recovering from the week. I also lacked time to socialize, which made me feel misunderstood and isolated.
Regardless of my symptoms, I worked my hardest to graduate in 2015 with a Bachelor in Fine Arts and a minor in Psychology. I was proud and amazed of my achievements. After college, I moved back to Puerto Rico.
Road to diagnosis
Back in Puerto Rico, I did some research and realized I might have a sleep disorder. I decided to ask my primary doctor to refer me to a sleep specialist. I had to leave Puerto Rico to undergo the sleep studies because my health insurance wouldn’t cover the tests. It took exactly four polysomnographys, two MSLTs and relocating to New York to finally receive my diagnosis of narcolepsy with cataplexy at age 25.
Narcolepsy is a chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. I had experienced all of the symptoms of narcolepsy type 1: excessive daytime sleepiness, cataplexy, sleep paralysis, hallucinations and disrupted nighttime sleep. I finally had answers and felt relieved. My boyfriend supported me through the process of diagnosis. It was going to be challenging, but he decided to stand by my side and say “we can do this together.”
Life with narcolepsy
There is no cure for narcolepsy, but there are different treatments available. They vary by person; I’m still on a journey to find the right medications for me. I take a stimulant to be more awake during the day and an antidepressant to sleep better at night. I practice sleep hygiene and take naps to manage the daytime sleepiness.
I’ve learned to practice self-acceptance to develop healthier expectations. I’ve had to diminish vigorous exercise and activities that lead to adrenaline. Low intensity exercises such as stretching and dancing help me stay fit while not overexerting myself. Avoiding adrenaline allows me to control strong emotions thus handling cataplexy better. Narcolepsy doesn’t have to stop people from being active or pursuing their goals, they just need to pace themselves and compromise.
Looking toward the future
My diagnosis has taught me to trust my gut feeling when something doesn’t feel right. It has helped me value myself and my time. I’m still able to make artwork and share my passion with the world. I aspire to continue graduate studies in art therapy and counseling. I was accepted into Seton Hill University, PA and plan to start my masters in January 2020. Through art therapy I would like to help children and adults with mental or physical conditions including narcolepsy. My goal is to provide patients relief from nightmares and hallucinations through the making of paintings and ceramics.
This World Narcolepsy Day, I’m hoping to raise awareness about narcolepsy in Puerto Rico and around the world. There’s a stigma that associates being sleepy with laziness. I’ve felt this stigma many times. The sleepiness experienced by people with narcolepsy is no joke; it can be compared to people without narcolepsy not sleeping for 48-72 hours. Many of the disorder’s symptoms can be terrifying, especially to people who are undiagnosed. In Puerto Rico, government health insurance doesn’t cover the studies needed to diagnose narcolepsy. This increases the amount of people who go undiagnosed.
Narcolepsy affects 1 in every 2,000 people, yet because of low awareness, the majority of people with narcolepsy are currently undiagnosed. On average, it takes 8-15 years from symptom onset for people with narcolepsy to receive a proper diagnosis. I hope that by sharing my story, you will gain a better understanding of what living with narcolepsy is like so other people living in Puerto Rico and across the globe can receive quicker diagnosis and successful treatment.