Thanks for following, and welcome to my story.
Chapter 1 – A Degree Removed
I’ve spent my entire life one degree removed from the norm. I excelled in school, but I grew up poor. I am an abuse survivor, but I broke the cycle. I was raised in a low-income family, but I left my hometown and aspired to more than just getting by. I am a veteran of the United States Navy, having honorably served my country in the Armed Forces for 10 years, but I am a female.
Like many of my fellow Americans, I suffer from an autoimmune disorder, but my disorder doesn’t have flashy public relations campaigns, like diabetes or Parkinson’s disease or multiple sclerosis do. In fact, most people hear about it in a joke before they even realize that it is a real, and debilitating disease.
I have narcolepsy with cataplexy. Most people with narcolepsy, or PWN as we prefer to be called, must hide this secret from the world, lest their employer label them as lazy. Or even worse, get fired or lose their health insurance, because of a lack of awareness and understanding.
Well, being one degree removed like I am, I refuse to hide. Instead, I want to use my experiences with having untreated narcolepsy with cataplexy as the spotlight that brings this terrible disease out of the darkness of benign neglect.
I am a person with narcolepsy, and this is my story.
Most people with narcoleptic children notice their kids’ fatigue before any other symptoms appear. I, however, was unfortunate enough to grow up during the explosion of highly caffeinated beverage marketing in the early 1990’s.
At 13 years of age, I would commonly start my day as a junior high school student with these sugary, caffeine-laden “coffee drinks” in order to stay awake in class. Either that, or I would get my hands on any caffeinated beverage I could. Remember Jolt cola? I certainly do, and up until last year, caffeinated energy drinks would be something I would consume on a regular basis.
My family background also plays a part in this story. I am the oldest of 4 siblings, the youngest of which is a half-brother. Our mother divorced the father of us three older three siblings in 1987, after he got drunk and hit her in the face with a 2” X 4”. Some straw, said the camel, after its back had been broken. Throughout the rest of my life, our father would be, at best, a sporadic presence with unpredictable affect.
My mother, co-dependent as she was, immediately fell into the arms of my stepfather and remarried. Together, they had a son, our half-brother, almost immediately after. In the beginning, as it is with many abusers, life was pleasantly normal.
He plied us with new clothes, when our father left our family so destitute we had to beg for food at the church. He even rented a beautiful home for us right next door to the elementary school I was attending! These were luxuries we had never before had, and those luxuries were the 30 pieces of silver for which my mother unwittingly sold her children’s innocence.
I arrived in junior high school emotionally scarred. Horribly shy, I covered my budding frame in the baggiest clothes I could find, using them as a shield from any unwanted sexual attraction. I had a very small circle of friends who participated in activities that I used as outlets for my home life: band, track, video games, and Magic cards. I don't know if they had any idea what was going on at home, but I know they didn't judge me on anything but my own merit, and for that I am still grateful.
Almost immediately, I bonded with my best friend, Jessica Smith, and her family. They would become not only lifelong friends, but also a part of my chosen family that has a very special place in my heart. As my home life would continue to deteriorate, they would be the stable presence that every child needs in their life. I am certain that without them, and their unbelievable kindness to me, I would not be where I am today.
This is the backdrop on which my narcolepsy story begins.
Imagine, for a moment, that you are me at 15. A shy, awkward dreamer with a creative streak a mile wide, but haunted by twin specters of rejection and self-doubt. One day, I'm in my room, enjoying the freedom from those specters that comes only when I'm alone, dancing to music that only I can hear. But wait... Do you hear that? Is is someone coming up the stairs to the room?!
At this moment, narcolepsy comes crashing into my life with a surprising violence. The fear and embarrassment trigger a waking sleep paralysis, known as cataplexy, and I go crashing to the floor. Of course, I wouldn't find this out until years later. All I knew at first, through the haze of shock and pain, was that I had injured my knee so badly that I couldn't even walk, and the sight of how swollen it was after just a few moments shook me to the core.
My screams drew the attention of my mom and stepdad, who promptly go into dutiful parent mode. The ensuing doctor's visit confirms that my kneecap had dislocated, but gives me no reason why. When the swelling and weakness stubbornly refuse to subside a week later, I'm given an orthopedic specialist consultation. He finds that I've chipped off a piece of my kneecap, which is floating around in the joint and must be removed, and the damage repaired.
I go into the first of 5 successive knee surgeries knowing that there had to be some reason for my kneecap to just dislocate like that, but was left to wonder why I was the only one who did. Like so many other things in life, it would be something I would have to figure out on my own.
