The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 1

I want to start off by saying that the intention behind my words are not to convey or express any sort of anger, hatred, or resentment. I am choosing to share my story with you not so you can take pity. I am sharing it because I believe it needs to be heard to increase not just yours, but society’s knowledge and perception of the constant battle that not only I but many are facing as they undergo the seemingly never ending war that is narcolepsy.

Summer of 2014 was what has brought me to where I am today. I was blessed enough to be invited to attend and participate in a USA Olympic Rugby Academy in Chula Vista, California. I was overwhelmed with great joy that I was given such an amazing opportunity to pursue an endeavor in something that I have passionately worked so hard for. When I received the invitation my jaw dropped in amazement, but for whatever reason my neck muscles mimicked the same motion almost simultaneously, with my knees slightly buckling. Not ever experiencing this before, I didn’t think too much of it but took note of it in case it happened again. Oddly enough, during the weeks leading to my departure, I did not experience it again. While staying at the academy, I was fortunate enough to meet an amazing lady named Amy. Everyone attending the academy roomed and commuted to the Olympic Training Center (OTC) together. While on the bus, I fought to stay awake but sometimes would cave into the temptation of sleep. 

I noticed that Amy also was battling the darkness that lies behind her eye lids. One morning, I gained the courage to sit down with her at lunch. I asked her if she was enjoying herself and how everything was. She broke down, but you wouldn’t be able to see in her body language or her facial expression, you couldn’t hear it in her words as she maintained a straight face. She told me how she was embarrassed and upset that everyone was taking pictures of her while she was passed out on the bus. She continued to tell me that she recently had been diagnosed with type 1 narcolepsy.

I was curious and wanted to hear more if she was willing to share. She told me about the different medications she has been on and the subsequent reactions they had given her, as well as her strategies in keeping her emotions stable. I had to stop her there to ask her to better explain cataplexy since I had absolutely no clue what it was. She continued to explain that when she experiences mood spikes, it triggers a symptom of narcolepsy called cataplexy. When you have a cataplectic attack, you lose your muscle control to varying degrees and, at its worst, you’re put into a temporary state of complete paralysis. It can range from slurring your words, not being able to keep your eyes open, loss in muscle tone in your neck, buckling knees, to complete and total paralysis— completely collapsing to the floor, not being able to see, speak, or move. All while remaining completely conscious the entire time yet unable to communicate to anyone what is happening.

I was shocked and at a loss for words, but I managed to carry on the conversation when it all clicked in my head. I told her about how I’m always tired, and I’ve been battling sleep since I can remember and I had recently experienced symptoms similar to what she had just described as cataplexy.

After a long week at the Academy I had returned home and started to do extensive research on type 1 narcolepsy, utilizing professors on campus along with the archives on the 4th floor of my university’s library. Within a couple of weeks I had experienced my first full blown cataplectic attack.  My life rapidly spiraled into a dark grey wasteland; I had never felt so helpless. The neurologist that I was referred to wasn’t able to schedule me for a consultation until well over a month after I had initially called. Within that month, I was experiencing one attack after another after another. My cataplexy is triggered by emotions that convey excitement or joy.  Unfortunately, laughing is my biggest downfall and the reaction that is guaranteed to have me on the floor lifelessly in a matter of seconds (surprising since I am an overwhelmingly happy person and consider myself to be quite the comedian). As of recently I’ll experience minor attacks when I cry or when I’m upset.

I was away from home living with two roommates who also had no clue what was going on or how to handle the situation. We were all already struggling to learn how to balance all that comes with living on your own.

Classes were starting and everything began to warp into a blur. Within the first couple months of school, I was traveling from Fort Myers to Tampa and back to make my doctors’ appointments. Each drive was a dangerous journey, constantly having to pull over to take 10 minute naps in the parking lot of a CVS or McDonald’s. In September of 2014 I was officially diagnosed and forever labeled as “narcoleptic/cataplectic”. The title didn’t scare me but the treatment plans did. In a span of 3 months, I had been put on 4 different medications all resulting in not being effective in controlling my symptoms. I was put on Adderall, a lot of Adderall. I was taking up to 100 mg a day, with my heart racing through my chest, my face dripping in sweat, teeth clenching, hands shaking, migraines, loss of appetite, and loss of hope. I was still passing out at inappropriate times.

As my financial situation became tight, I started working 60 hour work weeks as an assistant manager on top of being a full time student. I spent another Thanksgiving away from family so that I could make enough money to keep gas in my car, food in the fridge, and the lights on. I found myself nodding off at work and during class; sometimes I would black out and forget where I was and/or what day it was. Sometimes I would even forget my own name. Rugby season was about to start and I had no clue how I was going to lead my team as captain with everything else that was going on. I understood my obligations and had to resign from my job. I was a student first and I had a team to lead. Unfortunately, around that time my cataplexy had gotten so bad that my driving had been restricted. My team turned a blind eye and my roommate Kyra was the only person I could turn to for help.

Second semester had started, the second semester of my junior year at Florida Gulf Coast University. Halfway through my major track, I was stoked to be almost done and on my way to pursuing a career as an exceptional student educator.

Within the first week of classes, Kyra and I had figured out the best routine for us so that we both could get to where we needed to be without any one having to go out of their way for the other. We got up at 5:30am every week day, went about our morning routines and then would head to campus around 7:00am. Some days I had 8am classes, and the days I didn’t she did. I would spend most days at the library frustrated, with my eyelids taunting me with a heavy burning sensation. I couldn’t go more than 45 minutes without a nap, making studying or getting any work done impossible. We would end up staying in the library until 11pm most nights; sometimes we wouldn’t leave until it closed at 2am.

On Wednesday nights I had to take a class at the state college across town due to it being full at my school, but Wednesday night was also rugby practice. Kyra had class times that conflicted with her giving me a ride. I would bike 10 miles to class while the sun was still up and another 11 miles back up US41 in the dark of the night with no street lights. The first night I was biking back, my chain broke and it set me into an attack. I remember laying there vulnerable and scared with worst case scenarios running through my head. When I came to, I collected myself and walked my bike home.

On that walk, for the first time I started to think about my future and how serious all of this really was. I had lost all of my friends because I didn’t want them to see me in the state I was in, I was fearful they weren’t going to understand or accept who I had become. Some of my “friends” would purposely send me into an attack just to laugh at me while I lay lifelessly on the floor. I thought about my aspirations in life: how I wanted to be a teacher for children who have disabilities, and how I wanted to be the world’s best mother/wife. I started to put myself down, digging myself into a deep depression.

My academic advisor informed me the following week that my disability would prevent me from being a suitable teacher, and that the career that I had been wanting to pursue since I was in 5th grade wasn’t a wise path for me to follow. I started thinking about how I wouldn’t be able to take care of my family the way I always imagined I would. I wouldn’t be able to be the “soccer mom” that I had dreamed of being for so long. I told myself I shouldn’t have kids, in fear of passing this illness down.

The days got more and more dreary. It would take everything I had just to sit up in the morning only so I could look over at the numerous pill bottles that sit on my night stand. The spirit and hope inside me would slowly sink deeper and deeper until I felt empty, like a hollow pit. I wasn’t ready to accept this pill-dependent lifestyle. This dependency was and is everything I stand against. I have seen it destroy people and the lives of the ones around them, yet here I was with no other options than to do “what’s best” for me according to the professionals.

I would slunk out of bed and stare at myself in the mirror for a while, hating what I saw. The dark circles under my eyes, chapped lips (result of dehydration from the amphetamines I was on), the sweat already forming under my arms…the next thing I knew, Kyra would be hastily waking me up because I had overslept and was going to miss class. I didn’t want to give up, I never was the type to do so, I was still trying with every ounce that was left in me, but it just wasn’t enough.

My grades started dropping along with my attendance, and my neurologist pulled me off all medications and left me high and dry. I tried utilizing school’s Adaptive Services but the accommodations they were willing to make me were not sufficient in getting me to where I needed to be. Instead I would oversleep my alarm, curled up in a ball on the library floor. At this point I had to apply for a medical withdrawal, and pray that the university would understand the seriousness of my condition so that my college career will remain untarnished (still waiting on the ruling).

Spring semester ended and I moved back home to be with family so that I’d have a solid support group while I re-planned my life so that I would be able to get back on my feet and continue school. Things didn’t necessarily turn out that way.

Click here for Part 2!

Nicole Kenyon

Nicole Kenyon

Diagnosed with Type 1 Narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is Narcolepsy dating as far back as 1999. Throughout the duration of my diagnosis I endured unruly mistreatment by medical professionals and helplessly watched others rob me of the option to pursue opportunities every person deserves to experience. In spite of all the setbacks, I have and continue to defy the stigma that comes with living with Narcolepsy and will not stop until there is a change in the status quo. As someone who has unknowingly experienced the disadvantages as a young adult living with Type 1 Narcolepsy, I strive to advocate for those who are also battling a disadvantage that makes living a life of independence next to impossible. To decrease diagnosis time it is crucial to spread awareness to those who are accountable for shaping future generations. In efforts to do so, I have made it my mission to work with congress as well as school district officials as an advocate for children and young adults living with Narcolepsy. I strive to work towards implementing legislation that will accommodate needs that are failing to be met when receiving a promised education. As of January 2020, diagnosed with Multiple Sclerosis. Advocacy Work Narcolepsy Network Patient Advocate for Rare Disease Week on Capitol Hill 2020                                                                                                                                                    Patient Advisory Panelist for Harmony Biosciences Child Advocate and Coach at Brain Balance, a learning center that offers a holistic approach to treating children with developmental and learning disabilities. Personal Narcolepsy Advocacy Platform via Instagram @fitniknarcoleptic

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