Narcolepsy Gave Me Disturbing Spiritual Visions

Late one night almost 19 years ago, I had a spiritual experience. I was lying awake to pray about the worsening abuse and alcoholism in my home life and the anger I felt, which was both my shield and poison. As I prayed that God would let me keep my anger to protect myself from fear and pain, I felt God tell me to release it. I argued with God for a while, and felt a heavy, raging sensation in my chest, right over my heart. Then I felt God say “enough,” reach into my chest, and pull. The anger flew out of me into the night.

I was about 13 years old. This single moment couldn’t undo a whole childhood of domestic violence, but it changed me forever. It helped free me from spending my life in a haze of fury. Although I still had to live with the abuse and felt scared and angry at times, it was the starting point for my healing.

In the fundamentalist and evangelical churches in which I was raised, my spiritual experience would be called a miracle. It felt miraculous at the time. It still does. But that narrative is complicated by the fact that I was diagnosed with narcolepsy in my twenties.

Unbeknownst to me, hallucinations and sleep paralysis are two of the most common narcolepsy symptoms. A common feature of sleep paralysis is a heavy feeling in the chest, like I had as I argued with God. Together, sleep paralysis and hallucinations can create episodes so intense and lifelike that they feel supernatural. They also happen to be my strongest symptoms, and they usually occur when I am in the twilight between being awake and sleep, as I was when I had my spiritual experience.

When many people think of narcolepsy, they envision someone randomly dropping into a deep sleep. Movies and TV shows sometimes play this misconception for laughs like the Narcoleptic Argentinean in Moulin Rouge! passing out in the middle of conversations and tumbling down stairs. When my sleep doctor first diagnosed me, I balked because my symptoms didn’t conform to the depictions of narcolepsy I’d seen. I’ve experienced random, oppressive daytime sleepiness since adolescence—periods when I feel like I’ve taken a couple Benadryl and forgotten—but I’ve never actually lost consciousness or collapsed.

Instead, about five years after my spiritual experience, I had my first visual hallucination. As I dozed before falling asleep, a red Range Rover appeared out of nowhere and sped toward me. It was so vivid that I could see the axles and exhaust in its undercarriage as it ran over me. I bolted up in bed, my heart racing. Terrified, I lay awake for another hour, worrying that I was developing schizophrenia. I prayed it wouldn’t happen again.

But I did begin to have visions regularly, though only at night. I saw a crumpled piece of red ribbon twist over my nose. A six-fingered hand reached down over my bed, and as it grew closer, the pads of its fingers transformed into six bumblebees the size of large rocks.

Sometimes the hallucinations were auditory. I heard noises that sounded like a cartoon monster imitating a microwave, and crashes that didn’t happen. I once woke up my husband because I thought his iPod was playing a slow pop song on his nightstand, only to find that the music existed only for me.

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These sounds and visions emerge from my hypothalamus, a small structure deep in the brain that regulates sleep, body temperature, and hunger. In a person with narcolepsy, the neurotransmitters responsible for controlling sleep have died, blurring the divide between wakefulness and sleep, dreaming and seeing.

I’m lucky that a sleep doctor correctly diagnosed me with narcolepsy when I first sought help, almost 13 years after my spiritual experience. Although an estimated 200,000 people in the United States have narcolepsy, only 25 percent are diagnosed and receive treatment.

According to Meir H. Kryger, editor of Principles and Practice of Sleep Medicine, doctors are often unfamiliar with sleep disorders and miss the classic symptoms of narcolepsy. About 60 percent of narcolepsy patients are initially misdiagnosed, often with depression but sometimes with schizophrenia, as I had feared. In one case, Kryger had a 12-year-old narcolepsy patient who was admitted to a psychiatric ward where a resident physician thought the pre-teen’s hallucinations indicated schizophrenia. Having once been a young teen with narcolepsy, I can imagine how scary that must have been for the child.

I’m luckier still to live in a time and place where narcolepsy is a recognized disorder. Between my religious upbringing and often-disturbing hallucinations, I understand how easy it would be to blame them on supernatural forces in the absence of medical discovery. Given that I'm a bookish woman who sees things that aren’t there, it probably wouldn’t have taken long for a seventeenth-century cleric to accuse me of being a witch.

Spirituality and narcoleptic hallucinations have a long, intertwined history. Although narcolepsy didn’t exist as a diagnosis during her lifetime, the most famous person in history with narcoleptic symptoms was the Underground Railroad conductor and Civil War scout Harriet Tubman, who believed God spoke to her through her hallucinations. According to historian Milton C. Sernett in Harriet Tubman: Myth, Memory, and History, Tubman said that, during her visions, it felt like her spirit left her body and visited another realm.

Before she escaped slavery, she had a reoccurring out-of-body dream experience in which she flew over “fields, towns, and mountains ‘like a bird,” but a great river or fence would suddenly appear to block her way. Then she saw women dressed all in white reach across the barrier to pull her across. Later in life, she said that when she became free and moved North, she saw some of the same places she had flown over in her dreams, and met some of the same women who rescued her.

“Her religion, her dreams or visions were so bo[u]nd together that nobody, and I certainly should not attempt it, could separate them,” Tubman’s niece wrote.

At the same time, the idea that disabled people have extraordinary or psychic abilities erases the realities and challenges of our conditions. Disability studies scholar Colin Barnes identified this as one type of the Super Cripple stereotype that can create misconceptions that lead to people being denied services they need, or pressured to overcompensate for their disabilities.

In narcolepsy, my complicated understanding of science, health, religion, and personal experience intersect. I know how the disorder works scientifically, and I don’t believe that having hallucinations automatically makes one more enlightened. My pragmatic view is that my spiritual experience was an early symptom of the neurological disorder brewing deep in my brain, mingling with my religious beliefs.

Since becoming pregnant almost three years ago, my narcolepsy symptoms have receded. I no longer have visual hallucinations, and have had only two or three auditory hallucinations. Even my daytime sleepiness has improved significantly. One study has suggested that some narcolepsy symptoms, such as sleepiness and cataplexy, can decrease with age, but it’s unclear if that might apply to all symptoms. Because they’ve mostly been frightening, I’d welcome never having a hallucination again.

But when I remember the hurt and anger that raged inside the child who I was, I find a thread that leads me back to that time of immense spiritual need. I will never know how much of my spiritual experience can be attributed to narcolepsy versus the powers of my own mind, but it seems to me that on that night almost 19 years ago, a miracle and a disorder met at a perfect confluence of science and faith. It seems to me that on that night, I reached out to the divine for help, and the divine reached back through the celestial veil to touch my imperfect mind.

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