This is a story about narcolepsy.
Long before my family dove head-first into Mormonism, the banner of Puritan Industry had been firmly planted in my little cranium. My mother was tire-less. Every moment of her waking day was spent on the domestic treadmill of perfection. She cleaned and shopped and tidied and cooked and scrubbed and laundered and cleaned. Deargods, that woman could/can clean. Eventually she worked full-time and just added that to endless lists of things that had to be done and done well. When all was said and done, she accomplished this (without napping!) while raising five children and tending to my demanding father, who worked grueling shifts as a policeman, went to night school, did yard work and never-ending house repairs.
I was born 21 months after my big sister and 18 months before my little sister. I was a round, happy baby by all reports. My baby book descriptions (sparsely filled-in as the second child but still more complete than the younger kids got) captured my essence with eerie accuracy: Good eater, healthy bowel movements, sleeps well. I was not a physically adventurous creature. My mother's cousin said that I had no interest in crawling until they put my great grandfather's fireman's hat out of reach. His red fire hat. Another odd glimpse into my not-quite-formed personality: the color red was and is intrinsically compelling to me.
I didn't walk until I was 15 months old. I suppose this isn't all that unusual but I hadn't heard about late walking when I was a young mother. If my children hadn't walked by 13 months, I'd have taken them to the pediatrician. Yet, not walking made total sense to me. Why exert effort if everything important is supplied? By the way, this has nothing to do with narcolepsy (which doesn't present until teen or young adult years), it's just establishing that I was never very physically energetic.
But my brain. Ach. My brain whirled around like a gymnast on amphetamines.
I was a bookish kid. A maker kid. A smart kid. A daydreaming kid. A kid that did not want to play outside. But my mom wasn't going to raise some naked-mole-rat-looking child and pushed me outside to play. Even in the fucking snow. My love for overcast days is a direct result of knowing that if there was a threat of rain, I was allowed to stay inside, writing and building and dreaming. As a grown woman, I would proudly assume the Superman stance and declare, "I am INDOOR GIRL!"
During my teenage years I began to crave sleep. Not all the time but whenever I stopped studying or hanging with friends or doing chores. My senior year of high school was the first time I ever had my own room. I don't remember ever having to be scolded to go to bed.
At 17, I left home for college. It was during college that narcolepsy really set in. I married Dave at the end of my freshman year (fucking religion and it's no-fucking rules). I took a few last classes after financial support from my parents was terminated because I was now independent or something (and there were three kids behind me in the tuition line). One was a 7:00 am class taught by one of Dave's professors. Now, early morning classes were always better for me because afternoons and evenings were my sleepiest times. It was a better time but not sleep-free. The professor cornered my husband and asked him if I slept through all my classes, or just his? I was so damned embarrassed.
Later on, while I finished my BFA, an art history professor (that I loved) forgot that I told him about my problem and during a post-lunch art history slide presentation, stopped the class to wake me and suggest I drop out because I slept through his lectures anyway. I.was.mortified. I penned him a quick reminder of the situation, walked out of the class and worked my ass off to get an A in that course.
Pregnant at 19, my increased struggle with sleepiness could be blamed on pregnancy. After my first was born, it could be blamed on taking care of an infant. A creeping desperation for sleep began to overshadow my life but I was so, so ashamed. I didn't tell anyone until I was really afraid that I wouldn't be able to take care of my baby or achieve any of my goals. I finally went to a doctor who listened to my concerns and promptly suggested I was a bored housewife and maybe I needed a hobby. Motherfucker. I was humiliated. It was a clear sign that I was truly lazy and undisciplined. The cardinal sins of my upbringing.
Our house was carpeted in Fisher-Price and Duplo toys. I managed to bathe the baby and most days, clean the dishes but precious little else got done. In addition to the undiagnosed narcolepsy, I had a cleaning perfection standard that I was never going to even get close to, so my motivation flat-lined. The hillock of clean, unfolded laundry was moved from the bed to floor each night. Dave did more than his share of cooking and cleaning and I ground my self-image deeper into the dirt.
I swear my precocious son's first words were "Wake up, Mommy!" yelled with his plump little hands cupped around my ear. My second child was born 3 days after my 23rd birthday. We had moved across the country when the baby was 6 months old. I hated unpacking. If regular life was hella difficult, unpacking the house and getting everything in order was impossible. One day, in a depressing, light-starved apartment I awoke sitting up from an unintended nap for the 5th time that morning and realized I didn't know where my toddler was. I found him asleep between the boxes or perhaps, he had ingested poison and collapsed between the boxes, I didn't know.
It was terrifying.
The next week, I found a random internal medicine doctor and made an appointment. Armed with a clipboard of notes and not allowing the doctor to say a damn thing, I ran through the litany of my experience, willing him to believe. He asked whether I was depressed and I said, how do I know? Am I sleepy because I'm depressed or am I depressed because I can't stay awake? I told him I didn't think so. I loved having my two children and I felt that my marriage was healthy (I was wrong but at the time, it seemed true). After telling the doctor:
- I lived to sleep.
- Halfway through grocery shopping with my husband and kids, I would almost weep to go sit in the car with the baby until he finished.
- Everything was a Sisyphean task. Everything. How would I ever finish my degree?
- I would fall asleep sitting up constantly. On the subway. On my couch.
- I fell asleep at stop lights.
- I could sleep 10 hours and be ready for a nap 2 hours after waking. My husband had to wake me from that nap after 3 hours because he was concerned (and probably tired of taking care of the kids).
- As I walked around, I fantasized about curling up on the floor everywhere. That low-pile industrial carpeting beckoned me to lie down.
- Sleep had become my savior and my ball-and-chain.
He simply said, I think you have narcolepsy.
Inwardly, I scoffed. For christsake, I didn't have narcolepsy! Narcolepsy was a comedian's joke. It was slumping over mid-conversation. It was stupid poodles running full out and then collapsing for a nap. The doctor said, if you had the more extreme symptoms of narcolepsy, you would have been easily diagnosed earlier. The sleep disorder, like most, is on a spectrum. I didn't collapse from cataplexy. I didn't have sleep paralysis. I didn't fall over mid-sentence. I was just debilitatingly sleepy.
I was skeptical but it was the first time anyone had ever believed me. I wept the entire drive home.
39 years ago today, the door to the rest of my life was flung open because I insisted that someone believe me.
One of the great ironies of my life was that the only legal drug available to me, coffee, was forbidden by my church. Still nursing my baby and not ready to wean her, real drugs were not an option. So I had coffee for the first time. It was stunning what caffeine, thrown into a virgin bloodstream, would do. My gastric system went into an uproar. But I was awake. I stopped near-strangers in my apartment complex to gush that it was 1pm and I hadn't napped all day. It was fucking miraculous.
Narcolepsy is an umbrella term to describe excessive daytime sleepiness. Because narcolepsy is a diagnosis based on eliminating other issues, it is often challenged. I wish just one of those neurologists could feel the terror of possibly having that diagnosis shot down and returning to that under-water state of inertia.
I believe my diagnosis is finally safe. And the medications I take are safe (enough) and effective. I don't think about having narcolepsy most days. Raising my children, getting my degree, divorce, custody battle and career success would not have been possible. I would like to think that my relationship with The Saint (my spouse and the most patient woman on the planet) would have been possible but not being alert makes many relationship problems thornier and makes simple communication harder. So, being awake also gave me back love and romance, too.
I have narcolepsy and because of the miracle of modern medicine, I have lived a rich life. My current neurologist says a narcolepsy diagnosis usually take 20 years. I credit my stubbornness and hunger for a better life with my early diagnosis. I love being awake and alert. I also still love drifting off to sleep.
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