Brooke Cox, Founder of The Nap Nook (Tulsa, Ok)
I am 33 and every day at 10am and 3pm I go to my Nap Nook for unavoidable required daily naps. The Nap Nook is a real place. It’s my own serene hideaway located in the deepest most quiet corner of our converted attic. It’s where I go when I can no longer fight the urge to sleep.
I’ve had Narcolepsy as long as I can remember, though we estimate that it began when I was 6. I wasn’t officially diagnosed with Narcolepsy until I was 25 years old. So, for most of my life, 19 years, I was misdiagnosed and misunderstood.
Narcolepsy is a neurological sleep disorder. It is a chronic condition, and its impact on everyday life can vary, but the main impact on a person is always feeling sleepy, no matter how much sleep one might get. Imagine how staying awake for 2 to 3 days straight affects your physical and mental well-being. That is what it is like to live with Narcolepsy. Being constantly sleepy is a daily challenge. For me, it is torture.
Because of constant need for sleep, I was a dubbed a “lazy” child. I know now, I was more than just sleepy. I would have auditory hallucinations—a common symptom of Narcolepsy—that caused a fear of the dark, and I was terrified to sleep in my own room. I wanted to be amongst kids my own age, but never had the energy. So, I had very few friends and “preferred” the company of my parents.
In school, I was constantly missing classes due to my Narcolepsy. I was failing high school, despite have straight A’s, because I was not able to attend classes regularly. Luckily, I had made a perfect score on my pre-GED, so everyone agreed I could move on, because I didn’t have any behavioral issues that would indicate I was a typical “drop out.”
At first, I was diagnosed and treated for depression. The medications did nothing to treat the underlying issues with Narcolepsy, and only made me not mind as much that I was missing out on a normal life.
I always knew there was something more wrong with me, but no one would listen. I worried from a young age that I would struggle, and I never wanted to be a burden to my large family. So, I made myself smaller. I made my symptoms seem smaller to others, because I didn’t want to cause more worry to my family.
At 18, I knew I had to strategically take a job with room for growth, because my lack of education, I knew I had to start from the bottom and work up. I went to a temp agency and asked for a company with the most potential for promotions. I never looked at pay as the consideration, just at the opportunity it might provide. My strategy worked. I started as a receptionist, moved to sales, was promoted to a sales manager, then finally left to pursue bigger things after three years.
While my professional life flourished, I still had no personal life. I bought my own home at 21, lived alone, worked, and I slept—a lot. With my disease, I only had time to devote to certain aspects of life. But because I loved my family, I thought choosing to work instead of spending time with them was the better decision. Again, I did not want to be a burden.
I was social and funny. I looked happy on the outside, but on the inside, I was in agony daily constantly trying to fight my Narcolepsy and just stay awake. I felt as though healthy people didn’t realize the luxury it is to simply be awake and live.
Finally, at 25, I had enough. I demanded a sleep study. My doctor finally gave in, though only to appease me. At last, I had the diagnosis for the cause of so many issues in my life. It had a name – Narcolepsy.
I explain Narcolepsy to healthy people with a metaphor where hypocretin—the neurotransmitter that controls sleep and wake states—is a cage; and REM sleep—dream stage—is a wild dog. People without Narcolepsy have a cage and the wild dog goes into this cage at appropriate times. People with Narcolepsy lost their cage. We have this wild animal roaming our brains. With any wild animal, it won’t always obey. It’s exhausting dealing with an untrainable presence in your brain, constantly fighting you and trying to make you sleep. You may win battles throughout the day, but the dog always wins the war.
I continued to work in a career I loved for more than a decade, specializing in real estate auction—a technology-driven field—and my titles ranged from Ops Manager to Director of Operations. I was very good at my job. It was my passion. And, really, it was all I had.
I finally married in 2016, like one is supposed to do; but I broke. I mentally crumbled. It was sudden and seemingly without cause. But coping with a virtually ‘invisible’ disease was having tangible consequences in my life. I chose to focus on work instead of spending time with my family because I loved them and wanted to be self-sufficient; but I failed to communicate this. I had sacrificed having close family relationships. I had missed out on the education that I desired. And, I knew I couldn’t have children because of my health.
Through therapy, I realized I had subconsciously given myself a date I would be cured of an incurable disease. I thought, by the time I was married and wanted to have a family, surely, I would be better. When I hit this self-imposed deadline, and still was not better, I finally had to face the fact I wasn’t ever going to get better. The dedication I put into to work seemed futile, because there wasn’t going to be an end to this disease. I became unhappy, depressed, suffered severe social anxiety, all on top of the debilitating effects of Narcolepsy I had dealt with my entire life.
I fell further into my solitude, excluding myself from the world. I began working from home, but I also taught myself how to sew as a hobby. I started seeing a Psychologist who felt a hobby would give me a sense of purpose. I’m unsure if she knew at the time, I’m an “all or nothing” personality. I don’t have as much time in the day as everyone else so if I do something it’s because it’s worth doing and if it’s worth doing, I’ll push myself hard and fast to get it done before I fall back into my dreamworld.
Sewing was the perfect balance of thought without stress that shushed the world and let my mind rest. I had never felt the world so quiet. My goal quickly became apparent – to make the perfect pillow.
I was sleeping a lot, of course, so I really wanted a go-to pillow. I tested out many types of stuffing, different sizes and shapes, when I finally found the perfect one. I made one for my husband. I picked fabric suited for him and he loved it. I made one for my dad, mom, brothers, nieces, nephews, former coworkers—everyone in my orbit. I would personalize each pillow with something that would make them feel special, and, in a way, this reconnected me to the world. The gifts were a hit, and soon I was being asked to make more pillows. I was thrilled. I never asked to be paid, because the happiness it brought me was payment enough.
The demand for “Nappers” pillows was starting to grow, though, and giving them away wasn’t financially feasible. So, I made the decision to make The Nap Nook my full-time project, creating these special “Nappers” as an advocacy tool to spread awareness and start conversations. I realized the pillows were opening the conversations not just about Narcolepsy, but people would also start talking about their own struggles with chronic illness, rare diseases or depression.
My Nappers are comfortable and are heavier than normal, having a weighted feel. The designs are all different but all magical and built with someone specific in mind. I always say they are hugs you can keep.
Some buy Nappers because they just like the way they feel and look. Most buy as gifts for other people who are sick. I receive notes from the recipients often. When a chronically ill person is gifted one of my Nappers, they feel accepted for who they are, noticed, loved, and most importantly, not alone in whatever battle they are facing.
For me, I struggle because I can’t fix the world. I can’t cure anything. I understand the misery of waiting for doctors, fighting with insurance, and trying to set goals. But instead of feeling powerless, I’ve decided if I can make even a tiny positive impact on someone who is hurting, it’s worthwhile.
I’m often contacted by others and thanked for my contributions to our community of folks who fight “invisible illnesses.” I’m told an inspiration or an amazing soul when, truth be told, I’m am seeking understanding and compassion from the people I love in regard to the actual suffering that comes with this disease very few understand.
The Nap Nook has resulted in people in my life being more aware of Narcolepsy, its symptoms, and its impact on daily life. The Nap Nook has educated my family, after trying to do so unsuccessfully for so long. Once I let the pillows do the talking, it started to make sense to them. I hope that I can continue to do my part to bring awareness about and compassion to not only those fighting Narcolepsy, but to those facing any challenges in their lives.
Lack of awareness surrounding Narcolepsy, Narcolepsy’s symptoms, and the actual impact the disease has on our daily life is causing unnecessary suffering and therefore I refuse to move onto the “acceptance” stage of grieving my diagnoses. Lack of awareness and understanding is depriving us of emotional support, a basic human need.
I’m focusing on raising awareness surrounding invisible illness and refusing to accept anything less than what we deserve which, at minimum, is empathy from people we love.